Neurontin and ALS? Head Injuries?

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Dang Lori! Sorry my phone is off, my daughter is sleeping finally after a long long day.....its a good sleep though! I will tell ya about that later. Anyway, my miracle doc said that everyone is different in how the pain is after. See the ouch I cant move pain was about a week, the rest of the pain that was really bad was because it was my back, and I couldnt lay on it or it hurt like hell. It was the best thing that has ever happened to me health wise as you know. So, when? Oh I hope he has a good doctor! I had to have steroid injections in specific nerves to make sure that they were the exact ones that needed to be burned. If the steroid worked even for a week or two, then they knew which nerves to go in and do. It hurt to have it done, woulda loved some IV of something, but resorted to 4mg of xanax. They then used a 16' needle to get to the nerve. (They can actually watch what they are doing through like this xray looking machine) and then they will hit then nerves and shock them again to make sure they have the right ones, if it hurts and it is the usual pain, its the right one....double checking again before they burn it. (that my friend hurt like sh**!) Oh Lori girl, details, when? Where?
Hugs, Kari
 
hey al i hope your right i understand the toxins and genetic predisposition im hoping like you any many others that sometime soon they will figure it out and have a cure your bottom quote on the bottom i like and believe in daily and it makes life so much more exciting and more joyful
 
Yesterday I saw this old thread and lights went off in my head. My PALS was diagnosed in 11/10 with MND/likely ALS. But 16 months prior to that, he had a severe Trigeminal Neuralgia attack and was put on Neurontin. He as been taking 1800 mg per day for the last 15 months! His docs, of course, know of this, but they have not made any connection between the ALS and the TriGem/Neurontin.

Reading this thread, I see that there are a couple of cases reported where Neurontin has been taken prior to a ALS ALS diagnosis, but it is not clear enough that there is any connection. Of course, it it troubling that no one seems to know how this drug works! I need some help here, our hopes have be raised, but we are fearful that there is no real connection. Even if there is a causal relationship between this drug and ALS, has the damage been done? Or is there a possibility that going off the drug will get rid of this horrible disease.

Getting off Neurontin would be tricky, because my PALS first tried Tegretal (the drug of choice for TriGem), but he had a serious allergic reaction to Tegretal. We don't know if any other drug would be as effective as Neurotin, which has totally stopped the TriGem attacks. There is a near cure, but it is brain surgery to separate the nerve and the capillary which are rubbing and the cause of the TriGem.

We are going to an ALS clinic for the first time in 10 days at the Barrows Neurological Institute in Phoenix AZ. We now live in the middle of the state, a long way from all of our doctors.

If anyone has some further information on can shed some light on this situation, we are sitting very anxious to find out what you know.

Thanks
Will:shock::|
 
My husband starting taking it this year and had not taken it prior to his diagnosis.
 
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