just coming up to 3 years since my PV was diagnosed. For some months, I have been suffering with Tinnitus and now most days this is accompanied by “ pressure” in my ears. This is like constantly having my hands cupped over my ears, muffling speech. It’s a bit like experiencing a rapid decent in a plane. Only difference is that swallowing or pinching my nose and blowing does not clear it.
I called my specialist nurse team and they have arranged for me to have a fbc on Monday to see if my numbers have perhaps gone crazy.
Has anyone had a hearing problem diagnosed that was linked to their MPN? If so, was there anything that could be done about it. The tinnitus was bearable, just but this added problem makes life quite miserable. Thanks.
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EastYorkshireman
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Yes to tinnitus. It is a PV symptom but can occur for other reason too. The stuffy ear problem sound like something more directly related to the ears. Suggest you arrange to be seen by an ENT. I have found that GPs tend not to be very helpful with inner ear problems.
I agree with Hunter, finding a good ENT with ear specialty is important if not easy. Your Dr should order some imaging, if you have a physical sensation it's possible there is a physical source. Even some infections can cause these issues.
While my PV does not seem connected to my tinnitus, I saw three different ENTs for my other condition. One recommended Lipoflavidnoid and I have confirmed it helps. (when off it the T is clearly worse) It's avail on Amazon in the US, I assume other places also. I get by now on a very small dose.
If works best if started early and still works only for some. You should tell your Dr about any supplements you take.
Sounds really awful to go through, I hope you get some relief soon. My reason for posting I suddenly lost hearing in my right ear last summer, nurse looked and said all clear in ear canal I went back to gp a month later with no change in my hearing so was referred to eat and I'm still waiting for a appointment. Meanwhile at Christmas I had a tooth infection, opposite side to my blocked ear and within a few days my hearing came back.
I had trouble that came on suddenly and was as you describe. After lots of gp stuff I saw a specialist ear doctor. In my case there had been a bleed in the middle ear which could see through the ear drum. He'd not come across this before. It was a few months after my sct and I wondered if it was caused by my very low platelets. He was going to operate but the waiting list was so long that miraculously it cleared itself in the meantime
PV and Asprin can cause usually mild tinnitus, sounds as if yours is a bit more than that , seeing as good ENT doc is a very good idea as others have mentioned
Not PV but ET. I get white noise. Have ENT follow up next month. I did get dizzy spells till I started intercom. ? That sorted it or the vestibular exercises. Also in aspirin.
Wow! Seems that we may have covered the gamut of possible causes in the Posts above...
Obviously seeking a medical opinion seems paramount... although they too may shine on great diversity also (?)
However, I would add the following from my own experiences...
I am Post ET / MF, w/ a CALR(2) Driver mutation. As such my Platelets are ALWAYS on the higher side...
What's curious about that simple fact is my "Tinitus" seems to intensify whenever my Platelets grow higher. Hence, I treat it as an early warning natural (APP), & usually have an FBC asap just to confirm Platelets have lept up yet again. Then take Methotrexate (MTX) to bring them back under some sort of temporary unruly control.
Where are your Platelets at this point?
My GP also warned me that age, & hearing loss are usually associated w/ "Tinitus" too...
Hopefully you'll have this all resolved sooner rather than later
I was diagnosed with PV in 2015 at age 71. It's now well controlled since I went on Rux in 2022. My hearing loss has been gradual, starting as early as 2010, and I've been using hearing aids for the past four or five years. I sometimes have some tinnitus. I see this as independent of PV. I agree with the recommendation to see an ENT.
Sorry to hear about your new problem. I have recently been diagnosed with ET and given aspirin and Hydroxycarbamide. However, following a 'failed' high street hearing test few years ago I was referred to ENT, and had a more detailed test with MRI. I was diagnosed with an Acoustic Neuroma. The symptoms were similar to yours - the main ones: reduced hearing, tinnitus, dizzyness/off balance and the 'full-feeling you described.
The tumour sits between/on the hearng and acoustic nerves and thus has an impact on hearing and balance. I've recently noticed more problems with balance and blurred vision and reading your post has prompted me to contact my Haematology team, especially as the drug (Hydroxy ) is new for me and it's more than 6 weeks until my next appointment.
I am not saying you have an Acoustic Neuroma - I wouldn't dream of diagnosing anything to anyone - but it's good to get these annoying new symptoms looked into.
Wishing you all the very best in a successful resolution. 👍
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