I posted the original question on this thread about ocular migraines in June of 2021 & have received 57 responses so far of folks with an MPN (mostly ET & PV) experiencing ocular migraines. Thank you all for your responses! The majority of people also have mentioned their symptoms to an eye doctor, most of whom dismissed it as being not a problem. This delay could be dangerous for some, as elevated platelets often show no other symptoms & could lead to a stroke. Yet from what I can tell with this mini survey, it is a very common symptom of ET. I’m going to talk to my ophthalmologist about letting his association know more about this issue, as it does seem to be an important symptom to confirm with a blood lab. (Thankfully, my treatment with hydroxyurea has completely eliminated the problem for me.) ~ Mary

Glad you found this useful.
Started 3 times a week 500 mg for 2 months then it was increased to 500 mg
5 days a week ( m-f ) plus low dose aspirin daily. The diagnosis was made after testing due to a blood clot last summer. At first, sometimes cold hands and feet for an hour after taking the HY. Also, a little thinning of my hair but my specialist says it will stabilize. I always take the HY in the morning after breakfast.

Am trying the mediterranean diet - a healthier diet - and keeping active.

I was diagnosed with ET 4 yrs ago and now progressed to MF. I do experience silent migraines. I take Jakafi and 81 mg aspirin. I had to stop aspirin for a procedure and the migraines were nonstop. The aspirin helps considerably to keep the migraines in check.

I have had a history of migraines since in my early 20’s. (Both my parents experienced migraines). I have also had “silent Migraines” consisting of visual disturbance (mainly my left eye) over the years- consisting of colors or jagged shapes or edges, no pain. I have CALR and was dx in December 2022, apparently my platelets have been elevated about 6 years but my dr never said a word until I saw it and started asking questions. The “silent migraines “ happen rarely , 1 maybe 2 x / yr.

Migraine is a known MPN symptom, but can occur for other reasons too. Silent migraines (AKA Acephalgic Migraine) is also a common issue. There are actually two type of migraine that affect vision. Visual migraines typically affect both eyes. Visual migraines are based in the brain. Ocular Migraines typically affect only one eye. Ocular migraines are based in the retina. Both can be microvascular symptoms of MPNs. While both type of migraine can occur in the absence of a MPN, in the presence of a MPN it is reasonable to treat it as a MPN symptom.

I have also experienced Acephalgic Visual Migraines, but as a consequence of surgery for a brain tumor in my occipital lobe. I did not experience these migraines as a result of the MPN. My migraines went beyond the scintillation and have included scotoma and palinopsia. I had one incident of full-blown hallucinatory palinopsia for 24 hours. I am quite fortunate to have identified triggers to avoid and to respond well to Ubrelvy, a CGRP inhibitor.

I hope you are consulting with a MPN Specialist rather than a regular hematologist. MPNs are rare disorders and many hematologists are not aware of the different ways they can manifest. Optimal care requires consultation with a MPN-expert doctor. Here are two lists just in case.
https://mpnforum.com/list-hem./
https://www.pvreporter.com/mpn-specialists-canc...

Here is a bit about Ocular and Visual Migraines
https://www.allaboutvision.com/conditions/ocula...

All the best