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Chronic severe nocturnal hypnic headaches
Sleep Health | Last Active: Oct 4 1:13am | Replies (240)Comment receiving replies
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.
Replies to "I have two other rare conditions that at least have facebook groups where the info has..."
I use caffeine tablet under tongue. Usually helps
I recommend you try cold brew coffee, which you can purchase already made or buy a concentrate online. It’s less acidic, and therefore less hard on your stomach, than hot brewed and it can be served hot or cold.
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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.