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@erikaerika

It's very helpful yes. Thank you for sharing. Everyone around me keeps telling me everything will be fine. But they don't quite get how I'm feeling. It's nice to be able to connect with others that truly understand. I too have migraines with visual auras. I feel my vision has changed too & I recently noticed a ringing in my right ear that has lasted over 1 month now; my hematologyst seems to think it's all unrelated to the ET.

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Replies to "It's very helpful yes. Thank you for sharing. Everyone around me keeps telling me everything will..."

Doctors dismiss what isn't "in the literature." I wish they would at least note these symptoms in rare diseases and then pass them on to researchers to look for commonalities, patterns, and causes. If nothing else, they could tell you that other patients report something similar, no one has established a direct relationship with ET, but it's not in your head. But specialists can be very narrow in their view and very sure about what they think they know.

Fwiw, I have tinnitus all the time. I assumed it was age or possibly jaw issues. I use a brown noise machine at night that helps.