Chronic severe nocturnal hypnic headaches

Hi akalsas! I am so sorry you are having issues and need urgent advice. I experience severe nocturnal headaches four times nightly unless I take preventative meds (Indomethacin 50mg spit dose, melatonin 30mg nightly, 3/4 cup coffee 1-2 hours prior to bedtime. They were accompanied by severe chronic nausea and weight loss. I believe my local neuro checked my cortisol levels but I don't think melatonin was "checked." My Mayo Headache specialst (neurologist) had me add melotonin to my current regimen as a "trial" and it has helped to a degree. If you are loosing sleep, please be aware that there is a condition called Sleep Psychosis that can occur if you go without sleep for many nights in a row. I have not experienced that, but I know someone who did. What are your symptoms, and what type of physician are you seeking help from? Also, do you also suffer from headaches of any type (including migraines?)? My undertreated migraines were contributing to the intensity of my night nocturnal inflammatory headaches that act like Cluster headaches but do not fit that category or the new definition of Hypnic headaches. I hope you can find relief. Please reach out to me privately if needed. If you are depressed or feeling defeated, please reach out to a mental health professional if you are able to.

Thanks! Never h’aches before start of h’ache while sleeping. None of those meds or supplements have helped. Caffeine is only thing that helps during h’ache.

Our internet service was off for 18 hours, is still sporadic. I was wondering what meds you have tried thus far? My first local Headache specialist had me do trials on many prescription drugs prior to prescribing indomethacin. Also, have you tried drinking coffee about 30-60 minutes prior to bed time? Some people with hypnic headaches prevent the onset of their nocturnal headaches by taking caffiene tablets or drining coffee PRIOR to bedtime. I'm not a physician and don't know what dose to suggest, but later tonight I will try to find some articles about "preventative" use of caffience (rather than using is for acute treatment of an in-progress headache). Are your headaches waking you up multiple times pernight? I charted mine, and the four nightly headaches occured at the same times every night (apparently during Rem sleep cycles). The fourth always occured around 4:35am each night/morning. It was unbearable. Not any more, except maybe 1-2 nights per month (not every night like before!). I hope better days and nights are ahead for you.

Thanks for your insight. Tried caffeine before bed and multiply other supplements as well as meds which caused side effects. My h’aches are ever changing , at different times of the night, from mild to intense, have tried acupuncture, chiro, direct electrical modulation , message , now using cft ( jury out if any help with h’aches but great for loosing my movements ). Have you read re the glymphatic system of the brain? Researching if this would be cause of problem. Must praise the Lord that this was the first morning in weeks that I awoke naturally after a night of 2 h’aches.

So glad you had fewer headaches last night! Maybe CFT is helping. I have not tried it. If I didn't have indomethacin that is so effective most of the time (along with melatonin, caffiene, and my migraine preventative CGRP injections), I'd be trying everything possible all over again. My Mayo headache specialist reviewed every prescription, every OTC/supplement, and every non-drug & lifestyle method I'd tried for 60 years, and found I had tried everything at correct (or higher!) doses. The only thing I had not tried for the migraines was a CGRP as my insuror would at the time, not provide it on furmulary nor RX it even for me to take to an outside pharmacy as a self-pay.

The CGRPs have changed my life immeasurably. If your noctural headaches could possibly be migraines instead of hypnics, the CGRPs might help you. (maybe you have already tried them all--each is slightly different). Both Emgality and Adjovy have helped me tremendously with migraines, and only a slight impact on intensity of nocturnal inflammatory headaches). Praying you will get fewer and less severe headaches going forward. And much better sleep and quality of life!

Hi, I've had nighttime headaches for at least 10 years now. They happen every night after I go to sleep. I usually wake up at varying times in the middle of the night with a right sided headache only. I think I clench my teeth now, so I got a custom nightguard. It doesn't seem to help, but at least it protects my teeth. I'm 70 years old and recently tried hormone therapy, estrogen, testosterone and progesterone. After a few days, I woke up with no headache!! However, at the recommended dose, I developed the beginnings of diverticulitis - so had to discontinue the hormones. I decided to start back on it again, but very low and slow - hoping that I can still relieve the headaches with a lower dose and not develop any more diverticulitis. I think I should be back up to the dose that relieved the headaches within a month or so. Like I said, low and slow - very frustrating - but hope it works in the long run. Will let you know.

I take 100mg.

I wake up due to a sleep apnea which triggers an arrythmea. This is called Cyclic Variation of HEart Rate. At which point the blood flows to my head and I feel a throbbing at the base of my skull. Like two fingers pulsing up into my head. It starts out no pain and then quickly accelerates in severity. I feel like they are about to pop. And then it spreads out like s sponge and dissipates. This can go on to my right temple. I have spent a year at doctors. In the end I self diagnosed with CVHR mixed with Hypnic Headache. As it happens I also stopped drinking caffeine a year ago so these "headaches" spiked to happening every other night. So I took 100mg of caffeine at bed, 10pm, on an empty stomach. I havent hade an issue in two months, not even the throbbing which would indicate more pressure from the faster heart rate.

I wake up due to a sleep apnea which triggers an arrhythmia. Specifically, I can wake up calmly, know I am not breathing, no have any pain at that time, and choose consciously to take a breathe and the whole thing kicks off on that breath. This is called Cyclic Variation of Heart Rate, CVHR. CVHR requires two things, an apnea event and bradycardia , slow heart rate. At which point the blood flows to my head and I feel a throbbing at the base of my skull. Like two fingers pulsing up into my head. It starts out no pain and then quickly accelerates in severity. There are variations where I feel no pain or I feel a stead mild pain throughout but worst case is it elevates to the point I feel like they are about to pop. And then it spreads out like s sponge and dissipates. This can go on to my right temple where it does the same thing, a sharper more migraine like pain. If I were to get up right then I would be fine. If I go back to sleep I am likely to wake again and repeat it. It would get more severe and eventually cause a headache. IT can go on enough that it will happen even as I stand up and walk around. Melatonin 5mg set me off and had it happen starting at 10pm at night and go all night, but low dose of 1mg was fine, did not help with attack though, just with getting to sleep.

These attacks usually happen at around 630am. If I look at my heart rate using a fitbit Im in bradycardia around that time. I also have had vivid dreams every single night for a year. These things tend to happen during dreams.

I have spent a year at doctors. Pulminologist, rheumatologist ( to look for arteritis), neurologist, cardiologist, and now a second sleep study. None of these doctors had a clue. In the end I self diagnosed with CVHR mixed with Hypnic Headache. As it happens I also stopped drinking caffeine a year ago so these "headaches" spiked to happening every other night. So I took 100mg of caffeine at bed, 10pm, on an empty stomach. I havent hade an issue in two months, not even the throbbing which would indicate more pressure from the faster heart rate.

I have a kidney stone so a year ago I stopped drinking sodas and I dont drink coffee. I had these attacks before, its why Im on a cpap, but they just figured it was CO2 build up due to apnea. When I got off of caffeine the attacks started happening every other night. They usually happen around 5-6am. I dont know who decided to call these headaches, they are nothing like it. These are attacks.

For me, because mine are triggered from CVHR and CVHR requires a slow heart rate at night, I was also able to stop these attacks by working out so hard during the day that at 10pm at night I still had a heart rate off 95bpm. So it takes all night to slow down and I never have bradycardia. But this is not 100%. So far caffeine, liquid is best, at night before bed has been perfect. I am still with a sleep specialist so they can actually diagnose me. So far Ive had to figure it out.

Neurologist (not Mayo based) didnt have a clue and just randomly gave me Amnitryptoline. It didnt help. Well, I had one night where I had the attacks, felt the pulsing, and had zero pain along with it. But while the pain is a big deal, I worry more about the pressure and damage. The drug gave me severe side effects. He wouldnt try anytihng else and wanted me to go to a cardiologist who found no issue. HE just wanted to give me a drug, have me try it for three months (with the danger of these attakcs every other night) and follow up with an appointment (so he could get paid). Thats when I did one last google due to issues I had with hypnic flinches or ticks developing. Ticks have gone away now too.

IF caffeine does not work and if bradycardia is in the mix for you, try working out. I do not know if CVHR is always involved in hypnic headaches. If you are experiencing them, have you also looked at why you wake, is it an apnea. I also wonder if these things are rare because most people have caffeine of some form throughout the day and maybe more would have them if they didnt.

Hi, this is a very timely post for me. I have had headaches almost every night for the last 10 years and have seen several doctors over the years. I'm 70 years old now, and just found out about hypnic headaches. I've never wanted to take any heavy duty headache medicine, but I've come to the end of my rope about the headaches. Two nights ago, I tried 25 mg. of a 200 mg. caffeine tablet. The first night I woke up at 4:00 without a headache; when I went back to sleep, however, I woke up at 7:00 with one. Last night, I took the same amount, at the same time (about 10:00 p.m.) and did ever get the usual headache! I know it's very soon to predict what may happen, but it's the first night I've been headache free for a long time, so YAY!! Anyway, the caffeine appears to have a lot of merit. I've read that 40-60 mg. per night is the usual dose for hypnic headache. Thought I would start out lower and raise it if I have to. Hope this post helps - even though it is early on!! Best of luck to you and your son with this debilitating problem. It appears to be hormonal because estrogen helped for a couple of days, but the side effects were too much for me. Will investigate further how caffeine helps hormonal problems.

My neuro wants to try me on the GCRP injectables. I am 81 now and really don't get migraine during the day anymore except if I'm on the computer too much. I haven't heard anything about using them for Hypnic headaches. I have a feeling she is throwing things at me. The head neuro at UCSF headache clinic who gave me an hour consultation also suggested trying the herb Botswellia. I haven't tried that yet because I can't figure out a dose. She did want me to try Nurtec but Medicare doesn't cover it and $1000 is over my budget. If I do try the GCRP's is one better than the other? For some reason she said she wanted to try Emgality. Help!