Chronic severe nocturnal hypnic headaches

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.

I haven't visited a headache specialist yet. I have visited a neurologist in the past for other things but I will say it is not a match for me. I haven't been brave enough to try the coffee but I guess I can do that on a day where I don't have any major responsibilities the next day. I've seen some people mention estrogen - I am already on that but that doesn't seem to help. I find I tend not to move if I am having one of these headaches so then I get stiff too. I find it hard to get up because I am in a lot of pain but I know that that is the only way to get past the headache. Wondering if taking an imitrex prior to bed time would help? I don't particularly want to be on additional medications but just wondering if it might help?

Well, I was in that same place three years ago and paid out of pocket for Emgality (discount plan) which was still about $400 monthly with assistance--otherwise $775 permonth! Finally my insurance (Kaiser) approved ONE CGRP onto their formulary (Ajovy). While it does not work quite as well for me, I pay $25 per month for Ajovy! It works most of the time to prevent migraines but not at all to prevent the nightly inflammatory sleep-headadche). And it does not help as effectively as Emgality to reduce scotomas (blind spots) and zig-zags in my vision, light sensitivity, OR dry eye syndrome (apparently squinting more with Ajovy versus Emgality). The GI side effects, however are not as bad and that it is affordable is a HUGE plus. Will none of the manufacturers help you with an added discount? Sometimes pharmacists have other programs or suggestions. There is a Facebook Group for people with migraines who are on (or seek to be taking) CGRPs. If you join the free group and type "medicare" in the search window you can view relevant discussions and suggestions. One good recent discussion is by Teresa January 6, 2023. Hope For Migraine: CGRP & New Migraine Treatments link is: https://www.facebook.com/groups/221860401870994. I hope you can find a means to get a CGRP that will help.

I'm sorry you are also experiencing excrutiating nocturnal headaches. Have you visited a headache specialist (usually a neurologist who specializes in headaches) to obtain a diagnosis? It sounds sleep induced. NIH discusses nighttime headache types adn causes which help elucidate "best" potential treatments and preventatives. Here is the link to their article: https://pubmed.ncbi.nlm.nih.gov/24132786/ Have you already tried drinking a cup or two of coffee at night prior to bedtime? Or taking caffiene pills (less liquid!)? Melatonin alone even in high doses did nothing for mine, either. For my particular case, it takes a combo of preventative Indomethacin plus coffee plus 30mg melatonin nightly to prevent the nightly headaches about 98% of the time. My headaches are undetermined as they don't fit the category descriptions for hypnic or clusters (four times nightly, at exact same times REM sleep intervals), but they appear to be sort of a combination of the two. Chronic recurring pain and lack of sleep can be so depressing. I hope you can find help and some good solutions.

Have you seen a neurologist or a headache specialist about these headaches? I'm glad you are noting your symptoms with great detail. They can usually help diagnose the type by use of diaries and reported symptom patterns. There are so so many types of headaches, but the ones most often associated with "night" are: migraine, cluster headache, tension type, hypnic headache and chronic paroxysmal hemicrania. NIH has a brief discussion about them and their causes. Knowing the type & potential causes will help in selecting the best treatments. Yours could be a hypnic headache (also called alarm clock headache as they appear at about the same time each night (during sleep). But my local headache specialist suspected mine were a combo of hypnic/cluster/migraine. My Mayo headache specialist says they do not "fit" any headache exactly, but that they are inflammatory in nature and are thus responding to anti-inflammatory treatments and preventatives plus caffiene (meds for migraines, sedatives, hypnotics and "controlled" pain meds didn't touch it). I hope you can find some help as they are invading your sleep. Here is the link to NIH's article;https://pubmed.ncbi.nlm.nih.gov/24132786/

I am on medicare. I want to try CGRP injections but it would cost me over $600 a month. Thats using a GoodRx card and not using my medicare insurance. How do people afford that?

I could’ve posted this exact thing today. I feel like I’ve been hit by a brick at night. It is always on my right side above and behind my ear. I also have spin off headaches afterwards. Either tension type headaches or facial pain. I also can get this particular headache if I nap. I tried melatonin but couldn’t sleep at all with it. What’s most likely to help? What have people had success with?

I have been getting nighttime headaches for about a year. They wake me up usually around 3am, then it's hard to go back to sleep, if not impossible. These headaches usually go away after i get up for the day, but sometimes turn into a migraine. It feels like they start at the left side of my neck and continue up to the left eye. There is pain to the touch on my neck and side of my head.

I'm so sorry the hormones continued to cause side effects, but glad you are investigating other routes to good health. Thank you for sharing your techniques! Your diet sounds very healthy! I've kept a good diet since my teens since I also have polycystic ovarian syndrome and had to keep my weight low. Headaches and autoimmune thyroid issues are my main issues, but I am feeling much better now that my migraines are much less frequent and severe due to the new CRGP inhibitors. I do practice Qi Gong, some pilates and daily walking for exercise, but could probably be doing more strength training. I hope you continue to feel better and better and that the diet and sauna will help keep your headaches at bay or at least minimal!

I've found out now that, even though estrogen does relieve the headaches, I just can't tolerate the side effects - no matter how small a dose I take. I tried caffeine pills - up to 50 mg. per night. They did seem to relieve the headaches on 2-3 nights, but I had to keep upping the dose to have that happen after that - and I don't want to do that because it bothers my otherwise pretty good sleep - even with the headaches! So on to the next thing. I'm already on a very good diet, mostly chicken, some beef and sardines, and boatloads of cooked vegetables, with a few other additions. Been on it for almost 8 years and my health is actually wonderful - with the exception of these stupid headaches. About a month and a half ago, I started near infrared sauna therapy on a daily basis. Still too early to tell definitively, but the headaches seem to be receding. The sauna is supposed to eliminate toxic metals in my system - most of which have accumulated since before my diet change (aluminum, mercury, etc.) Hair analysis is wonderful for actually determining what's going on in that department. The sauna is starting to make me sweat some - which is the whole point. I have never been much of a "sweater", even in hot weather. I'm going to continue the daily saunas and see what develops! Maybe it will also help my somewhat mild brain fog. Have high hopes!! Will try to keep you posted.