Chronic severe nocturnal hypnic headaches

Posted by taterjoy @taterjoy, Aug 29, 2016

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.

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 🙂 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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@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 🙂 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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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.

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@jana15

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.

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@lwatson612 @jana15 I had migraines but am not really familiar with hypnic headaches, except for what I have read here. Are they similar enough to migraine that they use the same medication?
I really just wanted to comment, that when I was young no amount of caffeine kept me awake, but now I have to steer clear of it in the evening. I don't know if I am typical or if that's just me, but I think for people who are used to caffeine the effect is considerably less.
JK

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I have chronic hypnic headaches for 17 years up to 23 a month with 2 hours sleep per night including hallucinations due to sleep deprivation please help Tim p

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@timpowell84

I have chronic hypnic headaches for 17 years up to 23 a month with 2 hours sleep per night including hallucinations due to sleep deprivation please help Tim p

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Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/?pg=3#comment-246729

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@timpowell84

Please help I suffer from hypnic headaches for the last 17 years up to 23 a month with 2 hours of sleep each night I have a headache I wake up with excruciating eye pain I suffer from severe sleep deprivation including hallucinations due to lack of sleep sleep aids don't help headaches burn right through them please help

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I've been to Stanford headache specialist and Sacramento headache specialist they just want to lock me up and give me psych meds that won't take away my pain

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Please help I suffer from hypnic headaches for the last 17 years up to 23 a month with 2 hours of sleep each night I have a headache I wake up with excruciating eye pain I suffer from severe sleep deprivation including hallucinations due to lack of sleep sleep aids don't help headaches burn right through them please help

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@timpowell84

Please help I suffer from hypnic headaches for the last 17 years up to 23 a month with 2 hours of sleep each night I have a headache I wake up with excruciating eye pain I suffer from severe sleep deprivation including hallucinations due to lack of sleep sleep aids don't help headaches burn right through them please help

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Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

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@johnbishop

Hello @timpowell84, welcome to Mayo Clinic Connect. I can't begin to imagine how hard it must be to deal with chronic hypnic headaches for 17+ years. Have your doctors been able to offer any kind of help?

Here is an earlier post that provides some information about the hypnic headaches. It may be helpful to read through.
https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/?pg=3#comment-246729

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I take imitrex that's the only drug that I found that stops the headaches narcotics don't touch it morphine doesn't touch it Demerol doesn't touch it Dilaudid doesn't touch it I tried aimovig for 2 months it reduced for 2 months down to 6 then stopped working went back up to 23 headaches the next month

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@colleenyoung

Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

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Thank you for your help I've been searching for a long time to find other people with the same symptoms or somebody who can help me rather than put me in a psych ward and give me psych meds that won't stop my headaches I wake up after 2 hours of sleep with excruciating eye pain it feels like somebody's pushing on my eyeballs from the inside

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@colleenyoung

Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number. Connect is a public forum and we recommend that people not share personal contact information for security reasons. Also, I moved your posts to this existing discussion about hypnic headaches so you can connect with others talking about similar issues, like @jana15 @lwatson612 @meme59 @shaylala and others.

It is unimaginable that you have been suffering from these headaches for 17 years. It must be impossible to function with such sleep deprivation.

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My sleep deprivation has been going on for over four years now I take sleep aids but when I have my headaches it burns through them and I still wake up with excruciating eye pain

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@timpowell84

My sleep deprivation has been going on for over four years now I take sleep aids but when I have my headaches it burns through them and I still wake up with excruciating eye pain

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@timpowell84 Your headaches sound absolutely horrible and debilitating. As a past migraine sufferer, I have to say that this sounds so much worse. It obviously does have similarities though since Imitrex is used for migraines also.
At least you have something that gives you some relief, unlike before these newer drugs were developed.
JK

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