Chronic severe nocturnal hypnic headaches

I found this information from Mayo information. Hypnic headaches.
https://www.mayoclinic.org/diseases-conditions/chronic-daily-headaches/expert-answers/nighttime-headaches/faq-20057919

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.

Tried without change. Thanks for suggestion

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 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.

Welcome back @taterjoy, It is great to see you back sharing your experience and especially good to hear you've found some answers. Thanks for giving this discussion some new life.

It sounds like the telephone appointments have made life a little easier for you. Have you done any video appointments with Mayo?

Have tried some with no help and liver and kidney give problems if on most meds. Seen several Neuro and a headache specialist. Since unable to take meds -I am written off as noncompliance.
Glad to hear that you have had relief

yes, John, I have done video appointments as well. It was very nice to meet Dr. Whealy and experience Mayo Rochester in January of 2020 (just before pandemic was official!) and to see that protective preparations for the pandemic were already in effect there. I enjoyed the Mayo history museum and the underground walkways! I also visited Mayo Scottdale soonafter to have sleep studies performed and both campuses were amazing.

Interestly, my Dad took my Mom to Mayo clinic in the 1970s when she was so very ill from an un-named "disease" at the time. No one at U of FLA was able to help her, and the Mayo Rochester Rheumatoligist my Dad took her to, immediately grasped that she had a full-flown condition now called "Fibromyalgia." At the time it was not yet "named" or recognized in the diagnostic manual. My Mom got the help she needed and is living a great life in her 90s! Our quality of life was (and IS) monumentally improved by our specialists at Mayo Clinic Rochester!

I have two other rare conditions that at least have facebook groups where the info has been so valuable to me. I am so glad to have found this group. I also started with daily migraine in my early twenties. Mostly related to my period. I come from a long line of Migrainers. My mother, grandmother, and it seems I have past it on to one grandson. After menopause the daytime migraines got better. Then in 2006 at age 65 I started waking up during the night with horrible headaches. The first few years I ended up in the ER about ten times for the migraine cocktail. The only thing that broke the cycle of pain was dilaudad the drug from hell. In all the years of having regular migraine I had never thrown up from the pain but with this I did. I am now 80 and still have what has been diagnosed as hypnic headaches for all these years. If you look at me I don't look my age and people are shocked when they find out how old I am. I live in the San Francisco so I had gone to the same headache specialist that taterjoy went to. I started going to him in the 80s when I had regular migraines. Although he did diagnose my hypnic headaches he changed his practice to just studying different drugs for the pharmas. So he spends 5 minutes with you then just hands out drugs. I have to say that even my young neurologist is stumped with this situation. I have tried everything over the years also. The latest suggestion is that I should do a sleep study which sounds like torture. As far as I know about sleep studies it just tells whether or not you have sleep apnea. If that were the case then we all have sleep apnea. Over the years I got to the point where I woke with the pain took 50 mg of Imitrex and could go back to sleep, but in the last year it has gotten much worse and that doesn't work anymore. I know that caffeine does work if I feel a little headache coming on in the daytime but I do have GI issues so I really can't drink a lot of coffee. I recently tried the caffeine pills but the ones I bought also had L-Theanine in them and caused a lot of GI problems. I just didn't think I would go into my twilight years with this.

I am so sorry Gussie to hear what you are going through. It's painful, debilitating, depressing and can feel so hopeless at times. I felt totally defeated for years, and was so disgusted with the local SF/CA "headache specialist) after I told him oral meds can't help when I'm vomitting continually (and diarreah expels suppositories). He RXed another oral med. Thats when i quit seeing him.

Pharmacists at Kaiser have helped me tremendously! They wrote to my physician and asked if I might be a candidate for a chemotherapy anti-nausea "patch" which I used for years. My primary care MD is very compassionate, but my local neuro refuses to RX the meds my Mayo MD has prescibed. So my amazing Mayo MD still calls in orders for one RXs to a pharmacy in my hometown.

The constant servere pain, continual throwing up, and resultant nauea and exhaustion (and lack of sleep) can feel so defeating. I hope and pray you won't give up. You might be able to consult with a Mayo MD via phone if you are not able to travel. I don't know, but the admins or moderators on this site might know. Dr. Wheally at Mayo Rochester (neurologist, headache specialist) has changed the tractory of my days, vastly improved my health and my sense of well-being by caringly sorting through and trying ALL options. If you can't tolerate caffiene or Indomethacin, there are still other drug and non-drug options to try like a neural brain stimulator! I also suspect in the future that sleep therapists will find a pattern of sleep that might avoid triggering our issue. If we set our clocks to wake us up (and reset the alarm) to avoid going into REM stage sleep, I believe that the brain-wave "triggered" inflammatory response might be avoided. Just a hunch, but I don't know if any studies are being done. I plan to ask Dr. Whealy at Mayo on my next visit.

Thank you so much for posting! I have met very few people who experience these noctural "inlfammatory" severe headaches with horrific GI involvement. I don't know how to send a private message on this site, but if a monitor or mentor can help, I will send you my phone number in case you want to talk about it. I pray your situation improves and that your quality of life can be vastly improved. Sending hugs and hopes for better days and nights ahead.