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 myself 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.
I'm sorry, what would you like me to say? Or would you prefer it if I didn't even post? I'm not looking for someone to tell me I'm immature and senseless, I'm looking for someone to HELP me, or at least try to. I'm sorry I have enraged you so much that you had to post something completely pointless.
I used to have nightmares. You know when you're asleep but only half asleep and you think you hear something or sense someone walk into your room and you wake up and sure enough your mom is there or a sister, husband, bf... someone. I used to dream that, but no matter how hard I tried to I couldn't move or open my eyes and I KNEW someone was there watching me sleep. It terrified me. After about 2 months of having that dream every night, I fought sleep. Now, sometimes I think I fight sleep cause I want more hours in the day. I want to be able to never need sleep. But I love sleep.
It got to the point where I will sleep for an hour then be awake for 5 hours then sleep another hour. Some nights I just lay awake all night TRYING to sleep. I use to fight sleep, now I can't sleep. I'm honestly not sure what is worse, or if really they are the same. Sometimes I think I can't sleep cause subconsiously I don't WANT to sleep.
Personally, I think that if you've tried taking something for it and still can't sleep, Get some help... find a therapist to talk to or try to meditate. I know you don't want tricks to fall asleep but at the same time isn't that what you're asking for, a suggestion on how to fall asleep? You can't change your habits, unless you change your mind. It seems like you might be willing to do that if you can admit that you cause your own sleep problems.
You do not owe that guy an explanation, much less an apology. Your concern was perfectly valid, and it was both brave and generous of you to share it.
Indeed 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.
Kelter82 - I have been suffering Sleep Anxiety quite severely for 40 yrs from an unfortunate event when i was 4, and I take constant medication under the direcetion of a GP and Psychiatrist to help me sleep. Even though, I can function during the day with minor disruptions, and in fact excel at what I do as i am determined to not let it beat me.
Don't listen to any one who thinks that you only have a minor problem and it is so easy to over come, as they probably have their own little weird problems that they are too embarrassed to tell.
Find the thing that helps you sleep the easiest, and use that as your base to go to the next level. And despite what everyone says, you can adapt to having little sleep - learn to meditate, and seek help from a trained professional.
Dear friend, perusal of your statements makes me think that since you are having this problem of nocturnal seizures, which was quite uncomfortable has made a deep impact in your subconscious mind. It is the latter which makes you awake. Hence if you believe or convinced about the safety of Bach remedies ( it is safe to take along with anti-epileptics), try Mimulus + Scleranthus to be taken 30 mins before or after food intake in the form 4 pills 4 times a day or 2 drops 4 times a day which ever formulation you opt for. Kindly note, avoid strong coffee during this medication ( because it annuls its effect). Hope it helps.
I think you def have sleep anxiety. Those seizures occur in your sleep. If they are unfavorable you will find yourself preventing ANY symptoms/attacks from occurring! I find myself doing the same because I had nightmares, bad ones, and didn't want to fall asleep to reveal the messed up movies in my head. I would always wake up tired/exhausted from dreaming non-stop. If you give in and your seizures come on, I'm sure you are sick of cleaning up after yourself and whatever other task you have to complete before leaving your home. I'm not sure how you can get rid of the seizures but I feel like this has pinpointed WHY you are forcing yourself to remain awake.