Chronic severe nocturnal hypnic headaches

@vtjoanne that is good to know! I am so glad the caffiene tabs are providing sound sleep and no headaches!

My nocturnal "headaches" before I started Indocin/coffee/melatonin treatment used to wake me from sleep at the same 4 times each night. When I was diagnosed, the last awaking "headache" each night was always about 4:34am.

I can see now (due to apple/watch sleep tracking when I try to discontinue Indocin altogether), that my "headache" induced awaking's occur every time my brain is in REM cycle. Maybe it's linked to circadian rhythms? IDK. I can also now "see" that the intervals between my REM cycles during the night are not the same; the intervals between each REM usually get shorter as the night progresses.

@taterjoy I wake up during the early morning usually around 3-5am and have issues falling back to sleep but most times I do fall back to sleep. Of course, this happened before I took the caffeine tabs so I don't think it's the caffeine tab that is causing me to awaken at that time.

I found some insightful information regarding why we wake up at 3 a.m., based on research and papers from Nobel Prize-winning theoretical physicist Richard Feynman. It offers an in-depth explanation of how our circadian rhythms affect sleep as we age. I can't place a link here, but search YouTube for this title:

The Feynman Way

"Why You Wake Up at 3AM — What Your Body Is Really Doing"

To answer your question, the doctor said to start with 200mg's. Possibly because most dosage in OTC bottles are 200mg tabs. Thankfully it is still working.

@vtjoanne Wow, that's amazing! So happy for you! The Immediate and complete disappearance of your nightly hypnic headaches when taking nightly 200mg tablet of caffeine is encouraging. I would like to understand the mechanism as well. Is your sleep "sound" sleep when you take 200mg caffeine prior to bedtime? When I stopped drinking the nightly coffee (along with taking my nightly Indocin and melatonin) I noticed my awakenings during sleep (monitored by Apple watch) showed 2-3 short awakenings per night; Awakenings per night WITH caffeine before bedtime were 11-18 (short). I don't know what it means but the nocturnal impact of caffeine on sleep quality and on the hypnic headache prevention are of great interest. Thank you for sharing that! I wonder how your neurologist was convinced of that dosage!

@gset no I have not taken heparin or any DOACs. But its helpful to know that there may be a correlation between those and headaches for some patients. I will certainly prepare in case I never need these treatments. Thank you for sharing that so that we can be better prepared. I hope there will be more alternatives for your to replace the DOACs and Heparin that do not cause headaches or other side effects.

My hypnic headaches have completely stopped. I have not had a headache in over four months. After relevant tests and scans (which showed minor, age-appropriate white spots) came back normal, my neurologist diagnosed the headaches I experienced for over two years—which occurred specifically upon waking from sleep—as "hypnic headaches."
While my neurologist had no definitive explanation for why this works, I began taking one 200mg caffeine pill before bed, and the headaches ceased immediately—literally from the first night. As a lifetime black tea and occasional coffee consumer, I changed nothing else in my diet, exercise, or supplement routine.
I would like to understand the mechanism of this, specifically if it is as simple as caffeine constricting blood vessels that were previously expanding/dilating, or if it is related to hypothalamic activity. I hope sharing that a simple, OTC caffeine pill solved my chronic issue helps others.

Do you think Tylenol +caffeine tablets work?

Hello,
i have not been officially diagnosed for Hypnic headaches but i am experiencing nocturnal headaches and similar to what i read in this blog. I noted that when i fall into a deep sleep is when t happens. the nights that i cant sleep properly i don't have them. And i read that melatonin helps. Does anybody takes it and does it work.

I have suffered from hypnic headaches ever since being on DOAC blood thinners. Occular migraines happen with heparin. When I don’t take any of these I get no headaches at all. I think this is my cause but as I have to be on blood thinners I am running out of options. Anyone found any relationship between meds like these an£ their nighttime regular headaches?

@duchess926
Thank you for sharing your experience. We’re all here trying to get information or ideas or share what we have experienced that may help someone else.
Many of us seem to learn about types of headaches online more than from doctors and the forum is a reassuring place to check it out further.

@docb99 @taterjoy @mlpults @kmsb
All…have read all of your posts and so sorry to read all the struggles.
My story….years ago I had dental implants (upper left side) by a dentist with
drug problems unbeknownst to the dentist who recommended him. The entire procedure from beginning to end was a nightmare….long story short, after it was all over, dentist committed suicide and I was left with trigeminal nerve pain and sinus problems. My nerve pain morphed into a second problem. ….Hypnic Head pains. I spent many years in acupuncture and a pain clinic here in NYC.
I lived off and on, on Prednisone as the only pill to stop my nerve pain. I also used Fiorcet at night for the hypnic headaches….I have built up a tolerance to the pills and was desperate for help. On my own and thru research at Mayo Clinic, I found an unbelievable solution that works for my nerve pain…it’s called the Scrambler Technique…a non-invasive and not painful treatment. Unfortunately it is not covered by insurance…I found a clinic in Clifton, N.J. that only does this technique….I am happy to say it’s working….next…My neurologist suggested the 31 shots of botox to head, face and neck to stop the headaches. This procedure is every 3 months (4x a year) and I’m getting ready to get my third treatment….This procedure is also successful….after my second round, I started sleeping thru the night with the exception of having to go to the bathroom….My goal is to be both pain free and medication free….so far, so good…I live in NYC and my insurance covered the Botox…I am also 83 years old.