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nocturnal tonic clonic seizures

My boyfriend had his first tonic clonic seizure at 29 years old.  It happened at 4:30am.  He had no recollection of it, he went to the ER, they gave him a series of blood tests and a cat scan and everything came up normal.  He was referred to a neurologist who suggested an MRI and EEG.  Unfortunately, he has no med insurance and couldn't get the tests without paying up front.  1 month later he had another one.  We went to a doctor who gave him more tests for infection and everything came up negative.  She put him on Dilantin (300mg) at night.  He went 4 months without a seizure, then switched to the generic Dilantin and 2 weeks later had a partial seizure, then a tonic clonic seizure within 2 days, both at night while he was sleeping and again has no recollection.  His Dilantin levels were low, he went back on the regular Dilantin and increased his dosage to 300mg in the am and 300mg at night.  It's been 3 days and no seizures.  Does he have Epilepsy?  He's never had a seizure during the day, does anyone else suffer from only nocturnal seizures?  
5 Responses
482325 tn?1210578538
Yes, I have.  I had seizures in 1957 and then not again until 1983 {age 27}.  I then began having only nocturnal seizures, knowing only of them if I chewed my jaw or injured myself on some piece of furniture near the bed.

I too was started on Dilantin but now take Depakote & Phenobarbitol.  When I began to have the grand mal seizures in the daytime my neurologist stopped me from driving.  I have not had another seizure that I know of since I stopped working in 2003.

Don't know if this helps, but hopefully he can find some type of insurance that will cover this ailment.  It is serious and needs to be taken care of.  I really do understand lack of funds though.

Avatar universal
Thanks Anita, I appreciate your response.  
Avatar universal
I have nocturnal epilepsy and just discovered that i had this 5 years ago (i'm 30 now).  I may have a had them throughout my life, but I slept alone most of the time.
My insurance was just stopped and I went to pick up my meds(lamicatal) and the cost shocked me.  I am going on day one without meds.
I am going to see an herbalist and doing yoga and hopefully this alternative will help, instead of the meds.
the meds made me feel forgetful and i still had seizures on them.  I was on dilantin and it's a very scary drug.  If you stop taking them abruptly then seizures will occur.  I switched to another med. and it worked well for a while.
It does sound like he has nocturnal epilepsy.  Does anyone in his family have it?  Or did he suffer a head injury ever?
My parents thought that when i was a kid, i would sleep walk and have night terrors.  Looking back on that, i was probably having seizures then and they just thought it was something else.  Has he ever had that problem?
Good luck!
Avatar universal
I have recently been diagnosed with epilepsy (although it may be 'probable epilepsy').  I am not convinced that I have epilepsy as all the tests (CT, MRI, EEGs (various ones including the week long video monitor), holter, bloodwork, etc. ) came back normal.  (At least as far as I have ever been told there is nothing in those tests to indicate epilepsy...but I guess also, nothing to rule it out either.  While I am resistant to accepting the diagnosis, I am on all other accounts trying to cooperate.  I am taking topamax now.  Is there a danger to taking this med if I don't have epilepsy?  

Obvious cons I have already come up with on my own:
I don't like being on meds
It has side effects:  my memory is shot, makes me a dumb, some weird physical symptoms, nothing major

Also, are there some ways to get a definite diagnosis?  I need something, and please excuse the comparison, that is accurate like a pregnancy test.  If I have epilepsy for real, I would like to accept it and make the appropriate modifications.  If not, I would like to determine what it was that led the doc to believe that I have epilepsy to begin with so I could move forward in the right direction, if there is a direction I need to move, or was it just some random occurrence that I don't need to be concerned with?

Thanks guys!  

Avatar universal
sorry I think I meant to post the above to a different page but it is my first day here and I didn't do it right.  I don't even know how actually. sorry.  
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