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anxiety over nocturnal seizures.

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August 15th, 2011
So.... I refuse to fall asleep.

This isn't an occasional thing. It's every single night. I push myself to stay up even when I'm dizzy and droopy and just DEAD tired. I won't lie down because I know if I do I'll fall asleep. I won't read or turn down the lights. If I start to fall asleep I make a cup of coffee or have a few coffee beans covered in chocolate (no more than 3). I put on loud, bouncy music (Ellie Goulding, amazing stuff). If I wanted to fall asleep, I could do so... easily.

When I do fall asleep, it's usually between 9am and 1pm... and then I sleep for 16 hours. If I have to work, I will usually get 2 hours of sleep before my I need to wake up.

I have simple partial-onset seizures (frontal lobe, had them since I was 7, and I'm 25 now) and my seizures are always nocturnal and frequently painful or disruptive (meaning I'll go and break something and need to clean it up). I am on Tegretol (400mg at night), Primidone (375mg at night), Lyrica (225mg at night), and Vimpat (also called Lacosamide, 50mg at morning, 50mg at night). Some of these, especially Primidone, are supposed to cause extreme drowsiness... and yet I still don't sleep. Anyway, there's that information.

One hypothesis is that I refuse to sleep due to anxiety over nocturnal seizures. That just feels like an excuse to me. Anything epilepsy-related seems like and excuse. I've been dealing with this since I was 7. I'm sick of it, sure, but I can definitely handle it well.

Most of you, I know, are going to say something along the lines of "At least you CAN fall asleep, I can't even get tired." And trust me, I don't think my problem is worse than yours. It's just different... And some people will take it for procrastination, laziness, or whatever, and so be it. I get it. And I'm not trying to insult anyone by putting words in their mouths... it's just the reaction I've got from absolutely everyone. Nobody has ever really understood...

Anyway, this is affecting my life... I've lost two jobs in the last year. I feel mentally and physically slow on a daily basis, and I've always been considered an intelligent person. I have a BA for crying out loud, but it sure doesn't feel like it.........

I'm just so tired...

Any help would be appreciated, other than say, tricks to help me fall asleep... cause that's not the problem.
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First Helper Kelter82
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sher159
replied August 20th, 2011
OMG I too have nocturnal seizures, of course I have seizures being wide awake, but for some reason those nocturnal ones are hellish. I too try to stay awake, I don't enjoy sleeping anymore, tired of wetting myself, it sucksssssssssss. I was Keprra and gabapentin, well the doc is blaming my black moods on the keprra so switch me to dilitan, and of course they overdose me and I had to cut back. But just reading about how you stay up not to sleep hit home with me, I make coffee, anything to stay awake, right now it is morning and I feel tired right now, but I know not to lay down now, this is prime sezure time. Just know you are not alone.
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Kelter82
replied August 20th, 2011
I posted that in the "sleep disorders" section too, and got an incredibly nasty and rude response. Since both responses were posted on the same day I was afraid to check this one for fear of it being the same person...

Anyway, I'm so *so* glad to find out it is someone who I dunno... isn't going to insult me. I'm really sorry you are experiencing the same thing as I am... Cause it totally sucks, and people don't understand at ALL. Just grrr. And I donno if the reason I stay awake is because I have seizures... I don't exactly fret about them... but it is the only time I have them and I suppose it would make sense that's why I stay up.

I've been on Keppra, Gabapentin, and Dilantin aswell. Been on everything it seems, so they don't have a lot of options for me.

Do you think that this will go away if they find us effective medications? For me I don't think it would right away... Might take a lot of time and work towards undoing bad habits...
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sher159
replied August 21st, 2011
I am starting to think they have no idea what to do, I feel like I am a wall and they are throwing stuff at it to see what sticks. I have not been seizure free for at least 5 years, and of course they keep coming.
I can totally relate to your story, I have a brain tumor primary, and it is some how eating my brain, cause I am two hairs away from a baboon ass. I was once educated, can't spell, never was a good speller, now it is even worst. I am sick of the whole thing, and not driving thing sucks ballsssssssss.
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Kelter82
replied August 21st, 2011
Whoops replied in the wrong spot
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Kelter82
replied August 21st, 2011
Yeah I know that feeling. I've been on every drug available, and right now it feels like I'm supposed to "settle" on what works the best, and like I'll never go more than a week with no seizures... It's a little better now that I'm on Lucosamide (2 weeks on that drug... it's good other than the constant headaches), but I used to have maybe 9-10 seizures/week? All of them nocturnal.

Your drugs might be making you "stupid" so to speak. I'm not saying that you are, but you say you feel stupid so I'm just working off of that. I know there are a LOT of drugs that have really slowed my intelligence. Most, in fact. I really hope it is the drugs and not the tumor that is causing that. But I don't know anything about brain tumors. I'm really sorry you're having to go through all this.

Ever feel like you're supposed to be a super hero about it all? Like you're not supposed to ever let it "break" you? I really do... and whenever I do break down and just collapse in self-pity and exhaustion I feel like total slime... I feel overwhelmingly guilty and pathetic. It sucks I can't even have a proper cry without feeling like I'm somehow abusing the epilepsy status...
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sher159
replied August 21st, 2011
I so understand I too can't go for more than two weeks without a seizure, and those seizures I get when sleeping are the worst. I just saw my doc and I told him I thought they were strange black outs, he told me I was having seizures, now I see he was right when I read about your nocturnal seizures. I hate those nocturnal ones worst than the regular ones I have during the day. My seizures have been turning mainly into every time I lay down I know there is that chance of a seizure. Oh I hate hate hate that, I come awake all confused, usually with wet panties, the fun just keeps going. I think my family and friends look at me different, of course these days I am super skinny and not cute model thin. I start the interferon this coming week another good time, I call it fun in a shot. Just know you are not alone and I totally understand about those nasty seizures.
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business_professor
replied September 22nd, 2012
I found your post most helpful because I am suffering from a similar condition. Knowing that someone else experiences the same thing and that I am not alone in it make me realize that perhaps it is a disease or disorder and not a character flaw that I am to be blamed for.

And the key word is "refuse" to sleep, not "unable" to sleep. You also emphasized that it is not because you wish to avoid the seizures (which you have after all already gotten used to), indeed you seem unable to determine why you refuse to sleep.

I am experiencing exactly the same thing, although I do not go as far as drinking coffee to fight the urge to sleep.

I've seen doctors about it, clinical psychologists and psychiatrists alike, and they seem clueless about it. Which is precisely why I am so glad to stumble upon your post, because this is the first time I am learning of someone who suffers the same condition and therefore surely understands.
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