hearing/ear issues

[Mindfullmum]

Hi, I’ve developed hearing loss/tinnitus in one ear and am waiting for an MRI to exclude an acoustic neuroma. I have mixed connective tissue disease and so one of the other possibilities is that these symptoms are due to an autimmune process. I wondered if anyone had any similar experiences? Thanks for reading

[Bon1]

hi there

I don’t have lupus but I do have colitis and psoriatic arthritis. I developed hearing loss after a week or so of dizziness and it was auto immune. I don’t know how long ago it was for you but high dose steroids can calm the inflammation and retrieve the hearing. They can do this with an injection through the ear drum or via tablets. Either way it is time sensitive and many health care professionals are not aware so push!!

All the best

Bon

X

[tjo52]

Hi.Mindfullmum, i am having a very simular experience to you..I also have mctd tinnitus in left ear..no hearing loss..awaiting MRI on 13/05..I also have psoratic arthritis and aps..(nice little autoimmune collection there).hope everything goes OK for you..if your happy to would love you to update us..thanks for sharing..enjoy your Saturday 🙂🌻🦋

[SF1000]

Hi Mindfullmum

I had this over 20 years ago. I have lupus and was diagnosed with low tone hearing loss and tinnitus. A scan did not show any acoustic neuroma and I was told it was likely to be autoimmune and to report immediately if I ever got sudden changes in my hearing. That has never happened and I still have the same symptoms all these years later which are easy to live with.

I hope your scan is clear and you have no further problems. Good luck!

[Lulamay7]

I have exactly the same, had the mri , it's not a tumour, was told to ignore it and carry on. Occasionally, it does a kind of whooshing feeling like I've walked into a soundproofed room. The outside noises disappear, and it shrills, but shaking my head or gently slapping the ear stops it. Must be 25+ years, and it's never gotten louder or gone over to the right ear. If I listen for it , it's there, but I only notice it when it's quiet usually.

[Djlr]

Many Lupus Patients have TINNITUS & HEARING LOSS.

We discuss whether it’s ONE of the SIDE EFFECT of HYDROXYCHLOROQUINE or just Lupus (our bodies) attacking the Ears.

lupuscorner.com/hearing-los...

lupus.net/complications-com...

lupus.net/complications-com...

lupus.org/news/lupus-is-ass...

If PLAQUENIL is contributing to RINGING (Tinnitus) or Hearing Loss it is still a minor side effect in order to help MANAGE LUPUS from attacking major organs.

healthline.com/health/drugs...

[Poshcards]

Hi, yes, I have it in both ears now, for about 4 years and it drives me insane at times xx

[Stills]

note my diagnosis is Stills Disease which for me manifests as rheumatoid Disease, some symptoms are similar to lupus hence my presence in this site.

I can’t add anything helpful but do experience what you described. Stills is considered to be an AI condition so perhaps hearing issues appear in many conditions that have overlapping symptoms.

[Kildonan]

Sorry, I'm only seeing this now .... I had sudden hearing loss, tinnitus, and vertigo balance issue a number of years ago now. I rarely share this as MRI showed intercranial nerve damage and I was taken off hydroxychloroquine. .... I never want this to scare folks, as the benefits far outweigh any risks ... apparently very rare & it could just be our old pal LUPUS.... I hope you get the answers you need right now. Take care (and vertigo just horrible!) I got the best support BTW from Audiology & a really wonderful physio who specialised in vestibular disorders. My fingers all crossed for you 🙏🤞🙏

[Pumpkin2009]

I had an MRI of my brain in November for brain issues and it showed a problem with my left ear. I didn't go to my regular ENT as it was going to take so long so the one I went to said that often the MRI magnifies ear findings and that she saw some inflammation, but it would probably go away so come back in 6 months. In January, I lost all hearing in my left ear and had constant pulsatile and other tinnutis. So I called my regular ENT and had to wait until April. I had fluid behind the eardrum and had surgery. The surgery was extremely painful, but it was like a miracle. The left ear is back to normal for it. The doctor did say it may occur again. Then they will put a tube in. I do think it is lupus related.

4 years ago, I started having sensoneural hearing loss in both ears. At the time, my rheumatologist was convinced it was due to Plaquenil and took me off of it. Being off Plaquenil caused all kind of other problems including A-FIb. My ENT did not feel it was from Plaquenil, more likely lupus. I was allowed back on Plaquenil eventually with the ENT recommending that to my rheumatologist.

I have found more information on autoimmune conditions and ear problems. I feel that it is an area that is most likely not followed up on as it should be.

Hope you get some answers and help soon. Going through ear problems is very difficult.

Healing hugs.

[TwoH]

I had sudden hearing loss with tinnitus. I was diagnosed with APS and it was determined a micro clot damaged my ear. We are all different so no size fits all but it may be prudent to have your physician do a blood test for APS. It can go alongside Lupus.