Hi Cheryl!

If you google "hypnic headaches" and read many of the summary articles by research physicians, you might see case reports of people not being able to lie down with them, since lying down can make the pain severe. That is my case also. Once awakened by them, I bolt out of bed and pace for hours upright. Before I used preventatives, I would become exhausted (usually about 3 hours of pacing, when no acute meds were helping). I would then sit on the floor with my back pushed tight (upright) against the wall. Sleeping on a propped wedge did not help me, but your idea of nearing standing while sleeping is amazing! and Clever!

I am so glad you are getting relief from caffeine. I met a Vietnam Veteran who had terrible headaches, and his only help was to drink coffee on and off all day. The VA system did not diagnose his headaches as hypnic, and offered little treatment; but he figured out that he felt better walking all day, rarely sitting or lying down. Very sad.

I do hope that caffeine continues to help prevent your headaches, and that your siblings will also get some much needed assessment and treatment options. The literature on migraines sadly relays that undertreated migraine can lead to stroke, and also to brain lesions. I do believe my own hypnic headaches stem from brain trauma due to under-treatment of migraines, for years. Every case may be different. I'm so hopeful that research on Hypnic headaches and Migraines will lead to more effective, well-tolerated treatments that are not terribly expensive.

Thank you for your well-wishes! I have not met another person that has hypnic headaches, and though we are not positive that yours are, it is really wonderful to connect with you and hear about your creative solutions to treatment! If I find other solutions, I will let you know. I am now taking a class in Qi Dong and finding it very relaxing--it's a bit like Tai Chi, but more about the breathing and healing component. Time will tell!

Taterjoy

Hello Again,

I have to make a clarification to my last reply. When I said I was sleeping in an almost upright position, I meant sitting, not standing. I can see that wasn't clear. I don't know how you managed during the period when you spent hours each night, pacing. I have not read about the consequences of undertreated migraines, but I will look that up.
Stay in touch!
Cheryl

How are you doing now, Cheryl! Are you still drinking coffee and/or taking the caffeine supplements at night? And how are your siblings doing? I hope you are all doing well, and living well with fewer (if any) headaches.