Chronic severe nocturnal hypnic headaches

Posted by taterjoy @taterjoy, Aug 29, 2016

I am looking for anyone else who has been diagnosed and treated for chronic, severe nocturnal hypnic headaches. I have had them for about 12 years, and on treatment, but not optimal treatment. I am interested in hearing how others with this rare diagnosis are being told to treat them safely.

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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.

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Profile picture for gset @gset

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?

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@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.

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Profile picture for vtjoanne @vtjoanne

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.

Jump to this post

@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!

REPLY
Profile picture for taterjoy @taterjoy

@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!

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@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.

REPLY
Profile picture for vtjoanne @vtjoanne

@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.

Jump to this post

@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.

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