pauli44
12-10-2008, 03:54 AM
Hi everyone!I just wanted to share with you all what happened to me.I slowly,slowly thought that I was losing my mind,was horribly depressed and felt like I was sliding into a very deep hole.At the same time I had the most horrendous feeling in my hands,feet and even in my mouth!!Painful,tingling like crazy,felt like my feet and lower legs were in a vice,could not walk properly,could hardly sleep because of all these stange feelings!!There is so much more but I will not bore you with it,but finally I went to see a Neurologist who gave me Gabapentin and since that day, about a month ago ,I have quite quickly returned to the person I knew and quite liked.It has worked on the nerve endings and got rid of all those disgusting symptoms!!
I just hope that I can help one of you sufferers,as that would complete my happiness!!
Take care
Hope to hear from you
Pauline
I just hope that I can help one of you sufferers,as that would complete my happiness!!
Take care
Hope to hear from you
Pauline
Sponsor
biologiahombre
12-10-2008, 09:40 AM
How much Gabapentin (Neurontin) are you on? Be aware that while it works well for some people it also has the tendancy to cause weight gain, which compared to the troubles we go through is nothing! Also you will need ever increasing dosages. I am up to3600 mg per day now after almost 4 years of taking it, but I also started out on a high dose.
GE
GE
snowmelts
12-11-2008, 09:26 PM
I have Sensory Axonal PN.
I am taking Gabapentin (generic Neurontin).
Be very aware there are some serious horror stories associated with taking too much for your own system. This is a great med for some and a serious danger for others.
I take a BARE MINIMUM.
An unbelievably low doseage of 200 mg in morning, 100mg 4 hours later, another 100mg 4 hours after that and 200 mg at bedtime. That makes my total only 600mg total per day.
Yes, my capsules are in 100mg doses and I can chose to take either 1 or 2.
They way I do it, as described above, holds off the hot cold electrical burning just fine as well as controlling a major amount of creepy crawlies, although sometimes it feels worse so I only wait 3 hours instead of 4 between the 100 mg doses.
My Dr says I should take 200 mg each does but when I tired that much day after day I found myself very parinoid about any car in back of me when driving. So I cut back to the 600 total, as described above, instead.
Although all that horrid main pain is controlled, I do still get "some" of the creepy crawly tinglies all the time, not a lot, but enough to say they are always there. That's a small problem I'd rather have instead of that additional car driving parinoia.
For many years I took Carbamazepherin. (My PN started in winter 93-94) That got rid of all the pain nicely. But after many years I began having trouble with it making me very very VERY sleepy all day so my neuro switched me to Neurontin maybe 6 or 7 years ago or something like that.
I must say with Neurontin some of my muscle "numbness" disappeared. I CAN move all my toes now and with Carbamazepherine I could not. I still have no decent balance on the right side of one foot and leg, but I am thrilled to be able to actually control and move my toes!
I can also feel the floor and car petals under the ball of my foot and I could not do so with Carbamazepherine. True, it feels rather like tingly marshmellow on the right half of the the foot but at least it's a feeling that the foot is physically touching something, an awareness that I didn't have with the prior med.
I am taking Gabapentin (generic Neurontin).
Be very aware there are some serious horror stories associated with taking too much for your own system. This is a great med for some and a serious danger for others.
I take a BARE MINIMUM.
An unbelievably low doseage of 200 mg in morning, 100mg 4 hours later, another 100mg 4 hours after that and 200 mg at bedtime. That makes my total only 600mg total per day.
Yes, my capsules are in 100mg doses and I can chose to take either 1 or 2.
They way I do it, as described above, holds off the hot cold electrical burning just fine as well as controlling a major amount of creepy crawlies, although sometimes it feels worse so I only wait 3 hours instead of 4 between the 100 mg doses.
My Dr says I should take 200 mg each does but when I tired that much day after day I found myself very parinoid about any car in back of me when driving. So I cut back to the 600 total, as described above, instead.
Although all that horrid main pain is controlled, I do still get "some" of the creepy crawly tinglies all the time, not a lot, but enough to say they are always there. That's a small problem I'd rather have instead of that additional car driving parinoia.
For many years I took Carbamazepherin. (My PN started in winter 93-94) That got rid of all the pain nicely. But after many years I began having trouble with it making me very very VERY sleepy all day so my neuro switched me to Neurontin maybe 6 or 7 years ago or something like that.
I must say with Neurontin some of my muscle "numbness" disappeared. I CAN move all my toes now and with Carbamazepherine I could not. I still have no decent balance on the right side of one foot and leg, but I am thrilled to be able to actually control and move my toes!
I can also feel the floor and car petals under the ball of my foot and I could not do so with Carbamazepherine. True, it feels rather like tingly marshmellow on the right half of the the foot but at least it's a feeling that the foot is physically touching something, an awareness that I didn't have with the prior med.
jam36mo
12-15-2008, 11:58 AM
Jam36Mo: The last 2 months of primary care doctor and a neurologist expermenting with giving me various doses and meds (gabapentin, cymbalta and weeklt methotroxate has me feeling like a guinea pig but I'm following his suggestions since this neuropathy and nerve pain, especially the immense swelling in my legs and feet, leave me open to any treatment that might. I find hearing from others with similar diseases very helpful and less suspcious of my initial doctor. Thanks for the encouragement. I hope your situation is remedied quickly!
jam36mo
12-15-2008, 12:13 PM
Thanks, Paul. I hadn't thought of my self as sick, just disoriented, when my primary care doctor sent me to a neurologist who did a 45minute "muscle test" on me - what an experience. Together they decided I needed neurontin for the numbness and tingling in my legs and feet, so far no relief for the grossly swollen legs and feet. The first Dr. now is putting me on Cymbalta (I guess for depression) which I only take at night together with larger dosage of Neurontin at bedtime. It has helped, but as you said, makes me very sleepy. I haven't felt too "loopy" to drive and shop. I do take a 4-prong cane when I'm out but rarely use it
woondog
12-25-2008, 12:58 AM
Hi there. Neuronton was originally prescribed for a different condition. Then they
found out that it helped patients suffering from pn. Soon, there were 50 times more
(approx) more pners getting the prescription for pn. The Food and Drug Administration
tried to take it off the market but there was a upswell of protest and they left it
alone. I have had PN for 25 years. About 13 years ago, Neurontin was put on the market
and for awhile, I thought it was a miracle drug. It worked for about 5 years, then, no
matter how many pills I took...there was no relief. I now take a much stronger
drug...Nortryptiline and dilaudid and that works fabulously. So, I am grateful.
Ishould tell you that I have diabetes.
found out that it helped patients suffering from pn. Soon, there were 50 times more
(approx) more pners getting the prescription for pn. The Food and Drug Administration
tried to take it off the market but there was a upswell of protest and they left it
alone. I have had PN for 25 years. About 13 years ago, Neurontin was put on the market
and for awhile, I thought it was a miracle drug. It worked for about 5 years, then, no
matter how many pills I took...there was no relief. I now take a much stronger
drug...Nortryptiline and dilaudid and that works fabulously. So, I am grateful.
Ishould tell you that I have diabetes.
snowmelts
12-25-2008, 11:08 AM
Hi there. Nuronton was originally prescribed for a different condition. Then they
found out that it helped patients suffering from pn. Soon, there were 50 times more
(approx) more pners getting the prescription for pn. The Food and Drug Administration
tried to take it off the market but there was a upswell of protest and they left it
alone. Yes it is an anti-convalsant, a drug originally developed to control epilipsy. The reason the gov't tried to stop it's being prescribed is because too many users of Neurontin coimmitted suicide. This announcement concerning the warning was on our local TV news at the time ( a few years ago). Be VERY aware if you notice any emotional changes while using Nurontin. That's why I take bare minimum and even cut that back after I noticed it made me more nervous while driving.
found out that it helped patients suffering from pn. Soon, there were 50 times more
(approx) more pners getting the prescription for pn. The Food and Drug Administration
tried to take it off the market but there was a upswell of protest and they left it
alone. Yes it is an anti-convalsant, a drug originally developed to control epilipsy. The reason the gov't tried to stop it's being prescribed is because too many users of Neurontin coimmitted suicide. This announcement concerning the warning was on our local TV news at the time ( a few years ago). Be VERY aware if you notice any emotional changes while using Nurontin. That's why I take bare minimum and even cut that back after I noticed it made me more nervous while driving.
jam36mo
12-25-2008, 11:11 PM
Hi there. Neuronton was originally prescribed for a different condition. Then they
found out that it helped patients suffering from pn. Soon, there were 50 times more
(approx) more pners getting the prescription for pn. The Food and Drug Administration
tried to take it off the market but there was a upswell of protest and they left it
alone. I have had PN for 25 years. About 13 years ago, Neurontin was put on the market
and for awhile, I thought it was a miracle drug. It worked for about 5 years, then, no
matter how many pills I took...there was no relief. I now take a much stronger
drug...Nortryptiline and dilaudid and that works fabulously. So, I am grateful.
Ishould tell you that I have diabetes.
QUOTE Jam 63: I found that taking the Neurontin for my neropathy of legs and butt, while giving some relief, I had to stop tsking it because it caused my extremeties to swell badly. So this week I am taking Lyrica but while it really helps te pain and swelling, it is too expensive to order (these were doctors' samples). I don't have diabetes but my troubles began with a fall down a flight of stairs. Have some pinched nerves in my back that's mysteriously causing the nerve pain in m legs and right hand. It doesn't knock the nerve pain out completely but help dull it to a bearable level. Doctors have now added Cymbalta and samples of Lyrica. Lyrica helps but of course is a new and thus expensive drug, so. . . .[/QUOTE]
found out that it helped patients suffering from pn. Soon, there were 50 times more
(approx) more pners getting the prescription for pn. The Food and Drug Administration
tried to take it off the market but there was a upswell of protest and they left it
alone. I have had PN for 25 years. About 13 years ago, Neurontin was put on the market
and for awhile, I thought it was a miracle drug. It worked for about 5 years, then, no
matter how many pills I took...there was no relief. I now take a much stronger
drug...Nortryptiline and dilaudid and that works fabulously. So, I am grateful.
Ishould tell you that I have diabetes.
QUOTE Jam 63: I found that taking the Neurontin for my neropathy of legs and butt, while giving some relief, I had to stop tsking it because it caused my extremeties to swell badly. So this week I am taking Lyrica but while it really helps te pain and swelling, it is too expensive to order (these were doctors' samples). I don't have diabetes but my troubles began with a fall down a flight of stairs. Have some pinched nerves in my back that's mysteriously causing the nerve pain in m legs and right hand. It doesn't knock the nerve pain out completely but help dull it to a bearable level. Doctors have now added Cymbalta and samples of Lyrica. Lyrica helps but of course is a new and thus expensive drug, so. . . .[/QUOTE]