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@lsittll

Jake,
I have all nocturnal seizures. I have one monthly. That is the best control ever! I have not seen my doctor in over a year. – it takes six+ months to get an apointment to see her. Hopefully she will increase the zonisamiide that has caused this GREAT change.

Take care,
Laurie

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Replies to "Jake, I have all nocturnal seizures. I have one monthly. That is the best control ever!..."

@isittll
Hi Laurie,
Nocturnal seizures can be dangerous. I would definitely talk to your neurologist about them. I would definitely talk to your neurologist about them. The reason I say it’s dangerous is because of SUDEP which stands for sudden unexpected death in epilepsy. Although this condition is rare approximately one in 1000 epilepsy patients and it usually happens in people with epilepsy who are not well controlled and who have Tonic-Clonic seizures however it can happen in people who are much better controlled also. I knew a 17-year-old girl in England who died from S.U.D.E.P. and many others for that matter and the 17-year-old daughter was much better controlled than her mother yet look who died . Many Neurologists refuse to even discuss this subject. Just because it’s rare doesn’t mean it doesn’t happen. I have talked to many parents who have had children die from this horrible condition and their doctor never told them one word about it so those parents never knew why their children died. Some parents only found out after they read it on their child’s autopsy report I have talked to a number of parents who found out that way, you can imagine how angry they were. Although I am much better controlled now, if I were having nocturnal seizures I would have a very very serious talk with my Neurologist.
Many people with nocturnal seizures fall out of bed and get hurt in other ways too, this could happen to you too. Just because it’s rare that doesn’t mean that it can’t. Don’t ever forget that no one can predict when, where or if a seizure will occur, what type it will be, how serious or mild it will be or what will happen during that seizure or anything else about it. You may become a seizure free the next time you have a seizure and never have another for the rest of your life or it might be the mildest you ever had or it might be lethal.
Absolutely no one can predict it and if a doctor or someone thinks they can turn and run as fast as you can and never look back.
My parents were told I would have seizures frequently for the rest of my life, obviously they were wrong. Just because your seizures are currently mild that doesn’t mean they will stay that way, don’t ever take any seizure for granted!
Take good care of yourself,
Jake

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