Newbie could use some help.

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HI, New to the forums. I'm a 22 year old male living with nocturnal seizures "officially" since about age 16. I say officially because after my first that was noticed by my family alot of my symptoms were present on prior occasions that I just shrugged off. So I imagine it just went un-noticed for a couple years before. I'm very lucky to have full control over them while on Carbamazepine(Tegretol) and so I keep my condition very private and short of immediate family and one friend no one knows. So stumbling upon this site I hope I can get some as well as give some input on here.

Introductions aside, I've hidden from my condition behind pills and being able to control it. But as I'm getting older and my "possibly grow out of it" chances the doctors gave me are far gone, I'm now trying my da**dest to understand it. So my question is, are there ways to diagnose ADNFLE without getting genetic testing done? No, none of my family had them and I understand its most hereditarily passed. But all my symptoms line up. The shortness yet extremeness of seizures, the low dosage required to control them, Nocturnal only, manafesting in childhood. I'm no doctor and my neuro isn't much help, he's mostly just a white coat, I understand there are multiple epilepsy types that can be nocturnal. I'm a "have to understand how things work" person and am just trying to get a figure on what I'm living with.

Any and All help is much appreciated,
Thank you in advance
-Kevin
 
Hi Firefight33, welcome to CWE!

In the absence of genetic testing, diagnosis of ADNFLE is made on clinical grounds -- a detailed history of your symptoms and responses to medication, supplemented if necessary by vEEG. So if everything seems to line up with ADNFLE, then you can feel reasonably confident that that's what's going on. (If it looks like a duck, and walks like a duck, then it probably IS a duck.) If you want to feel more certain of your diagnosis, then your best bet would be to find a neurologist or epileptologist with more experience.

I realize this isn't a definitive answer. Unfortunately, with over 40 different kinds of seizure disorders, and very individualized prognoses, it can be tough to be definitive about anything. If you want to read more about nocturnal seizures for comparison purposes, below are some links from the CWE archives, and you can search for others using the "Search" tab at the top.

http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-neurofeedback-seizures-1625/
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-11904/
http://www.coping-with-epilepsy.com/forums/f23/dreaming-seizures-2982/
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-12296/
http://www.coping-with-epilepsy.com/forums/f20/nightime-seizures-13552/
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-sleep-apnea-9351/

Best,
Nakamova
 
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