Unfortunately, estrogen is not the answer. I keep praying that something will trigger these skull crushing headaches to cease as mysteriously as they began. I do feel better from discontinuing the Amitriptyline and Topomax. While they seemed to reduce the severity and frequency, the side effects weren’t tolerable. Seems bizarre that the pain is more crushing than any other migraine I ever had and that no narcotic thrown at it seemed to help, but excedrin migraine does reduce the pain and occasionally stop it altogether. The hours without sleep are draining either way. All the caffeine and excedrin are tough on my stomach and bladder. Any ideas and suggestions from other sufferers are appreciated.

Hi all, I’m new to this conversation, but found the dialogue very interesting. I’m a physician myself, although not a neurologist, and self-diagnosed myself recently (thanks to the Internet). The neurologist I ended up seeing agreed with my diagnosis of hypnic headaches but had nothing special to offer me. I believe if I had not come up with a diagnosis myself, he might not have since even neurologists don’t see this type of headache very often, or at least don’t diagnose it when they see it.
I’ve never experienced headaches except a few times in my life until six months ago at age 62, several weeks after having Covid, which also coinciding with stopping estrogen because I developed a pulmonary embolism after Covid. I thought I just had long Covid but didn’t put 2+2 together with stopping estrogen until I recently read about the fact that menopause affects the hypothalamus, which is also one hypothesis of why people get hypnic headaches (aging of the hypothalamus). This makes sense since hypnic headaches affect mostly perimenopausal and postmenopausal women. Because of this, I am considering going back on my low-dose estrogen patches to see if that helps. If it does, then there might be an estrogen and/or progesterone connection to these headaches.
As for what has helped me so far, when I was getting these headaches very night, a shot of espresso before bedtime usually helped prevent them. I prefer espresso because less liquid means less bathroom visits. Now that the headaches are less frequent, but still over 50% of the time, I keep a shot of espresso in a S’well bottle next to my bedside so that I can drink it as soon as the headache starts without having to get out of bed. Espresso is also much faster to drink than a full cup of coffee when you’re trying to go back to sleep . I found that the sooner I drank it the faster the headache would go away. If I waited the headache would get worse and would take much longer to resolve so I recommend once you feel it start take the caffeine immediately. Coffee works faster than a caffeine pill
Also, I started to get stomach irritation from the caffeine and found out that cold brew coffee has less acidity and therefore is easier on the stomach. You can even buy cold brew concentrate online at Amazon and just add a teaspoon to hot or cold water. It’s much faster than brewing a cup of coffee when you want to go to sleep.
As an aside, I tried multiple migraine medications and none of them worked. I also taking low-dose naltrexone (you can have this made at a compounding pharmacy) but it’s unclear whether that’s why I’m getting headaches a little less frequently.
What’s very frustrating to me as a physician is that while this seems to be more common than was realized, since we are all talking about this here, why is there not more research regarding this? If there was some research done on this, perhaps there would be some better treatments developed; but because it affects mostly older women, the medical community does not seem to be interested in researching this.