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.

Liked by teach

@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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@taterjoy I am sorry to hear of your headache episodes. I was a migraine sufferer prior to menopause but never the other types. Back then there were not effective medications like there are now. My daughter gets migraines and the medications do help, sometimes though they have to be used more than one time. It is quite frightening to learn that migraines can cause stroke and dementia. I keep hearing more and more things about myself that make me prone to Alzheimer's, and now this.
I am glad you have an appointment at Mayo. I always feel that when you have any difficult condition it is best to go to a top-rated medical facility. I hope they are able to give you some help.
JK

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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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Are you still headache free?

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I have had night time headaches for 15+ years and received a diagnosis two years ago. Since then, I have tried caffeine, Indomethacin, and Topiramate. The Topiramate worked well at first but became less and less effective with time. Additionally, it caused severe digestive problems. Now, for the good news: About four months ago, my doctor prescribed Estrogen and Progesterone for an unrelated issue. After taking these for a few days, my headaches stopped completely. I stopped the Topiramate and still had no headaches. I couldn't believe it! I quit the hormones and took the Topiramate instead and the headaches returned with a vengeance. Still not convinced, I repeated this experiment three times–same results. I have been taking the hormones for three months now and have not been awakened with a headache in that time. I am very excited!! My doctor said that these hormones are "natural" and do not have the side effects of the synthetic ones. The arrive by mail from a company called Med Quest after my doctor calls in my prescription. I sleep like a baby now and awaken feeling refreshed.

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@missgrace

I have had night time headaches for 15+ years and received a diagnosis two years ago. Since then, I have tried caffeine, Indomethacin, and Topiramate. The Topiramate worked well at first but became less and less effective with time. Additionally, it caused severe digestive problems. Now, for the good news: About four months ago, my doctor prescribed Estrogen and Progesterone for an unrelated issue. After taking these for a few days, my headaches stopped completely. I stopped the Topiramate and still had no headaches. I couldn't believe it! I quit the hormones and took the Topiramate instead and the headaches returned with a vengeance. Still not convinced, I repeated this experiment three times–same results. I have been taking the hormones for three months now and have not been awakened with a headache in that time. I am very excited!! My doctor said that these hormones are "natural" and do not have the side effects of the synthetic ones. The arrive by mail from a company called Med Quest after my doctor calls in my prescription. I sleep like a baby now and awaken feeling refreshed.

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Wow, that's amazing, @missgrace And you did your own retest to confirm! I have that in my notes to mention at Mayo–thank you so much for sharing. Thrilled to hear you are headache free, and are sleeping so well!

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@missgrace

Are you still headache free?

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Yes. I have had a couple over the past year but no where near as severe. Since the Prednisone, over a year ago the headaches have basically stopped. Thankfully! I also resumed hormone therapy but that was a month or more before they stopped so I don’t think that was my trigger, although it could be related.

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@shaylala

Yes. I have had a couple over the past year but no where near as severe. Since the Prednisone, over a year ago the headaches have basically stopped. Thankfully! I also resumed hormone therapy but that was a month or more before they stopped so I don’t think that was my trigger, although it could be related.

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That's great news, @shaylala and brings hope to others! Hope you will never have to deal with the severe hypnics again.

Liked by Lisa Lucier

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@missgrace

I have had night time headaches for 15+ years and received a diagnosis two years ago. Since then, I have tried caffeine, Indomethacin, and Topiramate. The Topiramate worked well at first but became less and less effective with time. Additionally, it caused severe digestive problems. Now, for the good news: About four months ago, my doctor prescribed Estrogen and Progesterone for an unrelated issue. After taking these for a few days, my headaches stopped completely. I stopped the Topiramate and still had no headaches. I couldn't believe it! I quit the hormones and took the Topiramate instead and the headaches returned with a vengeance. Still not convinced, I repeated this experiment three times–same results. I have been taking the hormones for three months now and have not been awakened with a headache in that time. I am very excited!! My doctor said that these hormones are "natural" and do not have the side effects of the synthetic ones. The arrive by mail from a company called Med Quest after my doctor calls in my prescription. I sleep like a baby now and awaken feeling refreshed.

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It's so good you finally found an answer – finding the answer is the hardest part sometimes : )

Liked by missgrace

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@contentandwell

@lisalucier and all, as it seems as if the same medications are used for hypnic headaches as for migraine, I asked “my expert” (daughter) about her medications.
She gets the most help from naratriptan, which is a triptan as is imitrix in type (both triptans) but they are different from each other. Imitrix knocks her out.
Barometric pressure changes are a common trigger and she has two apps that alert her to those changes. Sometimes a headache can be stopped before it really takes hold.
When I was much younger and suffered from migraines the best they could do was prescribing an ergot medication to constrict your blood vessels. That made me so sick it was worse than the headache.
I wish she had time to participate in some of these forums but she is pretty out-straight with her job.
JK

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HI JK! For me, the migraine acute meds and preventatives did not help wth severe hypnic headaches. Narcotics/sedatives did not help either, even in combinations. I did try the other recommended meds for Hypnic headaches with the exception of verapamil since I have low/normal blood pressure. I take a preventative combinaton nightly, of Indomethacin SR, Lamotrigine, and coffee/caffeine. It works very well about 85% of the time, not at all 2% of the time, and just "okay" the remaining 13% of the time (estimates!). I wonder if your daughters nocturnal headaches are migraines rather than hypnic headaches? My Migraines usually respond to Maxalt well, but I take brand Frovatriptan that takes longer to kick in, but the half life is longer (and pain relief lasts longer). I hope your daughter is doing well. I am now taking a new preventative called Emgality which is working wonders for the Migraines (thanks to my "new" MD, a Neurologist and Headache Specialist at Mayo named Dr. Whealy. I will post about it in a new post.

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@taterjoy

HI JK! For me, the migraine acute meds and preventatives did not help wth severe hypnic headaches. Narcotics/sedatives did not help either, even in combinations. I did try the other recommended meds for Hypnic headaches with the exception of verapamil since I have low/normal blood pressure. I take a preventative combinaton nightly, of Indomethacin SR, Lamotrigine, and coffee/caffeine. It works very well about 85% of the time, not at all 2% of the time, and just "okay" the remaining 13% of the time (estimates!). I wonder if your daughters nocturnal headaches are migraines rather than hypnic headaches? My Migraines usually respond to Maxalt well, but I take brand Frovatriptan that takes longer to kick in, but the half life is longer (and pain relief lasts longer). I hope your daughter is doing well. I am now taking a new preventative called Emgality which is working wonders for the Migraines (thanks to my "new" MD, a Neurologist and Headache Specialist at Mayo named Dr. Whealy. I will post about it in a new post.

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@taterjoy Sorry if I was unclear, my daughter's headaches are migraine and they are not just nocturnal. I will mention your meds to her. I remember seeing some info about a new med a while back and asked her about that one. She had tried it but it had not helped.
JK

Liked by Lisa Lucier

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Update! I had my first appointment at Mayo Clinic mid-January, and was so so fortunate to be under Dr. Whealy's care (Neurologist and Headache Specialist cum Laude). He is incredibly thorough, patient, dedicated, kind and brilliant. I cannot tell you how amazing it was to find someone who "gets" it, and quickly grasped the dilemma I am in with regard to "Hynic Headaches" breakthrough (when preventatives do not work). We reviewed my drug history (am now 63yo) dating back to having headaches in the crib. We also discussed my Migraines and treatments.

He immediately acknowledged that I am being under-treated for migraines (my insurer has none of the newest "biological" Preventatives on formulary; and refused to give me an RX to fill out of service with my own $$.); so for my migraines, he prescribed Emgality, which is one of the newest biological (an injection taken once per month). I am into month two, and am feeling better than I have felt in over 20 years. After starting it, I was headache FREE within a few days. I realized I have not been headache FREE for any day, for many many years. My head feels so light! It's amazing! I have about 6-7 migraines per month (as opposed to every day) and they respond to Frova and occasionally to Tylenol alone. They do not "escalate" as quickly as they used to, and I have not had my usual accompanying horrendous GI side effects even ONCE since starting Emgality. I believe my vision is improved, color vision is more accurate, and my dry eye syndrome is less severe as I am not squinting my eyes 24/7 to cut out light and movement (both of which made me nauseated, and caused headaches). I am DREAMING at night again, and have actually experienced goosebumps for the first time in decades. The curtains in my house are all black-out curtains which have been mostly closed for decades. They are now open during the day! The world looks amazing.

Because I was taking 3 NSAIDS for many years, [1) Motrin with Frova (to expedite onset of pain relief) and 2) Indomethicin SR nightly and 3) injections of Torodal as needed for breakthrough Hypnic headaches, along with preventatives for gastric ulcers] Dr. Whealy's goal is to get me off NSAIDs, as I have had ulcers, and because chronic NSAIDS increase risk of kidney damage. I have stopped taking Motrin altogether. The bad news is about the Hypnic Headaches: 1) there are few drugs that prevent it, and those other than Indomethacin, the other options either did not help me, or are contraindicated. Dr. Whealy educated me on the new definition of Hypnic headache in the revised International Diagnotic Manual for headaches. The criteria have changed, so my headaches no longer "fit" into the diagnosis. They are acute, severe, debilitating inflammatory headaches, possibly clusters that occur four times per night, if don't take preventative Indomethacin (plus caffeine plus Lamotragine). We are hoping that being on Emgality–and having fewer migraines–may alter the occurrence or severity of the hypnic headaches. He also prescribed Cefaly, a neuro stimulator for migraines (acute and prevention) which I have put off because I wanted to first assess Emgality (which for me, has been life-changing). THANK YOU to Dr. Whealy and Mayo Clinic Rochester! I have a follow-up visit with Dr. Whealy in April. I highly recommend him to anyone who has headache issues beyond those that can be handled by your local Neurologist/Headache Specialist.

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@contentandwell

@taterjoy Sorry if I was unclear, my daughter's headaches are migraine and they are not just nocturnal. I will mention your meds to her. I remember seeing some info about a new med a while back and asked her about that one. She had tried it but it had not helped.
JK

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No worries JK @contentandwell ! I was so glad you replied with helpful info. Thank YOU for being a Volunteer Mentor! I hope that at least one of the newest biological CGRP preventative drugs will help your daughter, there are several now to choose from. And a new drug was JUST approved for acute treatment of Migraines-in-process: Ubrelvy.

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@taterjoy

No worries JK @contentandwell ! I was so glad you replied with helpful info. Thank YOU for being a Volunteer Mentor! I hope that at least one of the newest biological CGRP preventative drugs will help your daughter, there are several now to choose from. And a new drug was JUST approved for acute treatment of Migraines-in-process: Ubrelvy.

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@taterjoy Thanks for the info, I will pass it on to my daughter. When she is miserable she often calls me because since I went through it too she knows I will understand. I was ecstatic when I went through menopause (late) and finally my migraines were history.
JK

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@contentandwell

@taterjoy Thanks for the info, I will pass it on to my daughter. When she is miserable she often calls me because since I went through it too she knows I will understand. I was ecstatic when I went through menopause (late) and finally my migraines were history.
JK

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So glad your own migraines are a "thing of the past." Many of us were not so lucky after menopause. I hope yours daughters can be well controlled.

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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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Hi @timpowell84 – wondering how you are doing and how the eyeball pain and sleep are going?

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Have had he for 15 yrs and severity and frequency increasing. Unable to use prescription meds. Using caffeine at onset, Pemf, Reflectology, massage and now trying chiropathic.

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