For the last couple of months I've been increasingly aware of a whistling noise in both ears, especially in the absence of other background noise.
Online research (always dangerous!) turns up some possible links to aspirin, which I've been on for 14 years, but probably not linked in low doses and also to interferon, which I've been on for 18 months, but not as a common side effect.
Has anyone else on here with ET experienced problems with tinnitus and identified a cause? I'll raise it at my next clinic appointment in a few weeks but I'm guessing it may just be another sign of getting older..!
Thanks
Andy
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AndyT
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I too have recently started experiencing it although it happened before I went on to Hydroxy. Mine isn't a whistling noise though, it it more of a swish in time with my pulse. The sort of noise I used to get when bending down for a long time, ie weeding, (I cant bend my knees because of arthritis). I am planning to ask my Heamo about it at my next visit as I too have seen it to be a side effect of taking aspirin which I have been taking for over 3 years.
I have PV. I get tinnitus in one ear, I've had it for the last 18 months. I have been taking aspirin since diagnosis 11 years ago so have never associated it with that. My GP sent me for a brain scan, as apparently if it's only in one ear that can mean pressure on a nerve and also a hearing test. Nothing showed on my scan and my hearing is fine, in fact I hear better with the tinnitus ear than the other one. It never occurred to me to ask if it was aspirin related. I just put up with it, some days it's worse than others.
I have suffered from tinnitus for years, long before I was diagnosed with ET. But I have noticed that taking painkillers make it worse. Unfortunately there doesn't seem to be a cure. I had a brain scan just to make sure, that it was "just" tinnitus.
When I asked about tinnitus my haematologist answered that it is quite common in the general population so would be hard to link with MPN. I do get a pulsing tinnitus that sounds like soldiers marching when it's getting near transfusion time and the high pitch whistle all the time. My partner who does not have an MPN also has tinnitus
Now I do not want to alarm anyone, and it may also be different for different people, of course.
However, before I experienced my first (& last to date) TIA, I had a bad case of Tinnitus, just in one ear. It was not as much a whistle as it was a rising crescendo of a ringing in my ear, that then culminated, or capitulated into a TIA.
My platelets were obviously at very high levels at that time... Hence, do keep an eye on your platelets at all times...
I do hope however, that my experience with this symptom and yours are not the same, in this instance.
I am taking Pegasys (for about 4 years) + daily Asperin (75 mg) My noise (Tinnitus ) has worsened to a point of "mere disgrace". I suspect the Pegasys, but have also thought of the fact that even if Asperin in low doses ought not to cause Tinnitus, we have to understand that it builds up (the acid) through the years in our bodies, just like : You can have a bottle of wine one day (ok we can't us with ET) -- but if you have a bottle of wine each day--something will surely happen.
The "bandit" in Asperin (and Pegasys too) is the acid. In my opinion. But as it is not a fashionable topic of research, I fear we won't find out
I have started a base diet and try to avoid acidic food-- BUT one has to be cautious, also here, cause too basic a diet can cause gout-- in the long run !!
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