Reaction to sudden loud noises when tapering at low dose of pred.

[Angel_doll]

I am following a tapering regime of .5mg over five weeks. I started this at 6.5mg, and am just at the beginning of the taper from 5.5mg to 5mg. I have noticed over the past week that my body is reacting to sudden, unexpected loud noises with what I think is a ‘fight or flight’ response, resulting in me feeling rather ‘odd’ for a while. I wondered if this could be related to the adrenal glands being a little slow to get up to speed with what is required of them?

[DorsetLady PMRGCAuk volunteer]

Certainly sounds as if it could adrenals…have a look at this for info -

healthunlocked.com/pmrgcauk...

[SnazzyD]

It could be the generalised anxiety that comes with low cortisol and inability to deal with it at the same time. On occasion I tripped but saved myself, but the shock of the near missed left me limp for an hour or two. Over 5mg I found the pared dose too low to give me all the cortisone I needed but was still too high for the adrenals to realise they needed to get out of the starting gate at more than a light trot.

[PMRpro Ambassador]

I have found that I am very intolerant of loud noise ever since PMR appeared on the scene, irrespective of pred dose.

[Kendrew in reply to PMRpro]

Me too.

[Grammy80]

I know at that point...when I just felt 'different' about various situations after getting feedback from this great group I was delighted my adrenals were beginning to communicate with my body~!💞

[piglette]

I find sudden loud noises are quite painful. For example my phone started to beep the other day as the battery was low while I was talking and it really was uncomfortable. I did not link it to PMR, adrenals or pred, but I suppose it could be one or more of them.

[Gimme]

I had linked my somewhat enhanced startle reflex caused by noise to my gradual hearing loss. Whilst I often struggle with deciphering speech, paradoxically, loud noises seem to be extra loud, especially if they happen close. It's like my brain turned up the volume button.

[PMRpro Ambassador in reply to Gimme]

I certainly don't have any problem with hearing loss ...

[Gimme in reply to PMRpro]

I have had awful tinnitus for the last few years, which I had blamed on my taste for loud rock concerts. A quick google just now turned this up.

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

My eyes landed on this "In total, 64% had subjective hearing impairment, 52% had vertigo and 50% had tinnitus. These were reversible in most cases following steroid therapy."

Though they say that it resolves with pred, and mine is the same as pre pred. So I will go along with the rock concerts for now. However, the mention of an association with GCA is troubling. I'm off out, so will have to read that article more closely when I get back.

[PMRpro Ambassador in reply to Gimme]

You should pay more attention!!! I have referred to that paper a few times just in the last few weeks! The basic survey that provided the evidence for a study to be done was funded by the PMRGCANE charity before it was disbanded and merged with PMRGCAuk. The NHS subsequently funded the study. Unfortunately it was published shortly before Covid started and got a bit lost.

[MiniSpec in reply to Gimme]

Just read the article, and was surprised. In my case, my tinnitus started the day after I had my first Prednisolone tablet, and more than 13 years later, it's just as loud as when it first started. Even though I'm now down to 3mg per day instead of the 15mg per day I started on.

I also get vertigo, although I've always had a fear of heights, but I get the dizziness more if I turn quickly. I find that my balance goes and I start to fall over. Also, my hearing really started to diminish about 4 years ago. Prior to that I'd always had difficulty understanding what people say, but that's because I've got dyslexia (yes, it can be aural as well as visual), and since childhood I've been unable to respond quickly to what others have said due to having to wait for my brain to decipher the jumbled up noises I hear.

So I'm afraid that for me the opposite of the survey is true. Steroid treatment has done nothing to improve my tinnitus, or prevent my hearing loss, or even curb my balance problems. In fact I wonder if the Pred has increased them all?

[MiniSpec in reply to Gimme]

I also now suffer from a combination of hearing loss and loud noise startle reflex. I reckon it's because now that our hearing is reduced, we are constantly subsoncsiously aware of any noise at all, so when there is a loud noise, we are more aware of it than we would have been when our hearing was good. At least, that's my excuse, and I'm sticking to it.

Yesterday evening, while sitting here at the computer, a large plastic crate slid off an office chair I had it resting on, just a couple of feet away from me. It landed on the carpet, but hit a large pile of crockery my missus had recently plonked there. So I nearly jumped out of my skin when it happened, and for several minutes afterwards I was afraid to move in case I had some sort of 'accident' due to the shock. As it was, all was well, but I'm still a bit shaken up by it all, and find that my hands and fingers shake a little if I try to hold a cup of coffee.

So beware of piled up crockery and large plastic crates, they've got it in for us!!!

[Macas in reply to Gimme]

I have had PMR for 14 years . I hate loud noise, I am profoundly deaf in one ear and not so bad in right ear. I had tinnitus before My PMR was diagnosed.I also have Vertigo !!! Otherwise I’m fine🤣

[Sophiestree]

I am dreadful at any sudden noise. Outside, tv, knock on the door. Jump all the time. It's so frustrating. I'm on a higher dose than you....

[Viveka]

On days 1 - 4 of reducing from 1.5 to 1.25, noise has been difficult. OH came into room and drummed his fingers loud on a table and I screamed at him. Travelling in car was horrible because of noise and vibration. Couldn't relax. Had to grit teeth and say nothing. Feel a lot physically calmer today at day 5. So, withdrawal/adrenals?

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Sounds a bit like withdrawal if it is slightly better as days go by.. although could be a bit of both . Let’s hope it continues to improve. …

[Viveka in reply to DorsetLady]

Sorry I meant the ? for Angel Doll, suggesting her noise issue could be withdrawal/adrenals.

I usually get jangly for the 4-5 days withdrawal, plus an undertone of grumbly adrenals which do their own thing. Even though I should know better, I'm always surprised that such a tiny reduction should have such an effect.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

She read it anyway... I was just chipping in!