Chronic severe nocturnal hypnic headaches

I did see you post, glad you discovered and shared your trigger! I hope others will see that, and investigate the possibly it might be theirs also. I do use a foam roller (purchased it from a Polestar pilates therapist) to keep my backbone supple and the nerves, massaged and in thier places. Over the years I have been evaluated for spinal nerve issues as causal, to know avail. However, I did see a chiropractor (and massage therapist) for what turned out to be permanently knotted muscles in my shoulder blades (tensed for days due to headache pain). It took two years of massage and chroprtactic to normalize them. Have had xrays and scans many a time of the brain, neck and spine to evaluate possibility of tumors or impingements that could have been my trigger for the migraines or nocturnal headaches (which share traits of cluster and hypnic headaches). I have tried various pillows (for the head; and wedge for the body; sleep position "props," etc) for prevention, but so far, only Indocin plus caffiene help prevent the nocturnal headaches 97% of the time. When that fails, I use injections of Toradol, then ER if that doesn't stop the cycle. I did wear Sancuso patches for several years (approved to prevent/treat chronic nausea associated with chemotherapy) which significantly helped reduce vomitting and resultant profound nausea that would linger for weeks. Have ruled out sleep apnea as well. Having now experienced incredible relief with newer drugs like Emgality for migraines, it gives me hope that new treatments and preventatives will be discovered for inflamatory headaches such as cluster and hypnic headaches, and similar uncategorized variants.

Yes, I do experience these headaches. I haven't posted for several months, though, because I thought I had found a cure in the hormone supplements I was taking. These hormones have lots of unpleasant side effects in addition to gradually becoming less effective against my headaches. That why I was interested in learning more about the nerve block.

Has anyone had their cortisol and melatonin levels checked? If so, did it help in relief.

Hello @akalsas, You will notice that we changed your discussion title to pose your question in hopes that it will bring more members into your discussion. Here are a few articles I found related somewhat to your question that may be helpful until members with experience can respond.

A study from 1984 - "Plasma melatonin, cortisol, GH and prolactin levels were determined by radioimmunoassay. Most of the cluster headache patients showed a decrease in..." -- A chronobiological study of melatonin, cortisol growth hormone and prolactin secretion in cluster headache: https://pubmed.ncbi.nlm.nih.gov/6518501/

Melatonin and cortisol profiles in late midlife and their association with age-related changes in cognition:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4731002/
Circadian Variation of Migraine Attack Onset: A Review of Clinical Studies
-- https://www.hindawi.com/journals/bmri/2019/4616417/

Have you had the chance to discuss it with your doctor or care team?

Thanks a lot

Sent from my iPad

In past discussed but no help. I need to search for md that thinks along thes lines. Tired of h’aches and lack of sleep

@akalsas - I am curious to know if you had a MRI of the brain and evaluation by a Neurologist?
I also hate the headaches at night

I
Have had a total of 3 mri’s. One with contrast. Nothing noted. How do you handle the lack of sleep?

I usually get sinus pressure headaches at night, at times severe. I usually apply a heating pad and take acetaminophen and a decongestant.
Are you only having headaches at night?
Did you see a Neurologist when you had the MRIs?
As you know there are different types of headaches, such as tension, cluster and migraines- there probably are more.
It appears to be a vicious cycle- if you don’t get enough sleep, chances of getting a headache are large. If you have a headache- you can’t sleep.
A good Neurologist should be able to tell what type of headaches you have. There are also several different medications used to bring good sleep back, and then headaches will lessen too.

H’ache only when sleeping. Have seen several Neuro’s. Meds not help and caused side effects. Caffeine only thing that helps to treat h’ache but does nothing to abolish the h’aches