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Chronic severe nocturnal hypnic headaches
Sleep Health | Last Active: Oct 4 1:13am | Replies (240)Comment receiving replies
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?
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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.