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Advice Nocturnal Seizures

Advice Nocturnal Seizures

Need some advice and help please
Anyone with nocturnal epilepsy? I only have seizures during my sleep. I’ve been taking carbamazepine 400mg twice per day. Stilll having seizures around every three months or so,I need some any advice?, that may help me to deal with it in a better way??? It’s almost impossible to deal with it in a foreign country and specially when my job depends on me being alert and wake up very early. A lot of depression and suicidal thoughts ( I live alone in a foreign… read more

posted May 1, 2020
A MyEpilepsyTeam Member

I have had nocturnal for a long time. Suicidal thiughts went away after switch off carbamazepine.

posted May 2, 2020
A MyEpilepsyTeam Member

Hi - I am 47 male my seizures suddenly started 3 yrs back mostly nocturnal, its started with once a few months but now its been monthly, I am on Lamictal 200 - I usually wear a mouth guard for that week in which I am almost certain that I will have a nocturnal - my spouse hear a smacking sound as if my mouth is dry and I am gulping and then after that I scream and have a full tonic-clonic for 30sec and then sleep snoring loudly then wake up in about 30min with a lot of pain. I keep full notes and see if there is anything I can see which is relevant, I have lately started following moon cycles if it coincides to new moon or full moon - I am not sure but it does seem to be closer to New Moon it might be gravity or some electrical activity -- again its just a "Theory" so am not sure but am trying all the different aspects... even having an idea in advance about when it could happen will help...

posted August 17, 2020
A MyEpilepsyTeam Member

I’m surprised they would put you on Tegretol, it’s a really old drug and there are many newer ones out there. I’ve had nocturnals for a long time but the only way mine are somewhat controlled is taking more than one med. I take three different ones. I would talk to your neurologist and see if you can change your meds, feeling the way you do is never a good thing. Take care!

posted May 4, 2020
A MyEpilepsyTeam Member

i have some ideas. mind you i am a health nut. carbamazepine (brand name is tegretol) side effects are mostly drowsy or tired, dizziness, and balance or coordination. if you could help it... get a side sleeper (if you are having a grand mal). melatonins and/or sleepy tea will fall asleep and stay asleep. as for the getting up part get morning coffee or tea. do yoga or meditation in the morning and/or at night. if you are tired midway through the day, get a iron rich food (nuts or leafy greens fruits and veggies).

posted May 2, 2020
A MyEpilepsyTeam Member

Im sorry to hear what you're going threw! I know how you feel! Ive been having seizures for 16 years now. Ive been on lots of medications! I had a right lobectomy brain surgery 8 years ago to stop my seizures. It didn't completely stop my seizures, but it helped reduce the numbers of seizures I was having a lot! Now it seems like Im having them about every 3-4 months like you and most the time it seems like it happens in my sleep to! Ive noticed stress has a lot to do with my seizures. I also have had thoughts of suicide. Lately I've been seeing a counselor for help! Its been very helpful for me! My heart is going out for you.
Right now my doctor has me on 300mg of zonisamide and 3000mg of keppra. Maybe you might wanna look into some counseling to help with your stress and maybe talk to your doctor about if surgery can be a option or another kind of medication? What ever you do I wish the best for you! We all just got to have a little faith and courage that things will be better!:)

posted May 2, 2020

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