ringing in the ear?: hi do any of you fellow lupus... - LUPUS UK

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ringing in the ear?

rockchic profile image
16 Replies

hi do any of you fellow lupus or sjogrens sufferers suffer from tinnitus, especially in one ear, its driving me batty at the moment.

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rockchic
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16 Replies
sunshine16 profile image
sunshine16

Hi,

yes i do! only in my right ear it comes and go..i too have SLE and Sjogrens, not sure what causes it,

take care

tiredmum profile image
tiredmum

oh yes,

its awful, comes and goes, feels like i just want to shake my head to stop it. i have no idea how to help it or what causes it.

:0)

Tamsin profile image
Tamsin

Yes I do- in both ears. Had it for years but I don't no what caused it- would live to know how to get rid of it! X

river profile image
river

I have unpleasant throbbing from time to time, approx every two seconds which cuts out sound at each throb momentarily. Feels like pressure one gets in a rail tunnel. Any comments please x

Jaxqueline profile image
Jaxqueline

I've had ringing in the ears for about six months now, according to my doc you cant really do anything about it. I have SLE.

IMillar profile image
IMillar

Hi, I have lupus and I suspect sjogrens as well. I have had noises, ringing, whistling in my left ear for a few years now. I had them tested and the audiologist said there was slight hearing loss at the higher end of the spectrum so that doesn't really bother me. He also said I had dry ears and didn't produce much ear wax. There was no obvious reason why I have tinnitus and he had no suggestions. It's worse when I am tired and I am going to try acupuncture. Will let you know if any benefit.

jamg3916 profile image
jamg3916

I have had problems with my ears for years, many before Lupus diagnosis...mostly drs wanted to blame it on previously being a smoker. But I haven't smoked for over 10 years and its just got progressively worse...have had tests and was sent for an MRI which so freaked me out I had a panic attack. I have been told I have 'menieres type' symptoms, a 'visual predisposition' and BBP (I think thats it) but the more I read about Lupus and its various effects the more I am convinced it is because of that. The tinnitus comes and goes and is markedly worse when I am feeling low or stressed, my balance is dodgy, and I think it is all an off shoot of Lupus...and seems little anyone can do! I use the tv and radio as background noise to mask the tinnitus, I listen to the radio as I am going to sleep and if I wake in the night and can't get back to sleep I put the radio on. Small consolation but I have learned to live with it. Good luck

Looby profile image
Looby

Yes - in my right ear mainly. Comes and goes, and it is worst in the mornings (after waking) which might indicate it is something to do with blood pressure....? Asking other people - it seems to be fairly common, and may even be due to radio waves passing through our bodies (in some cases, definitely not ALL).

I did have a very bad period of labyrinthitis about 10 years ago and have experienced vertigo on and off since then - whether there is a link to this and/or Lupus - I do not know.

I do wish some clever people would make this a research project, because when it happens, it is most irritating, if not especially painful........

pirate-yaker profile image
pirate-yaker

Yup - left ear I'ts horrific. I had a scan to rule out a tumor - doc thought Meloxicam was one of the contributers but I haven't taken much over the past 4 years. Nothing they can do but suggested having a radio at a low volume in the bedroom to stifle the noise - pir8

rockchic profile image
rockchic

Thanks for everyones answer , after doing a lot of research it seems that people with connective tissue disorder and especially sjogrens seems to sufer with ear problems and temporal mandibular joint dysfunction or tmj , sjogrens can give symptoms similar to eustacian tube dysfunction dont know why it can also cause athritis of the jaw joint . as if we dont have enough things to put up with!

Coppernob profile image
Coppernob

Tinnitus can also be a neurological symptom - i.e. an indication of the brain not functioning properly, emitting wrong signals, etc, probably through inflammation.

brave profile image
brave

some of my first symptoms 16yrs ago were tinnitis and balance issues ,the first consultant i ever saw was an E.N.T ,i beleive its lupus causing nervous system disturbance?oh the joys;)

jemmyjemjem profile image
jemmyjemjem

Just resurrection this post as the whistling in my ear is driving me NUTS!!! It's my right ear which feels permanently blocked like I have been swimming .. there is no wax in it. Tugging it does nothing to clear it, neither does blowing my nose or swallowing. The noise varies from whistling to humming to a noise which I can only describe as the noise u here from electricity pylons. It's been worse since I had paritotis & the infected is stillI up slightly. I have slight hearing loss in the lower end of the spectrum, so basically old age hearing loss (I am 34!!). Got doc on Fri. But can anyone tell me what I should ask for? Another hearing check or an audiology referral? Thanks in advance xx

rockchic profile image
rockchic

hi, jemmy jem jem. i know what your going through! ,in the last 5 years i saw 6 different ent specialists i had every diagnosis going from labrinthitis,menieres, shingles in the ear one specialist said it was eusatian tube dysfunction and i had a grommet fitted which he said would help dont even go there had a general anesthetic to have the grommet fitted and my symptoms were worse than ever the ringing intesified 100per cent and along with that came severe virtigo and ear pain , i had to have the grommet removed as an emergency and they found a blood clot on the ear drum i had the most terrible pain ever , in the end i paid private to see a top ent specialist who listened to all my symptoms in the end it was nt an ear problem after all even though most of my symptoms were ear related and i had bad hearing loss they were caused by temporal mandibular joint dysfunction , because the jaw joint is so close to the ear people with this problem often have ear troubles as their first symptom and a lot of people with connective tissue disorders and fibromyalgia can have tmj. i was given a ct scan of my jaw joints and told i had arthritis of the jaw caused prob by lupus . anyway fast forward 12 months and i am better than i was i still have problems ie terrible tinnitus ,ear pain, dizzeness and ear loss and pain , but not on the scale it was i had treatment by a private dentist who specialises in tmj disorders and it has helped, its hard to get any help or treatment for tmj on the nhs nothing new there though! , if i was you i would the doctor of the possibility of you having tmj and see what he says , let me know how you go on and if you need anymore info dont hesitate to get in touch , best wishes rockchic x

Suzie profile image
Suzie

If you have troublesome tinnitus you can ask for a referral to a hearing therapist. If the problem is unilateral you will need a referral to an ENT specialist to rule out any retro cochlea pathology especially if you have an associated balance problem. Then you can ask him to send you to a hearing therapist. If you go to the Action on hearing loss web site there is lots of information regarding techniques to help you cope with tinnitus. Therapists can provide a masking device or offer retraining therapy. Good luck

minka profile image
minka

yep me to i got it was only one now both not verry good for ballance problems

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