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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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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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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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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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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@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 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 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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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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