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Sleep Seizures

Mon, 08/20/2018 - 15:44
When I was in my late teens I had a seizure in my sleep. Nearly scared my parents to death. I was put on Dilantin and Phenobarbital but was unable to function normally while taking it, so I just quit taking it. I did not have another seizure (again in my sleep) until I was in my mid 20's when I had 2 in a matter of a couple of months. These were grand mal seizures. They would come without warning and even though they happened during sleep, I knew I had one when I woke up, as I bite my tongue very bad when I have one. I went to a Neurologist, and was diagnosed with "Nocturnal Convulsions". He put me on Dilantin, which I have been taking ever since. I had seizures every few years, and would usually find that my Dilantin level was low, and we would adjust my medication and I would be find for several more years. At that time I was taking generic drugs, due to my insurance not covering the brand name. 14 years ago I had a seizure, and was advised to stop taking the generic and I returned to taking the brand name Dilantin. I have been seizure free since. I have to send to Canada for the Dilantin, as I can not afford the brand name even with Medicare. I hear of others who have long term side effects from Dilantin, but I have been taking it for over 40 years and so far no noticeable side affects. My gums are fine, I take calcium and vitamin D and a lot of other supplements. I regularly have bone scans and have no sign of osteoporosis. The only major health problem I have is arthritis which recently required me to have a hip replacement. I have never actually been diagnosed with epilepsy, but I assume "sleep seizures" are a form of epilepsy. Are there others who only have seizures in their sleep. If so what were you diagnosed with? It doesn't really seem to effect my everyday life, as long as I take my meds and have the doctor check my level regularly.

Comments

I have seizures only in my

Submitted by Gibbs44 on Tue, 2018-08-21 - 12:38
I have seizures only in my sleep and it didnt start until the age of 45...i have been diagnosed with nomintractable generalized idiopathic epilepsy without status epilepticus

My husband has nocturnal

Submitted by Lizzybabe718 on Fri, 2018-10-05 - 11:13
My husband has nocturnal seizures as well.  Hes started at age 18 years old he is now 37. He was on Dilantin 600mg total daily and was very well controlled with no seizure activity for years. about 2 years ago the neurologist decided to switch his medication from Dilantin to keppra because of long term side effects and he's been having about 4-5 seizures a year for the last 2 years. every time he would have a seizure they would up his keppra dose now hes on the max dose of keppra which is 3,000mg total daily and they need to change his medication to something else. My question is what medication are you all on? were going to see his neurologist in a few weeks  to see what his options are since Keppra is not controlling them at all.

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