I also get hypnic headaches. I find that mine can be seasonal. They seem to get worse when the amount of sunlight gets less. My opinion is that it has something to do, then, with melatonin. When mine ramp up again in the fall of the year, I take melatonin. Currently I’m taking 5 mg. of melatonin. I have gradually gone up to 15 mg. in the past with my neurologist’s blessing. I also take gabapentin. I also adjust that slightly up or down depending on my needs. Sometimes a strong 1/2 cup of coffee before bed also helps. Don’t expect a lot of help from your neurologist. These headaches are rare and they likely have not treated many patients with them. Best of luck to you. These headaches are miserable.

My bought with these horrible nocturnal hypnic headaches came on 2 years ago in the early fall. I was desperate to find the answers you seek and any relief I could find. Unfortunately, I never could confirm the source, but after trying many of the drugs, caffeine, melatonin, etc., my neurologist gave me a steroid step down prescription late December and by mid January they stopped. I only had 1 or 2 milder episodes in the following month and nothing after. My neurologist hypothesized that a nerve had been irritated and that the steroid calmed it back down. Hope this helps you. Truly the most frightening and painful thing I’d experienced (outside of childbirth!). Good luck!

I am so sorry you are having nightly headaches that were were assumed to be migraines. Did your November visit with a neurologist corroborate that diagnosis, or does the neuro suspect something else? I am the original poster of this thread, and was diagnosed with classical migraines in the third grade, then 40 years later, also with nocturnal inflammatory type hypnic headaches (which were rare). Since then I have been told my nocturnal headache has characteristics of both cluster headaches and hypnic headaches. They occur four times per night, the worst being the fourth, unbearable). I cannot sit or lie down, and pace for hours hold my head on (ears and eyes feeling like they will explode) until basically I pass out, leaning against a wall from exhaustion. In 2007, a headache specialist in CA had me try several preventatives for "hypnic" headaches, and the only one that works for me is Indocin SR (indomethin sustatined release), taken each night approx 1.5-2 hours prior to sleep time. I also drink a cup of coffee prior to bedtime, and if I don't add that, I will wake up with a headache (milder than if I had not taken Indocin).

Indocin is an old potent nonsteroidal antiinflamatory drug, for acute use only as it can cause severe gastric bleeding at any time in treatment. Since there is no other option for me as of yet--and since I did develop some severe GI affects with Indocin after six years use--I take a concommitant drug daily called Protonix to counteract the GI side effects. Last year I visit Mayo Clinic Headache Specialist Dr. Whealy to discuss my uncontrolled migraines (life long) despite having tried almost everything possible medically and lifestyle measures; and to help me find an alternative to Indomethacin for my 4x nightly "inflammatory" (hypnic) headaches.

He has solved my migraines issue thank God (Emgality, which my health insurance does not provide or cover), and I am so indebted for getting my life back. He is highly motivated to find an alternative to Indocin as a preventative for the nocturnal headache as it is not safe long term. Emgality does not prevent my nocturnal headache. I am about to start taking (and gradually build to high-dose) daily melatonin; while continuing to take Indocin for now, trying a night without it after a very high dose of Melatonin is reached. We briefly discussed root causes and he suspects my cause ifor migraines may be genetic, though only two familiy members had migraine headaches for a very short time in their lives.

I needed solutions for pain reduction and for staying out of the Emergency room from severe headaches wtih prolonged GI effects, resulting in dehydration, and stroke symptoms that were making brain scans necessary at the ER. Dr. Whealy is amazing. He researched my entire history of treatments and headache triggers/patterns in two hours. He was upset that my health care provider has none of the newest drugs on formulary for migraine prevention, and he continues to write/renew my prescriptions which I fill locally in CA. I don't know if Mayo is providing virtual appointments to new patients, but it would be amazng if every headache sufferer who couldn't find help locally could access a top specialist via phone. I flew to Rochester (from CA) for my appointment and later to Mayo Scottsdale for a follow up sleep study. I hope you find help locally, but if you are still in excruciating pain and cannot get relief, you might consider looking for a nearby headache specialist/neuro or seeking help at Mayo Clinic. I wish I have done so years ago. I hope you can get some answers and some relief soon.