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

Well I tried the caffeine 100mg an hr before bed.
I had leg cramps multiple times during each night. During the daytime my muscles were tender. Didn’t understand why as drinking 2 litres of water a day. So took a weak homemade electrolyte solution. No change.
Last night just before bed I consulted Google ‘effects of caffeine’ on muscular system. There it was .. caffeine can cause muscle cramping!
Having already taken 100mg caffeine I added a 250mg magnesium to my electrolyte mix. Last night I didn’t have the cramps.
I didn’t have any headaches during these nights which I’m grateful for.
However, a note of caution - everyday items , like caffeine, can have unexpected side effects
We need more research!

As I understand, rebound headaches come from migraine pain releaving drugs
. I get them from sumatriptaine, not as much from eletriptan, and Excedrin.

Has anyone suffered from this headache at age 30

Welcome to Mayo Clinic Connect, @chongo93.

Sorry to hear you are dealing with these headaches at your young age. It sounds as though these headaches have been reported in people your age or even younger, but they are more common in adults a few decades older than you.

For how long have you experienced hypnic headaches? What treatments have you had for them so far, and have any been helpful?

Besides treatments, I'm looking for research or studies for cause. I do feel my hypnic headaches are triggered by foods especially fructose (even in small amounts from fruit). Does Mayo Clinic have any plans to conduct study?

You might keep an eye on this site for clinical trials on any given medical topic of interest to you:

- Clinical trials https://www.mayo.edu/research/clinical-trials

I've had them for a couple of years, here in uk doctors dont recognise it as a medical condition, most haven't even heard of it

Welcome to Mayo Clinic Connect, @denh. Sorry you are running into your headache condition being unheard of and unrecognized.

Will you share more about what you've experienced over the last couple of years with these headaches?

I suffer from these headaches most nights, I have noticed that they normally occur after I've been in a deep sleep, sometimes they go away within a few minutes, other times I still have them the next day, I have tried regular sleeping hours, caffeine which dont work