Pv and pulsatile tinnitus

[Boss1]

Anyone out there with PV experienced pulsatile tinnitus?

I'm suffering badly and all tests inconclusive. I've read that anaemia can in rare cases,

can effect such a thing! Weird I know. Just thought I'd ask as trying to find answers.

[Janeydot]

I’m in no way an expert but I too get occasional short periods of tinnitus, just a constant quiet buzz though! I have read elsewhere that it’s a symptom of PV. Not sure about the pulsatile part as I’ve not experienced that!

[Boss1 in reply to Janeydot]

Thanks Janetdot, Thanks for replying. Very annoying which ever one you have but apparently pulsatile tinnitus is very different than normal tinnitus. I've almost exhausted all doctors, Ent and neurology departments so thought I'd try here!

[Janeydot]

You’re welcome! So are the doctors not giving you any solutions or treatment suggestions? That’s frustrating. Hopefully they do something soon! I know how annoying it can be to have unexplained symptoms to deal with. Maybe someone else on the forum has experienced it and can offer some wisdom

[Boss1 in reply to Janeydot]

No. I have found a Dr in Sheffield in the UK whose specialist is between neurology and ENT which is unusual. He has been the only one interested in taking up my case. Seeing him in December. Have suffered for 2 years and am going slowly a bit crazy with it

[Bridie123]

I have ET and since commencing treatment my tinnitus is a lot worse, quite bad at times!

[jointpain]

Hi. My wife Joyce described this phenomenon of pulsatile tinnitus during the nine days she was out of hospital in July when her Portal vein thrombosis was evident but not actually diagnosed, and before she was on any hydroxy at all. This would have been when her platelets were sky high (over 1000). Could high platelets be a factor? Or possibly the hydroxy in your case? I hope you find the answer soon. Keep well.

[beetle]

Yes, anaemia definitely does it to me! When I need blood I also get a pulsating visual disturbance. Unfortunately I am noticing it at higher levels of haemoglobin than ever before. It drives me nuts! I think I will have to get into the habit of listening to music to cover it up!

[Aime]

Every sympathy it’s horrible. I get either a high pitched or whooshing sound which eventually switches itself off. My bp was high, on a second med to control it now and thought this was causing it but no it’s not. Sorry I’m no help but every sympathy Aime xx😼😼

[Boss1 in reply to Aime]

Thanks for your reply Aime.

It all helps a little, building a picture. It's like becoming your own detective!