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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 4 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 about 2 months ago
A myMPNteam Member said:

Everyone...please make sure you know the signs of a TIA or stroke. It can be very suble. I just didn't feel "right". Then my right arm felt different...like weightless...and I couldn't control my wrist very well. I told my husband to get me to the ER. They were very nice. Said they wished more people would pay attention to their body signals. I've been on permanent Xarelto since the MPN diagnosis because of my Jak2, and 2 MTHFR genes. (Yes you know what I really call that gene.) So the clot came and went, and all was well. They just like you to be at a hospital in case you start getting multiple Tia.

posted about 2 months ago
A myMPNteam Member said:

I see a MPN specialist at MD Anderson. He confirmed my “ocular migraines” were from the MPN, I have PV and ET. I had them frequently and had multiple in one week before a TIA. Listen to your body. I haven’t had a single episode since starting my baby aspirin and hydroxyurea

posted about 2 months ago
A myMPNteam Member said:

I started ocular migraines several weeks before they discovered a thrombosis in my brain and diagnosed my MPN. Later on I would still get them once a month, or once every other month. Then in May, I had 4 in one week, just before I had a TIA and ended up in the emergency room. I even had one in the emergency room while talking to the doctor. But good luck trying to convince any doctor that they are MPN related, even though there are dozens of us on this website that are experiencing them. They all say they're from stress. I wonder what doctors would do if they couldn't use stress as a diagnosis anymore! Find a real MPN Specialist that won't make you feel like you're imagining this stuff. I'm in the middle of changing hematologists right now. 😁

posted about 2 months ago
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