Chronic severe nocturnal hypnic headaches

Yes...I think I provided dosage in this thread way back when.

@akalsas
I am sorry I did not see this when you posted it on 11/20. In case you are still monitoring Connect here is the link to the tea on Amazon:

It has been more helpful for my wife than anything else she has tried for her headaches. Best, Hank

Thanks

The nerve block sounds amazing. Could you tell me how long it lasts and what doctor you saw?

Anyone find that 5-http, gaba, & or saffron help in addition o caffeine and melatonin?

@missgrace Welcome back to Mayo Clinic Connect, a place to give and get support.

So that I can connect you to right members, may I ask if you experience nocturnal hypnic headaches?

Anyone also have sleep apnea? Did cpap or dental device help?

@akalsas - I have obstructive sleep apnea and use a CPAP device that helps me. I'm not sure I could use a dental device as I have a partial upper denture which I think would be an issue for me. There is another discussion that you might find helpful if you read through some of the posts by other members.

- Sleep apnea and potential treatments: https://connect.mayoclinic.org/discussion/apnea/

Here's an excerpt from the Mayo Clinic website on Obstructive sleep apnea - Diagnosis & treatment under the Therapies heading:
"Mouthpiece (oral device). Though positive airway pressure is often an effective treatment, oral appliances are an alternative for some people with mild or moderate obstructive sleep apnea. These devices may reduce your sleepiness and improve your quality of life.

These devices are designed to keep your throat open. Some devices keep your airway open by bringing your lower jaw forward, which can sometimes relieve snoring and obstructive sleep apnea. Other devices hold your tongue in a different position.

If you and your doctor decide to explore this option, you'll need to see a dentist experienced in dental sleep medicine appliances for the fitting and follow-up therapy. A number of devices are available. Close follow-up is needed to ensure successful treatment."
-- https://www.mayoclinic.org/diseases-conditions/obstructive-sleep-apnea/diagnosis-treatment/drc-20352095

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.

@taterjoy
I definitely sympathize with you. I had similar symptoms and tried everything, even Mayo Rochester headache clinic. I think you read my original post.
My headaches seemed to be caused by a pinched nerve between the shoulder blades. They are gone and stay away long as I use that foam roller every morning. If I even feel the hint of a headache I use it again.