Want to connect with people dealing with hypnic headaches

@mlpults hi all fellow sufferers 😬

I go to bed around 10:30 -11:00 most nights and it wakes me about 3 hours later. Between 2:00 and 3:30. If really tired and I go down at 9:30 , then it comes at 12:30-1:00.
I keep a record on the wall calendar with red masking tape for a headache, blue for sumatriptan .
I think it’s getting worse. Average 2 to 3 nights per week with no headaches. The rest I’m up for at least 2 hours with a headache. Sometimes it lasts all night and into the day . And then I take a sumatriptan. I’ve tried taking melatonin before bed, and it seems to make it worse. So I don’t see a cure, I’m not the only one . It could be worse. But duchess926 your post reinforces that…..my cure is 20 -30 minutes of light to medium exercise gets rid of it usually. Good luck all. It’s been 11 years. I’m 71.

@duchess926 - you've posted here in a Mayo Clinic Connect discussion on hypnic headache, so I think you are in exactly the place you wanted to be.

If you want to see all the posts you have ever made, go to the icon that looks like the outline of a person at the top right of any page on Connect and click on it. That will take you to a menu that includes "My Profile." Click on that. Then on the left menu, click on "Comments." You will then see every post/comment you have ever made on Mayo Clinic Connect.

You mentioned going to a neurologist for your headaches. Have you been to a neurologist who specializes in headache?

@lisalucier - Hi…i posted a comment on Hypnic Headaches but not sure where it went??? I would like to join in the community for Hypnic Headaches…

@mlpults hi all fellow sufferers 😬

I go to bed around 10:30 -11:00 most nights and it wakes me about 3 hours later. Between 2:00 and 3:30. If really tired and I go down at 9:30 , then it comes at 12:30-1:00.
I keep a record on the wall calendar with red masking tape for a headache, blue for sumatriptan .
I think it’s getting worse. Average 2 to 3 nights per week with no headaches. The rest I’m up for at least 2 hours with a headache. Sometimes it lasts all night and into the day . And then I take a sumatriptan. I’ve tried taking melatonin before bed, and it seems to make it worse. So I don’t see a cure, I’m not the only one . It could be worse. But duchess926 your post reinforces that…..my cure is 20 -30 minutes of light to medium exercise gets rid of it usually. Good luck all. It’s been 11 years. I’m 71.

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?

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