Chronic severe nocturnal hypnic headaches

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.

@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!

@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 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.

Hello, anyone who struggles with hypnic headaches. I have had this problem since my early 20s and I am now 68. I find them debilitating. Drinking one cup of coffee before bed seems to help sometimes, about half the time. My doctor prescribed indomethacin 50 mg which did not seem to do much but I think I’m going to give them another go. He also recommended melatonin 5 mg.
This is how it goes at night: I go to bed and wake up sometime between one and three every night for years with pain only on the left side from base of skull to left side of above eye. Getting up out of bed for as much as 30 minutes can help as does making one cup of coffee and sitting. I am sensitive to light, sound, and movement. I find it most disruptive, especially when I need to function normally the next day. It is mind over matter lol.
I work hard to maintain a good sense of humor over this, and since I’ve had this thing for decades, I’ve learned coping skills. Still, I’m going to go another round of the Indo and melatonin, and see what happens. I welcome any comments, and I am sorry if you struggle with hypnic headaches, like I do- yes, it is frustrating,

Yes there are few of us out there. I’m 72 and have had them over 10 years. Between 1:30 and 3:00 am I wake with a headache on the right side above my eye area. It is not debilitating but can’t sleep with it and feel like I have to get up and do something . A half hour of light exercise usually takes care of it . As does coffee in the morning. Sometimes it comes again an hour and half later. That scenario goes on all day and. I take a sumatriptan. Have tried almost everything mentioned over the years and some work for a few nights . Then what worked seems to make the headaches pain level worse. I average 15 to 20 nights per month, and try to catch up on sleep during the day. Am seeing a new neurologist this week because I had a real 15 hour migraine 2 weeks ago. It was scary. Not like the mild nocturnal ones. I was so sorry to hear your story, had to comment again.

I’m somewhat new to hypnic headaches but not migraines or occipital head pain. I’ve had headaches for over 40 years. I’m 76 and still got ‘em.
I diagnosed myself with hypnic from others’ experiences here and a lot online after I started waking every morning about 3 with a headache about a year ago. The headache specialist I now see who confirmed the diagnosis and a need for Indocin also told me I could be having more than one type of headache. This is helpful to know.
I found Indocin to be helpful for the hypnic. I’m a bit worried about long term use. I am doing Botox again. It helps prevent the occipital pain, but I can’t sleep unless I’m almost sitting up. I use Imitrex when a headache occurs in the day. Gel pacs are helpful on my head or around my neck. Just learned that around the carotid artery in your neck helps constrict blood to the head causing throbbing.
We longtime headache patients may very well have different types of headaches. I very much believe that I do. Don’t let a doc tell you what you feel. You know. We can all help each other.

It has been awhile since I have commented but wanted to reach out again. I would highly suggest a reputable Food Reactor/Sensitivity Test. The one I took tested against 150 foods and chemicals. I discovered several healthy foods. Many of my trigger foods fructose and possibly lactose. Some of the worst are corn syrup ( no surprise, it's not food) watermelon, oranges, tomatoes, sweet potatoes, carrots, celery, brussel sprouts, cauliflower, asparagus, beef, turkey, msg, some food dyes.
1 100mg Caffeine tablet taken right before going to bed almost always helps if I add minimal amounts of my trigger foods to my diet.
I try to focus on the healthy foods that I CAN eat. Avoid processed foods (there's almost always a trigger listed). Eating out is difficult. I do 'grieve'/miss some foods but Thankful for my 'good food' list.
My food test was almost $1000 15 years ago but worth it! There are newer methods of testing (strands of hair) that may work.
I hope this info helps someone. Prayers for all in this struggle.