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Chronic severe nocturnal hypnic headaches
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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3 Reactions@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.
@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!