Whooshing in right ear

[Robeets_33]

Hi, just wondering if anyone has experienced a pulsing noise in ear. It started a couple of weeks ago. I have MF and take 90mg of Pegasys weekly. I have called consultant and left a message as I am quite worried, and made the mistake of Googling. Thanks.

[hunter5582]

Tinnitus is something that some with MPNs experience. Pulsate tinnitus is when the sound is in time with heartbeats or may sound like a whooshing. Any sudden change in hearing is something that should be treated as an emergent condition. It may be something minor and easily treated, but no something to ignore.

I have chronic tinnitus. Likely related to both the MPN and aural issues I also have some measured hearing loss. Anytime I have experienced pulsate tinnitus it was related to an ear infection. The symptom resolved as soon as the infection cleared. It is worth noting that ear infections can be either bacterial or fungal. Each requires different treatment so a proper diagnosis is essential. I have had much better success seeing a ENT than a GP for ear infections.

Please do let us know what you learn and how you get on.

[Robeets_33 in reply to hunter5582]

Thank you so much. I had an appointment with GP last week and he didn't seem concerned, build up of wax. I had it removed today so may just be settling down after the procedure, I googled and it said MF May be progressing which is why I've contacted consultant, although my numbers were stable at my 3 month check three weeks ago. Health anxiety doesn't make things any easier.

[Spanelmad in reply to Robeets_33]

My GP suggested it was possibly wax build up pressing on the drum .

[Robeets_33 in reply to Spanelmad]

Thank you. Could well be just that and as had wax removed may take a little time to settle, any symptoms I seem to go into panic mode.

[Spanelmad in reply to Robeets_33]

Very easy to blame everything on the mpn

[Robeets_33 in reply to Spanelmad]

So agree, or something else! I will not Google!

[MaggieSylvie in reply to Spanelmad]

Well, that's how I was diagnosed. I had an army trudging through my ears and my GP sent me to Haematology because he said it can be a sign of anaemia, which, of course, it was and still is, though my army doesn't bother me much since it has returned.

[hunter5582 in reply to Robeets_33]

It is likely something minor, but always best to check. The earwax removal may take care of it but suggest you check on a possible infection being the cause. I recently had a fungal ear infection that caused excess wax. My GP was not equipped to treat it but the ENT cleaned and treated the ear, clearing the infection in three days.

[Robeets_33 in reply to hunter5582]

Thanks so much, I didn't have any pain so didn't think an infection. Unfortunately the referral waiting lists are so long at the moment that you cannot even get a timescale of how long it will take.

[hunter5582 in reply to Robeets_33]

It can take a while to see specialists sometimes. My most recent ENT has me doing some preventative maintenance. Several ENTs have recommended the same thing. I mix white vinegar and isopropyl alcohol 50/50. Instill in each ear as prophylaxis periodically or PRN. It does seem to help. Interestingly, my GP does the same thing himself as he is a regular swimmer.

[Robeets_33 in reply to hunter5582]

Thank you for the good advice, I will definitely try this.

[Frances1903]

So sorry you have this annoying noise. Yes I too have had a lot of trouble with whooshing and also my right ear! I have ET and on hydroxycarbamide. Very worthwhile visiting your doctor and hopefully ENT referral. They were so helpful, on the whole the less stressed I am or tired the better! Exercise as able also very helpful to create a healthy mindset and not to worry too much as you also do get used to sounds in the ear.

Please do let us all know how you are.

[Robeets_33 in reply to Frances1903]

Thank you so much. I went to see GP last week, didn't think it was anything to worry about. I had the wax removed from my ears yesterday and things have improved a lot. And yes I agree when feeling stressed symptoms feel worse. I'll definitely go for a walk today. Jude

[Sherpa8]

Hello 👋 yes I too get the pulsating/ whooshing noise at random times- in one ear generally ?!

I have post ET MF . Take Rux daily & Epo injection weekly. My consultant suggested to me that the noises are a sign of anaemia.

Both medications can make you prone to anaemia apparently- but it’s a juggling act with our MPN’s isn’t it. When I get the pulsating I take my Ferrous fumate (iron) tablets daily for a while, as it’s all I can think to do! Also I increase iron rich foods. Hope that helps as an alternative view if you do not have wax etc. Obviously always check with your medical team. Good luck 🙂

[Robeets_33 in reply to Sherpa8]

Hello, thanks for reply. It has helped having the wax removed. Had to pay as GP's do not provide the service any more. It has really helped. I had my three monthly bloods done, four weeks ago and bloods stable, always a relief. Jude

[Heidi-W]

Glad you've had your ears checked. It is most likely linked to the anaemia associated with MF as I often get it after exertion and I run a bit low on the old Hb levels. Reassuring if your hearing is still ok and no associated dizziness or pain. Usually improves when your Hb levels improve.. Good luck.

[Robeets_33 in reply to Heidi-W]

Thank you. Seems a lot better since my ears were cleared. Take care.

[Cja1956]

hi, I’ve been dealing with Mpn since 2008, first, ET, and now I have MF. I’ve had that whooshing, pulsing, feeling in my ears on and off over the years. When it first happened, of course, I was very concerned, but I went to a couple doctors and they couldn’t find anything. It just went away on its own. From my own experience, I don’t think it’s anything to worry about.

[Robeets_33 in reply to Cja1956]

Hi, thanks for the reply, as you say it's quite concerning when it first happens, the same as when you first receive the diagnosis, especially when before the bone marrow biopsy they thought it was ET, but was MF.Best wishes

[Jazzyb50]

Hi, I've had PV since 2007. Started with pulsatile tinnitus, left side about 3 years ago. It is there constantly, 24 hours a day and is really frustrating. I was referred to ENT, had relevant scans to rule out anything nasty and found out I had moderate high frequency deafness in both ears. Bloods currently in range, been on Peg Interferon for 6 years.

[Robeets_33 in reply to Jazzyb50]

Yes it is so annoying, especially at night and when it is so quiet. I've been on Peg since 2021.

[Jazzyb50 in reply to Robeets_33]

Yes night time is particularly bad with no other noise to distract it. Although mine is louder than the TV now, so annoying.

[Robeets_33 in reply to Jazzyb50]

Oh no, that definitely is annoying. I subscribe to headspace and put on the sheepskins for sleeping, favourite ones are cabin downpour and deli thunderstorm, helps sleep as well. Jude

[Robeets_33 in reply to Robeets_33]

Sleep apps not sheepskins lol

[Jazzyb50]

Yes I do like the rainfall sounds, very therapeutic too. Jane x

[NY45]

hi, as our wonderful forum has wisely said it could be benign as wax to very serious and I appreciate Hunters point any hearing change is an emergency (I am also an MD with ET and a CSVT). In my case, I wish I went to a neurologist when the whooshing began. I was not yet diagnosed with an MPN, my high platelets had been overlooked. After 6 months of seeing other doctors, the MRI ordered by neuro for whooshing in left ear showed a large thrombus/venous clot in my brain on the opposite side- it was causing increased pressure and hence the audible whooshing in one ear. I was very lucky my whooshing and occasional headache were my only symptoms/consequences of what is called a central sinus venous thrombosis …now I am on Eliquis and managing my new diagnosis of ET with hydroxyurea and Pegasys though my platelets are still in 500s. Please see neurologist and get MRI just in case. If I got treatment sooner my clot could have cleared possibly.

[Robeets_33 in reply to NY45]

Thank you. Amazingly since my ears were cleared the symptoms have totally gone, thankfully. Jude

[Alexbits]

Yup. I have it in both ears. One is worse than the other. It started after three years on Peg. I'm not sure if it's related, but it's very frustrating 😒

[Robeets_33 in reply to Alexbits]

Oh gosh, that's exactly the same I've been peg for three years. Went back to GP today, checked pulse in both sides of my neck and heart, all ok will write to ENT for advice and booked an appointment for next week to discuss my anxiety, which I've never experienced before. Hope your symptoms improve. Jude

[Windy51]

Hi I have had it for a month to mine is like a beating sound I think not sure what it is it’s not all the time just more in confided places