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About myMPNteam
Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Ocular Migraines

Ocular Migraines

I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more

A myMPNteam Member said:

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.

posted about 1 year ago
A myMPNteam Member said:

Yes, virtual visits are how I've always seen my MPN specialist as he is 2 hours away. He co-treats me with my local onc/hem & it works great. Occular migraines are a symptom of ET - as a Google search shows, as are other symptoms you may be experiencing: dizziness or light headdress; tingling or burning in hands &/or feet, etc.

posted 9 months ago
A myMPNteam Member said:

Hi, my age, diagnosis, and experience with ocular migraines related to ET/JAK 2 are similar to yours. I was reassured by a visit to an eye specialist who explained what these are and told me not to be concerned but to keep a record of when they occurred and how long they lasted. He said if they increased substantially to make another appointment. Thankfully, they have not. I hope you are doing well also. Blessings, Jan

posted 8 months ago
A myMPNteam Member said:

Just read all the messages about occular migraines. Yes, I had them for years - maybe 2x a year. More frequently for a few months leading up to an MPN diagnosis in July 2020. Once I was on aspirin and HYDROXY - they stopped. I did not realize they were a symptom of an MPN. That was never menitoned...

posted 9 months ago
A myMPNteam Member said:

Yes, I also have ocular migraines for years. My ET was found the same way, an elevated platelet count in annual physical bloodwork. I wa 50 years old when diagnosed & also JAK2+. Google ET symptoms as you may be surprised as to how many you may have but didn't know it was ET related - I know I was. Good luck in your treatment. Please get established a MPN specialist as the cancer we have is not common & getting treated by a specialist that specializes in our cancer can make a big difference your quality of life & even possible remission if caught early & put on Pegasys interferon. That is the only medication that lowered my platelets. MPN specialist in your area can be found here: https://www.pvreporter.com/mpn-specialists-canc... Good luck!

posted 12 months ago
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