I'm back, two moves and years later. Sorry I don't remember my old screen name (or email or password), but I've missed you guys! I learned SO much here, so thank you!

I have a question about nocturnal seizures. My first diagnosed seizure episode (as opposed to my first episode....grrrrrr) was nocturnal status epilepticus that woke dh up. 8 ys ago, I was told I had seizures and kind of made the leap to epilepsy because, well, it's clear they were seizures and what else is there? I had a few more in my sleep, but then, with med help, all that I had for years were breakthroughs where I woke up having partials. Since the pattern was the same (same time of month, same time of night), I assumed they were due to epilepsy/seizures, too. But they were autonomic in nature-heart racing, head pressure, nausea, heat flash, then body shaking for a few minutes.

Now I am having them more often and around the time I'm falling asleep (sometimes in the middle of the night). I wake up not breathing, then start breathing, with my heart racing and I feel short of breath. Sometimes I'll feel shaky and hyper-startleable (noise or movement around me makes my heart race). I eventually can fall asleep if I'm sitting almost upright. They're different from my old partials in that I'm more aware of NOT breathing, and they don't continue on to the whole autonomic set of symptoms.

A new doc (a cardiologist familiar with dysautonomia) said that my daytime seizures and episodes match dysautonomia, a new diagnostic path I've been tracing lately. Matches up with a lot of my MS-like symptoms, too (which go back 8 ys with NO diagnostic support for an MS diagnosis, so docs ended up *ignoring* them since they couldn't label them), but when I asked him about the nighttime symptoms, he just mumbled something about anxiety setting them off. I'm like-"DOC, I'm asleep!" So there's some physiological thing setting them off (like I mentioned i the psychogenic thread).

Anyway, wondering if anyone here's experienced "seizures" like this.....?

Hello and welcome back to NeuroTalk.

I have had epilepsy for around 45 years, ever since I was 10. After a great number of years I found a wonderful neuro to help me out. I mainly have had my seizures with Petit-mals. All though I have had few in my sleep and they were grand-mals. My spells were better with Keppra, 1500mg twice just like you are taking, it seems to help me better in all these year than any other medicine I have taken. Currently I am being eased off, because a year ago I had surgery and haven't had one since.

Again welcome, looking forward to seeing you around. You are in my thoughts and prayers.

Darlene

Hi FriedBrain,

My advice to you is to see an Epileptologist (Dr. specializing in epilepsy) You can find these Drs. at an Epilepsy Center which are usually at University Hospitals or very big hospitals like Cleveland Clinic for example.
I do know that sometimes people who have MS will end up getting epilepsy I have an aunt who had MS and her neurologist put her on tegretol to help her with both the pain she was having and to stop any possible seizures she might have.
These nocturnal seizures you are having could all be related to a sleep disorder you may have. You need to go into the hospital and have a video e.e.g done along with a sleep study. Often people who have sleep apnea will have nocturnal seizures along with a rapid heartbeat and shortness of breath. If the Dr. does a sleep study on you along with a video e.e.g. they will be able to tell if this is the problem.
Some of this could all be do to hormones changing also. I know when I went through my change the seizures increased like crazy. Try taking vitamin B12 1000 mcg. a day to see if this helps also cut back on the carbs and starch foods along with anything with aspartame (nutra sweet) in it.
I was in a medical study this past spring where I had to take my temprature 4 times a day at the same time along with each time I had a seizure. I was also told to keep track of how many times I would yawn each day and write all this info. down. Then when I got a warning I was going to have a seizure I was to put a cool washcloth on my face and the back of my neck. Each time I did this it stopped the seizures. The study was done on people who have MS and epilepsy and they found that yawning helps cool the brain down so the less a person yawns the more chances they had of having seizures. I noticed the my temperature was higher each day that I had any seizures, and how when I put a cool washcloth on my face and neck it helped calm the neurons down and then I didn't have any seizures. Give it a try if you want to but the best advice I can give you is to get a sleep study done to see if you have a sleep disorder that's causing these seizures. I wish you the best of luck and May God Bless You!

Sue