Essential Thrombocythemia: Looking for information and support

Hi,
I was diagnosed with ET 6 weeks ago and started on HU and low dose aspirin due to my age. I’m interested in your report of migraine. I had rare incidents of visual migraines over the years prior to menopause, then an increase in frequency this past 2 years to experiencing episodes twice a week. I noted a sharp drop after being on the Hydroxyurea, having had only two brief episodes this month. Does anyone know what the relationship is to ET?

I'm not aware of migraines being a known symptom of high platelets but in the 5 years leading up to my ET diagnosis there was a steady increase in my platelet levels in my annual physical's CBC. My husband, who has had migraines since he was in his 20s (he's 75 now), recently experienced an increase in his migraines with an elevation in his platelets. His count is still well within the normal range for platelets but there does seem to be a correlation.

Thanks for that

What I also meant to say is that while my platelets were increasing, so was my incidence of migraines. After menopause I typically had one migraine a year but when my platelets started increasing, I began to have them more frequently. Prior to starting HU I was getting a migraine every 1 to 4 weeks and they magically stopped when I began taking HU in October, 2023, and my platelet levels started falling. I have not had a migraine since!

Aloha @shenriq
I am 67 and was diagnosed with E.T. in 1982.. so been on Hydroxyurea for over 30 years, and had a short treatment with Anagrelide for 7 of those years. The concern back then was the long term treatment with Hydroxyurea would convert me to leukemia so we tried Anagrelide for a while then by Hematologist learned that long term treatment with anagrelide would lead to Myleofibrosis. I have seen Murry Silverstein at Mayo Clinic in 1985 (now deceased) He told me I would live for another 20 years. There is new research now and other E.T. members that have proven that to be a wild guess, because I am still here and its been 30 years. I am still on Hydroxyurea 500 daily. I also take supplements that I think are working to keep my numbers down. Lately i have been having more fatigue than I ever have had, I am also having to start blood letting almost monthly because my current MD likes to have my HCT under 45. No explanation other than high HCT may put me closer to a stroke or Heart attack. My platelets are staying below 500K consistently on Hydroxyurea. No leukemia yet, no myelofibrosis yet, but may be converting to PV soon. Just waiting for the next shoe to drop. Hope that if you do need treatment, you will try the hydroxyurea in order to keep the numbers down. It has worked for me for a long time. Its better than having complications from High platelets.. that is no fun. Mine was over 1 Million when I was diagnosed and I was having horrible headaches and TIAs. Nobody knew what that was because nobody is studying this disease deep enough to have answers and other treatment options.