emjsmith
03-11-2004, 05:14 PM
Hello, I was reading some of the posts on Neurontin and was wondering if there is anyone who has been on it or is on it with good results? My Doctor just put me on it three days ago and after reading some of the posts I am worried about taking it. So if there is anyone who has had good results please let me know if you could. I would appreciate it so much!!! Thanks for taking the time to read and post. :bouncing:
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momofsix
03-11-2004, 07:56 PM
I just saw a neurologist this week who told us there is no hard clinical evidence that neurontin does anything for nerve pain. He said, unfortunately, these drugs get a "following" among a group of doctors, and everyone sort of blindly follows along. It is the "in" drug at the moment with no evidence it helps at all. Certainly that was my experience. It was a terrible drug for side effects and didn't help in the least.
riceneuroni
03-14-2004, 09:01 AM
Hold on now, NOT true about Neurontin! That drug was a life saver for me. When I was first came down with severely painful neuropathy I was put on Neurontin and it kept the pain at bay in direct proportion to how much I took. I did NOT have the side effects others have had with it such as weight gain. The drug was a miracle drug for me and I had NO SIDE EFFECTS -- NONE -- but I also didn't try to be pain free and take too much. I was content with using a wheelchair and having the medication keep the pain from running out of control. I could tolerate 600 to 900 mg/day well. That's a lot less than most folks say they are trying. I stayed on it for 18 months before I recovered. This drug is helping a lot of people, but like everything else, complainers are the most vocal. Everyone is different and will react differently to drugs. If this one doesn't work, try something else.
P.S. Wonder no further how I came up with the name Riceneuroni :D
P.S. Wonder no further how I came up with the name Riceneuroni :D
daubie
03-14-2004, 09:40 PM
I've been on N for about 2 months. It has helped me, and I also have not had bad side effects. At first (each time I uped the dose) I would feel a little scatterbrained and forgetful, but it only lasted a couple days. I take 900 mg a day for foot pain related to a herniated disc. I feel it has helped a lot. So, that's my experience. If I were you, I'd try it and see. Good luck! BYW, I have not gained or lost any weight with it (I know that was a concern of mine). Take care, ~Daubie
Jennie Coburn
03-15-2004, 07:26 AM
---I have a severe scoliosis and 2 herniated disks and 4 bulging. I was having back discomfort and difficulty walking but nothing I could not tolerate. One morning woke with severe numbness and tingling in hip, lower leg, ankle & foot. Foot and ankle felt like walking on broken glass and the foot had the "tight sock" feeling.
---One of the disks was pressing on the sciatic nerve and maybe other nerves as well. I Was in a great deal of pain. My GP prescribed Neurontin and because of it's description, I didn't take it. Referred to a physiatrist and the first thing she asked was why I was not taking the Neurontin as she felt sure it would help me. I started 300 MGs in morning and 300MGs at bedtime. I can take up to 900 MGs a day, but have not needed to. (Sometimes I take one in the middle of the day, but that is when the weather is changing or I have done more work than I should.) Along with the 300 MG Neurontin I take Vicodin and had immediate good results. That was 2 yrs ago. Nothing has changed as far as the back, disks and nerves, but I am no longer in acute pain unless I do not take the Neurontin. I can always tell when I am late taking it as the crepitious and tight sock feeling start coming back. I still have some pain and discomfort but nothing I can't tolerate with stretching exercises, etc.
My understanding is that Neurontin was only approved for Nerve Pain and some forms of epilepsy, nothing else. The problem seems to be that it is sometimes expected to relieve other symptomes bothering people.
So, it works for me; I hope it will do so for you, if you decide to take it.
Best Wishes,
Jen.........PS/ If you take Neurontin or Vicodin, you MUST EAT something substancial before or immediately after taking. I have accidentally taken it without eating and believe me, that is NOT something you want to do. Also, do not take any pain killers,like Aspirin, Ibuprophen, Vicodine (Prescription med), etc. when taking Neurontin unless your doctor prescribes it to expressly be taken with Neurontin. If you are unsure if something is okay to take, call your doc and get his approval first.
---One of the disks was pressing on the sciatic nerve and maybe other nerves as well. I Was in a great deal of pain. My GP prescribed Neurontin and because of it's description, I didn't take it. Referred to a physiatrist and the first thing she asked was why I was not taking the Neurontin as she felt sure it would help me. I started 300 MGs in morning and 300MGs at bedtime. I can take up to 900 MGs a day, but have not needed to. (Sometimes I take one in the middle of the day, but that is when the weather is changing or I have done more work than I should.) Along with the 300 MG Neurontin I take Vicodin and had immediate good results. That was 2 yrs ago. Nothing has changed as far as the back, disks and nerves, but I am no longer in acute pain unless I do not take the Neurontin. I can always tell when I am late taking it as the crepitious and tight sock feeling start coming back. I still have some pain and discomfort but nothing I can't tolerate with stretching exercises, etc.
My understanding is that Neurontin was only approved for Nerve Pain and some forms of epilepsy, nothing else. The problem seems to be that it is sometimes expected to relieve other symptomes bothering people.
So, it works for me; I hope it will do so for you, if you decide to take it.
Best Wishes,
Jen.........PS/ If you take Neurontin or Vicodin, you MUST EAT something substancial before or immediately after taking. I have accidentally taken it without eating and believe me, that is NOT something you want to do. Also, do not take any pain killers,like Aspirin, Ibuprophen, Vicodine (Prescription med), etc. when taking Neurontin unless your doctor prescribes it to expressly be taken with Neurontin. If you are unsure if something is okay to take, call your doc and get his approval first.
Shirley_I_am
03-15-2004, 01:13 PM
[COLOR=Green][B][I][SIZE=3]Ok, I am a 48 year female, I have neuropathy for nine months now. I tried nuerotin first with a smaller dose(around a 100mgs or less) three times a day, and my doctor increased the dosage up to 300 mgs @ three times a day. Along with the neurotin, I was taking celebrex(200mg) @ 2 times a day for the arthritis in my back and ankle, and 500 mgs of hydrocodone for pain. When the doctor increased my dosage of nuerotin, that's when the problems began. Both of my feet and ankles swelled so bad, that I couldnt even put my shoes on, and it didnt help the neuropathy any at all either. After a couple of weeks off of neurotin, the swelling is completely gone. I dont know if it was the neurotin alone or a bad interaction with the other medications that I'd been taking. Linda, you said that you had side effects from neurotin, just wondering if yours was similar to mine. :confused:
Shirley_I_Am
I just saw a neurologist this week who told us there is no hard clinical evidence that neurontin does anything for nerve pain. He said, unfortunately, these drugs get a "following" among a group of doctors, and everyone sort of blindly follows along. It is the "in" drug at the moment with no evidence it helps at all. Certainly that was my experience. It was a terrible drug for side effects and didn't help in the least.
Shirley_I_Am
I just saw a neurologist this week who told us there is no hard clinical evidence that neurontin does anything for nerve pain. He said, unfortunately, these drugs get a "following" among a group of doctors, and everyone sort of blindly follows along. It is the "in" drug at the moment with no evidence it helps at all. Certainly that was my experience. It was a terrible drug for side effects and didn't help in the least.
emjsmith
03-16-2004, 07:21 PM
I wanted to thank everyone who took the time to read my post and to especially thank the ones who posted. This is such a wonderful site and I am so thankful I found it. You do not get the same response from your Doctor on a medication as you can on this site of actual personal experiences. :angel:
I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:
Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:
Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
snowmelts
03-17-2004, 01:19 AM
I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:
Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
WOW. A single dose of 600 ? MIGHTY good size dose to take all at once as a starter. ONCE A DAY? YEP that would make you tired alrighty. probably would knock me out. Generally the beginning doesage is spread out over 3 or 4 times during the day. If 600 works why double it? I would never take 600 all at once. It wears off in about 5 or 6 hours anyway. I started at 100 mg 2 x a day then went to 3 x a day = 300 total per day.
After a few years I found it was not holding the pain too well so we upped it to "work up to " 200 mgs 4 x a day = 800 total. I took that dose about 2 years.. but I think I can use less again so I'm "working my way" down again..
Currently I take 200 in the morning then twice during the day ( at least 4 or 5 hours between doses) I take 100 and then at bedtime I take 200 again. This brings my grand total for the entire day to only 600. This is working OK for me. Some days I only take a total of only 500. Neurontin doesn't make me sleepy exactly but it definately does put a big damper on my energy level..but so did pain. Yes, I get some ankel swelling.
The instructions for Neurontin on my perscription bottle do not mention food. I do not purposely eat when I take it and that dosen't seem to make a diff to me. It does say to see how your body handels the medication before driveing or operating machineary because it may make you drowsey or dizzy and to NOT take antiacids within 2 hours of the meds. It also says to wear an ID tag.
(I switched TO Neurontin in the first place because I was taking Tegretol and after 7 or 8 years it was keeping me totally sleepy. Dr even had me do a Sleep Apnea test. Test came back fine so we knew it was just a side effect of the meds. He then took me off Tegretol and put me on Neurotin instead. I DID have instructions on the Tegretol perscription bottle to eat with it.)
I don't know anything about Vicodin or Zoloft.
Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
WOW. A single dose of 600 ? MIGHTY good size dose to take all at once as a starter. ONCE A DAY? YEP that would make you tired alrighty. probably would knock me out. Generally the beginning doesage is spread out over 3 or 4 times during the day. If 600 works why double it? I would never take 600 all at once. It wears off in about 5 or 6 hours anyway. I started at 100 mg 2 x a day then went to 3 x a day = 300 total per day.
After a few years I found it was not holding the pain too well so we upped it to "work up to " 200 mgs 4 x a day = 800 total. I took that dose about 2 years.. but I think I can use less again so I'm "working my way" down again..
Currently I take 200 in the morning then twice during the day ( at least 4 or 5 hours between doses) I take 100 and then at bedtime I take 200 again. This brings my grand total for the entire day to only 600. This is working OK for me. Some days I only take a total of only 500. Neurontin doesn't make me sleepy exactly but it definately does put a big damper on my energy level..but so did pain. Yes, I get some ankel swelling.
The instructions for Neurontin on my perscription bottle do not mention food. I do not purposely eat when I take it and that dosen't seem to make a diff to me. It does say to see how your body handels the medication before driveing or operating machineary because it may make you drowsey or dizzy and to NOT take antiacids within 2 hours of the meds. It also says to wear an ID tag.
(I switched TO Neurontin in the first place because I was taking Tegretol and after 7 or 8 years it was keeping me totally sleepy. Dr even had me do a Sleep Apnea test. Test came back fine so we knew it was just a side effect of the meds. He then took me off Tegretol and put me on Neurotin instead. I DID have instructions on the Tegretol perscription bottle to eat with it.)
I don't know anything about Vicodin or Zoloft.
smooth69
03-17-2004, 11:54 AM
My Peripheral Neuropathy is caused by advanced HIV/AIDS infection. That is to say the virus and not the HAART medications I take. The PN affects my feet. I have no reflexes in my ankles. And lately I have experienced some tingling in my pelvic area. I have been taking Neurontin for about two years. My dosage is 600mg in the morning, 300mg at Noon and 600mg in the evening; 1500mg per day. For me it takes the "edge" off and allows me to walk. I'm pretty concerned about the migration to my pelvic area and the possibility of erectile dysfunction in the future.
Kathim
03-18-2004, 12:22 PM
I wanted to thank everyone who took the time to read my post and to especially thank the ones who posted. This is such a wonderful site and I am so thankful I found it. You do not get the same response from your Doctor on a medication as you can on this site of actual personal experiences. :angel:
I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:
Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
undefinedundefinedundefined
Hi............I have not been here in a while to post but will add my two cents.
I have peripheral neuropathy due to Lupus and I ahve been on Neurontin for 6 months. I was started out at 100 at night then upped to 100 in morn and night then 100 3 x day....then 200 3 x day........then 300 3 x day.......now 400 3 x day...............
It has helped me 75 %.............
I dont understand why u r taking such a large dose just at night . I would discuss this with my DR. I think spacing it out makes more sense???? But then I am not a DR so................
yes.........there are side effects and I am not in favor of drugs but PN is sooooooooo bad............there isnt much one can do but submit to "something"
good luck and please post again !!!!!!!!!!!!
kathi
I did start taking the Neurontin at 600mg. before bed. My Doctor wants me to work up to 1800mg. at bed. I also take vicodin along with it. The only side effect so far is just being tired. I read that this goes away in time. Has anyone else had this side effect but faded as you have gotten used to it? I am also on Zoloft and it had the same thing, it made me tired until I got used to it now it doesn't bother me like that. :yawn:
Thank you all again for sharing your experiences with me I will keep you all updated on how I do on the Neurontin and if it works for me. :wave:
undefinedundefinedundefined
Hi............I have not been here in a while to post but will add my two cents.
I have peripheral neuropathy due to Lupus and I ahve been on Neurontin for 6 months. I was started out at 100 at night then upped to 100 in morn and night then 100 3 x day....then 200 3 x day........then 300 3 x day.......now 400 3 x day...............
It has helped me 75 %.............
I dont understand why u r taking such a large dose just at night . I would discuss this with my DR. I think spacing it out makes more sense???? But then I am not a DR so................
yes.........there are side effects and I am not in favor of drugs but PN is sooooooooo bad............there isnt much one can do but submit to "something"
good luck and please post again !!!!!!!!!!!!
kathi
nabil
03-23-2004, 07:37 PM
I have a heriated disk (l5-s1)and as a result i have an acute pain in my left leg. It is the disk fragment sitting on the S1 nerve that caused this pain. Neurontin did not help and nothing did. I used VIOXX and that proved to be the best if used moderatley as it may have side effects. After all i am better but since i have never been to normal sitaution i considered surgery and i will go for micro-disc surgery.
best..
best..
jgm77055
03-23-2004, 10:32 PM
i have been on neurontin for about 6 months now and i can't see any difference, but i am afraid if i get off it the pain will get worse maybe it is helping keep the pain from getting worse
emjsmith
03-24-2004, 01:55 PM
:) Thank you for posting. I also have herniated disks in my lower back I don't know the exact one without looking at my mri results but do not have them in front of me. I two in my lower and one in my neck. I have recently had horrible pain and found out I have also one of my discs causing nerve pain in my lower back. That is why my doctor put me on the neurontin. I was once on vioxx and it made me deathly sick and they worried about internal damage from it. I was mainly writing to say you will be in my thoughts and prayers and to please let me know how your surgery goes. I have been a chicken about surgery so I would like to know if it goes alright. Thank you and take care!!
I have a heriated disk (l5-s1)and as a result i have an acute pain in my left leg. It is the disk fragment sitting on the S1 nerve that caused this pain. Neurontin did not help and nothing did. I used VIOXX and that proved to be the best if used moderatley as it may have side effects. After all i am better but since i have never been to normal sitaution i considered surgery and i will go for micro-disc surgery.
best..
I have a heriated disk (l5-s1)and as a result i have an acute pain in my left leg. It is the disk fragment sitting on the S1 nerve that caused this pain. Neurontin did not help and nothing did. I used VIOXX and that proved to be the best if used moderatley as it may have side effects. After all i am better but since i have never been to normal sitaution i considered surgery and i will go for micro-disc surgery.
best..
emjsmith
03-24-2004, 02:03 PM
After reading everyones posts I am also wondering why I am to take such a large dosage just at night. I am setting up a appointment to talk to her about such. I am still only taking the 600mg. @ night. It helps me sleep for a few hours which is good for me. Thank you for posting and I will update my progress to all the caring people on this site thank you. :angel:
undefinedundefinedundefined
Hi............I have not been here in a while to post but will add my two cents.
I have peripheral neuropathy due to Lupus and I ahve been on Neurontin for 6 months. I was started out at 100 at night then upped to 100 in morn and night then 100 3 x day....then 200 3 x day........then 300 3 x day.......now 400 3 x day...............
It has helped me 75 %.............
I dont understand why u r taking such a large dose just at night . I would discuss this with my DR. I think spacing it out makes more sense???? But then I am not a DR so................
yes.........there are side effects and I am not in favor of drugs but PN is sooooooooo bad............there isnt much one can do but submit to "something"
good luck and please post again !!!!!!!!!!!!
kathi
undefinedundefinedundefined
Hi............I have not been here in a while to post but will add my two cents.
I have peripheral neuropathy due to Lupus and I ahve been on Neurontin for 6 months. I was started out at 100 at night then upped to 100 in morn and night then 100 3 x day....then 200 3 x day........then 300 3 x day.......now 400 3 x day...............
It has helped me 75 %.............
I dont understand why u r taking such a large dose just at night . I would discuss this with my DR. I think spacing it out makes more sense???? But then I am not a DR so................
yes.........there are side effects and I am not in favor of drugs but PN is sooooooooo bad............there isnt much one can do but submit to "something"
good luck and please post again !!!!!!!!!!!!
kathi
emjsmith
03-24-2004, 02:12 PM
I know isn't that a huge amount to start out on?!! I have only been taking the 600mg. at night. Instead of the 1800mg. I am suppose to take. I am setting up a appointment to discuss it with her. Also a strange thing has been happening to me. Now I do not always have the best memory same as people in pain all the time I know it's normal. But I feel like I am losing it. I went to the store and had to stand at the counter looking at this cashier and couldn't remember what I was to say. I mean my mind was completely blank and the harder I tried to remember the worse it got. The guy looked at me like I was a crazy person. It has been happening a lot. Has anyone had this kind of a reaction with neurontin. I hope it is the medicine and I am not just losing it. Ha!! Thanks again for all of your support it truly helps!!!! :bouncing:
WOW. A single dose of 600 ? MIGHTY good size dose to take all at once as a starter. ONCE A DAY? YEP that would make you tired alrighty. probably would knock me out. Generally the beginning doesage is spread out over 3 or 4 times during the day. If 600 works why double it? I would never take 600 all at once. It wears off in about 5 or 6 hours anyway. I started at 100 mg 2 x a day then went to 3 x a day = 300 total per day.
After a few years I found it was not holding the pain too well so we upped it to "work up to " 200 mgs 4 x a day = 800 total. I took that dose about 2 years.. but I think I can use less again so I'm "working my way" down again..
Currently I take 200 in the morning then twice during the day ( at least 4 or 5 hours between doses) I take 100 and then at bedtime I take 200 again. This brings my grand total for the entire day to only 600. This is working OK for me. Some days I only take a total of only 500. Neurontin doesn't make me sleepy exactly but it definately does put a big damper on my energy level..but so did pain. Yes, I get some ankel swelling.
The instructions for Neurontin on my perscription bottle do not mention food. I do not purposely eat when I take it and that dosen't seem to make a diff to me. It does say to see how your body handels the medication before driveing or operating machineary because it may make you drowsey or dizzy and to NOT take antiacids within 2 hours of the meds. It also says to wear an ID tag.
(I switched TO Neurontin in the first place because I was taking Tegretol and after 7 or 8 years it was keeping me totally sleepy. Dr even had me do a Sleep Apnea test. Test came back fine so we knew it was just a side effect of the meds. He then took me off Tegretol and put me on Neurotin instead. I DID have instructions on the Tegretol perscription bottle to eat with it.)
I don't know anything about Vicodin or Zoloft.
WOW. A single dose of 600 ? MIGHTY good size dose to take all at once as a starter. ONCE A DAY? YEP that would make you tired alrighty. probably would knock me out. Generally the beginning doesage is spread out over 3 or 4 times during the day. If 600 works why double it? I would never take 600 all at once. It wears off in about 5 or 6 hours anyway. I started at 100 mg 2 x a day then went to 3 x a day = 300 total per day.
After a few years I found it was not holding the pain too well so we upped it to "work up to " 200 mgs 4 x a day = 800 total. I took that dose about 2 years.. but I think I can use less again so I'm "working my way" down again..
Currently I take 200 in the morning then twice during the day ( at least 4 or 5 hours between doses) I take 100 and then at bedtime I take 200 again. This brings my grand total for the entire day to only 600. This is working OK for me. Some days I only take a total of only 500. Neurontin doesn't make me sleepy exactly but it definately does put a big damper on my energy level..but so did pain. Yes, I get some ankel swelling.
The instructions for Neurontin on my perscription bottle do not mention food. I do not purposely eat when I take it and that dosen't seem to make a diff to me. It does say to see how your body handels the medication before driveing or operating machineary because it may make you drowsey or dizzy and to NOT take antiacids within 2 hours of the meds. It also says to wear an ID tag.
(I switched TO Neurontin in the first place because I was taking Tegretol and after 7 or 8 years it was keeping me totally sleepy. Dr even had me do a Sleep Apnea test. Test came back fine so we knew it was just a side effect of the meds. He then took me off Tegretol and put me on Neurotin instead. I DID have instructions on the Tegretol perscription bottle to eat with it.)
I don't know anything about Vicodin or Zoloft.
emjsmith
03-24-2004, 02:16 PM
Thank you for posting and I am sorry for your pain and condition. You will be in my thoughts and prayers. Let me know how you are doing in the future. Take Care and thanks again!! :wave:
My Peripheral Neuropathy is caused by advanced HIV/AIDS infection. That is to say the virus and not the HAART medications I take. The PN affects my feet. I have no reflexes in my ankles. And lately I have experienced some tingling in my pelvic area. I have been taking Neurontin for about two years. My dosage is 600mg in the morning, 300mg at Noon and 600mg in the evening; 1500mg per day. For me it takes the "edge" off and allows me to walk. I'm pretty concerned about the migration to my pelvic area and the possibility of erectile dysfunction in the future.
My Peripheral Neuropathy is caused by advanced HIV/AIDS infection. That is to say the virus and not the HAART medications I take. The PN affects my feet. I have no reflexes in my ankles. And lately I have experienced some tingling in my pelvic area. I have been taking Neurontin for about two years. My dosage is 600mg in the morning, 300mg at Noon and 600mg in the evening; 1500mg per day. For me it takes the "edge" off and allows me to walk. I'm pretty concerned about the migration to my pelvic area and the possibility of erectile dysfunction in the future.
cdh6663
03-27-2004, 01:04 AM
I know isn't that a huge amount to start out on?!! I have only been taking the 600mg. at night. Instead of the 1800mg. I am suppose to take. I am setting up a appointment to discuss it with her. Also a strange thing has been happening to me. Now I do not always have the best memory same as people in pain all the time I know it's normal. But I feel like I am losing it. I went to the store and had to stand at the counter looking at this cashier and couldn't remember what I was to say. I mean my mind was completely blank and the harder I tried to remember the worse it got. The guy looked at me like I was a crazy person. It has been happening a lot. Has anyone had this kind of a reaction with neurontin. I hope it is the medicine and I am not just losing it. Ha!! Thanks again for all of your support it truly helps!!!! :bouncing:
Hi! Just wanted to let you know that I take 300mg in the morning, evening and night (1800mg) per day. I have PN. I have all the horrible symptoms of PN. :jester: They drive me nuts. I go to physical therapy, visit a chiropractor, who helps a lot, but what helps the most is neurontin. I can't think straight or talk right. I stutter and stammer and forget from one minute to the next, but if I forget a dose of the neurontin I know it. I rather the annoying side effects than the pain and tingling and feeling like I'm walking on a matress!! :rolleyes: So let people think your nuts or on drugs (which you are) because you have some problems speaking or remembering, but if it helps thats all that matters! :wave: Good luck and feel better!! Char
Hi! Just wanted to let you know that I take 300mg in the morning, evening and night (1800mg) per day. I have PN. I have all the horrible symptoms of PN. :jester: They drive me nuts. I go to physical therapy, visit a chiropractor, who helps a lot, but what helps the most is neurontin. I can't think straight or talk right. I stutter and stammer and forget from one minute to the next, but if I forget a dose of the neurontin I know it. I rather the annoying side effects than the pain and tingling and feeling like I'm walking on a matress!! :rolleyes: So let people think your nuts or on drugs (which you are) because you have some problems speaking or remembering, but if it helps thats all that matters! :wave: Good luck and feel better!! Char
little726
03-27-2004, 11:18 AM
Hi, emjsmith. I've been taking Neurontin for 4 weeks now. I started out taking 300mg. a day then increased it to 600mg. a day, one week later. It made me very, very depressed. I also had trouble understanding what people were saying to me. It's like everything they said to me went right through my head. I also had trouble with numbers. I could be looking at a set of numbers and not repeat them right. I have not been myself since i started taking it. I've decreased it to 300mg. a day till i see the doctor on Monday. I'm feeling pretty good today, since only taking the one pill. I'm going to tell my doctor i want off of it. Period! Good luck, Robin
emjsmith
03-27-2004, 01:19 PM
Hi Robin, thank you for posting. I am still on the 600mg. at night. I have not increased my dose any further. I have not had the depression like you have had but I am also on Zoloft which is a antidepressant that I have been on for almost eight years so that may help with it. If the neurontin helps you at all maybe your doctor could put you on a antidepressant along with the neurontin. Just a thought. But I am having a lot of your other symptoms. I will read something and have to reread it four or five times to understand it. I will also be in a conversation and forget what I am saying it is like I can't find my words. I also have woken up with headaches everyday since I have been on it. I thought once I would get used to it I wouldn't have the headaches anymore I hope anyway. It has helped with the pain it is just the blank thoughts that are driving me crazy. Ha!! Thanks again and let me know what your doctor decides to do. Take Care, Melody :wave:
Hi, emjsmith. I've been taking Neurontin for 4 weeks now. I started out taking 300mg. a day then increased it to 600mg. a day, one week later. It made me very, very depressed. I also had trouble understanding what people were saying to me. It's like everything they said to me went right through my head. I also had trouble with numbers. I could be looking at a set of numbers and not repeat them right. I have not been myself since i started taking it. I've decreased it to 300mg. a day till i see the doctor on Monday. I'm feeling pretty good today, since only taking the one pill. I'm going to tell my doctor i want off of it. Period! Good luck, Robin
Hi, emjsmith. I've been taking Neurontin for 4 weeks now. I started out taking 300mg. a day then increased it to 600mg. a day, one week later. It made me very, very depressed. I also had trouble understanding what people were saying to me. It's like everything they said to me went right through my head. I also had trouble with numbers. I could be looking at a set of numbers and not repeat them right. I have not been myself since i started taking it. I've decreased it to 300mg. a day till i see the doctor on Monday. I'm feeling pretty good today, since only taking the one pill. I'm going to tell my doctor i want off of it. Period! Good luck, Robin
katkat
04-11-2004, 12:16 PM
I had foot surgery that left me with nerve damage. I had severe nerve pain. I would wake in the night with something that felt like a hot curling iron was laid on my foot, boy, that will wake you up. I also had hot slicing pain across my foot as well as hot needle sticking. I started on neurontin just taking it at night and worked my way up to 1800 mg per day to help keep the dizziness away. I am hear to tell you it does work. They don't understand how it does, but it does work. I've been slacking off on mine and I can feel the burning coming back. I was hoping it was gone by now and I could stop taking it, but it looks like I have to resume my meds.
good luck.
good luck.
jgm77055
04-12-2004, 03:08 PM
the only thing that helps me is absorbine jr i use the roll on and it numbs the pain in my feet and hands
snowmelts
04-12-2004, 08:29 PM
hey there,
i was diagnosed with tmj, then undiagnosed because my mri of my tm joints came back normal. the biggest problem i've had is HORRIBLE pain deep deep down in my ear. some say it's a symptom of tmj-the "tmj" doc that i have at kaiser says that it isn't, but no one's trying to figure it out.
i went on neurontin last week starting with 300mgs at night. today i took my first one in the morning and i'm zonked out-like i'm afraid to drive. i've heard that this side effect should get better with time. is that true?
i'm finishing my b.a. right now, and studying for the gre-applying for master's programs. does neurontin mess up EVERYONE'S cognitive ability? how long should i try it before i make sure that the side effects are intolerable. i don't have any tests or papers due for the next couple of weeks, but i have a lot of work to do to prepare for the upcoming onslaught of exams and papers!
thanks,
heidi
Well, yes it can effect you cognitive ability for sure. The prescribed 300 mg in one pill is a bit of high starter outer dose. You need to take a smaller dose and work your way up as your system gets more used to it and more able to handel it. The trick is to Take as little as possible to hold the pain.
I request my Dr prescribe my pills in 100 mg pills so I can choose take either one pill (100 mg) or 2 pills (200mg). I've never taken a full 300 mg at once.
I take 200 mg in the AM
100 mg once or twice during the day (at least 4 hours apart)
200 mg at bedtime.
This method works well for me.
This is after years of useing it.. not my start out dose.
I relieze you have already purchased your 300 mg pills so why not just try a third a pill? You can open the capsule and dump a third of it into a tiny bit of water and drink it easily. Therefore I see no point in taking it in a large dose once a day. Neurontin wears off in about 4 to 6 hours and then you can take another tiny dose. Call your Dr and discuss it. I'm sure he/she will agree to let you try this tiny dose step up method. Alwasy disscuss such idea with your DR. We are not Dr's here.. just experienced users.
i was diagnosed with tmj, then undiagnosed because my mri of my tm joints came back normal. the biggest problem i've had is HORRIBLE pain deep deep down in my ear. some say it's a symptom of tmj-the "tmj" doc that i have at kaiser says that it isn't, but no one's trying to figure it out.
i went on neurontin last week starting with 300mgs at night. today i took my first one in the morning and i'm zonked out-like i'm afraid to drive. i've heard that this side effect should get better with time. is that true?
i'm finishing my b.a. right now, and studying for the gre-applying for master's programs. does neurontin mess up EVERYONE'S cognitive ability? how long should i try it before i make sure that the side effects are intolerable. i don't have any tests or papers due for the next couple of weeks, but i have a lot of work to do to prepare for the upcoming onslaught of exams and papers!
thanks,
heidi
Well, yes it can effect you cognitive ability for sure. The prescribed 300 mg in one pill is a bit of high starter outer dose. You need to take a smaller dose and work your way up as your system gets more used to it and more able to handel it. The trick is to Take as little as possible to hold the pain.
I request my Dr prescribe my pills in 100 mg pills so I can choose take either one pill (100 mg) or 2 pills (200mg). I've never taken a full 300 mg at once.
I take 200 mg in the AM
100 mg once or twice during the day (at least 4 hours apart)
200 mg at bedtime.
This method works well for me.
This is after years of useing it.. not my start out dose.
I relieze you have already purchased your 300 mg pills so why not just try a third a pill? You can open the capsule and dump a third of it into a tiny bit of water and drink it easily. Therefore I see no point in taking it in a large dose once a day. Neurontin wears off in about 4 to 6 hours and then you can take another tiny dose. Call your Dr and discuss it. I'm sure he/she will agree to let you try this tiny dose step up method. Alwasy disscuss such idea with your DR. We are not Dr's here.. just experienced users.
Kathim
05-18-2004, 06:44 PM
undefinedundefinedundefined
Hi........
I have sensory PN due to Lupus........and yes have been sick with the autoimmune lupus and went undiagnosed for approximately 7 years ......
Would possibly IVIG therapy help your type of PN ???????
That is my next move.
Kathi
Hi........
I have sensory PN due to Lupus........and yes have been sick with the autoimmune lupus and went undiagnosed for approximately 7 years ......
Would possibly IVIG therapy help your type of PN ???????
That is my next move.
Kathi
momofsix
05-18-2004, 07:01 PM
Could you explain what IVIG therapy is? Thanks.
riceneuroni
05-19-2004, 07:55 AM
Davesfancy,
I have studied for my masters and I have been on Neurontin, and I would NOT combine them. While on Neurontin. I had fewer and less severe side effects than most folks have reported here on healthboards. I think everyone has reported it messing up their memory. I was on it 18 months for 300 to 600 mg/night, and I have been off it since last October. My memory has not fully recovered. It has improved since getting off, but it still is impaired. I also had to go on medication for anxiety in January - something I have never had - and is quite significant for me without medication. I personally think it is a result of the Neurontin. Good luck.
I have studied for my masters and I have been on Neurontin, and I would NOT combine them. While on Neurontin. I had fewer and less severe side effects than most folks have reported here on healthboards. I think everyone has reported it messing up their memory. I was on it 18 months for 300 to 600 mg/night, and I have been off it since last October. My memory has not fully recovered. It has improved since getting off, but it still is impaired. I also had to go on medication for anxiety in January - something I have never had - and is quite significant for me without medication. I personally think it is a result of the Neurontin. Good luck.
catbirdpondlady
05-25-2004, 07:02 PM
Wow, I can see the "Neurontin Controversy" continues! It has its good side and it's down side. Some people can take mega doses without any side effects (I'm one of those people) and other people cannnot tolerate it at all. It has helped my husband's CIDP and he hasn't had any problems with the med either.
I haven't read through this board extensively, but are most people aware that neuropathies are a sign that there is something else wrong? Like, when you have a fever, there is a reason. If you have neuropathies there is a reason. It is important that the underlying problem is addressed as well as the symptoms of the neuropathy treated. My neuropathies are secondary to MS. Unfortunately I can no longer take any of the meds for MS due to other system failure. Fortunately, I take IVIG every 4 wks for CVIDS and that is now thought to help the MS, too. IVIG is intervenous Gamma Globulin, a product made from plasma pooled from a large number of people. It helps replace the globulin that is missing due to disease or chemo. And, Neurontin is just one of the meds that help me and my husband get through the daily grind of living with some "strange diseases".
:wave: Penny
I haven't read through this board extensively, but are most people aware that neuropathies are a sign that there is something else wrong? Like, when you have a fever, there is a reason. If you have neuropathies there is a reason. It is important that the underlying problem is addressed as well as the symptoms of the neuropathy treated. My neuropathies are secondary to MS. Unfortunately I can no longer take any of the meds for MS due to other system failure. Fortunately, I take IVIG every 4 wks for CVIDS and that is now thought to help the MS, too. IVIG is intervenous Gamma Globulin, a product made from plasma pooled from a large number of people. It helps replace the globulin that is missing due to disease or chemo. And, Neurontin is just one of the meds that help me and my husband get through the daily grind of living with some "strange diseases".
:wave: Penny
MISTAKE
06-03-2004, 01:03 AM
I'm on neurontin for nerve damage due to surgical error. Originally on a low dose - 900 mg - now increased to 1600 mg/day. It made me sleepy as my body adjusted to it. I feel my memory isn't as good, but not bad. As I get more active it isn't anywhere close to controlling the pain though. From what I understand you have a 50/50 chance of neurontin working for you. (A little history - It was originally created for seizures and they found it was useful with diabetic peripheral neuropathy.) good luck.
franmyers
06-03-2004, 11:14 AM
I take 1600mg of Neurontin four times a day. I have taken it for over a year now. It really helped for the first year but now my back and neck pain is getting worse. I have exhibited no adverse effects except for when I first started taking it. I was scatter brained as well. And not to mention the pharmacist thought I wrote my own script since it was so high and then argued with my doctor about it.
Try it at least a small dose and see what you think.
Fran
Try it at least a small dose and see what you think.
Fran
catbirdpondlady
06-04-2004, 08:16 PM
Why are ***re all ** *** little stars showing up instead ** words? Now, I know that isn't *** Neurontin! :jester:
sugarleaf
06-04-2004, 10:36 PM
I have been taking 2400 mg of Neurontin and 50mg of amitryptiline for some years to help with my idiopathic sensory PN. It is certainly true in my case as in many others that the main side effects of Neurontin are memory problems and fatigue. Some days are better than others but if I forget one dose (600 in four doses) I get an increase in my painful feet. It really depends on how much it effects you, how much relief it gives you and then striking the best deal for yourself. I also find the antidepressant, amitryptiline helps with sleep (not always at night though!). :yawn:
Jake
Jake
texashowdee
06-09-2004, 09:56 PM
:wave: Hey, I love Neurontin although it took some getting use to the drug. It made me dopey for several weeks until I got use to the drug. It was a small price to pay for the help with pain. It not only helps with my TN an ATN; it also helps me so much for the back pain and sacroillic pain. It is my wonder drug and Iwould not go anywhere without it. Hang in there in the getting use to it phase. My doctor said he had to quit his practice due to severe back pain for three years untill his doctor put him on Neurontin. He knows what it can do. I realize there are lots of contreversy on this medication but feel my life with pain control are worth the concern. Remember there are many things in life when we first find out about them, it takes time to validate. I do not want to wait in pain while there is something out there that helps. My family doctor tired to go off the Neurontin slowly and found he could not continue at being a doctor due to pain so he slowly went back on it. If someone tried to take it away from me I would fight him with all I had in me. So good luck with the Neurontin and do not give up on it or yourself... Dee
Ann123
06-09-2004, 11:48 PM
Why are ***re all ** *** little stars showing up instead ** words? Now, I know that isn't *** Neurontin! :jester:
oh good you see them too. thought my cmmputer had a virus. :eek:
oh good you see them too. thought my cmmputer had a virus. :eek:
delrae4753
06-10-2004, 12:45 PM
I have been on neurotin a little over 2 years at first my pain was so unbearable now that i have been on neurotin for a while over 2 years i have has wonderful results with this aside from the initial effects of being really sleepy it has been a god send for my neuropathy oh yes i still have my days but they are few and far between i highly reccomment this medication give it a try for 6 months and see how you ffeel then. good luck
riceneuroni
06-11-2004, 05:51 AM
I'm glad to see others have had a good response on their neuropathy from Neurontin. For the longest time I was the only one posting who had anything good to say about it. I'm glad this thread got started. Has anyone else had any residual effects after getting off? I think my anxiety and continuing (and worsening) memory problems are from being on Neurontin. I was on 600 mg/night for only 18 months (I think that's right, but I can't remember for sure any more). Now I'm on Zoloft and can't get off it without the anxiety going through roof and the memory getting so bad it puts my job in jeopardy.
sugarleaf
06-11-2004, 09:26 AM
Riceneuroni
May I ask if you have a neuropathy why you were put on such a low dose of Neurontin, why you were taken off it and why you were put on Zoloft?
Also how is your neuropathy now and are you taking anything else for it?
Jake
May I ask if you have a neuropathy why you were put on such a low dose of Neurontin, why you were taken off it and why you were put on Zoloft?
Also how is your neuropathy now and are you taking anything else for it?
Jake
catbirdpondlady
06-11-2004, 10:30 AM
Good question, Jake. I was wondering the same thing. I have never heard of anyone with residual problems from neurontin. The known pharmacokinetics (how it is metabolized in your body, etc.) does not lend itself to that kind of problem. The half life of the medication is only 5-7 hrs and it circulates in your blood stream basically bound to nothing....meaning that it really isn't metabolized. Since it is excreted by the kidney, I suppose that if you had kidney problems the excretion might be slowed down, but not to such a point that it would cause you residual problems.
I would talk to my doc about the problems that you are having. You know, neuropathies are only a sign that there is something else wrong. Do you know for sure the cause of your neuropathy. Anxiety and memory problems can be caused by a variety of things. Check it out, and good luck. I know how frustrating that those kind of problems are. I have MS and live with panic attacks and decreased cognitive ability every day. It's not a problem, just part of my life. I'm happy to be as healthy as I am!!
Love,
Penny
I would talk to my doc about the problems that you are having. You know, neuropathies are only a sign that there is something else wrong. Do you know for sure the cause of your neuropathy. Anxiety and memory problems can be caused by a variety of things. Check it out, and good luck. I know how frustrating that those kind of problems are. I have MS and live with panic attacks and decreased cognitive ability every day. It's not a problem, just part of my life. I'm happy to be as healthy as I am!!
Love,
Penny
sugarleaf
06-11-2004, 12:18 PM
Hi Penny
Everything you say is right on the mark. I hope riceneuroni replies.
Also well done Penny. You obviously have great courage and are a credit to all who suffer. :)
Jake
Everything you say is right on the mark. I hope riceneuroni replies.
Also well done Penny. You obviously have great courage and are a credit to all who suffer. :)
Jake
hatcher
06-11-2004, 09:48 PM
I have been on Neurontin for almost 3 months due to a pinched nerve in my neck. The pain in my shoulder blade was horrendous for the first two weeks (like a burning cauldron of tar). My doctor put me on Neuronton 300 mg twice a day after the first two weeks of misery. Although for the first week, I only took it at night - to build up my tolerance I guess. Neurontin is the only thing that controls the nerve pain. Massive amounts of Motrin and Vicodin didn't come close to helping. I quit the Vicodin after a week because I figured out the Neurontin is what was helping. Also, my experience was that Vicodin and Neurontin do not work well together. When I would take them together at night, I would have TERRIBLE nightmares. If I separated them by 4 hours, then no problem. Even though I greatly appreciate its effectiveness with nerve pain, I do have an increased sense of memory problems and fatigue. Although with the pinched nerve I am not able to exercise as much as I used to which could be part of the problem too. I will probably try to wean myself off it as soon as I can. But I don't want pain either. :yawn:
texashowdee
06-11-2004, 11:30 PM
:wave: My doc gave me vicoden for pain that was not relieved by me litterly getting off my feet on a regular basis. The vicoden was for the back pain. I have used four pills in six months. This is not because I would have loved to use it more often to control breakthrough pain but because I am very aware of what I can and can not stand. I rest often during the day to control the bad pain. LIke everyone I have good and bad days and I just try to accept it the best I can. The Neurontin saves me and allows me to sleep most nights and to function in a limited way during the day. It is sometimes so hard to stay sane with so many problmes hitting me at once but I do try. I have seen so many worse than me.
When My doc said he thought the pain in my jaw and face was TMj, I said doc I to not like that diagnosis. He got very quiet and then said ok.... my friend you now have cancer. Then he said does it put some prespective on the TmJ. He was right you know. It changes the way you feel right away. I am so gald I have such a careing doc. that knows what he needs to say to me to keep me for feeling sorry for myself. Dee
When My doc said he thought the pain in my jaw and face was TMj, I said doc I to not like that diagnosis. He got very quiet and then said ok.... my friend you now have cancer. Then he said does it put some prespective on the TmJ. He was right you know. It changes the way you feel right away. I am so gald I have such a careing doc. that knows what he needs to say to me to keep me for feeling sorry for myself. Dee
riceneuroni
06-12-2004, 05:27 AM
You're right, Dee. He is a gem.
To respond to Sugarleaf and Catbirdpondlady (great names!),
"May I ask if you have a neuropathy why you were put on such a low dose of Neurontin, why you were taken off it and why you were put on Zoloft?
Also how is your neuropathy now and are you taking anything else for it?"
The original diagnosis was RSD in one foot after a minor injury to the shin.
To respond to Sugarleaf and Catbirdpondlady (great names!),
"May I ask if you have a neuropathy why you were put on such a low dose of Neurontin, why you were taken off it and why you were put on Zoloft?
Also how is your neuropathy now and are you taking anything else for it?"
The original diagnosis was RSD in one foot after a minor injury to the shin.
sugarleaf
06-12-2004, 11:03 AM
riceneuroni – great name too!! ;)
I am glad to hear from you again because Neurontin and Zoloft are such different drugs. It would seem to me that you had a bad reaction to coming off Neurontin which I have not heard of or read before. Usually it is when you are on that you might get adverse side effects.
Zoloft is an SSRI drug for depression as I am sure you know and that would account for you feeling better mentally.
[ removed ]
Jake
I am glad to hear from you again because Neurontin and Zoloft are such different drugs. It would seem to me that you had a bad reaction to coming off Neurontin which I have not heard of or read before. Usually it is when you are on that you might get adverse side effects.
Zoloft is an SSRI drug for depression as I am sure you know and that would account for you feeling better mentally.
[ removed ]
Jake
riceneuroni
06-12-2004, 08:35 PM
Thanks for the info, Sugarleaf. [ removed ] I hope you get to feeling well and have a great weekend. That goes for everyone else reading too.
sugarleaf
06-12-2004, 09:38 PM
riceneuroni
I am afraid the administrator has blocked out the word I suggested to you. I assume this is for copyright reasons. Just take my word for it I don’t post to trick people. I really want to help.
Jake
I am afraid the administrator has blocked out the word I suggested to you. I assume this is for copyright reasons. Just take my word for it I don’t post to trick people. I really want to help.
Jake
codycoco
06-12-2004, 11:44 PM
[FONT=Comic Sans MS]xxx[SIZE=2][SIZE=2]xxx[COLOR=lndigo]xxx[B]xxx I have been on neurontin since 1997 and I thought it was helping me too...until i tried to lower my dose or could'nt afford it when I didnt have insurance. I soon realize (and so did the FDA) that all the pain, anxiety, weight gain, short term memory loss, fevers/chills, suicidal thoughts and the list go's on and on, they were all side effects from Neurontin. The side effects were always there but I thought it was me not being able to handle the pain through the years and all the shoulder surgeries, the 4 bulging disc in my neck. I thought it was all me!!! But I WAS WRONG........ I wanted to let Neurontin users know (if you don't already) that there has been a major recall on the drug Neurontin(gabapentin). The company Pfizer Inc. has just pleaded guilty to a two count criminal information charging the company with violating the FDA with misbranding Neurontin. The company has also been sentenced to pay a $240 million criminal fine, amounting to the second largest criminal fine in a health care fraud prosecution. Up to 40 percent of all prescriptions written every year (I personaly think that percentage is low) are for off-lable purposes, but Pfizer's strategic marketing plans has shown that Neurontin was aggressively marketed to treat things not FDA approved. This off-lable promotion is illegal and a company must state its intended use of a drug in a new drug application to the FDA in order to push it for other uses. Pfizer was illegally promoting Neurontin for at least 11 off-lable uses, the illegal corporate creation of a blockbuster drug discussed how pfizer was able to use a loophole to expand the uses of neurontin. This makes me scared and want to think twice about what these drug companies could really be doing to us??? The "illegal and fraudulent promotion scheme" has been putting Neurontin patients at risk for dangerous Neurontin side effects. It has been estimated that 90% of Neurontin's $2.7 Billion in sales during the first year was because of off-lable uses. The company gave doctors extravagant gifts, luxurious vacations, the best cruises and weekends at the wealthest spa's......Just so they can market Neurontin for off-lable uses. I also found out that patients suffering Neurontin side effects may be entitled to legal recourse against the manufacturers/distributors the drug. If Neurontin side effects occurred in a patient who was prescribed Neurontin for an unapproved use, the manufacturers may be especially culpable for negative effects of the drug in non-epileptic patients. Persons with Neurontin side effects should not quit using the drug without first discussing their symptoms with thier doctor. About 3 years ago I contacted PFIZER Inc. and told them I was having trouble paying for (the outragous price-1 month cost me $500- :eek: ) Neurontin out of pocket and I didnt have no insurance at the time. I asked her what would happen if I suddenly just stop taking Neurontin and she just about jumped out of the phone and told me not to stop taking it suddenly because it would have harmful effects. She told me even if I didnt have epilepsy or ever had a seizure, that I could have a seizure or even worse I could die!!!! I freaked out.....I still dont know what will happen if someone stops cold turkey! I have heard so many horror storys it's not even funny! I am only telling you all this because I want people to know what's going on before anyone starts or gets to deep it's so hard to quit this drug. I hope i have in NO-WAY offended anyone that is not my intention, I just want people to know what I have found out and to inform you about the Neurontin Lawsuit. Please check for yourselves and read all you can and get the help you ALL are intitled too!!! I hope this helps alot of you and I truly wish you all good luck :)
:wave: Jammie
P.S. :angel:
I hope I can leave you some sites to go and check out about what's going on with Neurontin? Search through all the site and the links, there is so much good information!
[ removed ]
:wave: Jammie
P.S. :angel:
I hope I can leave you some sites to go and check out about what's going on with Neurontin? Search through all the site and the links, there is so much good information!
[ removed ]
mollybrown
06-13-2004, 04:41 AM
Hi Everyone;
I take Neurotin 600mg 3x a day and Vicodin 4x a day for PN in leg and foot since back surgery 2 months ago today. I have same side effects as everyone else but not to the extreme. I did have 4 weeks of swollen foot and leg but that has finally subsided. Meanwhile NS, GP and Vascular Dr's all got a visit to make sure nothing else was going on. Like I said, swelling has gone now, thank God! I tried to skip a dose before my Vascular appointment so I could have the pain more evident while he examined me. I didn't realize how much the Neurontin was helping! That feeling of cracked glass under my toes and around my ankle and up my shin and in my butt were just horrible! The vicodine helps only with the residual back pain I have from the surgery but does hardly anything for the PN. I found that I can take both prettymuch together, I just wait maybe a half hour between. My memory is not to be trusted (as you all know with Neurontin) so I keep a pad near my meds and write down in two columns the time I take the pills. I then underline the time indicating that I did in fact take that dose. I then write underneath it the next time to take it but don't underline it yet. This way, if I wake up and have pain I only need to look at my little pad and can see when I last took what and when I am suppose to take the next dose. I reach for the med, take it and then underline the time I took it and then write down the next doses time.
I know this sounds like redundant chatter but really, this system has worked well for me and thought sharing it might help some of you who are still homebound and can try it.
I had a 3 level laminectomy and fusion with plates and screws and rods for L4-L5-S1.
So far it's been very promising! My pain was unbelievable at first (in the back) but by the 4th week not so bad with the meds. Now at 8 wks my back only hurts if I stay active on my feet or sitting for too long so I still need to rest every 3-4 hours lying down. The foot & leg pain (and wet sock feeling) is what drives me nuts.
My Dr increased the Neurontin from 300mg 3x a day to 600mg 3x a day after 3 weeks of initially starting it. The first day of 300mg and the first day of 600mg I felt really doped by it with eye pulling and dizziness but it passed in a day or two.
I now feel it is really helping me a lot and do not want to stop it yet. I see my NS on Tuesday to discuss the PN. MRI with contrast did not show nerve problem but He and I know it is from the surgery because it started emmediately after the surgery in the hospital. He had the hospital check me for blood clots in the leg because I was screaming with leg pain. So now at 8 weeks we know it is not vascular (had tests), not anything with the machinery he put in (MRI), I guess on Tuesday we will discuss physical therapy and whatever else can aleviate this nerve problem. In the meantime, I'm sure glad there is a med like Neurontin which goes right to the nerves. The vicodine does not.
I do not have to eat before or after the meds as neither hurts my tummy. (Most other drugs do, like advil or motrin.) Yes, I am a little more ditzy than usual but who cares, I was in so much pain after the surgery I could not believe it!
My system for keeping track of my med times was even helpful when my sister came to town to visit me. She would look at it and know what I took when and what to bring me in my bed.
Even though it has been several of the hardest weeks ever after surgery, I do not regret having it done. I already know I am much better for it. I no longer have my bones rubbing together in my back. And my back is straight again! (My disks had collapsed and my spine was all caved in. Oh, I forgot to mention, when I was been readied for this operation in January, I had an MRI of my entire spine and was told I needed emergency surgery on my C3 as my head was unstable. So I first had cervical surgery laminectomy and fusion with a doner bone and plating, done 2/4/04. I had to wait 7 weeks before they could do the lumbar spine.
All in all, everything is fine (except for this darn PN pain) and I'm glad to have done this, and I'm glad my Dr is prescribing meds that work!
PS Sorry for the length of this! That Neurontin really helps and I'm able to sit this long to type. By the way, to answer codycoco, the paper that your drugist gives you on the meds that tell you about the drug states that Neurontin IS prescribed for Neurapothy pain as well as for seizures.
Be well everyone, as well as you can. But most importantly, try to be happy. Try :o)
I take Neurotin 600mg 3x a day and Vicodin 4x a day for PN in leg and foot since back surgery 2 months ago today. I have same side effects as everyone else but not to the extreme. I did have 4 weeks of swollen foot and leg but that has finally subsided. Meanwhile NS, GP and Vascular Dr's all got a visit to make sure nothing else was going on. Like I said, swelling has gone now, thank God! I tried to skip a dose before my Vascular appointment so I could have the pain more evident while he examined me. I didn't realize how much the Neurontin was helping! That feeling of cracked glass under my toes and around my ankle and up my shin and in my butt were just horrible! The vicodine helps only with the residual back pain I have from the surgery but does hardly anything for the PN. I found that I can take both prettymuch together, I just wait maybe a half hour between. My memory is not to be trusted (as you all know with Neurontin) so I keep a pad near my meds and write down in two columns the time I take the pills. I then underline the time indicating that I did in fact take that dose. I then write underneath it the next time to take it but don't underline it yet. This way, if I wake up and have pain I only need to look at my little pad and can see when I last took what and when I am suppose to take the next dose. I reach for the med, take it and then underline the time I took it and then write down the next doses time.
I know this sounds like redundant chatter but really, this system has worked well for me and thought sharing it might help some of you who are still homebound and can try it.
I had a 3 level laminectomy and fusion with plates and screws and rods for L4-L5-S1.
So far it's been very promising! My pain was unbelievable at first (in the back) but by the 4th week not so bad with the meds. Now at 8 wks my back only hurts if I stay active on my feet or sitting for too long so I still need to rest every 3-4 hours lying down. The foot & leg pain (and wet sock feeling) is what drives me nuts.
My Dr increased the Neurontin from 300mg 3x a day to 600mg 3x a day after 3 weeks of initially starting it. The first day of 300mg and the first day of 600mg I felt really doped by it with eye pulling and dizziness but it passed in a day or two.
I now feel it is really helping me a lot and do not want to stop it yet. I see my NS on Tuesday to discuss the PN. MRI with contrast did not show nerve problem but He and I know it is from the surgery because it started emmediately after the surgery in the hospital. He had the hospital check me for blood clots in the leg because I was screaming with leg pain. So now at 8 weeks we know it is not vascular (had tests), not anything with the machinery he put in (MRI), I guess on Tuesday we will discuss physical therapy and whatever else can aleviate this nerve problem. In the meantime, I'm sure glad there is a med like Neurontin which goes right to the nerves. The vicodine does not.
I do not have to eat before or after the meds as neither hurts my tummy. (Most other drugs do, like advil or motrin.) Yes, I am a little more ditzy than usual but who cares, I was in so much pain after the surgery I could not believe it!
My system for keeping track of my med times was even helpful when my sister came to town to visit me. She would look at it and know what I took when and what to bring me in my bed.
Even though it has been several of the hardest weeks ever after surgery, I do not regret having it done. I already know I am much better for it. I no longer have my bones rubbing together in my back. And my back is straight again! (My disks had collapsed and my spine was all caved in. Oh, I forgot to mention, when I was been readied for this operation in January, I had an MRI of my entire spine and was told I needed emergency surgery on my C3 as my head was unstable. So I first had cervical surgery laminectomy and fusion with a doner bone and plating, done 2/4/04. I had to wait 7 weeks before they could do the lumbar spine.
All in all, everything is fine (except for this darn PN pain) and I'm glad to have done this, and I'm glad my Dr is prescribing meds that work!
PS Sorry for the length of this! That Neurontin really helps and I'm able to sit this long to type. By the way, to answer codycoco, the paper that your drugist gives you on the meds that tell you about the drug states that Neurontin IS prescribed for Neurapothy pain as well as for seizures.
Be well everyone, as well as you can. But most importantly, try to be happy. Try :o)
sugarleaf
06-13-2004, 03:32 PM
Hi codycoco
There has been a lot of discussion on Neurontin and I think it is well known to all users and medical providers that Pfizer got the punishment they deserved for off label recommendations. However there has not been a recall of the drug. Were there to be, the suicide rate would hit the roof and the hospital wards would be full to overflowing with very sick patients. It would in some cases be similar to a sudden withdrawal of morphine from a patient who had been taking it for pain for a length of time.
Neurontin has been a Godsend to many and a nightmare to some. The main problem stems from doctors who prescribe it in ever increasing quantities. Especially to neuropathic patients. I myself have been taking 2400mg of Neurontin for about 2 years after a slow work up. Here in the UK that is the maximum dose. In the US I understand that 3600mg is the accepted max. But having said that I know from people on other websites that the sky is the limit for some doctors. People like mollybrown whos posting follows yours are thankful for the relief the drug brings. With me and many others it just takes the edge off the otherwise unbearable pain.
Doctors must be made aware of the possible side effects of the drug. In my case which it seems is typical, I get memory problems and some degree of fatigue. If after starting with Neurontin the patient feels bad then the doctor shold bring them off whatever dose they are on slowly and prescribe something else. In many cases an antidepressant is prescribed along with it. This seems to be all that is on offer for sufferers like us, which I think is a disgrace. However until something better comes along for many of us, Neurontin is all that is on offer, other of course than narcotics.
Jake
There has been a lot of discussion on Neurontin and I think it is well known to all users and medical providers that Pfizer got the punishment they deserved for off label recommendations. However there has not been a recall of the drug. Were there to be, the suicide rate would hit the roof and the hospital wards would be full to overflowing with very sick patients. It would in some cases be similar to a sudden withdrawal of morphine from a patient who had been taking it for pain for a length of time.
Neurontin has been a Godsend to many and a nightmare to some. The main problem stems from doctors who prescribe it in ever increasing quantities. Especially to neuropathic patients. I myself have been taking 2400mg of Neurontin for about 2 years after a slow work up. Here in the UK that is the maximum dose. In the US I understand that 3600mg is the accepted max. But having said that I know from people on other websites that the sky is the limit for some doctors. People like mollybrown whos posting follows yours are thankful for the relief the drug brings. With me and many others it just takes the edge off the otherwise unbearable pain.
Doctors must be made aware of the possible side effects of the drug. In my case which it seems is typical, I get memory problems and some degree of fatigue. If after starting with Neurontin the patient feels bad then the doctor shold bring them off whatever dose they are on slowly and prescribe something else. In many cases an antidepressant is prescribed along with it. This seems to be all that is on offer for sufferers like us, which I think is a disgrace. However until something better comes along for many of us, Neurontin is all that is on offer, other of course than narcotics.
Jake
roberman
06-19-2004, 08:34 PM
;) I have been taking Neurontin for about a month for nerve pain (I worked up to 300 mg. 3 times a day), and I would say that it helps, but not enough. I am going to ask my Dr. to increase it to 1200 mg. - three times during the day and another 300 mg. at night. At first it made me drowsy and dizzy (to the point of running into things), but the dizziness subsided and the drowsiness decreased. I sleep better now, but when I wake up early, I have trouble going back to sleep. I can tell when it's time for another dose of Neurontin, since the pain increases. I am also taking Norpramin, which helps, but is much less effective than Neurontin. Sometimes I still take Vicodin, a half pill at a time (which offers the best relief of all, with one side effect - constipation - too bad the Drs. are so reluctant to prescribe it), but that is mostly due to root canals which are still painful (another story!). So I am positive about Neurontin, since I appreciate any pain relief.
apinecone
06-20-2004, 03:40 AM
I wish I'd have seen this thread before I took Neurontin. Bad news. Long story short, it seriously riled up my auto-immune system [hyper-]sensitivities, eg strep, staph, etc (PANDAS). Pretty much all the negative side-effects, including resurgence of tics, which my doc was surprised about because she said it was supposed to do the opposite. But N apparently rebalances the biochems that happen to trigger tics that are common with PANDAS/ADD, OCD and TS primarily. I think it was being Rx'd for anti-seizure but it was like walking into a beehive for me; fortunately, I got really drowsy, although that doesn't go over big at work. Good luck to you all around, and thanks for providing all this info; it's really hard to get a victim's eye view of meds like this.
canadachik
06-20-2004, 09:49 PM
I just stumbled across this site and am wishing I'd found it sooner!!!!
I have been on neurontin for a year and am not a fan of the drug whatsoever. The specialist I was seeing had me taking 3200 mg per day (two 400mg tables, four times per day). It made me feel zombie-like and I was still in pain! I was positive it wasn't doing anything till I went off of it and started getting killer migraines and I wasn't able to sleep at night. I was talking to someone who told me Pfizer offered doctors money etc. to prescribe their drug. That didn't really surprise me as the specialist I went to would prescribe NOTHING else to me BUT neurontin. When there are so many drugs out there why limit me to one?!
I have been on neurontin for a year and am not a fan of the drug whatsoever. The specialist I was seeing had me taking 3200 mg per day (two 400mg tables, four times per day). It made me feel zombie-like and I was still in pain! I was positive it wasn't doing anything till I went off of it and started getting killer migraines and I wasn't able to sleep at night. I was talking to someone who told me Pfizer offered doctors money etc. to prescribe their drug. That didn't really surprise me as the specialist I went to would prescribe NOTHING else to me BUT neurontin. When there are so many drugs out there why limit me to one?!
sugarleaf
06-21-2004, 09:33 PM
Hi canadachik
What have you been diagnosed with? Have you had tests and if so what did they show?
I have peripheral neuropathy and take Neurontin 2400mg per day and find it takes the edge of my pain. However this is not always the case, there are as you say other drugs.
I await to hear from you. In the meantime take care of yourself. :)
Jake
What have you been diagnosed with? Have you had tests and if so what did they show?
I have peripheral neuropathy and take Neurontin 2400mg per day and find it takes the edge of my pain. However this is not always the case, there are as you say other drugs.
I await to hear from you. In the meantime take care of yourself. :)
Jake
canadachik
06-21-2004, 10:12 PM
Hi Jake nice to meet you :wave:
I haven't really had a clear diagnosis as to what's wrong with me. The problems in my neck stem from a car accident in 2001 in which I suffered a whiplash plus got smacked up by an airbag in the chest and left shoulder. I've really been given the rounds thanks to the canadian healthcare system. My doctor waited 6 months after the accident before he decided it was time to actually believe I was in pain and do something about it. Other than having X-rays I'd had no other tests up till that point. I actually just posted my story in a thread called "myelomalacia" so it's probably easier for you to read that.
The specialist I was eventually referred to had me use a home traction unit for my neck and he gave me cortisone shots in the neck and shoulder. I really don't know how he remained a "specialist" because he was very old and definetely not at the top of his game. Everytime I went to him he would have me raise the amount of neurontin I was taking until I was at 3200 mg (that's when I told him NO MORE!!!). He tried to do nerve testing on the back of my neck (I forget the technical name) but he told me he couldn't do it because I wouldn't relax enough. I get a tingling pain feeling down my left arm quite often and sometimes it goes into the side of my face. This specialist actually died a couple months ago so I haven't had any doctor since then. I'm thinking it wouldn't be a bad idea to see a neurologist to find out what's really going on. I'm only 21 and I'd rather not live with this problem for the rest of my life!
~Naomi
I haven't really had a clear diagnosis as to what's wrong with me. The problems in my neck stem from a car accident in 2001 in which I suffered a whiplash plus got smacked up by an airbag in the chest and left shoulder. I've really been given the rounds thanks to the canadian healthcare system. My doctor waited 6 months after the accident before he decided it was time to actually believe I was in pain and do something about it. Other than having X-rays I'd had no other tests up till that point. I actually just posted my story in a thread called "myelomalacia" so it's probably easier for you to read that.
The specialist I was eventually referred to had me use a home traction unit for my neck and he gave me cortisone shots in the neck and shoulder. I really don't know how he remained a "specialist" because he was very old and definetely not at the top of his game. Everytime I went to him he would have me raise the amount of neurontin I was taking until I was at 3200 mg (that's when I told him NO MORE!!!). He tried to do nerve testing on the back of my neck (I forget the technical name) but he told me he couldn't do it because I wouldn't relax enough. I get a tingling pain feeling down my left arm quite often and sometimes it goes into the side of my face. This specialist actually died a couple months ago so I haven't had any doctor since then. I'm thinking it wouldn't be a bad idea to see a neurologist to find out what's really going on. I'm only 21 and I'd rather not live with this problem for the rest of my life!
~Naomi
sugarleaf
06-21-2004, 10:50 PM
Glad you posted back Naomi :)
Yes you must see a neurologist as soon as you can get an appointment. You do need nerve conduction tests and I would have thought a further MRI scan. You can’t go on suffering as you are, the longer you leave it the more damage you are probably doing. You also want to make sure that the surgeon (whoever) knows exactly what’s wrong before consenting. A really good neuro should get a good idea of what is wrong. I have just read your other posting and realise just how much you have been thro. Do seek help quickly. You don’t deserve to go on suffering. My advice would be do nothing until you have seen a neuro. :nono:
I take Neurontin 2400mg daily and finds it does help a little. I also take a cocktail of supplements, perhaps you do too. Do let us all know how you get on.
Take care and I hope you soon have less pain :)
Jake
Yes you must see a neurologist as soon as you can get an appointment. You do need nerve conduction tests and I would have thought a further MRI scan. You can’t go on suffering as you are, the longer you leave it the more damage you are probably doing. You also want to make sure that the surgeon (whoever) knows exactly what’s wrong before consenting. A really good neuro should get a good idea of what is wrong. I have just read your other posting and realise just how much you have been thro. Do seek help quickly. You don’t deserve to go on suffering. My advice would be do nothing until you have seen a neuro. :nono:
I take Neurontin 2400mg daily and finds it does help a little. I also take a cocktail of supplements, perhaps you do too. Do let us all know how you get on.
Take care and I hope you soon have less pain :)
Jake
angelwings171
07-14-2004, 07:21 AM
I am recovering from GBS (Guillain Barre Syndrome) and have been taking Neurontin for years now. I am currently on 3200mg (800mgx4). If I have over done it and cause my residuals to flare up then I have been approved to take up to 1600mg more a day.
Neurontin has NEVER caused any ill effects for me. It has done nothing but keep my nerve pain under control. There is nothing more painfull than a nerve "re firing" after being off line for awhile.
As far as Pfizer spending/making alot of money off of this drug, well that is a double edged sword. YES it is expensive if you have no prescription coverage BUT Pfizer does have a program where you can receive this medication and others (including Zoloft) FREE. Yes I said FREE. $600.00 worth of my medicine a month is GIVEN to me by the company that makes it!
Each individual is different. Each persons neuropathy is different. Each person reacts differently to medication. Just because one person had a bad reaction doesn't mean EVERYONE should not take it. To alot of us it has been sent straight from heaven.
There is a reason why POSSIBLE side-effects are listed with your medication. Read them, watch out for the symptoms, if you have them call your doctor ASAP.
Angela
Neurontin has NEVER caused any ill effects for me. It has done nothing but keep my nerve pain under control. There is nothing more painfull than a nerve "re firing" after being off line for awhile.
As far as Pfizer spending/making alot of money off of this drug, well that is a double edged sword. YES it is expensive if you have no prescription coverage BUT Pfizer does have a program where you can receive this medication and others (including Zoloft) FREE. Yes I said FREE. $600.00 worth of my medicine a month is GIVEN to me by the company that makes it!
Each individual is different. Each persons neuropathy is different. Each person reacts differently to medication. Just because one person had a bad reaction doesn't mean EVERYONE should not take it. To alot of us it has been sent straight from heaven.
There is a reason why POSSIBLE side-effects are listed with your medication. Read them, watch out for the symptoms, if you have them call your doctor ASAP.
Angela
Albie
07-15-2004, 01:27 PM
I have been taken Neurontin for a couple weeks now (1200 mg/day) and it has definitly helped the worst of my nerve pain especially the "electric shock" shooting pains with certain movements. Don't get me wrong, it has not eliminated it, but it has reduced it. My only side effect (so far) is insomnia. All the drugs that are supposed to make you drowsy do just the opposite for me.
Now taking Celebrex, Neurontin and 10/650 mg Percocet every 6 hours (another one that keeps me awake). 80% of my constant pain is gone along with the "shooting" pains being dulled and this I can live with till I see my NS in 2 weeks. At that time I will probably be scheduled for ACDF surgery which will hopefully eliminate all (please God) of my pain.
Now taking Celebrex, Neurontin and 10/650 mg Percocet every 6 hours (another one that keeps me awake). 80% of my constant pain is gone along with the "shooting" pains being dulled and this I can live with till I see my NS in 2 weeks. At that time I will probably be scheduled for ACDF surgery which will hopefully eliminate all (please God) of my pain.
KarynLR
07-19-2004, 12:51 AM
I had severe nerve damage during plantar fascial release last summer. I found an orthopaedic surgeon who specializes in foot and ankle disorders, and on 17 May 2004, he operated on my foot, removing a ton of scar tissue, the previously released plantar fascia, and part of the lateral plantar nerve that the podiatrist cut (it was far too damaged to repair). I'm currently in physical therapy, strengthening my leg so I can walk agin (now in a removable cast, still using crutches).
The nerve pain has come back, and my OS has been trying to treat it for a couple months now. We started with Elavil, which made me really jittery, switched to Zoloft, which was almost as bad, then stayed with Vicodin and Ambien to help me sleep at night. Finally, he prescribed me Neurontin right before the 4th of July holiday. We were travelling out of town, so I didn't want to start it in case in made me feel crappy, so I didn't--and then never started! I was a little afraid of how it would make me feel! My PT urged me to start taking it, so on Friday, I did. What is a typical maintenance dose?
I am happy to say that at 100 mg twice a day, I'm not feeling as jumpy as I did with the antidepressants. I'm a little forgetful and sleepy, but mostly sleepy, and I like that at night! I am just concerned that taking the Neurontin covers up the pain... There is potential that a stump neuroma will form from the cut end of the nerve, and if that's the case, I want the neuroma cut out. I do not want to take Neurontin for years to cover it up. My PT thinks that the Neurontin will just help us get farther in therapy for now; helping with the pain so we can do more before I say "Don't touch that part of my foot!" A few other questions: is anyone using anything to supplement the Neurontin? My OS said to use Lidoderm patches directly over the incision, and Vicodin as needed. How about Ambien? I asked his nurse, but she said to call my pharmacy--and they said to call him! I'm not taking it until I get a straight answer though!
The nerve pain has come back, and my OS has been trying to treat it for a couple months now. We started with Elavil, which made me really jittery, switched to Zoloft, which was almost as bad, then stayed with Vicodin and Ambien to help me sleep at night. Finally, he prescribed me Neurontin right before the 4th of July holiday. We were travelling out of town, so I didn't want to start it in case in made me feel crappy, so I didn't--and then never started! I was a little afraid of how it would make me feel! My PT urged me to start taking it, so on Friday, I did. What is a typical maintenance dose?
I am happy to say that at 100 mg twice a day, I'm not feeling as jumpy as I did with the antidepressants. I'm a little forgetful and sleepy, but mostly sleepy, and I like that at night! I am just concerned that taking the Neurontin covers up the pain... There is potential that a stump neuroma will form from the cut end of the nerve, and if that's the case, I want the neuroma cut out. I do not want to take Neurontin for years to cover it up. My PT thinks that the Neurontin will just help us get farther in therapy for now; helping with the pain so we can do more before I say "Don't touch that part of my foot!" A few other questions: is anyone using anything to supplement the Neurontin? My OS said to use Lidoderm patches directly over the incision, and Vicodin as needed. How about Ambien? I asked his nurse, but she said to call my pharmacy--and they said to call him! I'm not taking it until I get a straight answer though!
angelwings171
07-19-2004, 01:44 AM
I have Lidoderm patches and when my leg pain gets to the point that nothing else will help I use them. They are wonderful. It is like a mild anesthetic that soaks into the skin. You normally wear the patch for 12 hrs on and then 12 hrs off. I think it is worth giving it a try.
The neurotin can make you feel hazy and sleepy but these symptoms usually wear off after about a couple of weeks. You are on such a low dose that I don't think it would "cover up" any extra pain you may have in the future.
Angela
The neurotin can make you feel hazy and sleepy but these symptoms usually wear off after about a couple of weeks. You are on such a low dose that I don't think it would "cover up" any extra pain you may have in the future.
Angela
riceneuroni
07-19-2004, 01:57 AM
I never got the feeling Neurontin was covering up the pain like a narcotic does. It's not a narcotic. Keep up on the boards though about the memory issues with Neurontin and consider them. Experiences with Neurontin very greatly from person to person, but the most common thread is memory problems. I've been off Neurontin now since October and am convinced it caused a chemical imbalance making me have terrible anxiety problems that haven't cleared up yet. I'm controlling it with Zoloft. Memory continues to be a problem too. I thought Neurontin was a god-send for my neuropathy, but if these residual effects don't clear up I will forever regret having taken it.
CathyAllyn
07-19-2004, 02:01 AM
:cool: Just consider me another Neurontin user. I've been on it for 4 years now. There once was a time when the pain was so minor I'd forget to take them, now things have progressed to a point that instead of the 3 a day, I take four 400 mg. a day and know when I've forgetten them. This pain is the pits. How do we live like this?? At 54 I'm having a hard time thinking about the future full of such pain, amazing!
Cathy
In So. Calif.
Cathy
In So. Calif.
sugarleaf
07-19-2004, 06:04 PM
Cathy
Don’t worry about your Neurontin dose. I have been taking 2400 mg per day for years which helps a lot with the pain. Some people are taking up to 4000mg per day.
Just ask your doctor to prescribe what you feel you need per day to keep your pain under control. Even looking at the worst scenario for people like you and me (and there are tens of thousands) there are always narcotics such as the Duragesic patch which has given life back to many. However that is a long way ahead if necessary.
Just don’t worry Cathy there is plenty of help and worrying only makes your symptoms worse.
Take care and post whenever you feel you need to talk. :)
Jake
Don’t worry about your Neurontin dose. I have been taking 2400 mg per day for years which helps a lot with the pain. Some people are taking up to 4000mg per day.
Just ask your doctor to prescribe what you feel you need per day to keep your pain under control. Even looking at the worst scenario for people like you and me (and there are tens of thousands) there are always narcotics such as the Duragesic patch which has given life back to many. However that is a long way ahead if necessary.
Just don’t worry Cathy there is plenty of help and worrying only makes your symptoms worse.
Take care and post whenever you feel you need to talk. :)
Jake
sissylisa
07-24-2004, 05:40 AM
hi there, i was on neurotin for 2 years , for the first 2 years it helped a little but then i started gaining wieght and the pain got worse , so my nero put me on trileptal so far so good , dont know how long it will last.
catbirdpondlady
07-24-2004, 04:55 PM
Wow, lots of posts here while I was gone on vacation! That's a good thing! I have just a few comments on a couple things.
Many drugs are prescribed off label (for reasons other than what they were originally OK'd for by the FDA) every day. Neurontin is just the one that comes up on this site. It is not uncommon for a drug that is finally passed the ardous "tests" of the FDA, to be found to be effective for other things along the way. Let's not forget the politics...yes, politics...that pervade the process of getting a drug through the process to a point of marketability. We would be naive to believe that money isn't an influencing factor here. Also, let's not just single out one drug company when it comes to giving "perks" to the doc's who prescribe their meds. It is all of them. As a nurse for 25+ yrs I saw it all of the time. Not only are the doc's given trips, etc., (I NEVER saw $$), the nursing staff is woo'd also. Food, clothes (with logo's on them), etc., etc. At the oncology/hematology center where I go monthly for IVIG (for an immune deficiency disorder) I snuggle under a blanket with a chemo manufacturer's name and logo on it. Here in the good old USA this is just business as usual.
OK, another point: Is it any wonder that the price of meds is so high here. I know that for some meds there is years of research behind their developement....and the drug co passes that on to us. But again, the politics are driving up the cost. The drug co charges more because they can. Point of fact: Drug companies are busy researching drugs that will be very costly to you and me.......cancer drugs, heart drugs, cholesterol modifying drugs, etc. But few are looking for a good antibiotic to use when the common bacterias that we come into contact with on a daily basis become immune to the present antibiotics (because antibiotics are much cheaper). Now don't get me wrong, I am thankful for the spendy drugs...thankful that medicare will pay for my IVIG, Procrit, and at one time Novantrone. I am not thankful that I can not afford to take any of the drugs that slow down the process of MS. The one that I was getting at the MD office ruined my liver. The one I could take at home, I can't afford, and we make $18/mo too much to qualify for help from the drug co. that makes it. I have researched all of my options, and there is nothing I can do. So I go without.
Right now, the neuropathies from the MS have me back to taking increasing doses of neurontin. It is expensive, yes, but both my husband and I have to take it and he has drug coverage under his health plan. Since our doses are variable I share his Rx. and we are getting by like that.
I am interested in checking for prices and pharmacies in Canada that will ship to the US. Any one know anything that they can share?
(Gee, I re-read this and it sounded like I was "not a happy camper". Believe me, that is far from the truth. I'm lovin' life and dealing with things as they come. All in all, I have it good now........it's been lots worse in the past!)
Love to all of you,
Penny
Many drugs are prescribed off label (for reasons other than what they were originally OK'd for by the FDA) every day. Neurontin is just the one that comes up on this site. It is not uncommon for a drug that is finally passed the ardous "tests" of the FDA, to be found to be effective for other things along the way. Let's not forget the politics...yes, politics...that pervade the process of getting a drug through the process to a point of marketability. We would be naive to believe that money isn't an influencing factor here. Also, let's not just single out one drug company when it comes to giving "perks" to the doc's who prescribe their meds. It is all of them. As a nurse for 25+ yrs I saw it all of the time. Not only are the doc's given trips, etc., (I NEVER saw $$), the nursing staff is woo'd also. Food, clothes (with logo's on them), etc., etc. At the oncology/hematology center where I go monthly for IVIG (for an immune deficiency disorder) I snuggle under a blanket with a chemo manufacturer's name and logo on it. Here in the good old USA this is just business as usual.
OK, another point: Is it any wonder that the price of meds is so high here. I know that for some meds there is years of research behind their developement....and the drug co passes that on to us. But again, the politics are driving up the cost. The drug co charges more because they can. Point of fact: Drug companies are busy researching drugs that will be very costly to you and me.......cancer drugs, heart drugs, cholesterol modifying drugs, etc. But few are looking for a good antibiotic to use when the common bacterias that we come into contact with on a daily basis become immune to the present antibiotics (because antibiotics are much cheaper). Now don't get me wrong, I am thankful for the spendy drugs...thankful that medicare will pay for my IVIG, Procrit, and at one time Novantrone. I am not thankful that I can not afford to take any of the drugs that slow down the process of MS. The one that I was getting at the MD office ruined my liver. The one I could take at home, I can't afford, and we make $18/mo too much to qualify for help from the drug co. that makes it. I have researched all of my options, and there is nothing I can do. So I go without.
Right now, the neuropathies from the MS have me back to taking increasing doses of neurontin. It is expensive, yes, but both my husband and I have to take it and he has drug coverage under his health plan. Since our doses are variable I share his Rx. and we are getting by like that.
I am interested in checking for prices and pharmacies in Canada that will ship to the US. Any one know anything that they can share?
(Gee, I re-read this and it sounded like I was "not a happy camper". Believe me, that is far from the truth. I'm lovin' life and dealing with things as they come. All in all, I have it good now........it's been lots worse in the past!)
Love to all of you,
Penny
sugarleaf
07-26-2004, 09:03 PM
I would like to put forward my theory about which I feel so strongly, due to my own experience, regarding Neurontin and the way it works in ones system. I may be wrong of course but then so would my neurologist along with so many ordinary sufferers. I have been on this drug for many years having built up from low dose to 2400mg per day. As well as reading some experiences on this forum and the internet, this is my theory. So for example …………….
One complains to the neuro about PN pain, which is at let us say level 5 on a given pain scale. The neuro prescribes 300mg per day which reduces pain to level 3. A week or so later pain is back to level 5 so Neuro ups dosage to 600mg per day which again reduces pain to level 3. A month later pain is back to level 5 again so neuro doubles dosage to 1200mg per day. This is fine, now pain level is down to 2 but three months later pain is back to 5 so neuro ups dosage to 1800mg per day. Back down to pain level 2. Four months later when the patient reckons his/her level is perhaps now 6, neuro ups dosage to 2400mg per day. Now this is the maximum allowed for PN in the UK, (I believe it is 3600mg in the US), so what next? Pain goes back to 6 after another three months and the neuro says “I am sorry but you are on the maximum I can give you, and anyway your body would only go on wanting more and more, so what shall we try now? How about……………”
I intend to include here an extract from a comment made in John Senneff’s book “Numb Toes and Aching Soles”. The patient who has just increased his Neurontin dose to 200mg three times per day, says and I quote “I know that this is one of the drugs that we get used to, so I am increasing my dosage slowly to get all I can out of it before I wear it out”.
At this point, which I personally have already reached, I can admittedly go on to something stronger, neuro permitting, or try and live with pain at level 7 to 8 for no one knows how long.
My overall point in the above scenario is that for every step we take forward in increasing the dosage of Neurontin over the coming weeks or months, we take one step back. This I believe is because our bodies adapt to Neurontin like they do to many other drugs. Two steps forward two steps back, three steps forward three steps back and so on. So I ask myself the big question – would my PN be any worse now had I never taken Neurontin in the first place? Also what were PN sufferers treated with before the advent of anticonvulsants like Tegretol and Neurontin?
I do not believe that Neurontin is of any value to PN sufferers at any level of pain – on the contrary when the pain continues to increase to much higher levels, more and more of the drug is required together with it’s well known side effects of memory loss, muzziness and fatigue.
I have read quite a lot about this drug and have found more than one person who believes that Neurontin is a drug that you could go on increasing forever, in order to (control?) your pain until they run out of the drug or more likely you, the patient, develops some life threatening reaction.
This drug which was developed and intended (as Tegretol an even more dangerous drug was) for epilepsy, we all know now of the saga of off label marketing, together with a multitude of malpractices, that ultimately led to the heavy fine enforced on Pfizer. What we have not had explained to us is the theory I have laid out above.
I know some people here will say what’s new? I think what would be new, is if the medical profession everywhere ultimately came clean and said yes, Neurontin is only a pain reliever for as long as you can take it without it doing further harm to your body. But that hastens the question once again why take it in the first place?
The above scenario is my scenario and it only applies in cases of continuing severe pain. In cases of low level PN pain other drugs should be prescribed in order to hold the pain. I am sure the above must also be the scenario of thousands more PN sufferers. I base that surmise on cases where patients say they are on gigantic doses of Neurontin and the problem is they cannot come off of it or be prescribed any more increased doses.
I think that the people who find the side effects too harsh and stop taking any further doses are the fortunate ones. This is especially the case when they are under the age of 50 or thereabouts. In my case I will probably commence the Duragesic patch or some other narcotic. I am 70 and if by going on to a narcotic I could slowly come off Neurontin (without awful side effects and I am not sure if that is possible until I try) then what does it matter if I have at last found some relief in my final ??? years?
My intention is not to upset those on Neurontin, although I realise this may be so in some cases but hopefully to make those considering commencing it, or continuing to increase it, think again and again.
There are so many people out there who are about to, or will at some time in the future contract the “silent disease”, I just hate the thought of so many of them ending up on the maximum dose and frantic to know what to do next.
From now on I will never recommend this drug to anyone.
Jake
One complains to the neuro about PN pain, which is at let us say level 5 on a given pain scale. The neuro prescribes 300mg per day which reduces pain to level 3. A week or so later pain is back to level 5 so Neuro ups dosage to 600mg per day which again reduces pain to level 3. A month later pain is back to level 5 again so neuro doubles dosage to 1200mg per day. This is fine, now pain level is down to 2 but three months later pain is back to 5 so neuro ups dosage to 1800mg per day. Back down to pain level 2. Four months later when the patient reckons his/her level is perhaps now 6, neuro ups dosage to 2400mg per day. Now this is the maximum allowed for PN in the UK, (I believe it is 3600mg in the US), so what next? Pain goes back to 6 after another three months and the neuro says “I am sorry but you are on the maximum I can give you, and anyway your body would only go on wanting more and more, so what shall we try now? How about……………”
I intend to include here an extract from a comment made in John Senneff’s book “Numb Toes and Aching Soles”. The patient who has just increased his Neurontin dose to 200mg three times per day, says and I quote “I know that this is one of the drugs that we get used to, so I am increasing my dosage slowly to get all I can out of it before I wear it out”.
At this point, which I personally have already reached, I can admittedly go on to something stronger, neuro permitting, or try and live with pain at level 7 to 8 for no one knows how long.
My overall point in the above scenario is that for every step we take forward in increasing the dosage of Neurontin over the coming weeks or months, we take one step back. This I believe is because our bodies adapt to Neurontin like they do to many other drugs. Two steps forward two steps back, three steps forward three steps back and so on. So I ask myself the big question – would my PN be any worse now had I never taken Neurontin in the first place? Also what were PN sufferers treated with before the advent of anticonvulsants like Tegretol and Neurontin?
I do not believe that Neurontin is of any value to PN sufferers at any level of pain – on the contrary when the pain continues to increase to much higher levels, more and more of the drug is required together with it’s well known side effects of memory loss, muzziness and fatigue.
I have read quite a lot about this drug and have found more than one person who believes that Neurontin is a drug that you could go on increasing forever, in order to (control?) your pain until they run out of the drug or more likely you, the patient, develops some life threatening reaction.
This drug which was developed and intended (as Tegretol an even more dangerous drug was) for epilepsy, we all know now of the saga of off label marketing, together with a multitude of malpractices, that ultimately led to the heavy fine enforced on Pfizer. What we have not had explained to us is the theory I have laid out above.
I know some people here will say what’s new? I think what would be new, is if the medical profession everywhere ultimately came clean and said yes, Neurontin is only a pain reliever for as long as you can take it without it doing further harm to your body. But that hastens the question once again why take it in the first place?
The above scenario is my scenario and it only applies in cases of continuing severe pain. In cases of low level PN pain other drugs should be prescribed in order to hold the pain. I am sure the above must also be the scenario of thousands more PN sufferers. I base that surmise on cases where patients say they are on gigantic doses of Neurontin and the problem is they cannot come off of it or be prescribed any more increased doses.
I think that the people who find the side effects too harsh and stop taking any further doses are the fortunate ones. This is especially the case when they are under the age of 50 or thereabouts. In my case I will probably commence the Duragesic patch or some other narcotic. I am 70 and if by going on to a narcotic I could slowly come off Neurontin (without awful side effects and I am not sure if that is possible until I try) then what does it matter if I have at last found some relief in my final ??? years?
My intention is not to upset those on Neurontin, although I realise this may be so in some cases but hopefully to make those considering commencing it, or continuing to increase it, think again and again.
There are so many people out there who are about to, or will at some time in the future contract the “silent disease”, I just hate the thought of so many of them ending up on the maximum dose and frantic to know what to do next.
From now on I will never recommend this drug to anyone.
Jake
pagan2000
07-26-2004, 09:59 PM
Hi! just started on here! I was prescribed neurontin also, for rsd in my left wrist. It helps at nightime , but I just can't get used to taking it during the day, makes me to sleepy. I noticed that someone wrote that you should have a id tag on if you are taking this med, can anyone tell me why? thanks, sherry
riceneuroni
07-28-2004, 05:53 AM
I concur with Jake's final comment. My experience with Neurontin has been different, and I have different reasons why I would not recommend it, but we come to the same conclusion.
I preferred to remain on low doses (around 600 mg/night). It took the edge off the pain but I still used a wheel chair to get around. I couldn't stand the memory loss and brain fog side effects with higher doses. Then I got off the Neurontin all together and month later was hit with horrible anxiety. I've been dealing with that since last November and been on Zoloft for it since January. Now in July I've finally been able to reduce the Zoloft dosage just a bit. I think this anxiety reaction was absolutely related to the Neurontin since I have never had anxiety problems before. My sympathies go out to everyone who needs it - and those who take it.
I preferred to remain on low doses (around 600 mg/night). It took the edge off the pain but I still used a wheel chair to get around. I couldn't stand the memory loss and brain fog side effects with higher doses. Then I got off the Neurontin all together and month later was hit with horrible anxiety. I've been dealing with that since last November and been on Zoloft for it since January. Now in July I've finally been able to reduce the Zoloft dosage just a bit. I think this anxiety reaction was absolutely related to the Neurontin since I have never had anxiety problems before. My sympathies go out to everyone who needs it - and those who take it.
catbirdpondlady
07-28-2004, 02:12 PM
The ID tag for neurontin is for those who suffer from seizures. Sudden discontinuation of the drug for them could lead to severe, even life threatening, seizures.
I do understand where you are coming from Jake......at 70, you need your life to be as pain free as possible. Of interest, though, you might be setting yourself up to ever increasing doses of whatever med you are taking. Our bodies become tolerant of most drugs and after a while the meds do not work like they did in the beginning.
I know this from personal experience. A few yrs back I suffered severe nerve pain on my whole L side. That ever burning skin pain was unbearable. Even a sheet moved over my body brought me to tears. I was ready to die. They tried everything. I was hospitalized for over 3 months. The docs keep increasing my meds daily. I was on a morphine drip, MS contine by mouth, a Baclofen pump in my spinal cord, and of course the "Pain-cocktail" that you drink. Meds to help be stay awake, meds to make me sleep. It was a nightmare. Nothing was working. I was transferred to Wake Forest Baptist Hospital where a doctor Rx'd neurontin. He didn't work me up from a small dose. He just started me on the highest allowable dose at the time. At last the pain become bareable. I felt like I could go on living. Now, the only problem was that I was addicted to all of the narcotics I was taking. After a couple of wks at a center to get me off the pain meds I was finally able to go home. Then I saw an accupunturist who was able to relieve me of the trigiminal pain in my face. In a few wks I tapered off the Neurontin and now only take it when the pain gets bad again. Right now, I am increasing the dose daily because the MS has flared up again and the neuropathies are once again becoming a problem. It does make me drowsy, esp while working up to a level that will contain the pain for me. But, I choose drowsy over pain.
As you said, all of our experiences are different, and we have to choose what works best for us. For me, right now, it is the Neurontin. (Right now I am on 2400mg day in divided doses.)
Sending good thoughts your way!
Penny
I do understand where you are coming from Jake......at 70, you need your life to be as pain free as possible. Of interest, though, you might be setting yourself up to ever increasing doses of whatever med you are taking. Our bodies become tolerant of most drugs and after a while the meds do not work like they did in the beginning.
I know this from personal experience. A few yrs back I suffered severe nerve pain on my whole L side. That ever burning skin pain was unbearable. Even a sheet moved over my body brought me to tears. I was ready to die. They tried everything. I was hospitalized for over 3 months. The docs keep increasing my meds daily. I was on a morphine drip, MS contine by mouth, a Baclofen pump in my spinal cord, and of course the "Pain-cocktail" that you drink. Meds to help be stay awake, meds to make me sleep. It was a nightmare. Nothing was working. I was transferred to Wake Forest Baptist Hospital where a doctor Rx'd neurontin. He didn't work me up from a small dose. He just started me on the highest allowable dose at the time. At last the pain become bareable. I felt like I could go on living. Now, the only problem was that I was addicted to all of the narcotics I was taking. After a couple of wks at a center to get me off the pain meds I was finally able to go home. Then I saw an accupunturist who was able to relieve me of the trigiminal pain in my face. In a few wks I tapered off the Neurontin and now only take it when the pain gets bad again. Right now, I am increasing the dose daily because the MS has flared up again and the neuropathies are once again becoming a problem. It does make me drowsy, esp while working up to a level that will contain the pain for me. But, I choose drowsy over pain.
As you said, all of our experiences are different, and we have to choose what works best for us. For me, right now, it is the Neurontin. (Right now I am on 2400mg day in divided doses.)
Sending good thoughts your way!
Penny
sugarleaf
07-28-2004, 04:11 PM
Hi Penny
You certainly have been thro the mill. You say you came off a high dose of Neurontin slowly once before. I would strongly suggest you try to control increasing it again. You say you were addicted to a variety of narcotics so have you erased all need for them? Have you ever tried the Duragesic patch? I know this is another narcotic but it is absorbed slowly thro the skin and I do know people with PN who find this method very comforting.
I am really concerned that you will reach that max dose of Neurontin and find yourself back again at square one.
Please keep in touch and I send good thoughts your way. :)
Jake
You certainly have been thro the mill. You say you came off a high dose of Neurontin slowly once before. I would strongly suggest you try to control increasing it again. You say you were addicted to a variety of narcotics so have you erased all need for them? Have you ever tried the Duragesic patch? I know this is another narcotic but it is absorbed slowly thro the skin and I do know people with PN who find this method very comforting.
I am really concerned that you will reach that max dose of Neurontin and find yourself back again at square one.
Please keep in touch and I send good thoughts your way. :)
Jake
canadachik
07-28-2004, 11:40 PM
I was on 3200 mg and cut back one pill per week till I was completely off them. I can relate to the anxiety after quitting taking it. I ended up getting horrible migraines because I would go for long periods of time without sleep. I ended up at the ER with the most awful migraine and they put me on Ativan so I could get some sleep. I know what the brainfog, dizziness, and memory loss are all about as well. I work in a department store and there were times when I'd be in the middle of taking a customer to a certain product and my mind would just go blank and I'd be like "what were we looking for again?". I would never have stayed on neurontin if it weren't for having a doctor who pushed it on me. I was "too young" for everything else..right. I had the option of neurontin or nothing. When he died I finally got off of it on my own but it hasn't been easy. I actually started taking it again (after being off for at least 2 months) but only 800mg a day to see if that would ease up on the headaches. I thought the headaches had eased up a bit but now that I've gotten used to that dosage they're back just as strong. I'm almost afraid to stop taking neurontin again in case it's twice as worse as last time but we'll see! I definetely am not a fan of the stuff!!
~Naomi
~Naomi
catbirdpondlady
07-29-2004, 12:51 AM
It was uncanny, but the narcotics did very little for my pain even at levels that in retrospect could have killed an elephant. I am a very small lady and I continue to wonder why the docs kept increasing the doses of the narcotics. I think that they were at a loss as to what to do. Neurologists and Pain management docs were at my bedside daily (that was all 9 yrs ago when I was only 46) trying to make me comfortable. The only rest I got was when I was so sedated that I was oblivious to everything around me. Because of that I couldn't/didn't eat and ended up on Total Parental Nutrition (IV fat/nutient rich mixture given several times a day as well as the regular IV's. Also was getting Solu-Medrol at 1 gram a day for 3 wks. As I said, they were doing all that they could and I wasn't responding. It was frightening for all of my family and friends as well. That was the reason for my move to another hosp.......these doc's felt like they has run out of options. Then the neurontin was started and it was a god send.
I have started the high does prednisone pulse and taper today. I am sweaty and hungry and wide awake despite the sleeping meds Rx'd.....and the pain is getting worse. The MS has started to mess up my speech again, also. This stuff had better kick in, or the whole MS mess will soon be upon me.
But, hey, this isn't the MS board, this is for the neuropathy plagued. I think I fit in here too, though.
PS, I am holding steady on my present dose of Neurontin......I just want to be comfortable.
Thanks to you all for your support.
Good thoughts of healing and wellness to all of you.
Love,
Penny
I have started the high does prednisone pulse and taper today. I am sweaty and hungry and wide awake despite the sleeping meds Rx'd.....and the pain is getting worse. The MS has started to mess up my speech again, also. This stuff had better kick in, or the whole MS mess will soon be upon me.
But, hey, this isn't the MS board, this is for the neuropathy plagued. I think I fit in here too, though.
PS, I am holding steady on my present dose of Neurontin......I just want to be comfortable.
Thanks to you all for your support.
Good thoughts of healing and wellness to all of you.
Love,
Penny
wls4me
07-29-2004, 06:23 AM
I have been taking nerotin for 4 years now and it has been a life saver for me. I have had no bad effects. It has been a mircle drug for me.
sugarleaf
07-29-2004, 04:45 PM
WlS4me
May I ask what is your dosage of Neurontin and what you are taking it for?
Take care :)
Jake
May I ask what is your dosage of Neurontin and what you are taking it for?
Take care :)
Jake
AnninOhio
08-23-2004, 03:41 PM
I had pain from neuropathy in my left foot. I was put on neurontin and thought it was working at first, it seemed to lessen the pain but never actually relieved it. After a while it did not seem to do anything and the dose would be increased, this went on for 2 yrs. I had side effects from the neurontin but did not realize they were from the neurontin until I stopped taking it and I had no more pain off of it than I had on it. The side effects went away after a while and I have never taken it again and just recently I have read a lot of reports on the misuse of neurontin and the bad side effects and how it is not approved for the use of pain relief. I would not take it again myself. you might want to check this out [ removed ]
FUNKYHEADGIRL
09-06-2004, 09:47 PM
I've been on Neurontin for about 4 months now and I think it does help me. Unfortunately, I have the side effects of feeling like a "space case" and memory issues. Plus, it seems my words come out all in a stutter! I am up to 1800 mg now and the side effects have not gone away. I take mine at bedtime, sleep about 5-6 hours, and still wake up dizzy. I've still have bad episodes with my back about once a month, but I do think on a day-to-day basis, it is helping me. Good luck!
zolot
09-10-2004, 07:25 PM
I have radiation neuropathy. It started seven months after my radiation with burning and tingling feeling on my left toes. after six months it has already moved up to my leg. now I have this stupid burning feeling in both legs in my muscles and I have a problem walking. I too on noretrin, gabarpatin and dolol men the pain is still there ofcouse, it reduses the pain a bit but not much. I can,t belive that there is nothing out that can help os with nerves problem. technology is so advanced now. I mean, they building big space machines and big tanks for war but they can,t .....
riceneuroni
09-11-2004, 09:48 AM
Has anyone seen the add on TV looking for victims of Neurontin? It appears they're planning a class action law suit on behalf of those who attempted suicide, and the families of those did, while on Neurontin. I don't recall anyone here mentioning depression as a side effect? Anyone?
lacydog
09-11-2004, 03:48 PM
I have seen the thing on tv, and it's scary. I haven't taken it personally, but a friend of mine is currently on it. Shortly after his doc put him on it his health quickly declined. He's very depressed, and all of his other problems then have just been amplified. They do not expect him to live much longer and he's actually hoping for that himself. That's all I know. That may or may not be from the Neurontin. I just know he's on a very high dose and it started almost immediately after he started taking it.
gustone
09-20-2004, 05:30 PM
hi'
I have been on neurontin for a week. I have nerve damage after a botched surgery on L4 5 in july. I have pain that starts after being up and about for 3 hours. It starts as a fuzzy feeling in my left foot. It then progrsses to a burning sensation in my left buttocks and back of left thigh. If I continue being up for more than 5 hours, it progresses to a gnawing pain in my butt, thigh, calf, and top and bottom of my foot. Neurologist prescribed neurontin, which after research I figured he would. I am only up to 500 mg so far. I notice a slight improvement but nothing major. He said I should see it kick in at about 900mg. So far I just have a heavy head some mornings when I up the dosage. I started at 1oomg for 2 days then increase 100 every other day. Does anyone out there have my symptoms and does this drug help?
I have been on neurontin for a week. I have nerve damage after a botched surgery on L4 5 in july. I have pain that starts after being up and about for 3 hours. It starts as a fuzzy feeling in my left foot. It then progrsses to a burning sensation in my left buttocks and back of left thigh. If I continue being up for more than 5 hours, it progresses to a gnawing pain in my butt, thigh, calf, and top and bottom of my foot. Neurologist prescribed neurontin, which after research I figured he would. I am only up to 500 mg so far. I notice a slight improvement but nothing major. He said I should see it kick in at about 900mg. So far I just have a heavy head some mornings when I up the dosage. I started at 1oomg for 2 days then increase 100 every other day. Does anyone out there have my symptoms and does this drug help?
gustone
09-27-2004, 09:28 AM
Neurontin has been helping me. It is like a miracle. From almost 20 hour a day in bed, to a half way normal life. I am up and about 12 to 14 hours a day without pain. I'm only at 1100mg so I know I'll feel even better as I increase. Going back to work next monday. Hope you all find the relief that I have found.
Gus
Gus
riceneuroni
09-29-2004, 04:54 AM
I was on 600 mg/day and called it a miracle drug too. I couldn't go higher because of the brain fog - I needed to keep working. The dose was not sufficient to knock the pain out enough for me to walk on my feet, but enough to make the pain tolerable. I was on it about 18 months. A month after getting off it I developed severe anxiety and have been on Zoloft to control that. It's been about six months now and I still can't get off the Zoloft. I never suffered anxiety before, so I believe it is a result of the neurontin.
mamajo
10-10-2004, 11:26 AM
[COLOR=Green][B][I][SIZE=3]Ok, I am a 48 year female, I have neuropathy for nine months now. I tried nuerotin first with a smaller dose(around a 100mgs or less) three times a day, and my doctor increased the dosage up to 300 mgs @ three times a day. Along with the neurotin, I was taking celebrex(200mg) @ 2 times a day for the arthritis in my back and ankle, and 500 mgs of hydrocodone for pain. When the doctor increased my dosage of nuerotin, that's when the problems began. Both of my feet and ankles swelled so bad, that I couldnt even put my shoes on, and it didnt help the neuropathy any at all either. After a couple of weeks off of neurotin, the swelling is completely gone. I dont know if it was the neurotin alone or a bad interaction with the other medications that I'd been taking. Linda, you said that you had side effects from neurotin, just wondering if yours was similar to mine. :confused:
Shirley_I_Am
I had swelling also. I gained 13 lbs in 3 days while taking this drug...
Shirley_I_Am
I had swelling also. I gained 13 lbs in 3 days while taking this drug...
ronnald_b
10-11-2004, 12:44 PM
Has anyone tried Pregabalin (Lyrica)? It's new.
gustone
10-21-2004, 10:48 AM
still taking the neurontin at 1400mg day. Feel great with the nerve regeneration. Am still able to function all day. Wish there was something I could take for the back pain.
rjesker
10-26-2004, 11:42 PM
I started taking neurotin about 4 weeks ago. I started with 300mg 1x a day for a week, 2x aday the second week 3x a day from week 3 on. I also take percocet. I have been having depression and anxiety problems before taking neurotin that was affecting my memory, concentration and more. The mental stuff was causing me problems before neurotin. I have been suffering with severe pain for over nine months now. I have possibly a spinal cord injury, stenosis, or pinched nerves. I see a neurosurgeon next week. Neurotin has reduced the "intercostal" rib pain and leg and foot pains that I have been expieriencing. It doesn't take it away, but it does reduce it. I still have horrible pains in my mid and lower back. The "intercostal" pain still flares up badly on occasion, but it is not as constant as before I started taking neurotin. I believe that the concentration, memory problems are due to the depression and anxiety issues.
This is my opinion. Good luck to you all. Neuropathy is a horible thing to have to deal with.
This is my opinion. Good luck to you all. Neuropathy is a horible thing to have to deal with.
snowmelts
10-30-2004, 06:37 PM
In my opinion we must all stay very aware of what drugs we take, why we take them and any new releases concerning them.
We just have to admit that if we are taking a drug to mask pain it also is tricking our minds to not recognize the pain signal. We must be very careful of such meds.
I'm still on my nice low dose of Neurontin and it's still acceptable to me. After all the only pain masking drug choices out there are all the mind tricking kind and are bad for someone.
Thank goodness for the internet and Boards like this, where we can exchange info and gain so unbiased much personal experience knowledge for others. We all benefit greatly from this exchange of experiences.
We just have to admit that if we are taking a drug to mask pain it also is tricking our minds to not recognize the pain signal. We must be very careful of such meds.
I'm still on my nice low dose of Neurontin and it's still acceptable to me. After all the only pain masking drug choices out there are all the mind tricking kind and are bad for someone.
Thank goodness for the internet and Boards like this, where we can exchange info and gain so unbiased much personal experience knowledge for others. We all benefit greatly from this exchange of experiences.
riceneuroni
10-30-2004, 08:15 PM
The biggest problem is when drugs are not tested for long-term use and it is used that way. I now believe my memory problems will not go away. It has been a full year since I stopped Neurontin. I had been on it about 18 months. I had the commone "brain fog" symptoms and they seemed to clear up when I stopped taking it. About a month later though I developed anxiety. It is absolutely from the Neurontin in my opinion. It won't go away, and my memory has not recovered. I think Neurontin did a lot for taking the edge off my neuropathy even at 600 mg/night, and I was greatful for it. Now I say I wish there was something safer. I think this drug is not good for long-term use.
queenpooch
01-21-2005, 02:25 PM
Hello all.
Greetings from sunny South Carolina.
I am always amazed at the information and support I find on these boards. What did we do before the Internet??
I want to wean myself from Neurontin and found this thread. Thank you, THANK YOU to everyone who shared so much knowledge and experience. (And all that typing!) Just when I think I'm the only one experiencing something, I find a kindred spirit on these health boards. From reading all these posts today, I have learned the following:
1) Neurontin results, reactions and side effects can be as different as day and night between people, but there are several of you who share "my story."
2) Neurontin has helped the majority of posters - even changing lives or at least making life bearable for some.
3) Neurontin is taken by the majority of posters for something other than epilepsy - mostly pain.
4) Neurontin use is controversial, and doctors sure do like to prescribe it.
5) Nurses should be paid as much, if not more than, doctors. (Ok, I didn't learn that here)
6) The reason I have horrible, vivid nightmares sometimes is because I have mixed ibuprofen with Neurontin.
This is the abridged version of My Story:
1) I have had problems with depression, social anxiety and ADD since I was a child. (But back then it was called "sleepy" "weird" and "lazy" Hey, weren't those 3 of the Seven Dwarfs?) At the age of 40, I was finally diagnosed and have since tried every drug to come down the pike. Everything made me tired and spacey and affected my cognitive abilities. (I'm a writer, so this was not good!) Everything except Wellbutrin caused MAJOR weight gain, but the WB made me feel horrible - even after the 8 week adjustment period. One popular anti-depressant (Prozac - can I say that here?) gave me TMJ. (who knew!) and lowered my IQ by about 10 points. I'd rather be depressed!
2) A diving board accident at age 17 left me with sciatica pain that has affected my life dramatically. Delivering two 10 lb. baby boys in my 20s did not help. (But what a joy they have been to me!) Around 40 (I'm now 46) I developed very painful arthritis in my lower back and a pinched nerve. I think I have taken enough aspirin and ibuprofen to fill an aircraft carrier. Vioxx helped, but I only took it a few times - it made me very nauseated - thank goodness in light of the new findings!
3) I was prescribed Neurontin 2 yrs ago for the back pain and TMJ (from grinding my teeth at night due to taking - are you ready for this?? - PROZAC! I just learned this 5 months ago.) Neurontin was the first medication to "take the edge off" my back pain, and it did help alleviate the horrible headaches from the teeth grinding (bruxism.) My doc also prescribed Neur. for "mood stabilization". I started with 300 mg. before bed, and gradually titrated up to 1200 mg total a day - 300 in AM and afternoon, and 600 mg before bed. Since then, I have gradually reduced the dosage to a total of 600 mgs a day - and that's before bed.
4) I have recently weaned myself off Prozac after a 3 yr stint. (It took 3 months for the Prozac to leave my system, during which time I experienced major anxiety. I had no idea until reading it elsewhere on Health Boards that it stays in your system that long!) I'm still waiting for my IQ to get back to normal. I still grind my teeth, but finally got a special guard from my dentist (to the tune of $400.) Hopefully I will completely stop the teeth grinding one day, although the lady in the health food store told me the cause of teeth grinding was secretly wanted revenge on someone. :eek:
3) Even on 600 mgs a day, the Neurontin makes me sleep like a rock. A big fat rock. In the last 2 years, I have gained 44 lbs and I can hardly compose a paragraph or carry on an intelligent conversation. (My doc blames this on the recent Prozac withdrawal.) Anyway, I am a zombie all day.
:yawn: Huh? Oh sorry, I dozed off.
4) I am now Rx-free except for the Neur. I also want to quit taking ibuprofen before my stomach turns into a bloody pulp.
5) For the depression, social anxiety and ADD, I'm just going to have to "deal" - as my teenage son says. Frankly, now that I'm off of all those anti-depressants, it's preferable to just "be me." Sure, I'm blue and down sometimes, but I embrace the mood and go for a walk on the beach or play with my dog. If I feel that old social anxiety creeping in, I just accept it as part of being me also, and wear more anti-perspirant.
6) I have returned to a diet of healthy foods, herbs and vitamins, rather than self-medicating with chocolate, Doritos and wine. This has been hard to do!
7) For my back pain, I invested in an inversion table 3 months ago. It has been a God-send!! I hang upside down like a vampire (is that why they live so long?) for just a few minutes a day, and I am walking tall and steppin' large! It's nothing short of a miracle.
So here's my question for those who are in-the-know: With my Neurontin history, duration and dosage; what would be the recommended "weaning" plan? I've read that weaning is difficult, but how? Anxiety? Insomnia? As long as I'm prepared, I feel I can handle anything.
Thank you for reading this LONG post.
With healing blessings to all of you,
Maggie
Greetings from sunny South Carolina.
I am always amazed at the information and support I find on these boards. What did we do before the Internet??
I want to wean myself from Neurontin and found this thread. Thank you, THANK YOU to everyone who shared so much knowledge and experience. (And all that typing!) Just when I think I'm the only one experiencing something, I find a kindred spirit on these health boards. From reading all these posts today, I have learned the following:
1) Neurontin results, reactions and side effects can be as different as day and night between people, but there are several of you who share "my story."
2) Neurontin has helped the majority of posters - even changing lives or at least making life bearable for some.
3) Neurontin is taken by the majority of posters for something other than epilepsy - mostly pain.
4) Neurontin use is controversial, and doctors sure do like to prescribe it.
5) Nurses should be paid as much, if not more than, doctors. (Ok, I didn't learn that here)
6) The reason I have horrible, vivid nightmares sometimes is because I have mixed ibuprofen with Neurontin.
This is the abridged version of My Story:
1) I have had problems with depression, social anxiety and ADD since I was a child. (But back then it was called "sleepy" "weird" and "lazy" Hey, weren't those 3 of the Seven Dwarfs?) At the age of 40, I was finally diagnosed and have since tried every drug to come down the pike. Everything made me tired and spacey and affected my cognitive abilities. (I'm a writer, so this was not good!) Everything except Wellbutrin caused MAJOR weight gain, but the WB made me feel horrible - even after the 8 week adjustment period. One popular anti-depressant (Prozac - can I say that here?) gave me TMJ. (who knew!) and lowered my IQ by about 10 points. I'd rather be depressed!
2) A diving board accident at age 17 left me with sciatica pain that has affected my life dramatically. Delivering two 10 lb. baby boys in my 20s did not help. (But what a joy they have been to me!) Around 40 (I'm now 46) I developed very painful arthritis in my lower back and a pinched nerve. I think I have taken enough aspirin and ibuprofen to fill an aircraft carrier. Vioxx helped, but I only took it a few times - it made me very nauseated - thank goodness in light of the new findings!
3) I was prescribed Neurontin 2 yrs ago for the back pain and TMJ (from grinding my teeth at night due to taking - are you ready for this?? - PROZAC! I just learned this 5 months ago.) Neurontin was the first medication to "take the edge off" my back pain, and it did help alleviate the horrible headaches from the teeth grinding (bruxism.) My doc also prescribed Neur. for "mood stabilization". I started with 300 mg. before bed, and gradually titrated up to 1200 mg total a day - 300 in AM and afternoon, and 600 mg before bed. Since then, I have gradually reduced the dosage to a total of 600 mgs a day - and that's before bed.
4) I have recently weaned myself off Prozac after a 3 yr stint. (It took 3 months for the Prozac to leave my system, during which time I experienced major anxiety. I had no idea until reading it elsewhere on Health Boards that it stays in your system that long!) I'm still waiting for my IQ to get back to normal. I still grind my teeth, but finally got a special guard from my dentist (to the tune of $400.) Hopefully I will completely stop the teeth grinding one day, although the lady in the health food store told me the cause of teeth grinding was secretly wanted revenge on someone. :eek:
3) Even on 600 mgs a day, the Neurontin makes me sleep like a rock. A big fat rock. In the last 2 years, I have gained 44 lbs and I can hardly compose a paragraph or carry on an intelligent conversation. (My doc blames this on the recent Prozac withdrawal.) Anyway, I am a zombie all day.
:yawn: Huh? Oh sorry, I dozed off.
4) I am now Rx-free except for the Neur. I also want to quit taking ibuprofen before my stomach turns into a bloody pulp.
5) For the depression, social anxiety and ADD, I'm just going to have to "deal" - as my teenage son says. Frankly, now that I'm off of all those anti-depressants, it's preferable to just "be me." Sure, I'm blue and down sometimes, but I embrace the mood and go for a walk on the beach or play with my dog. If I feel that old social anxiety creeping in, I just accept it as part of being me also, and wear more anti-perspirant.
6) I have returned to a diet of healthy foods, herbs and vitamins, rather than self-medicating with chocolate, Doritos and wine. This has been hard to do!
7) For my back pain, I invested in an inversion table 3 months ago. It has been a God-send!! I hang upside down like a vampire (is that why they live so long?) for just a few minutes a day, and I am walking tall and steppin' large! It's nothing short of a miracle.
So here's my question for those who are in-the-know: With my Neurontin history, duration and dosage; what would be the recommended "weaning" plan? I've read that weaning is difficult, but how? Anxiety? Insomnia? As long as I'm prepared, I feel I can handle anything.
Thank you for reading this LONG post.
With healing blessings to all of you,
Maggie
delrae4753
01-21-2005, 05:19 PM
you are on the 600 mg a day at bedtime , ok for me im suppose to be on 900 mg a day i do take 1 in the am if i dont have plans where i have to be alert that gets me thru the day then i might take one at night before bed sometimes i for get to take it so i can say half the time i usually just take 1 a day in the am unless i forget to take it then when i remember i just take it at night it helps me sleep i just decided one day to cut out the other doses because i was sleeping too much i had to be alert i would try titrating like take a 300 mg dose just at bed and see how that works. anther reason i titrated myself off this drug is that it makes me shake, like soameone with bad nerves and before i started taking this 2 years ago i never had this problem i get so tired of being like a zombie . good luck
CittyCat
01-22-2005, 05:38 PM
;) I've been on Neurontin since 2000 for neuropathy. I know it helps when I've forgotten to take my afternoon pill. The pain is intolerable. I am also on antidepresents. I don't know if I could be brave enough to tuff it out without them.
Cathy
Cathy
delrae4753
01-22-2005, 06:24 PM
talk to your dr about weaning off them ,aybe there is something else that can be used.
CittyCat
01-23-2005, 08:03 PM
:rolleyes: I am taking 1200 mg daily, 400 mg x 3 daily. I'm 54 yrs old and to be honest, I don't want to be in pain 24/7. My legs hurts so much sometimes can barely tolorate the pain (trying not to sound to dramatic). The dosage I'm on just keeps the pain isolated in one area of the leg.
delrae4753
01-23-2005, 09:47 PM
you know i can understand all that im 51 and today has been horrid im having terrible pain in my rt heel and the pain is going all the way up my leg had to take 3 pills today warm weather come on
delrae4753
01-23-2005, 09:50 PM
needles to say the legs have had nothing but pains in them today darn old cold weather affects them too makes the neuropathy worse
madine
05-14-2005, 05:48 AM
Thanks for all your feedback! I started neurontin a little over a week ago. Pain doctor said start on 100mg. That did nothing to help the nerve pain and could only sleeo 1 hour without awaking in severe pain. PCP upped dose to 300mg then 600mg boy was I overdosed. Am now trying 300mg.
Madine
Madine
smooth69
05-16-2005, 08:32 AM
I have been off this mind altering med for four weeks and have never felt better. PN pain is almost non-existant and no more "brain fog". I think that this is a very bad drug and I'm glad to be off it. I was taking 600-300-600mg daily.
snowmelts
05-18-2005, 03:16 AM
I have been off this mind altering med for four weeks and have never felt better. PN pain is almost non-existant and no more "brain fog". I think that this is a very bad drug and I'm glad to be off it. I was taking 600-300-600mg daily.
:bouncing: To see anyone saying the PN pain is leaving is a wonderful thing!
I'm VERY happy for you.
But my question for you, smooth69, is WHY is your PN pain leaving?
Did you find the cause of your PN?
Oh how I wish my PN would go away.
I've had it since about Christmas of 92.
I can remember not having PN.
~sigh~
Of course Neurontin's a bad drug, but when you are in pain you have to choose intelligently among the available options and there are no so-called 'good' drugs available to get rid of this pain.
Without my Neurontin my PN rears its ugly head rather fast. I take the pills 4 or 5 hours apart.. I definatly can't go longer than 8 hrs without my PN causing overwelming problems. I take a VERY VERY low dose to ward off enough of the PN pain but none-the-less I do need that dose.
I hope your PN leaves and never comes back!
:bouncing: To see anyone saying the PN pain is leaving is a wonderful thing!
I'm VERY happy for you.
But my question for you, smooth69, is WHY is your PN pain leaving?
Did you find the cause of your PN?
Oh how I wish my PN would go away.
I've had it since about Christmas of 92.
I can remember not having PN.
~sigh~
Of course Neurontin's a bad drug, but when you are in pain you have to choose intelligently among the available options and there are no so-called 'good' drugs available to get rid of this pain.
Without my Neurontin my PN rears its ugly head rather fast. I take the pills 4 or 5 hours apart.. I definatly can't go longer than 8 hrs without my PN causing overwelming problems. I take a VERY VERY low dose to ward off enough of the PN pain but none-the-less I do need that dose.
I hope your PN leaves and never comes back!
smooth69
05-18-2005, 08:39 AM
snowmelts -
Thanks for you response. My PN is not completely gone but it has greatly diminished. The cause of my PN is accute AIDS infection. I have been on HAART since October 2001 and my immune system is beginning to recover. I believe that is why the PN is less severe. I'm just happy to be off of the Neurontin.
Thanks for you response. My PN is not completely gone but it has greatly diminished. The cause of my PN is accute AIDS infection. I have been on HAART since October 2001 and my immune system is beginning to recover. I believe that is why the PN is less severe. I'm just happy to be off of the Neurontin.
bbjqrr6a
05-22-2005, 05:20 AM
hi my name is chuck!
I suffer from P.V.D. severe (PERIPHERAL VASCULAR DISEASE) in my lower
extremity my legs'. i was takeing neurontin for pain' do to the cost of it'
even with my drug plan. i had to tell my DR. i have to stop taking neurontin
I can only go by my self. I am a pain patient neurontin help me with handle
break through pain'. that i have at times. i know some drugs take time'
to get the benifit from them. with me neurontion. did help me' .
I suffer from P.V.D. severe (PERIPHERAL VASCULAR DISEASE) in my lower
extremity my legs'. i was takeing neurontin for pain' do to the cost of it'
even with my drug plan. i had to tell my DR. i have to stop taking neurontin
I can only go by my self. I am a pain patient neurontin help me with handle
break through pain'. that i have at times. i know some drugs take time'
to get the benifit from them. with me neurontion. did help me' .
snowmelts
05-22-2005, 03:40 PM
Welcome to health Boards, Chuck.
sadies mom
05-22-2005, 09:39 PM
I have been on Neurontin for several months now~a low dose only 800mg qhs; but I can't stand it anymore and want to taper off ASAP. I feel literally stupid when I am on it~lethargic,depressed, foggy, punch-drunk. And to top it all off it hasn't helped with the chronic nerve pain I suffer. I see the doc that put me on it on Tuesday and will tell him I want off that and the oxycontin he has me on 2 x daily. I am better off with 800mg of ibubrofen and percocet once or twice a day. These other 2 drugs have made me more of an invalid than i was in the first place!!
momofsix
05-23-2005, 10:42 AM
Amen, Amen, Amen. That is so well put. That drug - as well as other anti-seizure medications they put me on - made me more of an invalid than when I started (I too have nerve pain). I don't think these pain doctors understand at all what "side effects" truly mean. Perhaps they should all have to try these drugs for a short period before prescribing them. I was literally bedridden with side effects, whereas, as terrible and depressing as living with chronic pain is, at least there are some hours in the day when I can function fairly normally and with a clear mind.
Linda
Linda
RozIA
07-25-2005, 07:43 AM
Now that yall have been on Neurotin for a while how much weight have you gained.I had gained 50lbs and 11 cavities . I then changed to Topamax. Just wondering How everyone else did. Thanks
Donna2725
08-09-2005, 02:03 AM
I almost comitted suicide while taking neurontin and I know without a doubt that's what it was. Too many reasons to list why I know. Just be careful.
Donna
Donna
CittyCat
08-13-2005, 02:42 PM
:angel: It makes me feel bad that the medication has done that to you. I know that at times I think I see things I don't. But I turn and then I realize what's happening and just brush it off cause I know I can't stand the pain and the pain has made me think of suicide more than once in the 5 years I've suffered the horrible pain I have in my legs. I now have it in both legs and have been told that the one neve damaged is the one that keeps the foot upright. I don't want to be waring a plastic foot support. Our best friends still talk about trecking through Europe like we did in the '80's. That will never happen for me again.
Talk to your Dr. and see if there isn't something else he can give you.
Thinking of you and your pain,
Cathy :wave:
Talk to your Dr. and see if there isn't something else he can give you.
Thinking of you and your pain,
Cathy :wave:
Fancylady
08-13-2005, 04:01 PM
Hi, you are afraid of such a big dose after everyone else takes less. Please ask your DR. I started out on 300mg. Nothing happen so I quit. Next I went to my neurologist and he ask me why I had quit. I told him it didn't work. He said I needed a bigger dose
and thats why it didn't work. In two wks. he did an EMG and I went on an even bigger dose. I now take 600mg 4 times a day. They even make a 800mg cap. I'm not afraid of it and have no side effects unless it would be weight gain. I weigh more now than I have ever weighed before. I'll be sure and ask about that, next visit. Doc did try me on Cymbalta. I couldn't take it for the side effects. Different strokes for different folks. May you have the good fortune to have a Dr. that you can trust!
Billie
and thats why it didn't work. In two wks. he did an EMG and I went on an even bigger dose. I now take 600mg 4 times a day. They even make a 800mg cap. I'm not afraid of it and have no side effects unless it would be weight gain. I weigh more now than I have ever weighed before. I'll be sure and ask about that, next visit. Doc did try me on Cymbalta. I couldn't take it for the side effects. Different strokes for different folks. May you have the good fortune to have a Dr. that you can trust!
Billie
CittyCat
08-18-2005, 02:24 PM
:wave: Good morning everyone,
Hope your all having a pain free day.
I only know if I don't take my afternoon 300 mg I suffer all evening. Does anyone suffer from aching hands/arms with throbbing in the fingers? For me that's the toughest pain to bare cause there isn't any relief. I so suffer in my legs too, upper thigh and lower calf in different legs.
But I saw a young man walking to a truck the other day with artificial legs, so I shut up most of the time. But is he in pain, cronic pain :confused: ?
I used to love to play golf and now I look for excuses for not playing.
I take cymbalta and palamar. Apparently the two together are supposed to help with the depression from the pain. Yes & No.
Yes I trust my Neuro. He is a neighbor to one of the Board Members of the school district I work for. He looks like a small Eienstine. He's highly known & respected in the Valley I live in.
Have a good day and keep cool.
We're all in this together!
Sincerely,
Cathy
Hope your all having a pain free day.
I only know if I don't take my afternoon 300 mg I suffer all evening. Does anyone suffer from aching hands/arms with throbbing in the fingers? For me that's the toughest pain to bare cause there isn't any relief. I so suffer in my legs too, upper thigh and lower calf in different legs.
But I saw a young man walking to a truck the other day with artificial legs, so I shut up most of the time. But is he in pain, cronic pain :confused: ?
I used to love to play golf and now I look for excuses for not playing.
I take cymbalta and palamar. Apparently the two together are supposed to help with the depression from the pain. Yes & No.
Yes I trust my Neuro. He is a neighbor to one of the Board Members of the school district I work for. He looks like a small Eienstine. He's highly known & respected in the Valley I live in.
Have a good day and keep cool.
We're all in this together!
Sincerely,
Cathy
dellphinia
08-18-2005, 11:53 PM
Hi everyone.
8 years ago, I suffered a traumatic injury to my left shoulder in school. 3 years ago, nerve pain flared up again, with no relief in site, and being a musician, it affected everything.
I started neurontin over a year ago. Worked my way up to 2100/day, which proved too much (side effects as others mentioned; dizziness, headache followed by extreme fatigue, brain fog, trouble walking steady). Decreased to 1800/day (600 3x/day), and then to 1500/day. Side effects weren't as bad then, but if I don't take it with food it makes me dizzy.
It didn't take away all the pain, but was helpful in cutting out certain types of pain. I was able to practice again, usually 3 hours after each dose. If I was late taking a dose my body would remind me.
I just had surgery and am off of it until I figure out if I still need to take it. Hopefully I won't be permanently brain dead. Thanks for sharing your experiences everyone; it's helpful to know other people experienced side effects too and I wasn't just going crazy or imagining it!
8 years ago, I suffered a traumatic injury to my left shoulder in school. 3 years ago, nerve pain flared up again, with no relief in site, and being a musician, it affected everything.
I started neurontin over a year ago. Worked my way up to 2100/day, which proved too much (side effects as others mentioned; dizziness, headache followed by extreme fatigue, brain fog, trouble walking steady). Decreased to 1800/day (600 3x/day), and then to 1500/day. Side effects weren't as bad then, but if I don't take it with food it makes me dizzy.
It didn't take away all the pain, but was helpful in cutting out certain types of pain. I was able to practice again, usually 3 hours after each dose. If I was late taking a dose my body would remind me.
I just had surgery and am off of it until I figure out if I still need to take it. Hopefully I won't be permanently brain dead. Thanks for sharing your experiences everyone; it's helpful to know other people experienced side effects too and I wasn't just going crazy or imagining it!
KarynLR
08-19-2005, 12:10 PM
I am on 400 mg 3 times a day. A podiatrist severed a nerve in my foot, and two surgeries later, we have amputated nerve up to the tibial nerve in my ankle. Since the surgery, my pain has been much better--more refined, is what I tell my orthopaedist. Still, he doesn't want to cut back on the Neurontin just yet--we're waiting a few months to let the nerve "settle down". I was hoping I could get off the Neurontin at this visit, but he says not yet. I forgot a couple of my afternoon doses this week, and the pain was so there... so I guess I still need the Neurontin.
The nurse told me ways I could cut back myself, but my doc is very specific about how we stop, start, and increase or decrease, so I think I'll wait for him to tell me how. Has anyone done a dose decrease? I'd be interested in hearing about your experiences!
Take care,
Karyn
The nurse told me ways I could cut back myself, but my doc is very specific about how we stop, start, and increase or decrease, so I think I'll wait for him to tell me how. Has anyone done a dose decrease? I'd be interested in hearing about your experiences!
Take care,
Karyn
smooth69
08-19-2005, 12:28 PM
Stoping or cut back on the dosage of Neurontin must be done gradually. Since the drup is an anti-siezure medication a sudden reduction or stoping abruptly could cause seizures. I was taking 600-300-600mg daily. I then went to 600-600mg for one week. Then to 300-300mg for the next week. And finally 300mg the final week. I am so glad to be off this. My mind is clear again and I am dealing with the pain without any medication. Good luck to you. Ric
delrae4753
08-19-2005, 02:10 PM
tell me what you think !!
my friends mom is 74 the dr put her on neurotin 300 mg 2x a day and she cuts one of the capsules in hald takes just the 1/2 powder in the am and the other half of the powder later in the day i told her she should not do this . what can i tell her to do i have suggested that she cal the dr and let him know but she wont interfere for her om she dont realize the danger of doing this without her dr knowing this,
my friends mom is 74 the dr put her on neurotin 300 mg 2x a day and she cuts one of the capsules in hald takes just the 1/2 powder in the am and the other half of the powder later in the day i told her she should not do this . what can i tell her to do i have suggested that she cal the dr and let him know but she wont interfere for her om she dont realize the danger of doing this without her dr knowing this,
gnp
08-21-2005, 02:46 AM
I am on 600 mg at night only. Boy what a buzz. the only problem is that I don't want to wake up in the morning. By itself I am not getting much relief. My sister loves it, but she has had back surgery and hip surgery, so there is plenty there for it to work on. I just have a numb left ankle and a little on the outside calf. I put and ice pack on the ankle and one on the calf followed by an ace bandage wrapped around it. That's how I sleep every night. You should try it. If it's to cold put a towel or something between your hand and the ice pack.
Nancy :angel:
Nancy :angel:
txctw
08-24-2005, 04:54 PM
I had a 360 degree ALIF L5-S1 fusion in mar 2003, I ahve been on neurontin since for my pain in my left leg and calf. I take 600mg three times a day. This drug works wonders for neuropathy. I have had no side effects (that I am aware of) from this drug. Do not, I repeat do not be afraid to up your dosage as with all drugs your body get aquainted with it and it takes more to do the job. I also take fioracet for my pain. I am a 40 year old male and I contribute the success of keeping my "dead" foot bearable to this drug. Has anyone (male) had problems with Erectile Dysfunction due to fusion at this location? I wish you all great luck with your Neurontin.
carrbean
08-26-2005, 04:14 PM
i've had chronic headaches/neck pain/fibromyalgia for about 10 yrs. i feel like i've taken every medicine on earth. the neurontin took my headaches pretty much away. that was the only relief i've ever had was neurontin. my problem was, i was sooooo happy that it was working that i kept raising the dose hoping the headaches would go away completely. i got up to a high dose and it stopped working. i was on it for a couple of months. i plan on going back. i would not recommend topamax which drs recommend (unless of course it works for you, everyones different) had major side effects with that.
dalirahma
02-05-2006, 01:26 PM
Hello,
I had Bells Palsy about 8 years ago. It never completely went away and I get shooting pain in my face evey so often. I also suffer from daily headaches. No over the counter medicine has helped. Booze helps, but the weight gain and hangovers get old. Oxycodone products helps a lot. But who wants to prescribe them?
My Dr. just prescribed Nuerotin for me. Initially I was looking forward life without daily headaches. But I'm starting to freak out reading all the horror stories of this drug. I'm starting to think that I'd be better off being an Oxy junkie.
It would be nice to hear from people who've had positive results from taking Neurotin for headaches. OR any other drugs that have helped with headaces.
Thanks.
Todd
I had Bells Palsy about 8 years ago. It never completely went away and I get shooting pain in my face evey so often. I also suffer from daily headaches. No over the counter medicine has helped. Booze helps, but the weight gain and hangovers get old. Oxycodone products helps a lot. But who wants to prescribe them?
My Dr. just prescribed Nuerotin for me. Initially I was looking forward life without daily headaches. But I'm starting to freak out reading all the horror stories of this drug. I'm starting to think that I'd be better off being an Oxy junkie.
It would be nice to hear from people who've had positive results from taking Neurotin for headaches. OR any other drugs that have helped with headaces.
Thanks.
Todd
katkat
02-05-2006, 02:36 PM
Ok here is a positive experience. I resisted taking it the first time because it made me so dizzy, but after the surgery the nerve pain was very bad. It would awaken me in the night, feeling like a hot iron was laid on my ankle. I took the neurontin but started very slowly at 200 mg per day to 1800 mg per day. It really works. It just takes a couple of weeks for the symptoms to go away. I had some 300mg pills left over and took one a few weeks ago.....I"ve been off them for a long time......anyway that 300mg pill made my computer monitor move around on the desk....or at least it seemed to be moving. lol
Give it a chance and start with a low dose and work your way up.
Give it a chance and start with a low dose and work your way up.
momofsix
02-05-2006, 03:24 PM
Of course, as you hear often, everyone is different and reacts differently to drugs. HOWEVER, I have found, after years of trying many different types of medications, that the best is plain oxycodone - as long as you're disciplined enough to limit it. I tried Neurontin. It didn't do anything for the pain, and unfortunately, the terrible side effects I experienced didn't kick in until I had tapered up to 1800 mg. By that time, the withdrawal effects were terrible. I have never been so sick in my life. It's like destroying your whole body and life just to fix one spot - not worth it in my opinion.
katkat
02-05-2006, 04:05 PM
something else I forgot to say......if you try neurontin and it doesn't work or the side effects are still awful? There are other "nerve" medications you can try. Anything is better than being on a narcotic for the rest of your life.
momofsix
02-05-2006, 04:41 PM
I'm wondering how being on a narcotic for the rest of your life is any worse than being on an anti-seizure drug for the rest of your life. At least with the oxycodone, the only negative I've found is the tolerance problem. However, I intentionally keep my dose low and at least get a few hours of relief - no dizziness, sleepiness or cognitive problems, etc. that the anti-seizure meds cause. The narcotic meds also don't damage any other organs or body systems over the long-term the way the anti-seizure meds can.
dalirahma
02-05-2006, 07:37 PM
Wow, thanks for the insight. Keep it coming. I'd really like to hear other people's experiences with other nerve meds and/or oxycodone.
I too wonder if I want to take anti-seizure meds for the rest of my life. After all, I have pain, not seizures. But I'm going to try the Nuerotin. I started taking it today. So far I feel like I cannot focus on anything, I'm tired and it really bothers my stomach. I know these effects may fade, we'll see.
Thanks again. I enjoy reading about other people's experiences. Now I gotta watch the Super Bowl...or fall asleep.
I too wonder if I want to take anti-seizure meds for the rest of my life. After all, I have pain, not seizures. But I'm going to try the Nuerotin. I started taking it today. So far I feel like I cannot focus on anything, I'm tired and it really bothers my stomach. I know these effects may fade, we'll see.
Thanks again. I enjoy reading about other people's experiences. Now I gotta watch the Super Bowl...or fall asleep.
katkat
02-05-2006, 09:08 PM
I can only tell you of my experiences. First I took Neurontin for about a year and a half. It took away the nerve pain,,,,,that is the pain that had that tingling, burning, searing and hot stabbing pain. Neurontin is not a narcotic pain reliever.....how it works I do not know, but I know it does. When I got off of it I slowly decreased the dose and had absolutely no side effects. Then a few months later I got on Kadian which is a time released morphine.....a narcotic. I had the side effect for the first few weeks of dizziness and sleepiness but that went away. What didn't go away was the severe constipation. It didn't matter how much fiber or water or fruits and vegies I ate it was still there. Then one thing led to another, ....and thats a whole other story. I'd also say that after a few months the pain came back so I had to increase my dose, that happens every few months. After a while I was wondering how long I could keep raising the dose and still be able to take a cr*p. lol I laugh now but it was a serious thing. When I went to my girlie doctor each year she would ask if I was still on the Kadian. I said yes and she shook her head and said "you are too young to be on that stuff, you need to get off of it." I got mad because of the pain I had to deal with, but later I understood what she was saying.......she told me it would mess me up and actually "turn off" the intestines. My experience with narcotic drugs was not good and it got worse and worse.
I am going to see a physiatrist on the 13th of this month, I plan on starting some physical therapy (ASTM) and maybe some strengthening exercises but I am planning on asking about the new nerve drug,,,,I forget the name of it, something like Lycrex.....shoot I know that isn't right, but anyway good luck to you all........whatever you get stuck taking.
~sigh, to be young and pain free again.
I am going to see a physiatrist on the 13th of this month, I plan on starting some physical therapy (ASTM) and maybe some strengthening exercises but I am planning on asking about the new nerve drug,,,,I forget the name of it, something like Lycrex.....shoot I know that isn't right, but anyway good luck to you all........whatever you get stuck taking.
~sigh, to be young and pain free again.
dalirahma
02-05-2006, 10:43 PM
Thanks for sharing your experience. If you happen to find out the name of the new drug, I'd would appreciate hearing what it is.
momofsix
02-06-2006, 12:02 AM
The new drug is called Lyrica. It's a "cleaner" version of Neurontin with fewer side effects.
katkat
02-06-2006, 03:12 PM
Yes that is the name......I hope to try it this month. I've been without any medication of any kind since mid November, once the temps warm up I will have lots of work to do outside, I'll need something. Besides I want to pull my hair out some days.
dalirahma
02-10-2006, 07:19 PM
So I've been on Nuerotin for a week. I'm plesantly surprised how well it has controlled my headaches. I really don't feel too many side effects, but I do feel a bit of drowsiness. But it's weird because I feel like I can either go to sleep, or just shake it off. It definately comes in handy at nighttime when I want to sleep.
So far, so good. I hope it continues to help. Has anyone felt that this drug stopped working for them over time?
Thanks.
Todd
So far, so good. I hope it continues to help. Has anyone felt that this drug stopped working for them over time?
Thanks.
Todd
dalirahma
02-10-2006, 10:31 PM
lindawainwright, you say:
The narcotic meds also don't damage any other organs or body systems over the long-term the way the anti-seizure meds can.
What are the damages you speak of? I haven't read anything like that. I want to make sure I'm hurting myself more.
Thanks.
Todd
The narcotic meds also don't damage any other organs or body systems over the long-term the way the anti-seizure meds can.
What are the damages you speak of? I haven't read anything like that. I want to make sure I'm hurting myself more.
Thanks.
Todd
momofsix
02-11-2006, 01:09 AM
You would need to read the product monographs. I can't remember exactly now, but I do remember things like having to have your liver, etc. tested regularly for problems.