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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@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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@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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@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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@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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@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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@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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@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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@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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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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@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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@socal

Wow, after all these years actually finding a diagnosis for these headaches! Reading all these posts was a reflections of my life: I’m 68, female, had migraines since teen years, felt great for a couple of years during menopause then, wham, the nighttime headaches began. I tried everything the neurologist threw at me and some worked for a period of time, until they didn’t. Had scans, sleep studies. Finally relented to their recommendation of Botox about four years ago and am still on it (no longer receiving shoulder or neck injections which has created problems for me). Have also been on Topiramate about 6 yrs. Botox took over a year to kick in, then worked fantastically, not so great the past 18 months. Usually have pain five nights a week, but it’s NOT as bad as before and I sleep with an ice pack every night and put it over my eye/forehead at first indication of pain. Do I like subjecting my body to Botox poison? No, but I also don’t like hanging over a toilet throwing up in unbearable pain either. None of the pain meds worked and the older you get the less my doctors want to give them to you. Some of the new meds on the market remain untested with older women according to reseach I’ve done (which the doctors do Not tell you), and though my Neuro office was really pushing me towards it because their trial run was positive, they now have told me to wait. My very, very, unofficial observation has been that a lot of migraine sufferers have sensitive systems.
I’d like to get off both, shouldn’t be on Topiramate, never should have since I have osteopenia and now osteoporosis in areas. Tried weaning off Botox once and that was a mistake……

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Hi, @socal – how are the nighttime headaches? Is the botox still working okay for you?

@timpowell84 – how are your headaches lately? Are you getting any more sleep at night?

@shaylala – have you noted any effects from the prednisone on the hypnic headaches?

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Updating my situation, and hoping that others can possibly update their experiences and headache status. I'm trying to tag @cherylsd @kdubos @lauriedr @teege1 @lisafl @dawn_giacabazi @jals @gothope @lulu1962 @socal @meme59 @lwatson612 @quazar @jana15 @shalayla @so4tune8 @patiencepie @timpowell84 @lisalucier @colleenyoung and JK @contentandwell. In my early sixties, I continue to have migraines, hypnic headaches, cluster headache; and one of the neuros in our "system" believes that my hypnic headaches (despite preventative treatment) then trigger a migraine and/or cluster headaches. I still have ER visits 1-2 times per year when preventative, acute and rescue meds fail.

I was shocked to read 1-2 months ago that migraines have recently been shown (reputable research) to not only increase stroke risk, but also increase the risk of dementia (not including vascular dementia). Stoke and dementia both run in my family, and it was sobering to learn about the link to dementia. I read years ago that poorly controlled migraines may possibly lead to brain lesions.

About a month ago I stayed at a BNB for the first time, 3000 miles from my home; unfortunately, on day 3 I awakened with a hypnic headache and was severely ill for hours, and after calling my health provider back home, was told to get to the ER. Both the Ambulance techs started IV fluids en route to the hospital; and the ER MD on duty the ER doctor insisted on brain scans since my usual very low BP was so high it was frightening. One of the two ambulance techs was new and shouted out that he had never seen a BP that high, which also made me realize I was in trouble. Upon return to my hometown, I contacted Mayo and I am so greatful to report that they accepted me as a patient (my appointment is in January). I am paying out of pocket because my health provider, whom I shared my plans with last week, says they don't do referrals out of the "system." Thirteen years ago I went through the same battle, and became a self–pay patient of a headache specialist several hours distance from my hometown. My current local neuro will also not write an RX for any of the newer migraine preventatives, even for me to fill self-pay at a non-provider pharmacy. These meds are not on our providers formulary and according to him, "there is not enough post-marketing experience" to prove they they are effective and safe.

Well, none of this makes me angry, it just makes me sad because my husband IS angry that I have not sought an appointment to visit Mayo sooner. I am hoping at Mayo to learn more about medical and non-medical treatments, recent "theory" regarding potential causes, how to manage with pain and the ill effects of "post hypnic headache" dehydration, nausea, and electrolyte imbalance. I am also hoping to find out eventually if there is any evidence (labs, exams, scans) that suggest I have early onset dementia, evidence of prior mild stroke, and kidney or endocrine issues; and how I can prevent or stall the progression of any of these diagnoses. I will be happy to share after my visit, anything that I learn that might help others @gothope @timpowell84 @lisalucier and Colleen Young. In my early sixties, I continue to have migraines, hypnic headaches, cluster headache; and one of the neuros in our "system" believes that my hypnic headaches (despite preventative treatment) then trigger a migraine and/or cluster headaches. I still have ER visits 1-2 times per year when preventative, acute and rescue meds fail.

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@taterjoy

Updating my situation, and hoping that others can possibly update their experiences and headache status. I'm trying to tag @cherylsd @kdubos @lauriedr @teege1 @lisafl @dawn_giacabazi @jals @gothope @lulu1962 @socal @meme59 @lwatson612 @quazar @jana15 @shalayla @so4tune8 @patiencepie @timpowell84 @lisalucier @colleenyoung and JK @contentandwell. In my early sixties, I continue to have migraines, hypnic headaches, cluster headache; and one of the neuros in our "system" believes that my hypnic headaches (despite preventative treatment) then trigger a migraine and/or cluster headaches. I still have ER visits 1-2 times per year when preventative, acute and rescue meds fail.

I was shocked to read 1-2 months ago that migraines have recently been shown (reputable research) to not only increase stroke risk, but also increase the risk of dementia (not including vascular dementia). Stoke and dementia both run in my family, and it was sobering to learn about the link to dementia. I read years ago that poorly controlled migraines may possibly lead to brain lesions.

About a month ago I stayed at a BNB for the first time, 3000 miles from my home; unfortunately, on day 3 I awakened with a hypnic headache and was severely ill for hours, and after calling my health provider back home, was told to get to the ER. Both the Ambulance techs started IV fluids en route to the hospital; and the ER MD on duty the ER doctor insisted on brain scans since my usual very low BP was so high it was frightening. One of the two ambulance techs was new and shouted out that he had never seen a BP that high, which also made me realize I was in trouble. Upon return to my hometown, I contacted Mayo and I am so greatful to report that they accepted me as a patient (my appointment is in January). I am paying out of pocket because my health provider, whom I shared my plans with last week, says they don't do referrals out of the "system." Thirteen years ago I went through the same battle, and became a self–pay patient of a headache specialist several hours distance from my hometown. My current local neuro will also not write an RX for any of the newer migraine preventatives, even for me to fill self-pay at a non-provider pharmacy. These meds are not on our providers formulary and according to him, "there is not enough post-marketing experience" to prove they they are effective and safe.

Well, none of this makes me angry, it just makes me sad because my husband IS angry that I have not sought an appointment to visit Mayo sooner. I am hoping at Mayo to learn more about medical and non-medical treatments, recent "theory" regarding potential causes, how to manage with pain and the ill effects of "post hypnic headache" dehydration, nausea, and electrolyte imbalance. I am also hoping to find out eventually if there is any evidence (labs, exams, scans) that suggest I have early onset dementia, evidence of prior mild stroke, and kidney or endocrine issues; and how I can prevent or stall the progression of any of these diagnoses. I will be happy to share after my visit, anything that I learn that might help others @gothope @timpowell84 @lisalucier and Colleen Young. In my early sixties, I continue to have migraines, hypnic headaches, cluster headache; and one of the neuros in our "system" believes that my hypnic headaches (despite preventative treatment) then trigger a migraine and/or cluster headaches. I still have ER visits 1-2 times per year when preventative, acute and rescue meds fail.

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Good to hear that you have an appointment and that you are feeling hopeful about it, @taterjoy. Sounds like it's been quite a journey. You might be interested in a Connect discussion on tips for meeting a new specialist as you go to Mayo Clinic to meet with a doctor there https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist.

These tips mentioned in that thread in particular may be useful for you:
-Write down your understanding of current problem and list of symptoms. Be specific.
~When did symptoms start
~How are you treating the symptoms
~Does anything make them worse or better.
~What tests have been done for current problem, date, location, results
~Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.

Have you noticed anything connected to the appearance of your hypnic headaches like the one you had at the BNB last month?

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@lisalucier

Good to hear that you have an appointment and that you are feeling hopeful about it, @taterjoy. Sounds like it's been quite a journey. You might be interested in a Connect discussion on tips for meeting a new specialist as you go to Mayo Clinic to meet with a doctor there https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist.

These tips mentioned in that thread in particular may be useful for you:
-Write down your understanding of current problem and list of symptoms. Be specific.
~When did symptoms start
~How are you treating the symptoms
~Does anything make them worse or better.
~What tests have been done for current problem, date, location, results
~Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.

Have you noticed anything connected to the appearance of your hypnic headaches like the one you had at the BNB last month?

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Thank you so much, Lisa, for the link and for isolating some particular helpful tips. I will prioritize my questions and follow these tips in planning my visit. Yes, there are many patterns that I have associated with the hypnic (and cluster) headaches over the past 14 years. For the recent hypnic headache at the BNB, it occurred after a change in time zone (3 zones) and after a string of 14 days of migraines (which HAD responded daily to oral Frova plus motrin and ondansetron), sometimes multiple daily doses). For some reason, the preventative indomethacin and Lamotrigine fail in some circumstances, including traveling across time zones. Over the years, I have tried various additional preventative methods prior to travel to try to minimize the time zone impact (with my MD/neuro approval). I hope that discussions with the specialist with Mayo will help. My travels are not for vacation, they are for parental care. Otherwise, I would avoid travel! Thanks again for the link, and suggestions–I appreciate it!

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@timpowell84 I am sorry your headaches are also excruciating and have been difficult to diagnose and treat. Has any neuro mentioned that it could be a subtype of Ice Pick Headache? Have you even been prescribed for preventative use, an inflammatory drug such as indomethacin (Indocin)? It can sometimes a prevent nocturnal inflammatory headaches. It is discouraged for long-term use to high risk of gastric ulceration, but using proton pump inhibitors simultaneously can help prevent ulcers. Nothing helped my hypnic headaches prior to diagnosis–including multiple narcotics, sedatives/hypnotics, migraine meds, etc. They did not even touch the pain. Preventative use of nightly Indocin (plus lamotrigine, coffee, and proton pump inhibitor) two hours prior to bedtime, helps prevent the severe hypnic from occurring maybe 95% of the time. I hope you can get some help–it is very depressing and difficult to navigate. Here is a link that discusses Ice Pick headaches (which can feel like stabbing of the eye) and how they are treated. https://www.healthline.com/health/headache/ice-pick-headaches#treatment

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