Looking for some advice and help

I have MS and so now I have seizures and at first I was on Gabapentin and Keppra and kept having seizures so they put me on Dilantin.  The fist toxic reading was 22, they cut back for one day and I went back to normal and when I had my second reading I was at 44, so we cut it out for three days, and I had one of the worst weekends on the books, I even had some seizures because I bit my tongue.  I feel deathly ill and so this morning they took my levels and I am waiting to see what they show, has anybody ever been though this horror.

Thanks for the reply I have really limited information about seizures, I knew of epilepsy, knew good friends with it, and I remember hearing about diliantin from a friend I knew who had seizures after a bad car accident, and it really well for her. Some reason we are having problems, today I just got a call from the doctor's that the level was normal and wanted me to start it again, I said NO. I have never been this sick in my life, truly, I was dx almost 12 years ago and enjoyed remission, till about 7 years ago. I told him I will stay on the gabapentine and the keprra, but no I can't do this again. There has to be a problem, now I am on interferon and that is a big problem, but before my first shot I was already sick and felt toxic that just put it at a very bad place. I also have problems with biting my tongue, my said she slapped my face, poor thing, to make me stop. I used to also have auras I don't anymore, is this normal. It seems that with every seizure it is getting worst is that also normal or not. Thank you so much this is all new to me.

Thank you for giving me some of your thoughts, you are correct I do need seizure meds, as much as I hate them,. I just talked to my neruo and he is making take the full dose of gabapentin which I think is 300mgs three times a day and keppra 500 twice a day. I just can't get my thoughts together and so mixed up, people with MS don't usually get seizures, it is only in about 4 to 3%, so I am kinda of alone on this, I go the MS forums and they have no idea about seizure meds, so I go to where I know someonee will know what is going on. I have 4 lesions on my brain, but there is this one old big one and that is the problem. Truly I am getting educated really quickly again. When I first got sick there was no Internet, they just told you the news, my doc cried, and you are off and running with dangerous drugs. I went into remission, and about 7 years ago I started to have these staring spells, to be honest I liked them, than as time went on I didn't really think about it, and than they started to get worst, I loss conscious, that freaked me out, went back to my doc and he didn't even think about it. Finally when I had a seizure in front of my mother while we were running that I realized I had big problems. I went and changed doctors and went to this brand new VA clinic, I am ex military, and within a month I knew I was having seizures, it took them not long to put it all together. Since then I am fighting all the way, but I just can't stop having these seizures. What is up with night time ones, OMG, and biting your tongue, that is awful. My only sorrow is that some young children live with this and I give them kudos, this is not a fun disease, although what disease is. Hand down you guys rock. Thanks Oh I am also diabetic

I was concerned about long term effects of anti-epileptic drugs and Multiple Sclerosis so I contacted the NMSS of Canada and here's my reply:


The risk of epilepsy seems to be three times higher in patients with multiple sclerosis than in the general population (107–109). Seizures can be the presenting symptom of this disease but have been observed in relapsing–remitting as well as in secondary or primary progressive multiple sclerosis. It is agreed that, in the contest of an acute relapse, seizures are benign and self-limiting and do not necessarily require treatment, whereas recurrent seizures unrelated to relapse should be treated (109). It has also been suggested that in patients with multiple sclerosis, epilepsy has a good prognosis. Interferons, which are often used for the treatment of multiple sclerosis, may have proconvulsant effects, although these data are not considered conclusive (110). An important consideration is the effect of anti-epileptic drug treatment on the symptoms of multiple sclerosis. Fatigue, vertigo, ataxia, diplopia and cognitive slowing can be severe in this disease and can be aggravated by several anti-epileptic drugs which can also mimic disease activity (109).

Up to now, no clinical trials for treatment of epilepsy in patients with multiple sclerosis have been performed and, therefore, no clear recommendations can be given. Clinically important interactions between drugs used for chronic treatment of multiple sclerosis and antiepileptics have not been observed (111). However, anti-epileptic drugs with a potential harmful impact on motor and cognitive functions should be avoided. Low doses of VPA or LEV, which do not impact on motor or cognitive functions, might be preferred.

(Extracted the below text from the study re MS and anti-epileptic drugs).

Randy