Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Does anyone know anything about the anti-seizure med Gabitril? Is it ok for mito? SIde effects seen with it? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Thank you for the info. Laurie. My PCP is wanting me to try it at night for sleep and pain. He is leaving the decision up to me since I have a history with responding adversely to medications and because I'm more knowledagble about mito. I know when I took Neurontin that the dose had be built up to gradually. Are you saying thats the case for all the anti-convulsants? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 , I was on gabitril for several months- it helped me alot with seizures, migraines and other pain but I had alot of side effects with it. It made me drowsy for the first month and I was put on it when my dysmotility was at one of its worse points- I thought it was getting worse too, but as it ended up, the gabitril was making me sicker- making me vomit more, etc. I'd be very careful with this med, but its worth a try at least. Are your drs suggesting it for pain? I take zonegran and keppra now for seizures and the zonegran has helped me a good bit with pain with little side effects (was dizzy the first few days on it and thats it). Let me know what happens. take care, Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Adrienne, It would be for pain and sleep. I'm not sold on it helping my pain as I don't neuropathic pain at all. I just have severe deep muscle pain. I also hate the feeling of being drugged so I wouldn't like any of them that have a long half life. We'll see.. How are you feeling? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 All the anti-seizure medications can help with the pain of neuropathy and with the myoclonus. I take Lamictal which is another anti-convulsant. I know we shouldn't take Depakote in general, but have not heard that about Gabitril. With all the anti-convulsants, you are usually sleepy until your body gets use to it. I also built up the dosage gradually. laurie > From: LILQT4U1984@... > Reply-To: > Date: Thu, 3 Jun 2004 12:35:41 EDT > To: mito , > Subject: Gabitril > > Does anyone know anything about the anti-seizure med Gabitril? Is it ok for > mito? SIde effects seen with it? > Thanks! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Hi Laurie, Depakote is the equivalent of " Epival " in Canada which is an anti-convulsion just curious can you further tell me why you say that you shouldn't take Epival ( Depakote ) in general. I've been on Depakote for 15 years, I have Myoclonus.. Sal Gabitril > > Does anyone know anything about the anti-seizure med Gabitril? Is it ok for > mito? SIde effects seen with it? > Thanks! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 I never heard of it, but any way there is a very good anti-convulsion which I've been on with allot of success and no side effects that is KEPPRA you should always discuss this with your Doc first.. Sal Gabitril Does anyone know anything about the anti-seizure med Gabitril? Is it ok for mito? SIde effects seen with it? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Sal Some people can tolerate it, but it can cause sudden liver failure in those with mito. It has the potential for liver damage in everyone taking it, but for those with mito it can be sudden and total. I know some folks with mito who have had to have transplants as a result of the Depakote. laurie > > Reply-To: > Date: Thu, 3 Jun 2004 17:33:02 -0400 > To: > > Subject: Re: Gabitril > > Hi Laurie, > > Depakote is the equivalent of " Epival " in Canada which is an anti-convulsion > just curious can you further tell me why you say that you shouldn't take > Epival ( Depakote ) in general. I've been on Depakote for 15 years, I have > Myoclonus.. > > Sal > Gabitril >> >> Does anyone know anything about the anti-seizure med Gabitril? Is it ok for >> mito? SIde effects seen with it? >> Thanks! >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 That is the recommendation of my MDA doc. I have also found that it takes me longer to build up a level than those without mito. This sometimes makes it hard to judge the benefits as the change is so gradual. Another thing you need have monitored is your electrolytes. I have my worse pain when they get out of whack. laurie > From: LILQT4U1984@... > Reply-To: > Date: Thu, 3 Jun 2004 16:51:09 EDT > To: > Subject: Re: Gabitril > > Thank you for the info. Laurie. > My PCP is wanting me to try it at night for sleep and pain. He is leaving > the decision up to me since I have a history with responding adversely to > medications and because I'm more knowledagble about mito. I know when I took > Neurontin that the dose had be built up to gradually. Are you saying thats the > case for all the anti-convulsants? > Thanks! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 That's what I though.? I talked with my Doc about this long ago but he said some can tolerate it without problems if no side effect occur after a few years... Maybe I should talk with him and clarify all this just to make sure but I really do believe that's what he said. Thanks, Sal Gabitril >> >> Does anyone know anything about the anti-seizure med Gabitril? Is it ok for >> mito? SIde effects seen with it? >> Thanks! >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 HI Just a note for those of you who are on Zonegran or plan to go on Zonegran, if you are allergic to the " Sulfer " drugs DO NOT take this Drug.!!! It states in the information they provide. Since so many of us Mito's have allergic reactions to medications I thought it was best that I warn you. I can't take Neurontin so my Pain Management Doc was going to put me on Zonegran, until we saw that patients allergic to sulfer should not take it. Ann-Marie Re: Gabitril , I was on gabitril for several months- it helped me alot with seizures, migraines and other pain but I had alot of side effects with it. It made me drowsy for the first month and I was put on it when my dysmotility was at one of its worse points- I thought it was getting worse too, but as it ended up, the gabitril was making me sicker- making me vomit more, etc. I'd be very careful with this med, but its worth a try at least. Are your drs suggesting it for pain? I take zonegran and keppra now for seizures and the zonegran has helped me a good bit with pain with little side effects (was dizzy the first few days on it and thats it). Let me know what happens. take care, Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Ann-Marie Thanks for the info! laurie > > Reply-To: > Date: Fri, 4 Jun 2004 00:36:23 -0400 > To: > > Subject: Re: Gabitril > > HI > > Just a note for those of you who are on Zonegran or plan to go on Zonegran, if > you are allergic to the " Sulfer " drugs DO NOT take this Drug.!!! It states in > the information they provide. > > Since so many of us Mito's have allergic reactions to medications I thought it > was best that I warn you. I can't take Neurontin so my Pain Management Doc was > going to put me on Zonegran, until we saw that patients allergic to sulfer > should not take it. > > Ann-Marie > Re: Gabitril > > > , > I was on gabitril for several months- it helped me alot with seizures, > migraines and other pain but I had alot of side effects with it. It made me > drowsy > for the first month and I was put on it when my dysmotility was at one of its > worse points- I thought it was getting worse too, but as it ended up, the > gabitril was making me sicker- making me vomit more, etc. I'd be very careful > with > this med, but its worth a try at least. Are your drs suggesting it for pain? I > take zonegran and keppra now for seizures and the zonegran has helped me a > good bit with pain with little side effects (was dizzy the first few days on > it > and thats it). Let me know what happens. > take care, > Adrienne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 I would make sure my liver panels were done frequently as one of the people that Laurie and I know that had to have a liver transplant had been on it quite a while and she went into total liver failure very very suddenly. I'm not trying to scare you, but I do want you to be aware. salvatore gervasi wrote: >That's what I though.? I talked with my Doc about this long ago but he said some can tolerate it without problems if no side effect occur after a few years... Maybe I should talk with him and clarify all this just to make sure but I really do believe that's what he said. > >Thanks, >Sal > Gabitril > >> > >> Does anyone know anything about the anti-seizure med Gabitril? Is it ok for > >> mito? SIde effects seen with it? > >> Thanks! > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Thanks , I will discuss this with my Doc! I've been on Depakote for 15 years and have never had any serious complications except for some chest rashes!! What I new, is if know side effect occurs before 9 month you should be ok.. But, liver failure can occur to young children's. And to adults when mixing with some other anti-convulsion medication.. If possible I would like to learn more about this lady you know how long has she been on Depakote before this happened.. Also what mito disorder she has.? Sincerely, Sal Gabitril > >> > >> Does anyone know anything about the anti-seizure med Gabitril? Is it ok for > >> mito? SIde effects seen with it? > >> Thanks! > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
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