Hearing loss update

[whitefishbay]

Hi Everyone

Who knew that these autoimmune disorders have a mind of their own. I am getting used to living(?) with only one good ear. Now I just say I am half deaf and people looked shocked and then speak louder. My friends are learning to go on my good side (with working ear).

Anyway thanks to PMR Pro for saying go get immediate help (if you notice hearing loss). She is so right. Go right to A&E and it is treated like you have had a stroke (I haven't). Going back to work in 10 days which should prove interesting....

I have been on 60 mg of pred (sudden severe hearing loss treated with high dose steroids). I sympathize completely with all of you with GCA. You feel like you are fizzing the whole time. Hard to sleep. Anyway I will be back to my usual 1 mg tomorrow.

It's probably a good thing we never know what is coming health wise. My GP rang to say she missed my hearing loss needed a trip to A&E. At least she admitted she missed this.

Off to audiology and otologist on Monday. I am also trying everything that might help - cranial osteopathy (and virtual healing). Hoping for a miracle.

Thanks for all your support - I always know you are all in the background. x

[PMRpro Ambassador]

I have had 2 friends/colleagues with the same problem - always had to make sure you were on their "good" side! It was something I had never come across in the UK.

[whitefishbay in reply to PMRpro]

This is me now "to the left, to the left".

[SheffieldJane]

Wishing for a miracle for you. X

[MrsNails]

Wishing you all the very best 🍀 please update us after you’re seen on Monday. Good Luck 🍀

MrsN

[whitefishbay in reply to MrsNails]

Thank you. Will do. x

[HappyDiamonds]

Just wanted to say good luck and I hope you get your miracle.

[whitefishbay in reply to HappyDiamonds]

Thanks. Me too. Miracles happen right (on channel five films).

[Constance13]

Good luck to you in the coming weeks.💐💐

[whitefishbay in reply to Constance13]

Thank you.

[Daffodilia]

Hi I’m not sure you should learn to live with hearing loss in one ear - I have hearing aid for just one ear and it makes a big difference to tinnitus and balance - I love it I also believe deafness in one ear should be investigated with MRI which I had - good luck

[whitefishbay in reply to Daffodilia]

Thanks. I do wear one hearing aid and it helps with all around sound, etc. They said I will get an MRI (if possible as I had heart surgery in 1971 and am wired together) but not sure how quickly that will happen. Thanks for the advice.

[Daffodilia]

I would also recommend private hearing test if you can

[whitefishbay in reply to Daffodilia]

I have another audiology apt on Monday to see if there is any improvement (my miracle should happen beforehand...) and then I see the otology department (had to look up that one). Not sure a private hearing test will make a difference but I will think about it. Thanks for the advice.

[PMRpro Ambassador in reply to whitefishbay]

The hearing test won't be that different - the cost of the hearing aid will be!!! Not sure about the prices in the UK but the aids OH has cost IRO 4.500 euros for the pair 5 years ago - they are all singing, all dancing and he does hear better with them. Really needs new ones but they'd be over 6,000 ... Hum...His won't come back - it is bilateral and equal due to chemotherapy. But as he said - deaf or dead isn't much of a contest ...

[cycli]

lost hearing in right ear. Doctor missed that as a poss. indicator of GCA. Had a test at hospital and they also didn't recognise sudden hearing loss as poss. GCA. Got tested. Some residual facility there so fitted for hearing aids. both sides. It did help with balance and tinnitus. However I work on the basis of use it or lose it and the fact that I had some facility however slight made me struggle with the impediment hoping for an improvement. It has come back to about 60% over 6 months and although distinctly different to the more normal left side is an improvement. I think there is still more when the inflammation is down so will persevere. Good luck with yours. There's always hope.

[whitefishbay in reply to cycli]

Thanks. This is good news that you got 60% back. I am going to be positive and hopeful too. I know some hearing loss is age related and common but not this sudden variety. Going back to work on 31.8 and this should be interesting. My boss mumbles and could never hear him before....hahah. I work in two secondary schools as a Careers Coordinator and have students coming in for interviews. I admire one student in particular. Wears a hearing aid on one ear and just gets on with it (many kids are too embarassed to wear their hearing aids). I will have to take the loud and proud approach. 🦻 my new emoji.

[cycli]

It's important that you hear your students properly to help them best so probably use the facility. I can afford to be less able as it affects noone but me. Good luck

[PMRpro Ambassador in reply to cycli]

Don't be too sure - I bet the family wouldn't agree

[cycli in reply to PMRpro]

probably true everything we do or don't do affects someone else unless you are a hermit.

[Karenjaninaz]

In the US persons with permanent hearing loss, not helped by hearing aids,can get a cochlear implant; it is life changing. My grandmother got very deaf after middle age. I think that may have come from streptomycin. Honestly, I found it frustrating and annoying to deal with a hearing impaired person. My brother in law lost hearing from chemo for bladder cancer. He pretends to understand and that drives my sister nuts. I suggested texting him to get important messages across. I gave him the info on cochlear implants. Untreated hearing loss causes isolation and has an increased chance of dementia. It is covered by Medicare here but hearing aids aren’t.

[PMRpro Ambassador in reply to Karenjaninaz]

Haha - OH lost his hearing to chemo and he does that too - he THINKS he heard and answers the question he wants to. And I have to say everything 3 times. Texting wouldn't really help - he acts as if he can't use a phone!!! He can when he wants to ....

[Grammy80]

I can recall that after I was diagnosed with GCA in 2019 and had been on high doses of steroids, 80 mg to 65 per day for a while asking...."Can this affect your hearing too?" My left ear felt plugged; even though I wear aids I was hearing almost nothing. The HOPEFUL part...it passed after a while with no permanent damage at all. (As far as 'a while' , I was too much of a pred head to remember how long it lasted)💖

[whitefishbay in reply to Grammy80]

When I went back to get retested after the high steroids for 14 days my hearing had improved. Off to get an MRI of my head today. Hope they show I have some brains still in my head.

[Grammy80 in reply to whitefishbay]

I'll bet they found you had an excellent supply of grey matter. 💖