Thanks for asking, @lisalucier! I wish I could report that Menopause was the end of my hormonal migraines, and that my hypnic headaches were either "history" or were episodic rather than nightly occurrences. I have participated in national and international support groups (unaffiliated with a medical group) for about 40 decades, and the ability to connect with others who "get it" and stay up to date on treatment options, has been a source of strength and hope. The site monitor of many of these groups, Teri Robert, networks with headache specialists across the country, many of whom are running clinical trials. She is a wonderful "interpreter" for patients who have limited medical knowledge or exposure, and she is a diehard advocate for headache sufferers: she has addressed Congress. For many patients who are not successfully "controlled" via acute meds, preventatives, and or rescue meds, she provides ongoing "reports and analyses" of some of the newest breakthroughs, techniques, and clinical trials. She also has no ego, and being a chronic headache sufferer herself, she has much empathy for patients, patients' families, physicians, and physician-specialists who share the frustration of incomplete "control" of headaches.

I am so appreciative that my preventatives for severe hypnic headaches work very well 75% of the time, adequately for about 20% of the time (but not preventing them 100%), and yet there are about half a dozen nights per year that my preventative meds fail completely. For those occasions, I use the rescue meds which usually work eventually, but am having to go to the ER maybe twice per year. I have theories regarding the "failures," and I recognize patterns. I need to see a specialist that has dealt with hypnic headaches, and a team that can address endocrine and autoimmune issues that are probably contributing. It is on my bucket list to visit Mayo Clinic someday, but traveling through time zones worsens the hypnic headaches, and I am traveling through 3 times zones often to visit my elderly Mom already. I did visit a headache specialist in Northern California about ten years ago, who after many months, successfully diagnosed the hypnic headaches and got me on track with fairly effective preventatives. I lost faith in this specialist down the road, when his input was inappropriate and counterproductive. My physicians (and pharmacists) at Kaiser have been extremely helpful in trying a multitude of options, and in approving use of some non-formulary brands or doses of non-narcotics when they feel it is necessary. I am so fortunate that they care.

I hope that @cherylsd @kdubois @lauriedr @teege1 @lisafl @dawn_giacabazi @jals are all doing better: Thank you for reaching out to us, Lisa (and also for Colleen's earlier tags). It is always helpful to hear how other people with recalcitrant headaches are doing, as well as their insights regarding which treatments (prescription and nonprescription) and lifestyle measures have been most beneficial.