Bilateral hearing loss?: Hi, just wondered if... - Vasculitis UK

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Bilateral hearing loss?

nanny4 profile image

Hi, just wondered if many of you suffer or have suffered from hearing problems? One. of my daughters has systemic lupus and is having tests for vasculitis ,she often suffers from severe jaw and tongue pain,her sister is waiting to see a neuro as she has a deterioration I'm het hearing in both ears she suffers from severe headaches,now she is memory loss problems.

Any input would be much appreciated.

Take care , Sandy.

8 Replies

Hi Nanny4, I have WG(12yrs) and suffered bilateral hearing loss . It began after I had an awful nosebleed and my consultant said my muffled hearing was a sign of anaemia( never heard of this since)

It got progressively worse until I could hear only loud noises or people shouting at me. I had hearing tests at my audiology dept and now wear digital hearing aids. I too had headaches which crippled me but cant remember any memory loss!!. Get a referral to Audiology.

Early diagnosis and treatment may help lessen the loss of hearing. Hope this helps

nanny4 profile image
nanny4 in reply to Llinos

Thank for your reply,my daughter had a hearing test that show. slight loss in both ears ,but nothing to major,now it is slightly worse,she says she hears people but not as clear as maybe 3 months ago,the spine doctor she sees re,her cervical spine problems wrote to her g.p and said he may need to consider refering her back to a neuro she saw 4 years ago about her headaches ,to cut a long story short,the hearing loss occurred since her last visit to spine guy,and her g.p has decided to refer her back to neuro,about hearing,headaches now memory probs.he wasn't happy about it,one minute he said it could just be coincidence,she gets alot of sinus pain,as do her sister and I,she gets mouth and eye ulcers/blisters,lots of other issues that no one puts together.

Tommorrow her sister has a full body scan with dye,maybe that will shed some light on there health problems,if not her renal consultant say's "it will be on to the next specialist,as something is not quite right,considering all the meds she is on.

sorry for rambling on a bit,i seem to have gone on a bit,

Thanks again,Sandy.

Hello Nanny, my husband has WG and his started with cold symptoms, went on to Cronic Sinus and nose bleeds and his hearing deteriorated badly. He had little drains put in both ears to help clear the fluid which was put down to his sinus and inflammation (WG) problems. He also gets the bad headaches, pains and a lot of other things associated with WG. It seems to be part and parcel of these illnesses but the drains in his ears certainly helped although his hearing now comes & goes.

Hope all goes well for you.


I have moderate hearing loss in both ears and tinnitis and now have two digital hearing aids which I use on and off.

I had acute headaches, jaw pain, sores in my nose, ears, scalp,face as well as other rashesas part of the symptioms that I presented with. The ENT consultant said he thought that the vasculitis had affected the blood vessels to the inner ear even though nothing was evident on the head cat scan. I have been handed over to audiology but to get back if I have any problems. My Rheum consultant sent me to ENT, it did take a bit of persistance as he didn't think that there was any connection. Audio have been great.

Just keep knocking at the door.

nanny4 profile image
nanny4 in reply to Porky

Thank you nadine and porky,I am going to. go with her to her neuro app,just for support also for persistance,otherwise she just gets upset sbout getting know where,my 26 year old daughter who has sle etc has found that after years of being told she was ok ,And she wadn't! Now has to do the same,keep chasing all the time she has gone from having nothing wrong to seeing loads of different consultants because of the multi system diseases she has.

Thank you for all your help,Sandy

Hidden profile image

My WG started in the form of an ear ache in just one ear but it wasn't long before the disease had caused 'thickening' of the tympanic membranes on each side which resembled glue-ear and left residual scar tissue in the middle ear. Once the disease was under control it became apparent that I'd suffered hearing loss, particularly in the side which wasn't primarily affected. Thankfully a simple operation to insert a t-tube (a larger, long term grommet) has corrected much of the loss.

Healthy wishes.

nanny4 profile image
nanny4 in reply to Hidden

Thank you for your reply,my daughter had a perforated esrdrum and severe glue ear as a child,she had a perforated ear drum about 8 months ago that healed and seems fine now,who knows? I have severe sinus problems,infections on and of for. years, I have tinnitus for years since I had surgery for mastoid,now one could really give me answers so i just deal with it,I get earache on and off.

Must be a familial thing,maybe if my older daughter gets anywhere with a dx,after c.t with dye,we can push for answers for my younger dsughter.

Thanks again, Sandy.

The last time I mentioned it to my nephrologist he said he had the same problem with hearing loss but it only occured when his wife called him!

Not very helpfull I know but it seems par for the course I'm afraid.We continue to baffle the experts!

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