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    Old 03-11-2004, 02:14 PM   #1
    emjsmith
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    Neurontin

    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.
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    Old 03-11-2004, 04:56 PM   #2
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    Re: Neurontin

    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.

     
    Old 03-14-2004, 06:01 AM   #3
    riceneuroni
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    Re: Neurontin

    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

    Last edited by riceneuroni; 03-14-2004 at 06:02 AM.

     
    Old 03-14-2004, 06:40 PM   #4
    daubie
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    Re: Neurontin

    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
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    Car Accident 2/2/02
    Herniated disc L5/S1
    Epidurals x3, PT 4 mos, some relief, but constant foot pain and numbness continued
    Microdiscectomy 6/6/03
    9/5/03 still have foot pain and numbness but recovered fine from surgery
    1/19/04 I am 7 mos post op. I still have the same foot pain as before surgery. Doc agrees it is probably permanent nerve damage. Started neurontin this week. Still glad I had the surgery though!

     
    Old 03-15-2004, 04:26 AM   #5
    Jennie Coburn
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    Cool Re: Neurontin

    ---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.

    Last edited by Jennie Coburn; 03-15-2004 at 04:52 AM.

     
    Old 03-15-2004, 10:13 AM   #6
    Shirley_I_am
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    Re: Neurontin

    [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.
    Shirley_I_Am
    Quote:
    Originally Posted by lindawainwright
    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.

     
    Old 03-16-2004, 04:21 PM   #7
    emjsmith
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    Re: Neurontin

    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.

    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.

    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.
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    Last edited by emjsmith; 03-16-2004 at 04:22 PM.

     
    Old 03-16-2004, 10:19 PM   #8
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    Re: Neurontin

    Quote:
    Originally Posted by emjsmith

    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.

    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.
    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.

    Last edited by snowmelts; 03-16-2004 at 10:41 PM.

     
    Old 03-17-2004, 08:54 AM   #9
    smooth69
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    Re: Neurontin

    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.

     
    Old 03-18-2004, 09:22 AM   #10
    Kathim
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    Re: Neurontin

    Quote:
    Originally Posted by emjsmith
    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.

    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.

    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.

    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

     
    Old 03-23-2004, 04:37 PM   #11
    nabil
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    Re: Neurontin

    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..

     
    Old 03-23-2004, 07:32 PM   #12
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    Re: Neurontin

    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

     
    Old 03-24-2004, 10:55 AM   #13
    emjsmith
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    Re: Neurontin

    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!!
    Quote:
    Originally Posted by nabil
    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..
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    Old 03-24-2004, 11:03 AM   #14
    emjsmith
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    Re: Neurontin

    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.
    Quote:
    Originally Posted by Kathim
    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
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    Old 03-24-2004, 11:12 AM   #15
    emjsmith
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    Re: Neurontin

    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!!!!
    Quote:
    Originally Posted by snowmelts
    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.
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