Hi,
Is anyone else suffering from a sort of Tinnitus? I get this mid rang ringing in my ears every time I attempt to take the Prednisilone. I’ve been awake since 1am because all I can hear is this ringing! No one else here can hear it. Honestly it’s driving me nuts! Just having a whinge, thanks! X
Yes, i get this. Sometimes louder than others. Ive seen others talk about it on here. It does quieten down then comes back. Would drive you mad.
I have had it for years but only diagnosed with PMR 6 months ago. I found the more you "listen" to it the worse it is. I have pretty much trained myself to ignore it but there are days it likes to up the volume so that I know it hasn't gone away. I also found that when I had hearing tests that involved the headphones in the sound proof box that it isn't there at all.
I completely understand. I started getting it over ten years ago, was referred to audiology at hospital and they also noticed I’d lost some hearing in my ear. I was given a hearing aid which I put in the minute I wake, don’t remove till I’m ready to sleep. This has worked for me.
Amazingly it is through the NHS they provide batteries and every five years they replace the aid. I’ve heard a rumour this will service will not be available under NHS in the future, in the same way Podiatry was axed.
Do hope you soon get some relief from the tinnitus.
Yes I get it. If I am having a bad day (usually if I've done too much) it is louder than other times. I do try to ignore it during the day and sleep with an audio book at night with one earphone in.
Yes it can be dreadful. Mine started in the year to 18m before my GCA took flight, along with some hearing loss. It got worse on Pred but that effect reduced with dose. I now have permanent tinnitus but as long as the tone is constant, the rhythm regular or is aligned with the beat of my heart it’s doable. When it becomes irregular or has multiple tones it’s totally maddening and sleeping is difficult because my brain can’t blank it out so much. Night is the worst because of the lack of background noise. What I do find helps is by avoiding a loud tv, music or being amongst lots of conversation before bed. Being bunged up with ear wax makes it worse as does being ill or having nasal congestion.
mine is a constant pitch and doesn’t pulse, thank goodness. I just hope it isn’t a sign of things to come. All the best to you.
I’ve had it for 20 years following a middle ear infection. As a child I also had severe ear infections and ear drum burst. GP told me on diagnosis of adult ear infection he could see the scar on the drum.
I’ve noticed that since being on moderate Prednisone dose that the hissing is worse. Quiescent when I got to 7mg. Those were the days!
It was upsetting when I realised that it was permanent, and the then practice nurse told me that ‘I had to learn to live with it’!! 😕
One does in time … I suppose I’d find it odd now if it wasn’t there! 🤣.
Meanwhile you have my sympathy …. 💐
I get it off and on
I had that once. It woke me up - I thought a baby was screaming outside - I looked at my husband he was asleep. It was inside my head. After ten mins it went away but I never forgot it. Scary. You my sympathies (I now have a vestibular schwannoma so am 60% deaf in one ear). Once you get up and get busy you won't notice the tinnitus so much. Have you seen an ENT about it?
No. There’s no treatment for it here in the UK. I’m sorry about your hearing loss. X
Not sure that is true - some Trusts do
Yes, I've had tinnitus since the day after I started taking Pred 12 years ago. For me the dosage of the Pred hasn't made any difference, it's still just as loud as I'm sitting here writing this as it was the first day it started, even though I'm now on 3mg per day instead of the 15mg per day I started on.
I think the only difference is that when it first started it was louder in my left ear than in my right, but now it's moved across to be just about equal in both ears. However, I think the frequencies are different, i.e. the left ear frequency is slightly higher than the right ear frequency. Ah, the wonders of stereo eh?
I've found that when I'm busy I don't notice it, but if I'm tired or under the weather, it gets VERY LOUD! Anyway, there seems to be nothing I can do about it except wait for the day when I stop taking Pred altogether, and then hope it will fade away.
I realise I'm not giving you much hope, but tinnitus isn't the end of the world, or the end of your life. It's just an annoyance that you learn to live with, like getting old and all the various issues that brings with it.
(Oh to lose 50 years and be in my 20's again, now that would be wonderful!) 
I can sympathize with you. Since my onset of GCA (April 2022) , one of the first things was tinnitus. It still continues and never subsidies, it drives me nuts. I go for a hearing test today. I also have a white noise machine in our bedroom to try and help with sleep.
Tinnitus is one of those things that just doesn’t untreated medics because they tend to see it as non life threatening their I it’s just something we have to deal with. However, it can be extremely life limiting. I’m in the UK. I used to suffer from tinnitus about 7 years ago but it was completely different. It was a different pitch etc. The NHS referred me to a clinic (which now doesn’t exist). They gave me a hearing aid to wear in the opposite ear that played a sort of white noise. It did help a bit. All the best to you. X
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