Chronic severe nocturnal hypnic headaches

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.

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.

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

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 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.

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've used estrogen for my hypnic headaches and it worked great. The only problem is that it gave me diverticulosis/diverticulitits - so I had to discontinue. If I can figure out a way to take estrogen that doesn't go through my intestines, then that might work. I don't think that rectal or vaginal meds would do the trick for the headaches though.

i cant find your old post but did you mention the round of prednisone stopped it for good? did you take it for a while and at high dose? I will discuss that option with my neurologist if you found relief, she had already mention something about that med. thanks

I found the old post and will paste it here. I hope your doctor feels it’s worth a try. It was such a desperate time and I hate that anyone suffers from these awful headaches. :

lisalucier – I started the Prednisone taper on 11 December. 42 tabs 10mg. I'll complete dosing on 22 December. Prior to starting the Prednisone I think the other meds had thrown off the timing of the headaches, so rather than waking me at a specific time, they were more random and not quite as severe, but was feeling generally achy along with a constant feeling of shakiness. I have tolerated Prednisone pretty well in the past, when taken for extreme cases of poison ivy and a lengthy battle with hives following a surgery. This round, after day 2, the headaches completely ceased and I've felt much better with the exception of the shakiness, a little fluid retention and elevated blood pressure. I expect the fluid retention and blood pressure will return to normal after I complete the dosage and, if true to form, I expect a week or 2 of feeling generally lousy while my body takes back over to produce cortisol.

After completing the dosage, I remember waking with a headache once more, a few weeks later, but not as severe. They haven’t returned since. Mine were always left side of head and mind blowing severe. Caffeine helped with the pain but no other pain meds helped at all. I wish you success🙏