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Paroxysmal Hemicrania
Can anyone recommend a doctor in the Los Angeles area with experience to Paroxysmal Hemicrania Heachaches? I understand they are extremely rare, however, I need assistance and need to find a doctor who can help me. I’ve had these for over 20 years and was diagnosed with Cluster Headaches, yet my doctor put me on Indomethacin which has helped me tremendously so he must have known the difference. I have had them under control with the Indo, until recently. I need to see someone.
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Hello @smbreslow, Welcome to Connect. You are not alone. I believe @pb50 has mentioned the same treatment in another discussion here and may have a suggestion or information to share - https://connect.mayoclinic.org/comment/993642/.
Not sure if you have looked into Cedars-Sinai but they have a Headache Clinic that I'm sure has specialists available - https://www.cedars-sinai.org/locations/headache-clinic-33.html. Also, there is the Los Angeles Headache Center that lists some specialists - https://losangelesheadachecenter.com/.
Have you talked to your doctor about the Indomethacin no longer helping you control the headaches?
I have paroxysmal hemicrania and have done for 20 years. It is controlled by indomethacin but I can’t take it now due to ulcers. The only time I have been in remission is when I was pregnant. Is there any research to show they are hormone related?
Welcome @jodemeacham, Sorry to hear that you are unable to use the standard treatment for paroxysmal hemicrania due to ulcers. I did find a few references that mention a hormone connection that might be helpful.
-- Facial paroxysmal hemicrania associated with the menstrual cycle:
https://journals.sagepub.com/doi/10.1177/2515816319857070
-- Paroxysmal Hemicrania:
https://pmc.ncbi.nlm.nih.gov/articles/PMC5909129/
-- How can you manage an indomethacin-responsive headache in someone who cannot take indomethacin?: https://pmc.ncbi.nlm.nih.gov/articles/PMC12052051/
You mentioned that you can't take the indomethacin due to ulcers. Are the ulcers a result of taking the indomethacin for a long period of time?