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Chronic severe nocturnal hypnic headaches

Sleep Health | Last Active: Sep 26, 2023 | Replies (239)

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@lwatson612

Hi everyone, I noticed most of this discussion is from a year or more ago, but I stumbled across it while researching something that may help my son. It actually took a while for it to occur to me that it was odd that his headaches literally ONLY strike at night while he is sleeping. We have called them migraines, and I just assumed they only came at night. Now I see that they're called something else entirely. The reason I finally realized it was odd is that he started having them so frequently. He is only 17 though, and I understand the onset is always much older, so that is very odd. He first started having them about 2 years ago and then they stopped for a year, and now they are back with a vengeance. He had a MRI 2 years ago and everything checked out normal. His usually hit around 5:30 a.m., though one hit the other night at 1:30 a.m. He did have one after a nap the other day when he wasn't feeling well, but that's the only time that has happened. He has had them "come back" thru-out the day when medicine wears off, but they always strike between 4-5:30'ish. I've recently started giving him Excedrin or goody's powder, and those work better than anything else, though I'll also give him 2 advil if it's still hurting. I'm not comfortable putting him on any preventative prescription, he's still growing and there are just so many side effects. I do have migraines and take Trokendi XR (derivative of Topamax). He saw a chiropractor recently for 7 sessions and we felt like that was helping. They could tell his neck near the base of his head had some issues, the nerves on one side were essentially numb (I'm not using the technical words). He's an athlete and the chiropractor said as the season gets started, he will likely improve some as well, but the adjustments also should help. He said we could need some maintenance but he's hoping that helped. He's had 2 since we stopped. I read that melatonin can help? I also read that caffeine can help and I'm not sure how much would be ideal for a 17 year old, but for those of you using caffeine, I'd like to know if it impacts your sleep? I realize it may be worth it to avoid the headache, but I'd still like to know if it's keeping you awake or causing you to wake up? It seems he is at a very different stage of life than a lot of you, so he may be impacted by it very differently, but since he has to get up for school every morning, I hate to keep him up half the night with caffeine đŸ™‚ I also think lack of sleep may give him a headache sometimes? I'm sure hormones plays into it as well. I'm so sorry that you all are suffering with this and discouraged that it's been so long for all of you...

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Replies to "Hi everyone, I noticed most of this discussion is from a year or more ago, but..."

Melatonin could be worth trying. I take melatonin. I started with 3 mg. but increased with guidance of a headache neurologist. I currently take 15 mg. Do not be concerned with taking a caffeine tablet. Caffeine prevents the headache in some people, also those of us with these night time headaches seem to be immune from the caffeine keeping us awake. The caffeine does not cause us to wake up. I currently take prescription Gapapentin as well as melatonin. It keeps things at a tolerable level of headache activity. Best of luck to your son.

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.

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.