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I am a 70 yo female. I began having nighttime headaches appx 20 years ago. For the first 3 years, I had numerous doctor appts, MRIs, MRAs (both with and without contrast), other scans, sleep study, etc with no diagnosis. While searching "nighttime headaches" I found that it is a real thing with "no known cause/no known cure". That actually put my mind to ease that I did not have a life-threatening problem and I stopped the doctor appts.
In 2012, my daughter suggested a blood test (conducted by a registered dietician & a cost of $800) that tests against appx 150 foods and additives. She suffers from gut issues and eczema. She received great relief when she avoided the "trigger" foods that were identified for her. Many were foods that we consider very healthy (ie, her morning smoothie of yogurt, oatmeal, spinach, peanut butter... all on her reactor list).
I have also had good results and have been able to function. But, quite frankly, it's very hard to stick to such elimination... and my list seems to be growing. While checking online into the topic again recently, a suggested book popped up 'What Do You Eat If You Can't Eat Anything'. That nudge has made me want to try again to find a reason for the headaches.
I would love to volunteer to be in a clinical test group. I am almost certain that brain activity monitoring would show the headache onset... a sensation at the base of the neck that "tingles" its way up the back and top of my head (this part used to be what woke me up)... that then lands in a full-blown headache on either side/or both of my forehead.
As I read of others experiences, I realize I am fortunate that my headaches will leave shortly after becoming upright, either sitting or standing. (Intially, it only took 5-10 minutes. Now, it usually takes 15-30.)
I know that the lack of sleep and brain 'trauma' has likely already taken years from my life so I wouldn't benefit much if a cause is found. But if I could help prevent someone else from going through this, it would very much be worth the trouble.

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Replies to "I am a 70 yo female. I began having nighttime headaches appx 20 years ago. For..."

Hi, @kjs1255, and welcome to Mayo Clinic Connect. So that you can connect with others discussing hypnic headache, I've moved your post here:

- Want to connect with people dealing with hypnic headaches https://connect.mayoclinic.org/discussion/trying-to-connect-with-people-dealing-with-hypnic-headaches

Hoping members like @kmsb @taterjoy @leannestork in this discussion can empathize with your situation and provide some support and ideas. I also thought members like @lisafl @dawn_giacabazi @cherylsd @lulu1962 @lauriedr @shaylala @bernese53 @gussie @kdubois might like to join this discussion. These members may have thoughts on managing hypnic headache with avoiding food triggers or standing upright. They also may have tips and tricks of their own for headache management.

kjs1255 - how are your hypnic headaches affecting your sleep this month? Are you waking up with them frequently?

Thanks for your post. It doesn't seem there's much activity here, my last post was the most recent one in 2023. My understanding is that sleep is the "trigger" for hypnic headaches. I get a headache every night a couple hrs after falling asleep, with almost zero exceptions. The only thing that helps is taking Sumatriptan once the headache wakes me up and usually within 30-40 min, headache is gone. Have you been diagnosed with hypnic headaches? My headaches don't involve any discomfort in my neck.