Want to connect with people dealing with hypnic headaches

I’ve always called them sleep headaches. I have them periodically and they usually last for a few nights to 2 weeks. I can’t take caffeine now as I’m on seizure meds which are supposed to help me sleep, but they don’t always work.
So I’ll get up, pee, drink water and eat a few crackers if I’m nauseous, and listen to something with my earbuds, which usually puts me to sleep. I can tell by the video or audio how long it took to get back to sleep by looking at the point of what I don’t remember. I’m usually awake 30 mins to an hour before I go back to sleep.

I make sure I get 6-8 hours a night, so I don’t have to take naps. I’m retired, so I don’t have to maintain an early schedule. I only schedule things after noon, so I won’t have to cancel them if I have a bad night.

When I was very young I woke up every night with screaming nightmares and fell down a lot, so I was diagnosed with epilepsy, but not prescribed meds. In high school I drank coke and coffee, took Tylenol and aspirin. When I went to work, I just plowed through life on that stuff and played heavy metal music on my earphones to drown out the pain in my head. I had a lot of migraines, nightmares, absence seizures and falling down. I took Motrin and naproxen sodium which helped a lot more.

In my professional work, I found I couldn’t work on Toperimate (spelling?). That’s all I was ever prescribed. I had to retire early as the pain from 6 types of headaches was driving me mad trying to work with all that going on in my head. I couldn’t function at driving, doing seminars, investigations and writing. I just couldn’t think.

So I still have these sleep headaches 65 years later. Sometimes when I wake up, my cpap is blowing a lot of air and I’m sweating, my blood pressure is up or I remember a dream, which means I woke up during REM. It’s harder to get back to sleep as I have a bigger headache. I’m usually nauseous and dizzy with this type. I think these sleep headaches are related to blood pressure.

My neurologists have all said it’s not that, it’s abnormal electrical activity in my brain instead. I have a seizure disorder with 6 other different types of headaches. I take a higher dose of a seizure med at night, Lacosamide, which is supposed to prevent them. I tried skipping the Gabapentin for seizures at night, but my sleep was worse.

So I stay on both meds day and night, and it helps to keep me asleep better. I drink a chocolate protein shake 3x a day, a restless leg supplement and some B vitamins and R-ALA. I’m sleeping better, but I still have some sleep headaches. I started some exercises in the day, especially breathing, to increase oxygen flow, and I’m using my cpap every night, even though I hate it. I don’t want to add anymore prescriptions. My history is really electrical brainwaves preventing sleep. I’m always searching for a better solution. Hope this helps in some way and everyone can find theirs