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Chronic severe nocturnal hypnic headaches

Sleep Health | Last Active: Oct 4 1:13am | Replies (240)

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@gussie

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.

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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 am glad he helped your husband with a difficult diagnosis and hope your husband is getting excellent care at UCSF. I was not going to mention the Headache Specialists name but you nailed it. After driving to San Fran monthly to visit him for six months, he was able to discern that my headache was inflammatory, severe, and occurred at exactly the same four intervals every night. I had brought diaries each of those six visits and telling him EVERY night its the same, living h--l. At month six when he said "if this new combo does work we'll try something else next time." I told him there would not be a next time because I could no longer live like that, and put my husband through it. He actually then took a look at my diaries, and had an A-ha moment, saying "EXACTLY the same time every night! I think we can actually make this headache go away with ONE pill (indomethacin). " He said it was called a rare "Alarm Clock headache." I googled ACH and read everything that was published about them--they were also called Hypnic Headaches. Treating it and migraines have been totally separate endeavers. I hope you find some relief for your headaches, and I hope the prices of CGRPs comes down when/if generic versions can become available. Eli Lilly offers a discount card for Emgality, and they now offer home delivery. It helped prevent my migraines very well, but was still more expensive for me than Ajovy being covered by my insurer. I am not promoting it, but noticed their manufacturer is making an effort to help patients with the discount program and with direct delivery.