Trying Again with Gabapentin & Dilantin

Well the neurologist is trying again. The pregabalin (Lyrica) was the drug that made me totally incapacitated and drunk like (even with a hangover).So General Practitioner decided to put be back on gabapentin - no side effects, but no effect on leg spasms so far (not even a week on them).Now neurologist is suggesting pheytoin (dilantin) now this one's side effects are again listed as drowsiness, dizziness etc etc. AND blisters, burning of skin, and irreversible hair growth.I personally think I should up the dosage of the gabapentin to one at night and one in the day as the drug is ok.Any advice out there?

Dilantin was the first med my neuro put me on. It had no effect whatsoever on the twitching and my hands started trembling soon after I started on it. No other side effects, though, and the trembling could have just been BFS. Was on dilantin for about two weeks. Neurontin was the next med and I tried it for about three weeks. It seemed that I slept somewhat better, but there was no noticeable reduction in twitching or any of the other BFS symptoms. No other side effects though. Now it's on to Klonopin! Probably nothing will work, but I think its worth trying in case it does. Good luck!

I learned a long long long time ago, that IF I am going to take a medication, I NEVER read the side effects. Now, the only meds I usually take are antibiotics (for like a sinus infection or something like that) so one way or another, if I want to get better I'm going to have to take the med anyways so it doesnt really matter what the side effects are, because getting better from something like a sinus infection and such is not an option...you need to do it. I have chosen not to take any meds for my BFS, for this exact reason. I wanted to try every other possible coping technique before taking a med because of the side effects. My advice, if you trust your Doctor, and you have discussed the med with him/her, and you are going to take a medicine anyway...dont read the side effects. Of course, be smart about it...if you break out in a rash or have trouble breathing, or anything major like that, go to the ER...but dont read the side effects, because chances are, if you read about it, its going to happen. Trust me on this. It is amazing the games our minds play with us.DPR - The trembling (tremors) are definitely part of your BFS...I remember, you & I have similiar stories to the start of our BFS journy. Tremors come & go so much its sometimes hard to tell whats causing them, but BFS most definitely does. Have a wonderful Tuesday everyone! ) ~*~Amy~*~

MomoMy Neuro has avoided giving me Phenytoin he said because of the side effects Have been taking Gabapentin for about 18 months dose is 3 X 400 mg 3 times per day.No noticeable side effects other tan some weird dreams.Rick Sydney Australia

Well I agreed to try phenytoin and it is bad bad bad news. At first just a few headaches then the does increased and I have had a week of sheer hell. Like serious sunburn and poison ivy at the same time. Really bad toxic side effects. And the GP didn't know what to think. I thought it was peri-menopause but I think it may have been the drug giving hot sweats and cold shivers. The boils/carbuncles on my feet made me want to blow them away with a gun as preferable to the burning and intense itching. And had to go on steroids, and antihistimines just to reduce the effects. Hopefully will be better at the end of a week.I would advise no one to even try it. I had no bad effects from gaberpentin just it didn't work great as I was on a low dose.

Momo,Have you tried Klonopin? It works for me. Are your problems limited to your legs? If the problems are not interefering that much with life you might want to take nothing. Taking nothing is not an option for me. Klonopin has caused me zero side effects.Krackersones

Oh dear.Saw my neuro toady after giving gabapentin a try now he's just prescribed 300mg phenytoin. Ive put up with it for 5 years i suppose nothing out there can cure proper bfs its something you have to soldier on with.I'm not going to even try it

Raindog,Have you tried Klonopin? You have such a great attitude that I wonder whether you need anything. If you are on the fence, I would recommend trying Klonopin at least just once. If it makes an amazing difference, it gives you something to think about. If it does little, then of course toss it aside. I do not want to sound like a drug pusher but I have been amazed at how much this drug has helped me and so instantly.Krackersones

Ive been takin the gab for about a week. Started off taking 1 a night. It helped sleep, but wasnt takin me through the wholenight.Nuerohad me up it to 2 a night, I sleep much better. No side affects as far as I can tell, or maybe I just dont remember due to forgetfulness, lol

Raindog,You are so right about taking a drug for symptom relief versus taking it to actual prevent harm. Klonopin does not prevent harm as far as I know although with Highpriority's dx of partial seizures and the fact that Klonopin is an antiseizure med I wonder (wishfully of course) that maybe my symptoms have some connection to seizures and this is why the Klonopin helps so much. Your list of things that you do to help (chilling, etc) tells the whole story. I would never go near Klonopin if I could even sit down comfortably for ten minutes without it. I have no idea what happened with my nerves but the feeling before the Klonopin and when I go off it is unreal. No one can see it but I would not wish it on my worst enemy. I am hoping one day the sensation goes away, so I will keep going off the Klonopin every now and then to see if I'm cured of it. Basically, I think if you can sleep, sit down and read a book, and work without people asking you if something is wrong and wanting to quit then you should stay away from symptom relieving medication. If you can't do these things then quality of life is just about a zero.I am so glad to hear about your neuro's benign view of your condition although your excellent health despite the twitching for so long makes that pretty obvious to even us nonprofessionals.Krackersones