Chronic severe nocturnal hypnic headaches

By the way since I'm on medicare and United healthcare, the monthly payout for any of the CGRP drugs are awfully expensive since it's hardly covered at all.

I bet you saw Dr. Goldstein. I went to him for over 30 years. He is quite an unusual man. He fired me about 5 years ago because I was his only private patient left in his practice. He only does testing for big pharma now and I didn't want to be part of his test groups. I will say he diagnosed my husband's Cerebral Angioma when he had symptoms and I didn't know where else to bring him. He is since in the care of UCSF neuro dept.

I hope your neuro listened better than mind did, and was nicer. Having no treatment luck at Kaiser NoCal, I referred myself to the San Francisco Headache Clinic (2006-2008). The "famous" headache specialist there was able to diagnose my "rare" Hypnic headache type after 6 expensive monthly visits, which I appreciated and appreciated learning Indomethacin alone worked (while the variety of narcotics alone and in combo with many other meds he had prescribed, prior, had done nothing). I severed ties when he kept prescribing oral treatments for my acute hormonal migraines, though I told him that due to acute vomitting and diarreah, the oral meds all got propelled from my body and thus, did not help at all.

I'm in the San Francisco Bay Area too. I wonder if we saw the same neuro.

Yes, Avjovy and Emgaloty have helped with my Migraines, but NOT at all with my nocturnal "Hypnic" type headache. I took Emgality for several years (it worked AMAZINGLY well on migraines along with many migraine sequelae such as color distortion, visual distortion and sensitivity to light, and almost cured my severe dry eye syndrome). However, I was paying out of pocket and when my insurer finally adden one CPRP to the formulary, I switched to Ajovy. It works almost as well to prevent migraines but less well on the accompanying sequelae. NEITHER of these two drugs had any impact on my headaches generated by nocturnal REM sleep. I have had to continue Indomethacin plus coffee, though now on a lower dose of Indo with the addition of high dose melatonin also prior to bedtime. I hope found a treatment that helps, and that you are feeling better.

I'm so so sorry it did not work out, Gussie. So dismal to have to revisit frequent headaches and the aftermath. I'm so so sorry, and hope there are other options your MD will consider. Your comments about Qulpta were so helpful, thank you for sharing your experience. I hope the NEXT treatment will be effective and cause many fewer (if any) untoward side effects.

Hi Gussie! I just today saw your message from April. Is the Quilpta still helping to prevent your nocturnal headaches? And have you found a solution for the constipation? I hope so. Thanks for sharing. EDITEED: I SAW YOUR OTHER POSTS TODAY and see you have discontinued the Quilpta.

Never tried imitrex prior to bedtime to prevent the headaches, nor treatment with estrogen. The regimen I am on (Indomethacin plus caffiene) was started by a headache specialist in San Fran,CA. Other meds for "hypnic" headaches did not work for me. While my regimen usually worked, my Mayo MD is hoping to ween me off Indomethacin since its not safe for long-term use (GI bleeding risk). I do take an additoinal med to help prevent GI bleeds called pantoprazole. I hope you can find safe treatments that are effective.

Oh no the headaches are back. I also have very vivid dreams all night every night. I wonder if they are causing some sort of tension headache every night. They started when the headaches started but I can't find a doctor that has even heard of that. Finally on Mayo Clinic Connect I have found other people with this odd situation.

Thankful the headaches have never returned.