Hello All — I'm Struggling with Tinnitus Acquired Through Polycythemia Rubra Vera, I Think...

[Pinna]

Hi everyone, stumbled across this site while forlornly scanning the net for a miracle youtube video or similar to cure tinnitus!~ A potion, a pill, an ancient Aramaic chant....anything! In all seriousness though, it's no joke now, and as it gets louder and more persistent, I begin to see how this can really affect your mental health. It's really irritating if nothing else, and i find myself very cranky very easily.


I believe I have acquired Tinnitus through having Polycythemia Rubra Vera, a rare form of myeloproliferative neoplasm, and classed as a blood cancer. The illness itself is incurable, and treatment aimed at suppressing symptoms for as long as possible. The only trouble is the treatment does nothing for Tinnitus! This in turn leads me to believe that the T is going to do nothing but get worse as illness progresses. A glum thought as it is already bad in my inexperienced view.

I remember reading an interesting article somewhere, some years back, about some success in treatment being achieved by 'sandwiching' the troublesome frequency very tightly between the frequencies around it (i.e 7khz sandwiched by 6.99khz and 7.01khz (random numbers used), in an audible sense (played by synthesizer etc), with the 'bread' frequencies being played subtly louder than the offending frequency, thereby drowning it out.

I think the idea was that the brain learns to 'compensate' and in effect blocks out the offending frequency.....or something like that...kinda..?

OK, it was years ago! Anybody have any ideas on that?

 

[BLane]

Hi Pinna, It was rough at first, but I'm noticing that each day is getting easier for me to deal with T. I think about it less and less. I'm not sure what caused my tinnitus, I've been thinking a combination of stress and hearing loss, but oddly enough, last summer when it started I went to the doctor. I had this incredible fatigue and ringing in my ears. They did some blood tests and discovered I had a high RBC, hematocrit, etc., so they sent me off to the hematologist. They suspected I had Polycythemia Rubra Vera. After the worst bone marrow biopsy in history....4th times a charm....I didn't have the JAK2 mutation and only have mild secondary polycythemia. Anyway, I developed my T at the same time my polycythemia symptoms emerged, so you may be correct in thinking there is a correlation in triggering it, but I've been bled a few times and noticed no change to my T, possibly spiked if anything. Thanks for sharing your story, I wish you a very, VERY slow progression of your symptoms. Hang in there.