I've been waking up dizzy and with headaches.

Phyllis

Hi phyllis, i know i have them in my sleep. I think there the worst too because i wake up feeling awful and soooooooo tired, and its not a normal tired feeling.

I wake up with a whopper of a headache!!

Phyllis

Hi Phyllis,

There have been times when I've had sz. in my sleep or right after I get up in the morning these sz. are known as myoclonic sz. I would wake up feeling exhausted with a headache at times. Once I started taking vitamin B12 and cut back on the caffeine these sz. stopped. I do know that when I was taking neurontin I had this type of sz. day after day so be sure to stay away from neurontin. I wish you the best of luck and May God Bless You!

Sue

I have a feeling, that, may be the culprit, at least, partially, then,
since, I'm a caffeine, junky!! It's going to be really hard, but, I guess,
I need to try to cool it.

Phyllis

Hi Phyllis,

My epileptologist has told me no more than 4 cups of caffeine a day this also includes eating chocolates, and drinking any soda with caffeine. If you drink diet soda or use anything with nutra sweet in it that can really trigger sz. for some people so stay away from that also. Here's wishing You Well and May God Bless You!

Sue

"Nocturnal seizures" is the word you're looking for. Contrary to what you may think, your brain is not actually at rest while you sleep. Just different parts are active! I have nocturnal epilepsy....was "lucky" that my first episode was status epilepticus, or multiple grand mal seizures in series that I did not wake up from. My dh woke up, called the ambulance, and I seized in front of witnesses all the way into the ER. So even though seizures (or even instability) were never detected via VEEG or sleep-deprived EEGs later on, my diagnosis was never in doubt. After that first episode, I had two or three more nights of repeated grand mal seizures that my dh was able to wake me up from (while on depakote; apparently reduced the severity but not frequency). Then on keppra (plus now lyrica), they're mostly under control. Oh, but what I meant to add, sorry got sidetracked in history, is that yes, I would wake up with a horrific headache and exhausted.

I say I'm "lucky" because I would have HATED it if the doc, upon looking at my normal test results, would've told me I was imagining it or whatever. I can only imagine how frustrating it must be to have things going on during sleep and not have it documented!

Mine are mostly "catamenial", meaning they came before my period, hypothetically during the decrease in progesterone before the decrease in estrogen. I think that's the main reason, fwiw, that my test results came back negative. At the time that I scheduled the testing, they only could "fit me in", they couldn't schedule at the most likely time for my head. During the rest of the month, my head is quite stable, so the results were not surprising to me. (unlike last night, but that's another post)

Good luck!

I see my neurologist, tomorrow!!!
I can't thank everyone, enough, for all of the very helpful
and useful info.!!!

Phyllis

My thoughts and prayers are with you at a time like this. Please keep us up to date.

Darlene