Chronic severe nocturnal hypnic headaches

I hear you! Mine were so severe and were unbearble. I tried everything you menitioned but none helped, except 75mg Indomethacin ER (sustained release) taken at least 90 minutes prior to bedtime. Are you a candidate to try Indomethacin? Have you tried lithium? Flunarizine? or Topirimate? or Verapamil? These are mentioned in medical literature as potentially helpful to a few people with "hypnic" headaches. Where do you live? Are you being treated by a headache specialist? I would highly recommend Dr. Whealy or any of the headache specialists at Mayo who have seen (and treated) it all. And they have access to some databases that might help in evaluating your past treatments (and dose levels). I hope and pray you can find help and relief.

Hi @lisalucier ! I have not updated this thread for a long time! About 3.5 years ago, I had two very debilitating headaches (both migraine and nocturnal at the same time) and ended up in the ER, once while traveling. The ER MD in Florida thought I was having a stroke and did scans. He urged me to see help at Mayo Clinic as he noted my health insurance does not cover the most recent "biological" CGRPs to prevent migraines. I visited Mr. Mark Whealy at Mayo Rochester, and he was just amazing. He was able to validate by going online, that I had "tried" every headche medication and preventative available that was not contraindicated, except for the newest category (CGRP). He was saddened that my insurer at the time had no CGRP on formulary and would not even RX it for me to fill out of pocket at a local pharmacy. For two years he prescribed Emgality for me (via local Walgreens) which worked wonders to prevent the migraines (but not the nocturnal inflammatory headache). My insuror now has a CGRP (not Emgality) and I have been switched to Ajovy since it dramatically less expensive for me, and it works almost as well.

My nightly nocturnal headaches respond fairly well to 75mg indomethacin ER nightly two hours prior to bedtime, but my Mayo MD has encouraged me to slowly lower the dose to see if a lower dose (less risky for gastric bleeding) is sufficient. So far, I'm down to 50mgs but cannot go lower without awakening with a flaming headache all night long. I do take meds to prevent stomach ulcers (which Indomethacin can cause) and if I ever develop serious ulcers we will try something else--there are not many options. In follow-up, he has allow phone appointments and I am so very grateful, and my quality of life is so much improved! He told me my noctural headaches do not fall under criteria for Hypnic headaches since the Diagnostic manual changed the criteria for Hypnic headaches. He doesn't know what "type" it is, but if any new treatments come forth to prevent recurring inflammatory headaches, I will be on the radar as an eager trial candidate.

I would highly recommend Mayo Clinic to any person with severe, debilitating headaches that is not getting sufficient and "livable" results in treatment with their local or referral specialists.

I have had Hypnic h’aches nightly for 17+ yrs and the severity and frequency are increasing as I age. Have empathy for you as I just am not finding anything to decrease # or severity but caffeine 50 mg when awakened with 250 mg flush niacin plus getting up to music, computer, walks,tasks
seems to help sometimes. Have tried acupuncture, massage, chiropractic adjustments, now trying cft and transcranial direct current therapy.
Where can we find a support gr? Especially during the night or at least to just support each other? I feel sleep deprived and than the emotional aspects just are often too much to carry.

Thanks for the update on your experiences with hypnic headaches, @taterjoy. Sounds like you have a good handle on the latest research in headache and the patterns with your headaches and the meds. Also sounds as though you've gotten good support from those who are familiar with headache, which is great. Glad your doctors are caring about your situation.

If you did want to travel to Mayo Clinic at some point, one option would be to go to Mayo Clinic in Arizona. I believe you are in the West, and this would help you avoid some of the issues you face with your headaches when you cross time zones.

You mentioned something about lifestyle measures and headache. What lifestyle changes or patterns have been helpful to you with your headaches?

@akalsas
Have any of the other things you have tried helped at all? Does anything give you relief? Again it seems unfathomable to live in this pain for 15 years and find nothing that gives even temporary relief. Did you happen to read my posts about the Shifa migraine tea? If you use the search window above and enter the word shifa you will get links to some of those posts. My wife has used it successfully to treat her headaches. Might be worth looking into for yourself. Best, Hank

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

I usually get sinus pressure headaches at night, at times severe. I usually apply a heating pad and take acetaminophen and a decongestant.
Are you only having headaches at night?
Did you see a Neurologist when you had the MRIs?
As you know there are different types of headaches, such as tension, cluster and migraines- there probably are more.
It appears to be a vicious cycle- if you don’t get enough sleep, chances of getting a headache are large. If you have a headache- you can’t sleep.
A good Neurologist should be able to tell what type of headaches you have. There are also several different medications used to bring good sleep back, and then headaches will lessen too.

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.