Chronic severe nocturnal hypnic headaches

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 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?

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 forgot to mention in my other post that prednisone completely resolve all of my symptoms immediately upon starting, but they recurred once I taper down to a low-dose. Unfortunately, you cannot stay on prednisone long-term without multiple side effects.

I recommend you try cold brew coffee, which you can purchase already made or buy a concentrate online. It’s less acidic, and therefore less hard on your stomach, than hot brewed and it can be served hot or cold.

You have to find out what what dose of caffeine best for you without causing too much insomnia or irritating your stomach. but I find that between 80mg works best for me. as I mentioned in previous posts, cold brew is less irritating to your stomach, but also can be measured out to the exact amount of caffeine you desire

Does anyone else get migraines from prednisone?? I had a 16 day migraine after taking prednisone. Ended up in urgent care and was given morphine (did nothing) and some anti-inflammatory which helped for about 1/2 hour. Ultimately I got acupuncture which ended the nightmare.

Does everyone else seem to be prone to other types of headaches? I think I’ve had almost every kind.

I was recently diagnosed with migraines and my neurologist gave me a sample of Nurtec. It dissolves in your mouth and you take it at the onset of what you think might be a migraine. I took it for the first time a few days ago, and I have to say that this medication is fantastic. One is only allowed 8 tablets per month, per my insurance, but I would highly recommend you check this one out.
I understand the pain. It is exhausting to say the least

I noticed that when I had to take a Medrol pack in January for hives, my night headaches went away. Also no headaches during the day. That was in January, now we're in April and my hypnic headaches are back full force. I hate taking prednisone but the six day dose just stopped all pain for three months. I have tried Nurtec and Ubrelvy and they did nothing at all. My neuro also gave me a sample of Quilpta and my stomach just went crazy.

I tried taking a half of Quilpta last night before bed and no headache. Now we will see how my stomach reacts. I can only get samples of it from my neuro because Medicare doesn't cover much and it would still be close to a $1000 a month.