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.

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