Tinnitus

[Strumin210]

My diagnosis is at the moment, ET,Early Primary Mylofibrosis. Over the past 6 months I have developed what is called pulsitile tinnitus. I can hear my heart beating in my left ear. Had a ultrasound done of my carotid arteries to which they say above 70 percent blocked 🚫 I the right ,not so bad in the left. My research shows that high platelet count could have been what caused this. They can't seem to get my platelets down below 670,000. Has anyone else experienced this dealing with an MPN??????

[RoundTheWorld]

Hi Strumin. I have had a couple of spells of pulsatile tinnitus (before diagnosis - was such a weird thing to have and I kept asking my husband what the whooshing noise was until I realised it was in time with my heart). My own carotid artery scan was clear so, for me at least, it's independent of a narrowing. It has cleared up, so could just be coincidental and linked to a cold or something but thought I'd reply as you'd asked! Fingers crossed that your own reduces or disappears.

[Strumin210 in reply to RoundTheWorld]

Thanks. At the moment it seems worse. None of this happened until my platelets shot up to a million. Hope it goes away soon.

[Ettu]

Hi Strumin210

I am male, 62, ET on Hydroxycarbamide and aspirin

I have the same condition (PT) , worse in my left ear , and currently await results of a ct scan to rule out anything too sinister. Apparently PT can , very rarely, be caused by cancer in the ear, although my ENT consultant says he has only seen that once in over 35 years.

His preliminary view is that it might be the medication rather than the ET itself.

PT , it seems, can often occur with no obvious reasons but it seems too coincidental that some on here with Et also have it.

What medication are you on for Et?

FWIW I find the PT irritating but otherwise neither concerning nor reductive of my day to day life.

[Marchhare7]

Hi Strumin, this is the strangest thing to experience. I developed this during my MF alongside labrynthytis. The two weren't connected to each other, just both caused by MF. I did have extensive tests to check for anything sinister (all clear). My consultant said this type of tinnitus is due to anaemia which was correct for me, all my level were rock bottom. Mine was particularly bad at night kept me awake for hours. I do still have tinnitus now im post sct, but not this type thats resolved now

[Poppy6060]

Hi Strumin I have had that noise a few times in the past and it horrible I do find I get it more when I am stressed I have had all the tests and all clear I now try not worry about it if I can and it passes hope yours does to

Poppy

[Strumin210 in reply to Poppy6060]

Thanks Poppy . I had a ultrasound done on my carotid arteries and unfortunately it shows the right one blocked at greater than 70 percent and the left one around 70 percent. I believe that is why I hear my heart ❤️ beating in my left ear. None of this started happening till I developed this platelet issue. I went back to taking the hydroxurea ( did not want to) as this is a protocol if they don't do surgery.