GPA ear problems

[Roughley17]

I'm interested to know whether anyone else with GPA has had ear problems? I have a constant feeling of there being an air bubble / pressure in my left ear which is always there but sometimes worse than others. It appeared when I was first very ill with vasculitis 12 months ago. ENT consultant said he can find nothing and thinks it's a jaw problem with which a dentist might help. I'm not convinced as it's a similar feeling to when you've flown and is constant and very irritating . Thanks all.

[gooseflight]

Yes, absolutely. I had persistent otitis media before I was diagnosed. Like you the ENT consultant said nothing to worry about. Just before I was admitted to hospital I had a horrible episode involving vertigo and hearing loss in my left year. This resolved after a few days of high dose steroids. Just in time to hear England losing the Rugby World Cup.

[Roughley17 in reply to gooseflight]

Thanks. Think I might ask for a second opinion.

[Main1234 in reply to Roughley17]

My OH lost his hearing in his right ear and now wears a hearing aid he has GPA he said it was like before your ears pop on a plane. No ear infection or discharge. He was having a flare at the time when went on to a relapse .. started on RTX. And has improved slightly . Might be worth checking with your consultant/ nurse specialist.

[sorefeetsoldier]

Hi,Yes I had same symptoms and same baffled consultant, answer to my problem was blocked Eustasian tube rectified by use of a eustasia air pump device, check it out on the net. It certainly worked for me.

😁

[Alanball]

Yes I have the same GPA and had the same with my ears mainly left side, also have like a high pitch whistling in the left ear as well. ENT said there is nothing wrong. I’ve had it for just over 5 years

[AmyS1]

See a vasculitis specialist in a vasculitis centre speak to the helpline.

[LindaMRich]

Yes, my hearing overall has been affected since early on after being diagnosed with GPA in 2015. Same response by consultants as others have said, can't find anything amiss. Hearing aids were issued but make no difference. I already had underlying tinnitus. It'll frequently feel like they're blocked by a bubble, or wax has 'slipped down' or like i've been swimming & water has got in. That will ease overnight but it happens again the next day, more frequently & more prnounced if i'm unwell or under stress - which could be linked to a jaw problem - something i'd not previously considered. How safe is the eustacian air pump sorefeetsoldier?

[tracey65]

Yes my son lost his hearing in one ear and 50% loss in the other he now wears hearing aids with gpa vasculitis

[Investigator1]

Hi Roughley

I get that! When I was first diagnosed 15 months ago I didn’t get any ear issues but when the Azathioprine started being ineffective and my ANCA levels rising again after a couple of months one morning I woke up and it was like I had just got off a plane but my right ear hadn’t popped back, then one minute it was about 50% ok then felt blocked again, the left ear wasn’t too bad. We tried olive oil, Earex and others, no good! I rang my GP who said the Nurses had suspended the ear clearing service because of COVID, tried to get a booking with Specsavers but they were booked for months. In desperation I went private, I ran it past my Consultant first, she said “your immune system can overcompensate sometimes to an attack” “just make sure they are a reputable company”. I travelled 25 miles, the first session semi cleared it, a week later a second attempt did it. Best £80 ever spent. I can only relate my story, it may be totally different for you. Please take care and stay safe. Nick.

[lesleyg in reply to Investigator1]

Hi Nick, I have Behçet’s Disease (which is a type of Vasculitis) and am in Australia. I have exactly the same problems with my ears. Can I ask what type of company it was that gave you such relief? Thanks Lesley

[Investigator1 in reply to lesleyg]

Well Lesley, I am the UK and it was an Audiology company that specialise in Hearing Tests, Hearing Aids etc called “THE HEARING SUITE” you will have the equivalent out in Australia . I have emailed THS and they have come back to me and said Earworx ear word.com.au or the Ear Cleaning Clinic earcleningclinic.org.au and said they are quite reputable costing about 120-160 Aus Dollar. The people I went to said they wouldn’t charge if they couldn’t get it out. Just make sure Lesley it’s Microsuction they offer and not the water treatment they used to have in GP Surgery’s. Hope this helps, if you need any more help, please get in touch. Nick.

[Investigator1 in reply to Investigator1]

Sorry Lesley that should read earworx.com.au

[lesleyg in reply to Investigator1]

Thanks Nick, I will definitely look into it!

[Roughley17]

Thanks all. It's been very interesting to find that others have had similar problems and similar responses from ENT. I've had my ears checked for wax and they're clear. Hearing test was okay although that must have been a good day as I know it's up and down. The Eustacia Air Pump sounds promising. I'll make some more enquiries. Best wishes to you all in coping with this strange illness.

[Sparkypatrick in reply to Roughley17]

I've also found the responses illuminating. My rheumatology consultant (not a vasculitis specialist) thought my ear issues might be unrelated to my GPA. Seems like they are related. Going to look into that pump.

[Willmebe]

Hi Roughley. Ear and jaw problems are classic GPA symptoms. They often come along with joint pain, leg and arm muscle pain, mouth ulcers, stomach pain, tiredness, anxiety, depression, and a long long list of other ailments I'm afraid. Hope they get you sorted quickly. Stay safe.

[DazVin]

My adventure started with what I thought was an ear infection, a few months later after several rounds of antibiotics I went to donate blood but was refused, the nurse fetched a doctor who asked me how I felt.....told him I was quite tired but put it down to work. In his words "its a wonder your not on your hands and knees". He explained that there were issues with my blood but the test they do is limited so he wrote me a letter to take to my GP straight away. GP saw me and referred me for tests.....cancer screening came back as negative so was referred to ENT as I was now very deaf. Doctor in ENT reviewed my case and after some tests and examinations he had an idea what it might be and referred me to Rheumatology, this was all over a period from June to September 2016. As soon as Rheumy Dr did some more tests and examinations etc he diagnosed me with Vasculitis GPA and started me straight away on I think 80mg of Pred which after a very short time made me feel better in myself. I was then put on Cyclophosmadine infusions and tapering down of Pred plus lots of other med's. Unfortunately the inflammation in my head had permanently crushed the nerves to my ears, also lots of nasal crusting and some loss of tissue and my sinuses also took a hit. Once the inflammation was under control I was fitted with hearing aids which is a blessing but to this day I still have bad tinnitus plus a feeling like my ears want to pop similar to when flying - if I hold my nose and blow though this turns from discomfort to pain so I just live with it now.

After 9 rounds of Chemo I had a major relapse, in hospital for 3 weeks for a pericardial effusion - now it had spread to my heart and lungs with suspected kidney involvement. Was tried on 2 oral immusuppressants but then referred for Rituximab plus high Pred again. This seems to have stabilized things but I also now have peripheral neuropathy in both feet and to a lesser degree in my hands, they are not 100% sure if this has been caused by the Vasculitis or chemo as both can cause it......like vasculitis though there is no cure just strong pain killers/nerve blockers! Managed to taper off Pred by late 2018 but felt really aweful.....so guess what? Yes....more tests and it turns out that my Adrenal gland has not "kicked back in" as it should have done after coming off Pred - rare but not unheard of, so guess what? Yes, even more drugs ha ha - Hydrocortisone for life. vasculitis is definately the gifyt that just keeps on giving. Still deaf as the nerve damage is irreversible.

[Roughley17 in reply to DazVin]

Thank you for your reply and for sharing your experience. It's a terrible illness and I find, very difficult to explain to people as most have never heard of it. I hope things go better for you from now on.

[NacMacFeegle]

Hi Roughley17, yes I had that before I was diagnosed and still get it when the mucus in my ENT area gets thick. The ENT specialist I've seen recommended Otovent balloon, it is probably similar principle to Eustachian Air pump. There are videos on how it works on YouTube, I ended up buying a bag of cheap balloons and managed to work it just the same (plus I use the balloons to blow up and exercise my lungs, not the same ones of course). It works for me, whenever I get that full feeling. I also use Sterimar saline spray to help keep the airways clear of mucus. Blocked ear used to drive me nuts (and GPs who insisted there is nothing there even more so), so I hope you find what works for you.