Chronic severe nocturnal hypnic headaches

I saw a neurologist at the Mayo Clinic several years ago. I stressed that 90+% of my headaches wake me between 3:00 and 4:00AM almost every night, and this pattern began after my 55th birthday. (I am now 67.) Prior to that I got daytime migraines. Hypnic headaches were never mentioned as a possibility, either at Mayo or by my local neurological PA. I have only discovered this category on the internet this week! My headaches match the description almost perfectly, except mine are often one-sided. I had been taking topiramate for the past four years as a prophylactic treatment, but its effectiveness was questionnable. Then I learned that this drug is sometimes associated with significant bone loss, another thing I found out on my own, even though my health history includes osteoporosis. I am not taking any prescription drug right now. I drank two strong cups of coffee the past two evenings before bed and slept without waking (except to go to the bathroom!) for the first time in years. We'll see if that continues to be effective. I am hoping to find a new neurologist who takes a more wholistic approach to care. My heart goes out to the patient (taterjoy) whose headaches sound much, much worse than mine!

@docb99 @taterjoy @mlpults @kmsb
All…have read all of your posts and so sorry to read all the struggles.
My story….years ago I had dental implants (upper left side) by a dentist with
drug problems unbeknownst to the dentist who recommended him. The entire procedure from beginning to end was a nightmare….long story short, after it was all over, dentist committed suicide and I was left with trigeminal nerve pain and sinus problems. My nerve pain morphed into a second problem. ….Hypnic Head pains. I spent many years in acupuncture and a pain clinic here in NYC.
I lived off and on, on Prednisone as the only pill to stop my nerve pain. I also used Fiorcet at night for the hypnic headaches….I have built up a tolerance to the pills and was desperate for help. On my own and thru research at Mayo Clinic, I found an unbelievable solution that works for my nerve pain…it’s called the Scrambler Technique…a non-invasive and not painful treatment. Unfortunately it is not covered by insurance…I found a clinic in Clifton, N.J. that only does this technique….I am happy to say it’s working….next…My neurologist suggested the 31 shots of botox to head, face and neck to stop the headaches. This procedure is every 3 months (4x a year) and I’m getting ready to get my third treatment….This procedure is also successful….after my second round, I started sleeping thru the night with the exception of having to go to the bathroom….My goal is to be both pain free and medication free….so far, so good…I live in NYC and my insurance covered the Botox…I am also 83 years old.

@taterjoy thank you for sharing.
I added omeprazole when I first started using the Indocin twice a day.
I found that I can do with just a nightly Indocin to prevent the headache I get between 2 and 4 AM, so I’m taking it only at night without omeprazole. If it starts causing gastric distress I’ll add the omeprazole.
I’m not sure if Indocin will continue helping but for now indocin at bedtime does let me sleep without a 2 AM headache.

@docb99 I am sorry you are dealing with nocturnal headaches and glad you researched it and found info on Hypnic headaches. How severe are your nocturnal headaches? Did your MD discuss other options prior to Indomethicin like Topiramate, higher dose melatonin, bedtime coffee/caffiene)? I'm glad Indomethacin is working for you. It is an amazing relief not to be awakened from sleep by a severe and debilitating headache(s). @mlpults is correct in that indomethicin can wreak havoc on our GI systems. I had tried every other option prior to using it going on 19 years, nightly. After developing bad side effects to Indomethacin (and still had crippling daily daytime migranes) I visited Mayo Clinic Neurologist to help me since Indo. and my migraine meds did not always work (and I end up in ER). He does not like Indomethecin due to serious side effects, but since my nocturnal headaches are likely a mix of cluster headache (occurs four times nightly same times, if not prevented) and hypnic (cyclic, occuring same times 4 episodes during the night), he realizes that Indo is my only option for prevention of the Nocurnal headaches. I take an extra medication daily (Pantoprozole, brand is Protonix) to prevent gastric bleeding and irritation/inflammation caused by the Indo. Since adding that to my regimen, I have had no more gastric issues from Indo. Before adding the Protonix, I had a severe bout of GI distress (hard to move or breathe) and had to go into MD office for long infusion (I dont' recall what was infused). That said, if your MD has not considered other potential preventatives for Hypnic headaches, he/she might want to consider something like topiramate, high dose melotonin, caffiene or coffee prior to bedtime. I currently take melatonin in addition to Protonix and Indomethacin but stopped drinking bedtime coffee after learning from my smartwatch that I was experiencing 17 nightly "awakenings" with caffiene prior to bedtime, and about 3-4 without. I hope you continue to feel well and pray that you have no bad side effects to the Indomethecin, or other treatment choices.

I have hypnic also , for at least 10 years. Are you talking about indomethacine ? If so it’s very hard on your stomach. Earlier posts mention other people’s experiences with it . I just live with them,and take sumatriptan 50 mg. 8 or 9 times a month. Good luck , I hope you find something that helps you.

I’ve just started 50 mg Indocin at night for hypnic headaches that occur every night. It is working for me so far. The question is how long can I take indocin.
The most interesting thing I heard from a new headache specialist (who is not a neurologist) is that we headache sufferers may have more than one type of headache.
If I get a headache in the daytime it can be a migraine or tension headache that requires a different med. For me Imitrex works. I didn’t realize that I could have different types of headaches.
I’ve always had migraines but daily middle of the night headaches started a year ago and I was told by a neurologist that they were medication overuse headaches from too much Imitrex.
I researched things myself and determined the 3 AM nightly headaches were hypnic headaches.
That was confirmed as likely by a different doc who prescribed the Indocin.

I was diagnosed w/ hynpic headaches almost 3 years ago. Generally get every night with VERY few exceptions. I take Imitrex every time I get headache (tried all the preventative treatments) which always gets rid of headache. For a long time the only problem was waking up with headache every night but then started having strange facial pain most often during day, usually behind my nose (feels like I got punched in nose (not sinuses)), sometimes teeth and got referral to Stanford pain clinic. They said they think facial pain is migraine but no recommended treatment since I've tried just about every possible migraine treatment. Anyone else had this? They told me to try to get off the Imitrex (high risk and could be experiencing overuse issues; my neurologist has always said if getting migraine every night and nothing will prevent, take the Imitrex). To avoid Imitrex, for about a week been drinking espresso at headache onset during night and seems to be helping (didn't in the past) but facial pain worse the next day after not taking Imitrex. Feel better after normal morning coffee. All just seems more complicated than when I only got a very predictable headache every night couple hrs after going to sleep