Looking for options with hearing loss

[upwardbound]

I am only 2 months into my diagnosis of GPA, weaning down on the prednisone, but continue to have a lot of ringing in my ears and hearing like I have ear muffs on. Occas. my ears will "pop" and for 5 seconds I can hear 50% better. I don't know if I should look for someone to open my eustachion tubes or wait. I am afraid of increased permanent damage.

[AndrewT]

Dear upwardbound,

Can I make a, very simple, but- I believe- necessary suggestion please? That is that you ask, maybe a Boots- or similar for a Hearing Test. Most of the Actual 'Testing' is done in a Sound Proof Room, with nothing more Dangerous, than quiet Sounds being used. 'They' May Wish to Probe, your ears, but- I'm Certain that, if you explain your Fears- 'They' will either Skip, this Step....or proceed with extreme caution.

The Whole Procedure, once complete- and fully analysed- will give a Very Good 'Profile', of your Hearing, and allow a Professional Diagnosis. Recommendations, NOT necessarily involving Hearing Aids, can them be made, to you.

This is Surely, much Better, that Worrying about this Issue. I would make, at least, The Enquiry now upwardbound. Can/ Will you Let Us Know, what is Said please?

Very Best Wishes, from us All

AndrewT

[Grizzly-bear]

This might not be the most helpful response but I have had tinnitus and muffled ears for about 7 or so years. I was diagnosed with vasculitis just over a year ago (I had gone deaf in one ear and limited audio in the other but docs had been putting it down the chronic sinusitis for years - I also developed a lot of other vasculitis symptoms in joints, eye, kidneys etc). I still have the ringing and muffled and my ears pop a lot, that hasn’t gone, but with the treatment I did get my hearing back. I not sure it was 100% what it was but I can hear.

I’ve personally opted to live with what I’ve got as I know surgery on Eustachian tubes and similar procedures don’t always work, or could make things worse. I’ve tried other things such as ear popper devices etc with limited success.

So this is mainly to say my ears haven’t got worse since treatment, but I likely already had permanent damage by the time I was diagnosed due to the years of worsening symptoms without diagnosis. You may be in a better starting position than me.

[Nadine99]

My husband who has GPA had problems with his ears and they put grommits in to try to drain fluid. It helped for a while but over the years, 12 of them, his hearing has diminished and he now wears 2 hearing aids. Get your consultant to refer you to your ENT department as soon as possible

[Main1234]

Hi my OH lost his hearing when he was having a flare of his GPA. It tends to effect his nose, ears etc.

Looking back this was a red flag. He was referred for a hearing aid, free on NHS after initial investigations by GP for ear infections etc.

when he had other symptoms, seen by his consultant and changed his medication his hearing returned.

[upwardbound]

What did they change his medication to?

[Main1234 in reply to upwardbound]

he commenced RTX and MMF and steroids .

He was previously on AZA which looking back once the dose was reduced he started to flare.

[RichardGPA65yrs]

Hi upwardbound, when my GPA vasculitis started the first symptom I had was profound deafness. Very socially isolating it was. CT scan showed bilateral middle ear effusions (liquid in middle ear instead of air). When vasculitis responded to treatment the hearing returned to normal heralded by popping as you describe.

Bottom line is if CRP and ANCA titres return to normal then so does the hearing and other symptoms. This should be sorted before going down the grommets route. So maybe you need to review your treatment with your specialist. Maybe rituximab needs to be added to your prednisolone treatment. However, immunosuppression in a pandemic has not been fun. The pros and cons need to be discussed and weighed up. Hearing loss is not the only danger in GPA there are life threatening complications depending on you particular phenotype of disease. Good luck.

[Webbyj]

hi. I also have tinnitus which is very hard to cope with sometimes. I was sent for an audiology test which confirmed some slight hearing loss. I also had a brain mri. These tests were never followed up with an ENT appointment just a letter from consultant saying there is no obvious cause for the tinnitus and it can’t be treated. No one has even looked in my ears since! I have basically been told I will not need a follow up appointment so I have to learn to live with it. I don’t even know if the vasculitis has caused it or if my hearing will deteriorate.

My advice would be to ask for ENT referral and they may then give you an mri to look for anything which could be treatable. Good Luck 🤞🏻

[tomo1854]

Hi i to suffer with tinitus its really anoying my consultant seems to think their is not much they can do i have had gpa for 2 years and get lots of problems with head colds, sinus trouble nose bleeds its all related to the vasculitis and the damage it does when its active,i have learned to live with a lot of the problems i wish you all the best take care

[Mooka]

I would agree with Nadine ask for a referral to ENT preferably one who knows about GPA. It makes a lot of difference. In the meantime have a look at this:

vasculitis.org.uk/living-wi...

Good luck.

[Main1234 in reply to Mooka]

think the question was asked by someone living in the US . Not been diagnosed for long .

Agree still needs to be seen by a specialist in vasculitis

[ZiggyDiego]

sorry to hear this. I have been hearing impaired all my life and had tinnitus since I was a young child. My Eustachian tubes have never drained properly. I have hearing aids which help so much. The ENT keep an eye on my vasculitis as it affects my nose and sinuses. Also my treatment (rituximab) makes infections more likely, so I have to be careful not to get ear or throat infections. It is possible to live with tinnitus: I’ve found over the years it’s worse if I’m very tired, got an infection brewing or very stressed out. With hearing, there are strategies that help such as sitting with your back to the wall in a noisy room, telling people you can’t hear properly and asking them not to cover their mouths when speaking, using subtitles on the TV etc. wishing you all the best

[Derek]

Hi, l have EGPA (CSS) and approx 2yrs before diagnosis l had ear problems among other health issues and, 5 wks prior to diagnosis inn 2009 had hearing loss for a week. My hearing is affected constantly so have regular visits to audiologist and hospital ENT Dept to check my ears and adjust my hearing aids. Only recently it was recognised that my sinuses, which become blocked by mucus and nasal crusting (on left side) and polyp on right. By douching morning and night my hearing now remains fairly constant. However, if l get a throat or ear infection my hearing is considerably reduced, adjusting the hearing aids making little or no difference. As l have asthma l am given a course of antibiotics and steroids. Both allow me to breathe more freely, particularly as the steroids considerably reduce the polyp’s size. As steroids reduce my immunity l continue to wear a mask as necessary.