Heartbeat in ears

[Llinos]

Hi all, just a odd question. I have heard my heartbeat in my ears since my WG diagnosis 15yrs ago. Its noisy at times, especially at night if I curl up my body or bend any of my joints. Sometimes I use it as a relaxation technique to relax or to try to get to sleep ( back in the womb??) Sometimes its a loud whooshing noise, other times just a little bump in the background.

Anyway last Thursday night I woke up and couldn't understand why it was so quiet, then I realised this noise has gone! I'm not concerned in fact I keep waking now to see if it has come back!!

Just had my 3rd Rituximab so don't know if that's got any thing to do with it.

Anyone out there had similar experience?

Llinos

[JemimaSunflower]

Hi there, I have the same problem! Annoying thumping heartbeat in my left ear. Hear it mainly at night, and sometimes during the night - and now. Almost a 'screechy' sound or just a quieter 'thumping'.

I was diagnosed with WG early 2012 and finished my 2 year course of Rituximab in June. Hadn't associated it with Rituximab - thought it could be my blood pressure tablets(?). Have spoken to my GP, but I don't think she's sure.

Lets hope someone knows ...

[Hidden]

Hi Llinos,

I suspect you have pulsatile tinnitus which sometimes goes hand in hand with WG and other " vascular " disorders.

There is a very good chance that the Rituximab has " cured " it. I know that Dr's say " association isn't causation ", I suppose you will have to wait and see if it comes back.

Unfortunately my tinnitus is just the plain old loud buzzing noise variety!

[Hidden in reply to Hidden]

Would that include Rheumatoid Vasculitis Keyes? I have had sinus problems and problems with hearing because of 'internal noises' like heart beat and breathing since my diagnosis in September 2014. Rheumy pooh poohs it though.

[Hidden in reply to Hidden]

Mine sounds like the hum of a washing machine drum going round in my ears although i do not have it all the time.Thank god.Ive only had it since i started with GPA

[poppet2]

Hi Llinos,

I had very similar problems to you - terrible pulsating in my ears along with mega hearing loss, at its worst just before diagnosis of WG and for some time afterwards. Apparently it is a type of tinnitus, along with really bad whooshing noises! The cure for me came after grommet insertion in both ears - what a relief to be able to feel quite normal again. I have had 7/8 months completely free of these symptoms but have noticed some tinnitus type whooshing noises returning again along with some reduced hearing but luckily just in one ear at the moment.

I have completed 12 months treatment of cyclophosphomide and am now taking methotrexate along wth 10mg of pred a day, and am truly hoping my ear problems will not return as before, but am now wondering if it may be inevitable, if the WG when very active has done some permanent damage, so that when the grommets work their way out my symptoms may return. I am hoping not. I am wondering if anyone else has experience of this?

Anyway Llinos, good luck with your treatment and hope you are rid of your symptoms permaently.

[Debbieguild in reply to poppet2]

Hi I had grommets fitted yesterday and my ears are now severely blocked with immense pressure. Did you experience similar?

[Llinos in reply to Debbieguild]

Hi Debbie, I too had gromets fitted but I think ENT did that in relation to my hearing loss! Has your hearing been affected?

[Debbieguild in reply to Llinos]

Yes my hearing is worse since having the grommets. Feel very blocked. I want them removed. Did your ears get better?

[poppet2 in reply to Debbieguild]

Hi Debbie,

I had grommets inserted to alleviate the problems you now seem to be getting along with quite severe hearing loss. My hearing improved immediately although the other symptoms of blockage and pressure took a little longer - maybe a week or so. My tinnitus also stopped immediately. Hope yours will improve soon. Did you have hearing loss before, and has this improved?

[Debbieguild in reply to poppet2]

Hi, my hearing wasn't too bad before just felt blocked and wanted my ears to pop to clear. Had horrendous night last night, itchy right ear and still blocked and pressured 😥 thank you for replying

[poppet2 in reply to Debbieguild]

Hi Debbie. Hope you will get some relief soon - I think mine took a week or two to clear - I remember having popping noises and some itching and then the pressure just seemed to return to normal. I just felt so relieved that I could hear normally again. Unfortunately 9 months on one of the grommets has come out and I am beginning to struggle once again, but I do have an ENT appointment tomorrow so I am hopeful that they may consider doing it again. Good luck.

[Debbieguild in reply to poppet2]

Hi

Sorry you are having same problem. It's soul destroying. My right ear is extremely itchy today. I have an appointment tomorrow morning with ent, luckily I work in operating theatre so know when things don't sound right. Deafness /stuffiness still the same with the pressure. Dread the nights as its a world of silence and pressure. Let me know how you get on tomorrow.

[poppet2 in reply to Debbieguild]

Hi. I saw ENT doc last Friday and they have agreed to do another grommet so hopefully it will be done early in the new year. How are you doing now. Any improvement?

Unfortunately since my visit there I have been suffering quite badly with sinus problems, very stuffy nose especially at night, headaches and face pain,andnot sure whether this is due to a virus or because they have advised me to use a sinus rinse twice daily to try and stop the nose bleeds along with antibiotic cream in my nose. It seems to go on and on doesn't it.

Best wishes. Hope we'll both be feeling better by xmas!

[Debbieguild in reply to poppet2]

Hi there, my right ear still discharging, and tinnitus buzzing away.😓. Ears both feel stuffed and blocked. I saw the ent Doctor who gave me antibiotic drops. Night times not good, a week tomorrow since my grommets went in, which I feel have made things much worse. Sounds like you're having a rough time, hopefully though your grommet will help you again.