Back up to a high steroid dose

[studiomaster]

Hi everyone,

I was diagnosed with PMR in 2018 if i remember correctly. After 6 years I managed to get down to 0.5mg Pred just 2 weeks ago.

Then something happened. Last Thursday I had sudden onset total loss of hearing in my left ear. within 2 days I had gone from normal hearing to just a crackling noise in the ear. I alreaddy have lost most of the hearing in my other ear due to a trauma incident last year. (possibly perforated eardrum)

After spending a long time in the Surgical Assesment unit of UHCW on Friday I was put on 60mg Pred. So far no improvement but I have another appointment this afternoon

As yet there is no improvement or diagnosis with the hearing but i'm hopeful the problem can be reversed

I really thought I was winning. Has anyone else experienced anything similar

All the best

Brian

[DorsetLady PMRGCAuk volunteer]

Sorry to read your news... do hope it can be sorted quickly - at least find the cause - was anything suggested - GCA for example as you have history of PMR

Please let us know how you progress...

[studiomaster in reply to DorsetLady]

Hi DL PMRpro and SnazzyD Thanks for replying. No cause suggested but after a lengthy visit to the hospital yesterday where I received excellent treatment I now have improved hearing in my right ear. That is the one that suffered a perforated eardrum last year. They were happy to look at that one. There was a layer of wax that had formed and set over the entire ear drum and they were happy to attempt removal as the ear drum had probably repaired itself after the extended time period. They were succsessful and my hearing is now reasonable in that ear. Even better news the 60mg pred is definitely doing some good as I have some hearing in my left ear albiet only the high frequencies. Its still distorted but there is some improvement. I still have tinnitus but thigs moving in the right direction. It was really worrying me as I take my son in law to hospital for his chemotherapy treatment (Stage 4b Lymphoma) and I need to hear what is said but as I said it looks to be imnproving. Thanks again for your support

[DorsetLady PMRGCAuk volunteer in reply to studiomaster]

Good .. thanks for update…

[PMRpro Ambassador in reply to studiomaster]

Thanks for reporting the improvements - I really was quite concerned but didn't like to give the usual prognosis for SSHL as it is rather depressing. All the best for you both,

[SnazzyD]

oh dear, presumably they examined your ear fully and nothing to see?

[PMRpro Ambassador]

Sudden sensorineural hearing loss? I have a few friends in Germany that developed that - woke in the morning and couldn't hear, The German name for it is a "hearing crash" which expresses it rather well. Not associated particularly with PMR though.

I do hope they can salvage something - it isn't much comfort to know it is almost always unilateral when your other ear already has a problem.

[Sally_Bones43]

Hi. This may not be entirely relevant to this site but does address your issue. All this is well pre PMR.

I lost the hearing in my left ear many years ago when I had an episode of sudden hearing loss with hyperacusis (a profound sensitivity to sudden ‘plosive’ sounds). I was diagnosed with tinnitus and given a masker, and told I qualified for an aid but a 6-month wait. The hyperacusis went away, but the tinnitus and hearing loss stayed and got worse, and I also started losing hearing on the right, so that by my mid sixties I was wearing an aid in the right ear and the left was ‘dead’. Was coping, but had no directional hearing etc. i still have no diagnosis other than idiopathic…. One ENT suggested otosclerosis but audiologist says hearing loss pattern doesn’t fit.

i was sitting watching telly one evening when the hearing in my right ear suddenly went. One minute I could hear the next not. Cue emergency appt with my ENT who said probably inflammation of the inner ear, so steroid tablets. This did no good, and ENT said ‘It will probably go away…’ I wasn’t prepared to risk it, so asked for a second opinion: New much younger ENT did scan to check for tumors etc, then injected steroid into the affected eardrum, which had an almost immediate effect, and got me back to where I was before this episode. (I had done the usual google and found literature relating to this, hence knew I needed to fight for it. Also I was living in South Africa at the time so able to access private care via my insurance)

Long story short: any sudden hearing loss should be treated as a medical emergency. Depending on where you are it may be tricky to get the help. If it’s not treated the loss can easily become permanent.

Sorry such a long story, but please don’t just ‘wait and see’. Good luck, Saranne

[studiomaster in reply to Sally_Bones43]

Hi Sally_Bones,

Thanks for the info I have another review with ENT next week so hopefully things will have improved by then. I did have an MRI a few weeks ago for the ear with the perforation but the second ear happened so quickly last week. Within 2 days I had lost all hearing. I actually thought my phone was on mute/silent when i tried to answer it. Ive now got some high frequency sounds although they are distorted, but it looks like something is changing. Thanks again for your post. Its good to know i'm not the only one with a similar problem. Take care

[PMRpro Ambassador in reply to studiomaster]

As Sally says - sudden hearing loss should be treated like a stroke or heart attack, a medical emergency. And very high dose steroids is standard in the hope it isn't too late. Much the same as with GCA and visual loss. If you had gone when it started there would have been a far better chance of success.

[studiomaster in reply to PMRpro]

I went on the Thursday to a local hospital that said they could only tell me if it was infected or not. After 3 hours wait I left then went to A & E on the Friday at our Coventry. They sent me straight to the Surgical Assesment Unit at the same hospital. After many hours waiting I was seen and prescribed 60mg Pred. I hope i didn't leave it too late.

[PMRpro Ambassador in reply to studiomaster]

That is drivel - they should have someone who can recognise the signs! A colleague of my husband went to bed hearing fine, woke deaf in one ear, Went straight to the ENT hospital where he was immediately given an infusion of high dose steroids but it never recovered. They didn't know when it had happened as it was overnight but the steroids presumably were started within 12 hours. But you have some recovery of hearing which is a good sign.