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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.

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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.

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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

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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.

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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

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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.

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

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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.

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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

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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.

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

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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?

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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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1 reply
Lisa Lucier | @lisalucier | Feb 4, 2019
In reply to @timpowell84 "Lisa I'm new to this and confused how to properly reply I'm looking for either a..." + (show)
@timpowell84

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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@timpowell84 - I've not, as of yet, seen any Connect members speaking about retro ocular hypnic nocturnal headache. I'm not seeing much in online literature, either, unfortunately. I'm seeing that the headache type most often associated with retro orbital pain is cluster headache. Wanted to confirm your headache type?

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1 reply
jana15 | @jana15 | Feb 5, 2019
In reply to @lisalucier "@timpowell84 - I've not, as of yet, seen any Connect members speaking about retro ocular hypnic..." + (show)
@lisalucier

@timpowell84 - I've not, as of yet, seen any Connect members speaking about retro ocular hypnic nocturnal headache. I'm not seeing much in online literature, either, unfortunately. I'm seeing that the headache type most often associated with retro orbital pain is cluster headache. Wanted to confirm your headache type?

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It could be he is suffering from two rare headache types. I have hypnic headaches and chronic paroxysmal hemacrania. That can be trickier and take longer to diagnosis. It took several years and a couple neurologists to diagnosis me.

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timpowell84 | @timpowell84 | Feb 5, 2019

Lisa they changed the names of these headaches over the years and misdiagnosed them for years started off with migraines then it went to clusters then it went to retro ocular then it went to hypnic headache I don't think anybody knows what to call itI call it excruciating eyeball pain that wakes me up at the same time each night I have them causing sleep deprivation and all the ill effects that comes with it including hallucinations aggravation suicidal thoughts depression I'm looking for somebody who knows how to treat eyeball pain and feels like somebody's pushing on my eyeballs from the inside

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2 replies
Lisa Lucier | @lisalucier | Feb 5, 2019
In reply to @timpowell84 "Lisa they changed the names of these headaches over the years and misdiagnosed them for years..." + (show)
@timpowell84

Lisa they changed the names of these headaches over the years and misdiagnosed them for years started off with migraines then it went to clusters then it went to retro ocular then it went to hypnic headache I don't think anybody knows what to call itI call it excruciating eyeball pain that wakes me up at the same time each night I have them causing sleep deprivation and all the ill effects that comes with it including hallucinations aggravation suicidal thoughts depression I'm looking for somebody who knows how to treat eyeball pain and feels like somebody's pushing on my eyeballs from the inside

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Thanks for the clarification, @timpowell84. That is confusing to have the names of these headaches evolving like that. I am terribly sorry you are in such excruciating pain.

I would suggest that you contact Mayo Clinic and ask to see a headache specialist in neurology
http://mayocl.in/1mtmR63.

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