Chronic severe nocturnal hypnic headaches

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.

thank for the reply , how long did you take the prednisone for your hypnic headaches ? and since that round they havent returned? how long were you dealing with that type of headache? Thank you. Me too started with waking up at a specific time but then became more of a chronic form not as quite severe...

It’s been a while (thankfully) but I remember waking with the first one in September and didn’t happen again for a few nights but after a couple of weeks they hit every night between 2 and 3am. I had noticed the severity would decline after 6am (when I’d get a cup of coffee) but didn’t make the caffeine association until I found this support group. I was shocked that heavy hitter prescription pain meds did not help at all but caffeine provided some relief. The problem, on top of the pain, was the lack of sleep, which caffeine didn’t help. I began to dread going to bed since I knew what was coming. This went on for 4 months and several different medications after ruling out the life threatening possibilities with MRI’s and CAT scans. So, fortunately my Neurologist thought to hit it with Prednisone after trying several other meds that many others on this site had tried. I think it was 10 days or so of the prednisone where you start with a higher dose and gradually taper off. Within a couple of days the timing of the headaches was disrupted and only had one more headache after finishing the meds. My neurologist was Meredith Snapp in Charlotte, NC. My thoughts and prayers for you and all who suffer with these terrible headaches.

Thank you ! i will discuss it with my neuro , but if im not mistaken before the prednisone you were dealing with these type of headaches for months not years right? The fact that it helped solve the problem rather than coming back full force when you stopped the prednisone is interesting.

I have two questions. I know you went to Mayo for help. Did you need a referral and which one did you go to? I had to stop the Qulipta because of the side effects and the headaches are back. I had a lot of hair loss, terrible constipation and weight gain but it did help. I can't afford the $550.00 a month that I would have to pay and the Pharma will only cover it til the end of the year anyway. Medicare doesn't cover any of the new migraine drugs very much. They don't have a deal with big pharma like the private insurance companies do.

When I awoke with my usual headache last night I went downstairs and made myself a cup of coffee full caffeine. The headache went away. I've tried doing that before bed but it didn't work for me. Do any of you take caffeine pills instead of black coffee. I wonder is it's better for your gut as I have gastritis.

Caffeine does help me with those, but it is better to eat something before you take it, like a piece of bread, yogurt, or a glass of milk or even water. (this isn't medical advice, just my experience). I also had great response with butalbital - that is now a controlled substance though, but in my opinion works great

good advice on taking a glass of milk or something before drinking the coffee. I do have butalbital with codeine if my headache gets worse.

Out of all of the chronic things I have going on the Hypnic Headaches are the worst. Not just waking every night with a headache it's not getting enough sleep. For 16 years I would wake and take 50 mg of Imitrex or 100 mg if really bad and go back to sleep. I did this every night. Last year after taking triptans for all those years I started breaking out in hives after taking just one triptan. It wasn't just Imitrex but all of them. I am so limited now in terms of taking something for the pain. I don't get regular migraines anymore except on very rare occasions. I am now on Gabapentin for extreme cervical nerve pain. I read that sometime that also helps with migraine but I only take 300 mg a day so either not enough or it doesn't work for Hypnic. I had to stop the Qulipta because of extreme hair loss and constipation but last night I took a 15 mg pill when I woke up and the headache was gone in a few minutes