Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi Tonia, I have to disagree with you on the taking of Neurontin. Yes, I seizure if I don't get my Neurontin now but without it I would have had to have surgery done on the brain to relieve my Trigeminal Neuralgia. The Neurontin cut off the attacks like a light switch being thrown. As for drugs being used for other than tested, we would have nothing to take as RSD is so little researched in this country. Clonidine is for blood pressure but again it worked on the burning pain of RSD for me, at least for the first year so I would never want to be without it. I think the important thing about Neurontin is that we all know that you can't strop it cold turkey that it must be weaned down slowly and then another one started up to take it's place. It does concern me that the doctors don't seem to realize the bad side effects. It says right on it's fact sheet about it causing a semi coma and that happened to me three times in the hospital they never figured that out instead blaming me for overdosing and then on allergic reaction to antibiotics. They called in a slew of doctors and not one got this right. And now that I know what went wrong, thanks to Greig picking up a piece of paper in the pharmacy, the doctors don't seem to care when I tell them. That is what worries me, not taking the drug but doctor not knowing or caring about such a strong medicine. Of course I would rather be on Topamax or Zonegran but am allergic so I can't. Neurontin right now is the only way I can go. Felice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Felice, I know what you are saying.....and, I understand, even if what I've been hearing has totally got me scared to death. But, I've just got to remember that what might work for one person might not for another......and, just because I had some strange side effects while on it.....and, just because there is a woman in a coma from starting to wean off of it exactly like her doctor told her to.....a 1/2 a pill........that doesn't mean that EVERYONE that is on it will have the same problem if for some reason they have to stop taking it too. I do know that Zonegran 20mg/day doesn't do much.....I just had a major muscle spasm here about 5 minutes ago and it made me kick my computer desk! ouch.... Just please be careful on the Neurontin Felice, please??? Tonia -------Original Message------- Hi Tonia, I have to disagree with you on the taking of Neurontin. Yes, I seizure if I don't get my Neurontin now but without it I would have had to have surgery done on the brain to relieve my Trigeminal Neuralgia. The Neurontin cut off the attacks like a light switch being thrown. As for drugs being used for other than tested, we would have nothing to take as RSD is so little researched in this country. Clonidine is for blood pressure but again it worked on the burning pain of RSD for me, at least for the first year so I would never want to be without it. I think the important thing about Neurontin is that we all know that you can't strop it cold turkey that it must be weaned down slowly and then another one started up to take it's place. It does concern me that the doctors don't seem to realize the bad side effects. It says right on it's fact sheet about it causing a semi coma and that happened to me three times in the hospital they never figured that out instead blaming me for overdosing and then on allergic reaction to antibiotics. They called in a slew of doctors and not one got this right. And now that I know what went wrong, thanks to Greig picking up a piece of paper in the pharmacy, the doctors don't seem to care when I tell them. That is what worries me, not taking the drug but doctor not knowing or caring about such a strong medicine. Of course I would rather be on Topamax or Zonegran but am allergic so I can't. Neurontin right now is the only way I can go. Felice ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi all, I could not take neurontin for even 2 weeks. I totally lost the use of my legs and my husband and daughter had to work them for me in order to get up the stairs. I also was extremely shaky and my legs and feet would not stop jerking. When listing my legs (when they did) my feet would fall and just hang. Of course this happened in public....nothing embarrassing happens when we are alone, lol. neurontin is one of those drugs that either works great or you just can't take it. at least that is my conclusion....... Deb L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Hey everyone, I'm reading all these e-mails on Neurontin and I have to say I'm getting a little scared. I started on Topamax but it wasn't really doing anything and my neurologist said it could cause tingling, which could be confused with symptoms of the RSD. He put me on Neurontin and am now up to 2700 mg. He always has me increase it slowly and I'm sure he would have me decrease it slowly, but I'm pretty nervous about that now. I don't know what to do....should I stay on it?? Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Lori, If you aren't having any problems or anything while taking the Neurontin....then no, I don't see any reason to not take it. But, what everyone is talking about, is if for some reason you do have to come off of it. THAT is when Neurontin can be very dangerous. But, so can't ANY medication. But, anti-seizure medications are one of the most dangerous Medications to be taken off of, especially if you are taking it for something besides epileptic seizures. What the whole thing is, is the fact that Neurontin was Never tested or FDA Approved for ANY Other Diseases or Purposes besides Epilepsy. Because of this, The FDA can not guarentee its safety when taken for other things. And, There have been many people that have been weaned off of it with no problems at all. Then, there are others that have almost died or have died because of it. Or, Taken off Cold Turkey....some have died, others, like me....went thru total hell, but lived. You just never know. But, where you aren't having any troubles while on it, I wouldn't worry about it. Tonia -------Original Message------- Hey everyone, I'm reading all these e-mails on Neurontin and I have to say I'm getting a little scared. I started on Topamax but it wasn't really doing anything and my neurologist said it could cause tingling, which could be confused with symptoms of the RSD. He put me on Neurontin and am now up to 2700 mg. He always has me increase it slowly and I'm sure he would have me decrease it slowly, but I'm pretty nervous about that now. I don't know what to do....should I stay on it?? Lori ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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