Want to connect with people dealing with hypnic headaches

I’ve not been officially diagnosed with hypnic headaches but feel sure this is what I’ve experienced for years. Typically they occur during the night, waking up with headaches at times severe and occasionally with nausea. What works for me is caffeine - actually I use half-caf. By the third cup of coffee and within an hour, the headache goes away. I’ve also been helped by rinsing my face with cold water? It doesn’t happen every night but approximately 10 times a month or more. I do not sleep well typically.

@rosabec - welcome to Mayo Clinic Connect. It sounds like you've done quite a bit of research and investigation of potential interventions on your own and seen some success.

Thanks for the useful tips.

Do you plan to see a headache specialist? Are the sleep troubles directly connected to the headaches, or something else?

Participants have asked about caffeine and types of coffee. There is a brand that says it has more caffeine called Death Wish. I have tried it and think it does have more effect on preventing hypnic headaches if used at night.

That's useful information, @docb99. I don't have headaches and neither does my husband, but we both really enjoy that coffee!

I have been diagnosed with hypnic headaches by a neurologist. Have had all the screening tests. Am 71 year old female,and have had this about 10 years. Last year tried nurtec for 6 months, and didn’t work.
Headaches come 3 hours after sleep. Usually 1 or 2 am. Am now taking 25mg indomethicin at time of headache and then bike and or work out for 1/2 hour. Usually works. But sometimes it reoccurs around 5 AM so another bike ride . If it continues into the morning, early afternoon I take a sumatriptan.
Have tried to fool it by taking indo. At 2 1/2 hours after sleep,before the headache, but it comes back at 4 or 5 AM.
Melatonin increased the intensity of the headache. Topiramate did not work and side effects were awful. It’s on the right side of my head and is medium dull . Coffee before bed is hit and miss. Will try Death Wish coffee. I average 15 to 18 times a month , sometimes more sometimes less.

@benchi300

25 mg. Indomethicine, I find it’s good for about 3 or 4 hours. So I wait for the headache then take it right away. Then exercise for 20 or 30 minutes. The headache is gone. Indo. takes more or less an hour to kick in . It helps me return to sleep. Which was difficult after exercising.
I was prescribed last fall. Took it before bed. Headache came anyway and seemed to be worse. Plus too groggy to do much to get rid of it. Started it again 2 months ago as above. Eat a half piece of toast at the time for stomach protection.
Since there is no cure, this works for me. Bonus is I’m in better shape physically because of the 1/2 hour exercise.
If I want to get a full night’s sleep I take a sumatriptan before bed, every once in a while.
I hope this helps, I don’t think there will be a magic pill for us in my lifetime.

Hi @caj23 - I believe your message to @benchi300 may have gotten cut off somehow, and you may wish to repost it.

@mlpults - Hi.. I am new to this group but happy to find other people that have hypnic headaches. I am 83 years old and have been having these headaches since 2019. I think they are a side effect from my trigeminal nerve pain which was caused by a dentist. my question to anyone reading this post is about the time you all go to sleep. I tend to be a night owl and find that no matter what time I go to bed my headache occurs about two hours during my REM sleep …my Neurologist kept insisting that I don’t have hypnic because of the hour my headache occurs. My feeling is that it doesn’t matter when you go to sleep …it will occur about two hours after you go into a deep sleep, I have been taking Fiorcet for it, which worked really well as i managed to fall back to sleep after popping the pill and everything during the day and evening was really fine. apparently there is no information about the cause but my research shows that it might be a malfunctioning hypothalamus, messed up melatonin and circadian rhythm.

Hi All….i’m a little lost on these posts…I made a post on HypnicHeadaches i think but not sure where it went and how to find it??