Chronic severe nocturnal hypnic headaches

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If it's not against the rules I will put my email on my next post

If it's not against the rules I will put my email on my next post

I am so sorry Gussie to hear what you are going through. It's painful, debilitating, depressing and can feel so hopeless at times. I felt totally defeated for years, and was so disgusted with the local SF/CA "headache specialist) after I told him oral meds can't help when I'm vomitting continually (and diarreah expels suppositories). He RXed another oral med. Thats when i quit seeing him.

Pharmacists at Kaiser have helped me tremendously! They wrote to my physician and asked if I might be a candidate for a chemotherapy anti-nausea "patch" which I used for years. My primary care MD is very compassionate, but my local neuro refuses to RX the meds my Mayo MD has prescibed. So my amazing Mayo MD still calls in orders for one RXs to a pharmacy in my hometown.

The constant servere pain, continual throwing up, and resultant nauea and exhaustion (and lack of sleep) can feel so defeating. I hope and pray you won't give up. You might be able to consult with a Mayo MD via phone if you are not able to travel. I don't know, but the admins or moderators on this site might know. Dr. Wheally at Mayo Rochester (neurologist, headache specialist) has changed the tractory of my days, vastly improved my health and my sense of well-being by caringly sorting through and trying ALL options. If you can't tolerate caffiene or Indomethacin, there are still other drug and non-drug options to try like a neural brain stimulator! I also suspect in the future that sleep therapists will find a pattern of sleep that might avoid triggering our issue. If we set our clocks to wake us up (and reset the alarm) to avoid going into REM stage sleep, I believe that the brain-wave "triggered" inflammatory response might be avoided. Just a hunch, but I don't know if any studies are being done. I plan to ask Dr. Whealy at Mayo on my next visit.

Thank you so much for posting! I have met very few people who experience these noctural "inlfammatory" severe headaches with horrific GI involvement. I don't know how to send a private message on this site, but if a monitor or mentor can help, I will send you my phone number in case you want to talk about it. I pray your situation improves and that your quality of life can be vastly improved. Sending hugs and hopes for better days and nights ahead.

I have two other rare conditions that at least have facebook groups where the info has been so valuable to me. I am so glad to have found this group. I also started with daily migraine in my early twenties. Mostly related to my period. I come from a long line of Migrainers. My mother, grandmother, and it seems I have past it on to one grandson. After menopause the daytime migraines got better. Then in 2006 at age 65 I started waking up during the night with horrible headaches. The first few years I ended up in the ER about ten times for the migraine cocktail. The only thing that broke the cycle of pain was dilaudad the drug from hell. In all the years of having regular migraine I had never thrown up from the pain but with this I did. I am now 80 and still have what has been diagnosed as hypnic headaches for all these years. If you look at me I don't look my age and people are shocked when they find out how old I am. I live in the San Francisco so I had gone to the same headache specialist that taterjoy went to. I started going to him in the 80s when I had regular migraines. Although he did diagnose my hypnic headaches he changed his practice to just studying different drugs for the pharmas. So he spends 5 minutes with you then just hands out drugs. I have to say that even my young neurologist is stumped with this situation. I have tried everything over the years also. The latest suggestion is that I should do a sleep study which sounds like torture. As far as I know about sleep studies it just tells whether or not you have sleep apnea. If that were the case then we all have sleep apnea. Over the years I got to the point where I woke with the pain took 50 mg of Imitrex and could go back to sleep, but in the last year it has gotten much worse and that doesn't work anymore. I know that caffeine does work if I feel a little headache coming on in the daytime but I do have GI issues so I really can't drink a lot of coffee. I recently tried the caffeine pills but the ones I bought also had L-Theanine in them and caused a lot of GI problems. I just didn't think I would go into my twilight years with this.

Have tried some with no help and liver and kidney give problems if on most meds. Seen several Neuro and a headache specialist. Since unable to take meds -I am written off as noncompliance.
Glad to hear that you have had relief

Have tried some with no help and liver and kidney give problems if on most meds. Seen several Neuro and a headache specialist. Since unable to take meds -I am written off as noncompliance.
Glad to hear that you have had relief

I have two other rare conditions that at least have facebook groups where the info has been so valuable to me. I am so glad to have found this group. I also started with daily migraine in my early twenties. Mostly related to my period. I come from a long line of Migrainers. My mother, grandmother, and it seems I have past it on to one grandson. After menopause the daytime migraines got better. Then in 2006 at age 65 I started waking up during the night with horrible headaches. The first few years I ended up in the ER about ten times for the migraine cocktail. The only thing that broke the cycle of pain was dilaudad the drug from hell. In all the years of having regular migraine I had never thrown up from the pain but with this I did. I am now 80 and still have what has been diagnosed as hypnic headaches for all these years. If you look at me I don't look my age and people are shocked when they find out how old I am. I live in the San Francisco so I had gone to the same headache specialist that taterjoy went to. I started going to him in the 80s when I had regular migraines. Although he did diagnose my hypnic headaches he changed his practice to just studying different drugs for the pharmas. So he spends 5 minutes with you then just hands out drugs. I have to say that even my young neurologist is stumped with this situation. I have tried everything over the years also. The latest suggestion is that I should do a sleep study which sounds like torture. As far as I know about sleep studies it just tells whether or not you have sleep apnea. If that were the case then we all have sleep apnea. Over the years I got to the point where I woke with the pain took 50 mg of Imitrex and could go back to sleep, but in the last year it has gotten much worse and that doesn't work anymore. I know that caffeine does work if I feel a little headache coming on in the daytime but I do have GI issues so I really can't drink a lot of coffee. I recently tried the caffeine pills but the ones I bought also had L-Theanine in them and caused a lot of GI problems. I just didn't think I would go into my twilight years with this.

Hi Cheryl, and welcome! I so appreciate your post, and am so happy for you that caffeine coffee can prevent your nightly headaches, which do sound like Hypnic headaches. I am sorry it took a while to find the correct diagnosis. It is such a rare headache, that the specialist I was seeing in California who has conducted primary research on headaches for decades, did not for a long time "recognize" my symptoms though I was desperately traveling to see him every month for many months, for relief. When I was finally diagnosed, there were only about 87 cases worldwide reported in the medical literature since the late 1980s, when they were first reported by a Dr. Raskin. I had been seening (for years) two other nationally prominent headache specialist neurologists in other states (not at Mayo--I lived too far away) prior to seeing the headache specialist who finally diagnosed it. It is/was such a rare headache, that many at that time had never seen a patient with it. It might still be rare, and possibly most general neurologists across the USA have never diagnosed it treated patients who have hypnic headache.

Topimirate did not help me, either. Unfortunately, neither did many cups of coffee or caffeine tablets prior to bedtime. Like you, I also had serious Migraine headaches (under-treated) for many years and I have read in the literature that some other people with Hypnic headaches share that history. A few other possible risk factors that were mentioned (but not proven) included a history of employment with "shift work" (circadian rhythm issues) and frequent travel through time zones, or moving across time zones. I shared those "possible" risk factors but not these others that were discussed as potential risk factors such as history of long-term smoking tobacco, COPD, and/or sleep apnea. I pray that this disorder is not a progressive one and that your headaches can always be prevented by drinking two cups of strong coffee before bedtime; or that these headaches can/will someday resolve on their own. Thank you so so very much for posting, Cheryl!

Welcome back @taterjoy, It is great to see you back sharing your experience and especially good to hear you've found some answers. Thanks for giving this discussion some new life.

It sounds like the telephone appointments have made life a little easier for you. Have you done any video appointments with Mayo?