Chronic severe nocturnal hypnic headaches

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......

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.

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?

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.

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.

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.

Are you still headache free?