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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.

timpowell84 | @timpowell84 | Jan 30, 2019

My headaches are retro ocular do you know of any other patients out there complaining of retro ocular pain

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jana15 | @jana15 | Jan 30, 2019
In reply to @timpowell84 "Hi I recently started posting and reading on Mayo clinic connect it seems most of the..." + (show)
@timpowell84

Hi I recently started posting and reading on Mayo clinic connect it seems most of the posts are 2 years or older do you know of any recent treatments or can you refer me to a doctor that's an expert on hypnic headaches I have yet to meet a doctor that has another patient with my symptoms please help me

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I don't know that there are any recent treatments that help hypnic headaches. I think the standards are caffeine, tablet or cup of coffee, before bedtime, not after you have the headache. Also, melatonin and gabapentin are often used as is lithium. I am not aware of anything else. I have read everything I can find regarding hypnics, not that there is a lot. Also, I think it is unlikely you will find a doctor who has treated a lot of us in his/her career. There just are not that many of us. When you have them on a nightly basis it is absolutely exhausting, also it hardly makes you want to go to bed because you wonder how long you get to sleep before the "bang" of the hypnic comes. Try having a cup of coffee before bed, not after you get the headache. Have you tried melatonin? If so, how much? The standard dose for someone using melatonin seems to be 3 mg. That might be a good starting point, but you can certainly go up from there. That amount might have little, if any effect on your hypnics. Good luck. You are not alone.

REPLY
1 reply
timpowell84 | @timpowell84 | Jan 31, 2019
In reply to @lisalucier "Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at..." + (show)
@lisalucier

Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at various times on Mayo Clinic Connect. Just wanted to check in with you and see how things are going with your headaches recently?

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Anybody have experience with retro ocular hypnic headaches?

REPLY
quazar | @quazar | Feb 2, 2019
In reply to @lisalucier "Hi, @timpowell84 - We've had a few other members mention using erenumab (Aimovig), like @hedjhog @msb18..." + (show)
@lisalucier

Hi, @timpowell84 – We've had a few other members mention using erenumab (Aimovig), like @hedjhog @msb18 @gothope @laluzhiker @quazar. I'd invite them to share any experiences using this medication for headache.

@timpowell84 – have you tried taking erenumab (Aimovig)? If so, has it made a difference with the severe nocturnal hypnic headaches?

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Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on NDPHresearch.org that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.

REPLY
4 replies
shaylala | @shaylala | Feb 2, 2019
In reply to @quazar "Let me first start by saying that I have NDPH, not migraines. So my use of..." + (show)
@quazar

Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on NDPHresearch.org that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.

Jump to this post

Since I’ve read a few people experienced temporary reprieves from the Hypnic headaches, I remain cautiously optimistic since I haven’t had one since 22 December after finishing a hefty round of Prednisone. I’ve been able to eliminate melatonin and caffeine before bed. I still take only 25mg of Amitryptiline nightly. Praying you find some relief. Would love a better understanding of why they occur in the first place.

REPLY
2 replies
timpowell84 | @timpowell84 | Feb 2, 2019
In reply to @quazar "Let me first start by saying that I have NDPH, not migraines. So my use of..." + (show)
@quazar

Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on NDPHresearch.org that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.

Jump to this post

I have tried Amy bag it stopped working after 2 months I've tried caffeine that doesn't work I tried to mail it to intoning that doesn't work I tried verapamil that doesn't work I've tried topamax. Doesn't work Demerol morphine Dilaudid Percocet darvocet does it work nothing prevents these headaches and only imitrex takes them away insomnia has set in Ben insomniac for 4 years hallucinations have played me due to sleep deprivation suicidal thoughts aggravation irritation and all the health effects that come with sleep deprivation why can't we find a doctor that can help

REPLY
timpowell84 | @timpowell84 | Feb 2, 2019
In reply to @quazar "Let me first start by saying that I have NDPH, not migraines. So my use of..." + (show)
@quazar

Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on NDPHresearch.org that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.

Jump to this post

I understand Amovig stopped working after 2 months verapamil topamax Percocet Dilaudid morphine Demerol melatonin caffeine pills none of that worked.I suffer from sleep deprivation for 4 years now hallucinations suicidal thoughts irritation aggravation depression the fact that I can't find a doctor that knows how to treat these headaches very discouraging your body gets to where it doesn't want to go to sleep and if I do get to sleep I just don't want to wake up because you wake up in pain but if you tell somebody that they want to put you in a psych ward why can't we find a doctor that's experienced with these headaches there's got to be somebody out there

REPLY
timpowell84 | @timpowell84 | Feb 3, 2019
In reply to @shaylala "Since I’ve read a few people experienced temporary reprieves from the Hypnic headaches, I remain cautiously..." + (show)
@shaylala

Since I’ve read a few people experienced temporary reprieves from the Hypnic headaches, I remain cautiously optimistic since I haven’t had one since 22 December after finishing a hefty round of Prednisone. I’ve been able to eliminate melatonin and caffeine before bed. I still take only 25mg of Amitryptiline nightly. Praying you find some relief. Would love a better understanding of why they occur in the first place.

Jump to this post

It's something during my sleep cycle I don't know what triggers it I just know I wake up 2 hours after going to sleep with extreme eye pain caffeine doesn't help verapamil didn't work topamax didn't work aimovig stopped working after 2 months

REPLY
timpowell84 | @timpowell84 | Feb 3, 2019
In reply to @quazar "Let me first start by saying that I have NDPH, not migraines. So my use of..." + (show)
@quazar

Let me first start by saying that I have NDPH, not migraines. So my use of Aimovig was more of a hail-mary, last-ditch attempt to find anything that might work. I was approved for 3 months of use, and my third month was a double dose. It made absolutely NO difference in the severity of my constant headache. So sadly, that is the end of that. Aimovig has now been added to the long list of pharmaceuticals that have no positive effect on my NDPH. I read on NDPHresearch.org that some people were getting relief after 6 months on the drug, but I was never able to get more info from that organization. My neurologist said that if I didn't get relief in 3 months, there's no reason why 6 would be better – something about how the drug works, I think. So, back to the drawing board.

Jump to this post

That's what happened to me after 2 months double dosing aimovig it stopped working so I guess we're just screwed huh?

REPLY
timpowell84 | @timpowell84 | Feb 3, 2019
In reply to @jana15 "I don't know that there are any recent treatments that help hypnic headaches. I think the..." + (show)
@jana15

I don't know that there are any recent treatments that help hypnic headaches. I think the standards are caffeine, tablet or cup of coffee, before bedtime, not after you have the headache. Also, melatonin and gabapentin are often used as is lithium. I am not aware of anything else. I have read everything I can find regarding hypnics, not that there is a lot. Also, I think it is unlikely you will find a doctor who has treated a lot of us in his/her career. There just are not that many of us. When you have them on a nightly basis it is absolutely exhausting, also it hardly makes you want to go to bed because you wonder how long you get to sleep before the "bang" of the hypnic comes. Try having a cup of coffee before bed, not after you get the headache. Have you tried melatonin? If so, how much? The standard dose for someone using melatonin seems to be 3 mg. That might be a good starting point, but you can certainly go up from there. That amount might have little, if any effect on your hypnics. Good luck. You are not alone.

Jump to this post

I've tried melatonin verapamil topamax caffeine lithium no positive results aimovig stopped after 2 months I even take three sleep aids due to sleep deprivation the headaches burn through those as well there's there's got to be somebody out there that can help the eye pain I wake up with is excruciating I'm not saying I'm suicidal I'm just saying I understand you get to where you just want to go to sleep and not wake up

REPLY
timpowell84 | @timpowell84 | Feb 3, 2019
In reply to @colleenyoung "Hi @timpowell84. I add my welcome to you. You'll notice that I removed your phone number...." + (show)
@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.

Jump to this post

Can you help me find a doctor that's experienced in treating retro ocular nocturnal hypnic headaches?

REPLY
timpowell84 | @timpowell84 | Feb 4, 2019
In reply to @lisalucier "Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at..." + (show)
@lisalucier

Hi, cherylsd, @taterjoy, @kdubois@lauriedr @teege1 @lisafl @dawn_giacabazi @jals. All of you have mentioned experiencing headaches at various times on Mayo Clinic Connect. Just wanted to check in with you and see how things are going with your headaches recently?

Jump to this post

Lisa I'm new to this and confused how to properly reply I'm looking for either a doctor that has experienced with treating patients with retro ocular nocturnal hypnic headaches or even a patient that has experienced retro ocular behind the eyes hypnic nocturnal headaches and 17 years I have yet to meet somebody that says I know that pain you feel in your eyes and I can relate I can't be the only one

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