Ringing and whooshing noise in ears.

This noise is driving me mad. Does anyone else get this with ET ?

Is there anything I can do apart from turn the TV up to drown it out πŸ“£

Best wishes lainy 😊

20 Replies

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  • Yes - I sometimes feel that my hearing is muffled - very odd.

  • Yes, I get that a lot but I'm sorry that I can't give you any suggestions to help.

    I've had E.T. for 12 years and have noticed an increase in the ringing in my ears and the whoshing which is worse when lying down and trying to go to sleep. I have just accepted that it yet another one of those annoying symptoms of our blood disease. The only thing I can think of is that our blood goes to every part of our bodies and if that is not right in some way - ie too thick, not enough oxygen, too many or not properly formed platelets then we are bound to get really weird symptoms that cannot be explained.

    How annoying these little things are.

  • I started experiencing ringing and whooshing in my ears following (and during) my SCT - I had MF +MDS-u.

    I initially put this down to the incessant air ventilation in my sterile room, and then down to secondary effects of the post-SCT medication and linked increase in blood pressure.

    Blood pressure is now back to normal and the ringing unfortunately continues.

    The ENT specialist said nothing was wrong with my ears and suggested listening to 'white noise' to help.

    Good luck

    Crapaud

  • Hi crapaud

    Hope you are doing well after SCT. Thanks for reply.

    I find it useful to listen to a podcast at bedtime, helps me nod off.

    Best wishes lainy

  • Thanks for reply.

    Always good to know im not alone. Yeah I guess I have to accept all the things that come with this disorder. Had ringing a while but i just thought it was an age thing. Im learning a lot of my symptoms are due to ET and not me being run down,stressed,tired,working too hard or just getting older 😩

    Best wishes lainy

  • I'm getting more persistent tinnitus these days but it's only come on in the last year or so and I've had ET for 14+ years so not sure it's connected - could just be another bonus of getting older..!

  • I get the whooshing sound and can ignore it during the day but at night time it is obvious. No ringing though.

    Before being diagnosed with ET I talked to the doctor about the noise and he simply said Tinnitus and there was nothing he could do.

    Someone on here said that it had lessened for her after she started drinking 3 litres of water a day. I upped my liquid intake - although I haven't yet got it to 3 litres a day - but so far it hasn't had an effect.

  • Hi, I'm currently drinking about 2L a day. If I drink anymore in going to turn into a fish (with ringing ears of course) πŸ˜‰

    Lainy 😚

  • It is a common symptom in ET.

    It is made worse by any thing that increases blood thickness. Or constricts blood vessels.

    Ask your gp for a referral to an audiology specialist. They will be able to help you with strategies/equipment to deal with it. Unfortunately it is unlikely you will get a cure.

    Good luck

    Jawas

  • Great advice thank you. Will ask gp for referral to audiology 😊

    Best wishes lainy

  • I have ET and also have ringing in my ears. I first noticed the noise in my ears as a mild annoyance when my platelet counts were climbing through the 600s. Now at 840 and ringing all the time, but seems worse when I have a bad day with fatigue. Sorry not to have any helpful suggestions, I'm very knew to all this. Kind thoughts.

  • Hi laing, I took have ringing and whooshing, sometimes when it changes pitch I nearly fall Over! Sorry nothing to offer to ease it. Carole

  • Yes! Mine gets progressively worse as I get. More anaemia. I read somewhere that if you hold your nose the try to blow out for it it can help. I have tried this and it works some of the time until it gets really bad near transfusion time. It is very irritating and I'm always relieved when it goes away -even temporarily. Hope you can find some relief.

  • When I was on Anagrelide for ET I suffered palpitations and had the whooshing noise in my ears, especially at night. Very uncomfortable. Since being diagnosed with MF and starting Ruxolitnib last year the whooshing noise has gone along with the palpitations. I put it down to the drug.

  • My whooshing is rare now since taking my aspirin and drinking more water. Ringing in the ears is still continuous though.

  • Hi Lainy,

    I get wooshing when i turn my head and it gets worse the more iron deficient I am. Fortunately I don't having ringing. That would drive me mad too.

    Are you iron deficient too?

    jools

  • Hi jowls, I have no idea. I've only been diagnosed a couple of months so still learning about ET and everything that goes with it. Wonder if being moody is a side effect ? Haha

    Best wishes lainy 😊

  • I am sure moodiness is involved because I took off work in 2015 for illness which I thought was depression and after being treated for 3 mos for that I was diagnosed with PV! A lot of chronic conditions can present as mood disorders at first. :)

    J.

  • Will need to let my husband read this post. It's either because I'm nightshift and don't get enough sleep or been on for 6 longdays in a row or that time of month. Now I have this to add to his long list πŸ˜‰

    Hope you are feeling better now jowls.

  • Yes, Lainey... I find my symptoms much worse when my oestrogen rises pre-ovulation and pre-menstrual... just tweaking to your "time of the month" ref.

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