Sudden onset hearing loss (right) - history of PMR and GCA (left)

[Bronte11]

I wondered if others have had any experience of sudden onset hearing loss (right side), facial numbness right side, blurred vision right eye, ice cold at back of right eye, ice cold deep inside right ear, numbness across top of right side of head, very, very, very slight headache right temple.

ENT thought this might be GCA on the right. I have a history of PMR and GCA (left side). The symptoms above were not dissimilar to my initial GCA symptoms on the left. However, without the hearing loss, plus I had jaw numbness on the left and I had all the PMR symptoms as well.

Rheumatology said it wasn't GCA...blood results negative plus unsure about the ear involvement for GCA.

In any case my prednisolone was increased again to 60mgs prednisolone. I felt all symptoms went within 2 days. However, follow up hearing tests revealed it took 2 weeks for my right sided hearing loss to return to "normal".

MRI of head, with dye, did not reveal a cause for the sudden onset hearing loss.

Has anyone had hearing loss associated with GCA?

[Nextoneplease]

Hi Brontë

No, I haven’t (I think) experienced this myself although I do have both GCA and hearing loss (they’ve never been established as connected).

However….hearing loss is a noted symptom of GCA ( see FAQs ). And the fact that your symptoms including the hearing loss cleared up on a high dose of pred, seem to show that the two are likely to be connected in your case.

Thank goodness you were put on 60mg of pred despite the uncertainty about the diagnosis x

[Bronte11 in reply to Nextoneplease]

Thank you for that information. I'm very interested in that.

I've put a link to it here (hopefully) in case anyone else puts it (sudden onset hearing loss and GCA) in the search box.

healthunlocked.com/pmrgcauk....

[Nextoneplease in reply to Bronte11]

Thank you for adding the link Brontë 😊x

I’m surprised that your rheumatologist seems not to have been aware of the noted connection between GCA and hearing loss…

[DorsetLady PMRGCAuk volunteer]

Yes - and the charity did fund research it to the issue - see this - and your Rheumy dept should be aware -

Post -

healthunlocked.com/pmrgcauk....

Study -

link.springer.com/epdf/10.1...

[Bronte11 in reply to DorsetLady]

Thankyou

[SnazzyD]

I had hearing loss and tinnitus prior to my diagnosis with GCA. The loss was noted but no obvious cause found. The tinnitus got worse in the ramp up to my GCA eventually getting going. Whilst both definitely improved on 60mg, I didn’t go back to normal.

[Bronte11 in reply to SnazzyD]

I'm sorry it didn't return to normal for you.

[PMRpro Ambassador]

"Rheumatology said it wasn't GCA...blood results negative plus unsure about the ear involvement for GCA."

Then he needs to get some education. We have discussed this on the forum for over 5 years - the paper was published not long before Covid so got a bit lost, but the NE of England charity funded the basis survey after a straw poll at a NE support group revealed several GCA patients there had had ear symptoms and then the NHS funded the study that established that GCA can also be linked to sensineural hearing loss and other symptoms linked to ear function.

healthunlocked.com/pmrgcauk....

and this is the original paper since the average rheumy wouldn't believe a patient forum:

link.springer.com/article/1...

All those symptoms could be signs of a stroke - and GCA is just a very specific sort of stroke.

Sudden onset hearing loss is even more common - and if treated with high dose steroids immediately MAY result in return of hearing but not necessarily. A friend of mine woke deaf in one ear, went straight to ENT but they couldn't save the hearing.

[jinasc in reply to PMRpro]

Thank you - I knew this place would be in safe hands with both of you, PMRpro and Dorset Lady.

I do read the news feed occasionally.

PS: I still giggle, left school at 15 and ended up with my name on an essential bit of paper. ................who knew??????????

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Just shows what determination and a mission to improve others lives can do… and those of us who know you [if only online] are proud to to salute you..🌸

[PMRpro Ambassador in reply to DorsetLady]

You have missed yourself!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

What?

[PMRpro Ambassador in reply to DorsetLady]

Don't say what - say pardon ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Pardon?

[PMRpro Ambassador in reply to DorsetLady]

Didn't your mum say that to you?????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Of course she did… but I was querying your response - You have missed yourself!!!

[PMRpro Ambassador in reply to DorsetLady]

Can't remember why I said it now - Scottish expression ...

[Bronte11 in reply to PMRpro]

Thank you

[GingerPoodle1]

Hello there, this describes some of the symptoms I had - but left hand side. I also had swelling behind the ear around the occipital bone which made wearing glasses impossible as they pressed against it! My face went numb and there was ear pain, loss of hearing and a very odd sensation of 'fullness' around the ear. It has started to go now, but I stil have it. - I am a month on prednisone (45g). I also still have very painful eye socket on the left and still get some temple pain 'stabbing'. Hope you recover soon.

[Bronte11 in reply to GingerPoodle1]

Thank you for your reply.

It happened a while ago, but I was never satisfied with the outcome of the consultations. I've had PMR and GCA for several years so I'm familiar with all the ups and downs associated with that (mainly the GCA)....plus I'm familiar with consultations that seem to be "very bizarre". Fortunately, I'm a very calm person.

I'd never had hearing loss before. My hearing returned, but like you, I have found that my glasses are uncomfortable sitting on the top of the right ear. That's constant now. I've adapted to it. I've also had an intermittent dull ache at the back of my head, low down, on the right side.

I don't know your history. Who prescribed you the prednisolone? Have you seen a Rheumatologist?

[Heron82]

I don’t has all of the symptoms you have, but for the past 8 wks I’ve had pressure and numbness in my right ear, face and jaw and lost 80% of the hearing. Ears have been examined, no infection, no wax etc. going for a hearing test next week.

Not like my GCA symptoms which were mainly vice clamping temple headaches. PMR symptoms under control at 7.5mg pred. But unable to sleep through the night, wake up every night between 3 & 4 and can’t get back to sleep until after 6.30. Shake too when under stress. Oh the joys of this tiresome condition!

[Bronte11 in reply to Heron82]

You're quite right....the joys of this tiresome condition. Let's hope they can find out what's causing your hearing loss etc. I think with me, it was as if they expected these new symptoms on the right side to be exactly the same as my initial symptoms on the left side and couldn't accept that it could present slightly differently.

I don't know if there are people on here who have GCA on both sides and if so, how do their symptoms differ on each side, if they differ at all.

[whitefishbay]

I had PMR which is gone now (never had GCA) but three years ago I had muffled hearing in my right ear. I thought it was hay fever. I saw a GP after 3 weeks and she thought it might be wax....Well luckily I put this on HU and PMR PRO answered. She told me to go to A&E. I did and I was diagnosed with a vestibular schwannoma or accoustic neuroma (after the MRI confirmed it). I would definitely go get someone from ENT to see you. The treatment for an AN is steroid injections. I had one but it was 3 weeks too late.

Best of luck.

[Bronte11]

Thank you for that information. I'm sorry to hear you have a vestibular schwannoma. My MRI scan with dye did not show any tumours. I have a brother with PMR and he had sudden onset hearing loss. His hearing returned completely with prednisolone. His MRI scan showed a petrous apex meningioma (benign). He's not receiving any further treatment for it.....yearly MRI scans though to keep an eye on it.

I had good follow up with ENT. It's just that I never found out what caused my hearing loss. I think the only way I could have found out, was if they had done an MRI scan with dye when I had the symptoms...not after the symptoms had gone (which was when I had the MRI scan). That might have shown something up in the blood vessels....who knows.

What was your experience of A and E????

I hope things go well for you too.