Want 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!

I am a 70 yo female. I began having nighttime headaches appx 20 years ago. For the first 3 years, I had numerous doctor appts, MRIs, MRAs (both with and without contrast), other scans, sleep study, etc with no diagnosis. While searching "nighttime headaches" I found that it is a real thing with "no known cause/no known cure". That actually put my mind to ease that I did not have a life-threatening problem and I stopped the doctor appts.
In 2012, my daughter suggested a blood test (conducted by a registered dietician & a cost of $800) that tests against appx 150 foods and additives. She suffers from gut issues and eczema. She received great relief when she avoided the "trigger" foods that were identified for her. Many were foods that we consider very healthy (ie, her morning smoothie of yogurt, oatmeal, spinach, peanut butter... all on her reactor list).
I have also had good results and have been able to function. But, quite frankly, it's very hard to stick to such elimination... and my list seems to be growing. While checking online into the topic again recently, a suggested book popped up 'What Do You Eat If You Can't Eat Anything'. That nudge has made me want to try again to find a reason for the headaches.
I would love to volunteer to be in a clinical test group. I am almost certain that brain activity monitoring would show the headache onset... a sensation at the base of the neck that "tingles" its way up the back and top of my head (this part used to be what woke me up)... that then lands in a full-blown headache on either side/or both of my forehead.
As I read of others experiences, I realize I am fortunate that my headaches will leave shortly after becoming upright, either sitting or standing. (Intially, it only took 5-10 minutes. Now, it usually takes 15-30.)
I know that the lack of sleep and brain 'trauma' has likely already taken years from my life so I wouldn't benefit much if a cause is found. But if I could help prevent someone else from going through this, it would very much be worth the trouble.

Hi, @kjs1255, and welcome to Mayo Clinic Connect. So that you can connect with others discussing hypnic headache, I've moved your post here:

- Want to connect with people dealing with hypnic headaches https://connect.mayoclinic.org/discussion/trying-to-connect-with-people-dealing-with-hypnic-headaches

Hoping members like @kmsb @taterjoy @leannestork in this discussion can empathize with your situation and provide some support and ideas. I also thought members like @lisafl @dawn_giacabazi @cherylsd @lulu1962 @lauriedr @shaylala @bernese53 @gussie @kdubois might like to join this discussion. These members may have thoughts on managing hypnic headache with avoiding food triggers or standing upright. They also may have tips and tricks of their own for headache management.

kjs1255 - how are your hypnic headaches affecting your sleep this month? Are you waking up with them frequently?

Thanks for your post. It doesn't seem there's much activity here, my last post was the most recent one in 2023. My understanding is that sleep is the "trigger" for hypnic headaches. I get a headache every night a couple hrs after falling asleep, with almost zero exceptions. The only thing that helps is taking Sumatriptan once the headache wakes me up and usually within 30-40 min, headache is gone. Have you been diagnosed with hypnic headaches? My headaches don't involve any discomfort in my neck.

Hello everyone. I'm part of this club too, I've been suffering from hypnic headaches for over 8 years now. I am a 55-year-old man and I live in Italy. The pain is present every night and manifests itself after about 3 hours since I fall asleep, and it causes me to wake up with a uniform pain all over my head, I feel a strong pressure on my head and it is very hot. I don't have tears and the light doesn't bother me, but pain forces me to a forced awakening. Fortunately, once I get out of bed I start walking and within 15 / 20 minutes the pain eases a lot. As a therapy I have tried everything (caffeine, indomethacin, carbolithium, tryptans ..etc etc) without having benefits if not numerous side effects. The only drug that has been shown to be effective is called Difmetré, but after a course of treatment my doctor discouraged me from continuing because he said it is addictive and leads to several contraindications. I am available to discuss with you also to exchange experiences and advice on this pathology that unfortunately still remains too unknown.Excuse me for my poor level of English..

Hi @marione2000. Dealing with hypnic headaches all that time sounds like a lot of nights with pain and less than ideal sleep.

Everything you said was perfectly understandable.

Hoping members in this discussion such as @kjs1255 @kmsb @taterjoy will exchange experiences and advice with you related to hypnic headache. I'd also like to invite @hopeful33250 to offer some support.

What did your doctor think about why walking when you get out of bed helps with the headaches? Did your doctor offer any other treatments or a referral at this time?