Chronic severe nocturnal hypnic headaches

Dear Taterjoy,

I am so sorry to read about your recent acute migraine. I have not had a headache that bad since the last time I had to take nitroglycerin! I'm glad you've recovered, but what an awful bout you must have had.

I wanted to add one piece of information about my headaches. About four years ago, I started sleeping in an almost upright position. Because the headaches would often go away IF I got up immediately upon waking with one, I thought perhaps I could forestall them by simply not lying down. Sitting up was not a perfect solution, but I feel it helped to some degree.

However, since learning about hypnic headaches, and taking caffeine at night, I have had only two headaches in thirteen days. This is a huge improvement. I have even been able to spend a larger portion of the night sleeping supine. I am taking more caffeine than what was recommended on the sites I read. (Either one strong cup of coffee plus 100 mg. caffeine tablet, or one 200 mg. tablet)

I have not yet made an appointment with a new neurologist, so this remains "my own diagnosis" at this point.
I'll let you know what I learn when I do meet with someone.
I hope you do not have another bad migraine attack for a long time!

Cheryl

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, 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 hope you are able to increase your doses to help stave off the nocturnal headaches. Are you able to drink coffee or take caffeine tablets? I wonder if those might help prevent your headaches. Also, have you seen a headache specialist? That your headaches are always on the same side could be that they are migraines, or possibly something else, even related to an anatomical issue. Please keep us posted and I hope you are able to tolerate the higher doses of hormones and are getting relief from the headaches.

I've found out now that, even though estrogen does relieve the headaches, I just can't tolerate the side effects - no matter how small a dose I take. I tried caffeine pills - up to 50 mg. per night. They did seem to relieve the headaches on 2-3 nights, but I had to keep upping the dose to have that happen after that - and I don't want to do that because it bothers my otherwise pretty good sleep - even with the headaches! So on to the next thing. I'm already on a very good diet, mostly chicken, some beef and sardines, and boatloads of cooked vegetables, with a few other additions. Been on it for almost 8 years and my health is actually wonderful - with the exception of these stupid headaches. About a month and a half ago, I started near infrared sauna therapy on a daily basis. Still too early to tell definitively, but the headaches seem to be receding. The sauna is supposed to eliminate toxic metals in my system - most of which have accumulated since before my diet change (aluminum, mercury, etc.) Hair analysis is wonderful for actually determining what's going on in that department. The sauna is starting to make me sweat some - which is the whole point. I have never been much of a "sweater", even in hot weather. I'm going to continue the daily saunas and see what develops! Maybe it will also help my somewhat mild brain fog. Have high hopes!! Will try to keep you posted.

I have been getting nighttime headaches for about a year. They wake me up usually around 3am, then it's hard to go back to sleep, if not impossible. These headaches usually go away after i get up for the day, but sometimes turn into a migraine. It feels like they start at the left side of my neck and continue up to the left eye. There is pain to the touch on my neck and side of my head.

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!

I have been getting nighttime headaches for about a year. They wake me up usually around 3am, then it's hard to go back to sleep, if not impossible. These headaches usually go away after i get up for the day, but sometimes turn into a migraine. It feels like they start at the left side of my neck and continue up to the left eye. There is pain to the touch on my neck and side of my head.

I could’ve posted this exact thing today. I feel like I’ve been hit by a brick at night. It is always on my right side above and behind my ear. I also have spin off headaches afterwards. Either tension type headaches or facial pain. I also can get this particular headache if I nap. I tried melatonin but couldn’t sleep at all with it. What’s most likely to help? What have people had success with?