Trying to connect with people dealing with hypnic headaches

Hi @benchi300, Welcome to Connect. While we wait for members with experience to respond, there is another discussion on hypnic headaches that you might find helpful here:
--- Chronic severe nocturnal hypnic headaches: https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/.

The Sleep Foundation has some information that might be helpful if you haven't already seen it.
--- Hypnic Headaches: Causes, Symptoms, and Treatment:
https://www.sleepfoundation.org/physical-health/hypnic-headaches

Do you mind me asking what these headaches feel like as I have this heavy type headache at the base of my skull ongoing 18 months after neck surgery

I saw your comments on my earlier post in 2016 about Hypnic headaches. While Emgality and Avovy had both helped prevent migraine headaches from daily to "only 4-5 per month," neither has had any impact on preventing my noctural "hypnic" type headache. My nighly nocturnal headache were finally diagnosed in 2007 as a "hypnic" by a Headache specialist, in CA, I saught help at Mayo clinic in 2020, and learned it no longer fits the category definition of HYPNIC. But it is an Inflammary style headache that mimics a cluster headache, occuring 4 times nightly at REM cycle, if I don't take Indomethacin plus caffiene (and now also Melotonin). I also must take RX pantoprozole to prevent GI bleeding from long-term use of Indomethacin. My life is FAR BETTER now that prior to finding Indomethacin (started with 75mg ER , and took that for many years) and Caffiene. I drink 1/2 cup DARK ROAST coffees about 30-45 minutes prior to bedtime. I used Starbucks Dark Roast Italian nightly for years, but have switched to Great Value (Walmart) Dark Roast Italian or Columbian (both also work and taste great) to save $$$. My Indomethacin dose is now lower than it was initially. I now split a 50mg dose (25mgs 1 hour prior to bedtime, and another 25mg AT bedtime along with 20-30mgs melatonin). I hope you can find something that works with few if any side effects.

Hello did you find that the indomethacin kept its efficiency for a long time compare to other meds that would loose its efficiency over weeks or months? Its important to take the 'slow release' tablets? I will discuss it with my neuro. Do you also need to take the melatonin now? I've read various comments here and indomethacin seems to be the 'go to' for hypnic headaches after caffeine... For a while caffeine alone was doing the job for me but the past 4 years it has lot some effect and is not enough. The only thing with the indomethacin its a nsaid wich could be bad for the stomach etc.. May i ask how long youve been taking it ? Thank you

Hi,
I'm new to this group. I started having weird mild sensitivity to sunlight last spring and by mid July, I was getting headaches every night in the middle of the night and neurologist eventually diagnosed me with hypnic headaches. Initially, I took caffeine pills every night before bed which didn't help plus Imitrex (100mg) at headache onset which eliminated headache within about 30 min. Still getting them every night. Neurologist later prescribed topirimate which took up a month to ramp up and it made me very nauseous though I continued to take. I have cut in half becaue I was losing weight and having trouble eating anything and would like to stop taking all together because while it may be reducing severity of headaches, I still get them every night and still need to take Imitrex every night. This doesn't seem like a long term solution and I am really stressed about it. I did have luck a couple of nights taking the caffeine pills at headache onset when I was taking full dose of topirimate but nothing consistent. I am going back to neurologist on Fri to discuss a new preventative medication, I think this will be my 6th or 7th visit since Spring. Looking for suggestions of what to suggest to him as I feel like too much time is going by w/ no results. Has anyone tried acupuncture? Read thru most of the posts but it's a little overwhelming. Can't really take anything that's constipating. I'm 61 and had very early menopause so not hormone related. Thanks for any ideas!