Chronic severe nocturnal hypnic headaches

Wow, that was a loaded appt. I'm so glad she listened well and immediately tried to break this pattern. I hope the injects (nurtec and immitrex) helped your daytime headache and that the prednisone and helps your inflammatory clusters acutely and that Verapamil will prevent them. That would-be incredible . That drug has been documented to help a handful of people who have "hypnic" headaches, though an antiseizure drug and Indocin were more often effective.

Its interesting that she does not believe in Hypnic headaches, and categorizes the nocturnal "pattern" with clusters. My Mayo neuro felt I fit into the category Hypnic when it was first recognized as a headache type, but not after the definition changed to EXCLUDE some of the symptoms that were cluster like (such as extreme lacrimation, runny nose, vomiting, diarrhea. etc.

My nocturnal headaches occurred 4 times each night (for several years before starting Indomethacin) at almost exactly the same times. The 4th headache each night occurred ALWAYS between 4:30am and 4:34 am. And they got progressive worse through the night such that the last one was so potent I jumped out of sleep often screaming and had to jump to a standing position. I honestly thought my head was going to explode, or my eyes pop off and ears pop off. I would pace for hours holding my ears and eyes, not able to sit or stand or the pressure was much worse. Then very sick at stomach (often diarrhea) and nauseated for days on end until it became chronic nausea. A pharmacist called my MD and suggested an anti-nausea (patch for cancer patients on chemo) and I wore those for years so that I could eat.

Well I hope the worst of your episodes are now in the past. I hope your body will tolerate all the meds she gave you and that they will all be effective. My mayo MD was very hesitant to prescribe verapamil for me(as was the specialist who diagnosed my "hypnic" headaches. My normal blood pressure is very low like 80/50 or so and they worried it would go so low I might have a high risk of fainting and falling. I wish I could still see Dr. Wheally at Mayo but Mayo no longer lets their MD "see" patients who insurance does not cover their visits. I was self-pay and would gladly self-pay again to see him or do zoom visits which he did after my initial visit/evaluation with him in Rochester.

I hope you rest well tonight and that your headaches might disappear, both daytime and nocturnal!