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Mon, Mar 2 2:54pm · Chronic severe nocturnal hypnic headaches in Sleep Health

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.

Mon, Mar 2 1:54pm · Chronic severe nocturnal hypnic headaches in Sleep Health

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.

Mon, Mar 2 2:02pm · Chronic severe nocturnal hypnic headaches in Sleep Health

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.

Mon, Mar 2 1:04pm · Chronic severe nocturnal hypnic headaches in Sleep Health

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.

Mon, Jan 13 9:09am · Chronic severe nocturnal hypnic headaches in Sleep Health

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

Sun, Jan 12 7:36pm · Chronic severe nocturnal hypnic headaches in Sleep Health

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!

Dec 23, 2019 · Chronic severe nocturnal hypnic headaches in Sleep Health

@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

Dec 23, 2019 · Chronic severe nocturnal hypnic headaches in Sleep Health

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!