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A myMPNteam Member asked a question 💭
Middletown, PA

Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?

January 15, 2021
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Answer Summary

Many members confirmed experiencing tinnitus (ringing in the ears) with polycythemia vera, with most describing it as constant or intermittent... Read more

Many members confirmed experiencing tinnitus (ringing in the ears) with polycythemia vera, with most describing it as constant or intermittent and noting it can vary in intensity, sometimes worsening when lying down, during weather changes, or when blood counts are elevated. Several members shared that a nurse specialist suggested the ringing may be caused by tiny blood clots in the inner ear vessels and recommended daily aspirin, while others found relief through phlebotomy, hearing aids, background noise like TV or music, and avoiding white sugar. A recurring theme was frustration that doctors often dismiss or don't recognize tinnitus as PV-related, leaving members to manage the symptom on their own by tuning it out, staying distracted, or simply learning to live with it.

A myMPNteam Member

I have et 30 years now,i have ringing in my ears for about 15-20yrs and i havebeen told it is from aspirin. I sleep with a sound machine to drown out the noise in my haed.

February 22, 2023
A myMPNteam Member

By the way....

First, I have noticed that although the tinnitus seems intermittent, it really is not. I greatly suspect that it is a problem 24/7 but that, because of ambient noise, I do not always notice it. So, for instance, when sitting in a lecture hall listening to a lecture, I don't notice it because of the all the background noise in the hall. But, when I go home, I immediately notice it because I live alone in a quiet apartment.

Second, it seems most of my symptoms secondary to polycythemia are due to thick blood, poor circulation, and sometimes tiny blood clots. When they did a scan of my chest and pelvis, they found lots of tiny blot clots in the pelvis region. My toes don't always get enough oxygen because my thick blood cannot move easily through small capillaries. Of course, we have small capillaries all throughout our bodies, and I imagine tiny blood clots all over my body. And I read somewhere that some of us have tinnitus due to our thick blood and tiny clots close to the nerves that serve our ears.

January 24, 2023
A myMPNteam Member

Hello, I haven't had any digestive problems. I take just Hydroxyurea 500mg once a day. I've was just diagnosed in May 2020. I had a friend with PV for a lot of years & her spleen eventually enlarged & it interfered how much she could eat & her stomach. I registered for one of the on-line webinars & asked the question about ringing in the ears, & the person doing the webinar said it's from small blood clots in the inner ear--I assume he knew what was talking about.

June 15, 2021
A myMPNteam Member

Constant for me…

August 24, 2023
A myMPNteam Member

Yes, I have had and do have ringing in my ears; however, the ringing predates the diagnosis of PV. I try to ignore as much as possible.

April 9, 2023

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