hope you're doing well.
This is first post on the Medhelp forum, but I've been a patient for a long time.
I am a 30-year old man. I suffer from multiple sclerosis and also epilepsy, which is, they say, a result of the MS.
I've had what I call "mini seizures" for over 10 years now, and one big one (grand mal) about two years ago.The smaller ones always manifest in the same manner, they would wake me up in the morning, I would get a sudden shock in my head, my heart starts racing like crazy, sometimes I got a sort of a strange taste of iron in my mouth, and before therapy I used to also get deja-vu symptoms and sometimes a twitch in my left arm. Those attacks were ignored by my MS doc, with the explanation that I have some kind of vasovagal syncope (?), and it took the grand mal for them to start taking treating me seriously for it.
I was put on Depachine (valproat) 600 mg and Trileptal (oxcarbazepine) 600 mg. The deja-vu feeling after that was no more, and there was no more twitching, but despite upping the dose to the maximum I still get the heart-pounding and that sudden feeling in my head like a shock and like I will drop to the ground. So the attacks are less severe, but definitely still there.
Sorry for the long intro, here are the questions for which I would love to hear your input.
- my attacks happen regulary almost like clock work - about once a month. When I wake up with my heart pounding, I know that that day I will have about 10 of those episodes. On those days I don't,for instance, drive my car or bike and I try to avoid noisy places. On other days, though, I can guarantee that no seizure will happen. Is this normal? Anyone else have regular seizures like those and feels absolutely fine on other days?
- is there a chance some other drug will work if a combination of two drugs isn't enough?
- how important is it that therapy completely gets rid of seizures, even the smaller ones? My neuro kept upping my dose until I said I'm cured now, which is a lie, I'm feeling ALMOST fine . But I've decided that I can,at least for now, live with this partially efficient therapy, as long as it helps me not to lose conciusness.
- finally, I am afraid of SUDEP. Does the fact that my epilepsy is not FULLY under control increase my chances of this sudden death thing?
Thanks to anyone who reads, better yet responds, I know it's long but I've finally got around to asking this, I've been planning it for so long.