Ear and throat pain

[Libertylane]

Did anyone have ear and throat pain with GAC on and off ?

[Jane-s]

Yes, before the headaches started I had quite severe earaches. I was referred to ENT several times. No one found any thing wrong with my ear.

Before the headaches started I had so much pain in my throat and neck that I sadly had to stop singing in the choir.

The headaches made me go to the GP who diagnosed GCA.

Now I occasionally get earache but can’t sing or even talk for long.

It’s a mystery. I know from the Forum that earache happens because of involvement of the 8 th cranial nerve, but don’t understand why I can’t sing!

[Grammy80]

I did have some twinges in my ear...not a big a deal though and haven't for 2-3 months. It has been my experience that after a while on prednisone.....your body is saying 'What?" 😏😏😏Tickle here, twinge there and then when it becomes accepting.....you taper~! I'm not trying to make light ....but I am saying so many of these strange 'feelings' will pass even though they sure don't give us comfort. Remember how many are on this walk with you

[Libertylane in reply to Grammy80]

Can’t get message to work to you. Ear and throat pain worry me. Drs day not symptoms of gca. I’ve had these on and off the whole time just local on biopsy

[DorsetLady PMRGCAuk volunteer in reply to Libertylane]

If you haven’t managed to do it - to message someone tap one their avatar(picture) takes you to their profile page, tap the message button ....and away you go!

[Libertylane in reply to DorsetLady]

Thanks

[PMRpro Ambassador in reply to Libertylane]

I fear they are wrong. There has recently been a publication about 8th cranial nerve involvement in GCA.

ncbi.nlm.nih.gov/pubmed/314...

[Libertylane in reply to Grammy80]

yes

[SnazzyD]

Ear lobe ache at night and an intermittently horse voice with dry throat that was sometimes borderline sore in the mornings. Bear in mind other things can cause these too.

[Libertylane in reply to SnazzyD]

Did the ear throat pain go away with the prednisone very fast. Got a biopsy today and if neg do I still worry about those symptoms? Who knows what to do

[SnazzyD in reply to Libertylane]

The symptoms went within 2 hours of steroids but for some it takes a little longer. When I say my symptoms went, I didn’t feel well or pop back to normal. My biopsy was negative but they treated me on symptom history and the fact my response to 60mg Pred was dramatic.

[Hellyowl]

I have had ear ache on and off on the side I had GCA. Its not severe and I ignore it . a bit of tinnitus since GCA too. I believe there is some research going on about ears and GCA.

[SnazzyD in reply to Hellyowl]

Yes, I do think I’ve had some damage to my hearing in the run up to diagnosis.

[Hellyowl in reply to SnazzyD]

I notice my left ear is not so good on the phone, sometimes aches and sometimes has a bit of tinnitus in it, but to be honest it does not bother me and I think the inconvenience of attending appointments would bother me more. I spent a lot of years (and occasionally still do) standing next to banks of speakers which will certainly have done some damage anyway.

[SnazzyD in reply to Hellyowl]

You have had them checked for impacted wax have you? This time last year I had increased tinnitus and poor hearing, got a nurse to look and they were both rammed. Had to get them irrigated after a couple of weeks of oil. Never had a wax problem until then.

[PMRpro Ambassador in reply to SnazzyD]

I had an awful wax problem with unmanaged PMR - I also had some signs of GCA/LVV. I still get more wax when I have a flare.

[Hellyowl in reply to SnazzyD]

I occasionally use ear drops for a few days. No where round here to get ears syringed. Our surgery stopped doing it. There is a private clinic in town that advertise, but I don't want to take half a day off work and pay.

[SnazzyD in reply to Hellyowl]

You can do it with just oil but if it is really impacted it’ll take months and likely you’ll go temporarily deaf as the dried wax expands with the oil. Therefore one ear at a time is advised for convenience. However, ideally somebody needs to see if there is wax and if it is worth it. If that’s not possible you can put some oil in and if you go deaf and it doesn’t clear once the oil has come out, chances are you need it. A classic is someone going swimming and the water gets trapped behind a lump of wax having flowed through a tiny gap. Oil needs to be put in and then lie down for at least 10 minutes so it gets to the ‘coalface’. There are products that aren’t oil but some people get inflamed ear canals from them; oil is more benign. I like the pump action spray ear oil as it’s easy to use.

[PMRpro Ambassador in reply to Hellyowl]

ncbi.nlm.nih.gov/pubmed/314...

done and dusted

[SnazzyD in reply to PMRpro]

My hearing suddenly deteriorated about 18-2yr prior to diagnosis. They were tested and the GP said yes, one side was worse (worst GCA side) but not badly enough for referral. With hindsight I was getting intermittent mild GCA symptoms for years since Chemo.

[PMRpro Ambassador in reply to SnazzyD]

All the more reason to get wider coverage of this research (funded originally by the NE charity and then by the NHS)

[jinasc]

Your Ears.

Deafness, Tinnitus, Vertigo etc.

healthunlocked.com/pmrgcauk... 8th Cranial Nerve,

In this link, there is another link to a paper issued on the above. In that we post advised that if possible you download the paper and take it with you when visiting your GP or Rheumatologist. It takes new medical information ages to percolate downwards and we can all help fellow or potential fellow sufferers from GCA and also help in diagnosis.

Thank you.

[maria40]

Yes, my most recent flare started with stiff neck then pain in ears and throat. Also a sore scalp. I've seen my GP today and my inflammation markers are down again to near my norm at 27ESR and 3CRP. Now a gentle descent from l5mg but not rushing as I feel better than I have for a long time.

[Jeromekjerome]

Yes my mum experienced severe painful earache as part of the GCA headaches- described as long hot needles pushing through into her head. They also had to remove a lot of wax build up after diagnosis that had actually affected her hearing quite dramatically.

[Jackoh]

Yes I occasionally have earache on my left side, especially during the tapering period then it seems to settle.