pulsitile tinitus

[jennycat]

Hi, I'm just wondering if anyone else has pulsitile tinitus along with there pmr. I have a Google diagnosis only and have had it more on than off over the last year.

[SheffieldJane]

yes, very text book but seemed Pred. Associated rather than PMR and above 10 mgs only, I think.

[Polym]

I've had it since September hear a constant heart beat in my ears thought it might be to do with my hearing loss as I'm now waiting to go to ent in January it drives me crazy worse at nite told doc but they keep saying is it ringing and when I say thumping and like yourself googled it pulsing they don't understand

[SnazzyD]

Pred can cause this but so can other things, including GCA (sorry, that again) so I would start with some sleuthing starting with a good ear check to rule out ear wax and obvious fluid behind the eardrum. I have been impressed by two good high street opticians with their hearing tests and examination compared to those done at some GP’s. I don’t know what sort of nurse you are but I used to do them as a nurse and know that some practices have staff doing hearing tests who are not trained and just twiddle knobs and that’s it. You need a good Look.

Pred used to give me a permanent pulsing that reduced with dose. I also had it a year prior to diagnosis but it had a different quality. I also had eventual mild hearing loss and tinnitus. It is now known GCA can affect the cranial nerve that goes to the ears. So given that, start by ruling out the basics so that if you do ask for a medical opinion, you have covered the basics already which saves time and might find a simple answer hopefully.

[PMRpro Ambassador]

It can be a symptom of GCA, as can PMR.

This is an article about the research, initiated by PMRGCA Northeast, published shortly before Covid - so it rather got lost in the melee. GCA can cause hearing problems.

healthunlocked.com/pmrgcauk....

You need a decent audiology test - and I think these days those are farmed out to high street opticians, like eye tests.

[jennycat in reply to PMRpro]

this is really interesting, thank you. I also have had hearing loss in the opposite ear to the PT over the last few years. I shall book a hearing teat

[Bramble2000]

yes but mine isn’t related to Pred and is constant.

[Daffodilia]

I have tinnitus - found a hearing aid for that ear helped - probably best to go private (not Specsavers)

[Toolie2]

Two or three days after GCA diagnosis and after starting pred, I heard the shipping forecast on radio 4 and “Sailing By”. I had that music playing just behind my head for about 8 months. At first it was very obtrusive but somehow blended in when there was real music. Sometimes it surprised me with a variation and even introduced a tuba now and again.

Gradually it became quieter and eventually shortened to a phrase and then disappeared sometime this summer, 2 years after it began.

It wasn’t in my head or in my ears but somewhere behind my right shoulder so I assumed it was a steroid hallucination. I still have to check, when there is music playing unexpectedly, that other people can hear it as well.

I’ve been on 5mg pred for about a year so the music reduced with the pred.

[Optim11]

I had it along with jaw claudication and visual disturbances w GCA. It took several months to resolve fully. Found the following site interesting:whooshers.com/

[MiniSpec]

I've had tinnitus since the day after I took my first Prednisolone tablet. Mine doesn't pulse but sounds like a pair of jet engines, one in each ear, and revving at different speeds. I tend to notice it more if I'm tired or stressed, but most of the time I'm able to more or less ignore it.

I'm now down to 4mgs of Pred per day, but the tinnitus is still just as loud as it was when it first appeared 14 years ago when I was on 15mgs per day. If I ever manage to get off Pred (fairly unlikely at the moment!) I'm hoping that the tinnitus will fade away, but I'm not holding my breath on that one.

Reading other commentators here I see that GCA can cause hearing problems, and I've had GCA twice. However, it didn't seem to cause any problems with my hearing at the time, but over the last 3 - 4 years my hearing has deteriorated quite badly in the vocal range. I can still hear loud noises, and low noises, but normal speech has become very difficult to hear.

[PMRpro Ambassador in reply to MiniSpec]

Have you had a hearing test? It is also a component of aging unfortunately ...

[MiniSpec in reply to PMRpro]

Yes, several, and I'm due to have another at the moment. I even went so far as buying a very expensive (£1,200!) pair of hearing aids. But I had to give them back after less than a month as I discovered I couldn't tolerate having anything in my ear canals.

I've managed since by lip reading wherever possible, or by asking people to repeat what they've just said, but much more slowly. This seems to concentrate their minds as well as mine, and I'm able to get what they were saying then.

I've also noticed that I can understand what's being said easier if the person's voice is delivered through electronic means, so I guess that removing various harmonics helps.

The other thing I do is use my Sony sports earpieces attached to a small amplifier. I tend to use this to watch the TV, but otherwise I use the subtitles on the TV to help me keep up with the plot of the programme.

I think I've shown you in the past the hybrid hearing aid I've thought up. It consists of a Sony sports earpiece attached to a behind the ear hearing aid. I haven't tried to develop it as I've got a lot going on at home at the moment, and won't be able to devote any serious time or energy to it till next year, but I hope that it might help others if I do.

As you can see I've attached a picture of my idea to this post, and I've already registered the design, although I haven't yet applied for a patent, as the items it consists of already exist.

Left ear hearing aid design

[PMRpro Ambassador in reply to MiniSpec]

Oh yes - I remember now! That seems quite a reasonable price for hearing aids - must be about 9 years since we got my husband all-singing all dancing aids (at the time at least) and they were IRO £4K then! They did him well for 5 years but then it was obvious he wasn't hearing as well but in retrospect it could have been the final decline anyway and since I knew it was only a matter of time I didn't push for him to get new ones - at more like £5.5K, You don't get much state participation here unless you are registered disabled though by the second time he was but even then it isn't a lot. He hadn't worn his NHS aids because he couldn't tolerate the earpieces. No idea what might be different because he did wear them here.

[L8kside]

I also have pulsating tinnitus. The only time it’s prominent is when I lie on my right ear-and when the room is quiet. (I also have constant tinnitus in my left ear from brain surgery). The pulsatile tinnitus just randomly showed up. I use background noise to distract my brain from hearing it (usually TV is on or music etc). My cardiologist told me to stay well hydrated and it may improve some ( but I never lie on my right ear side)

[SVLady]

In February of 2024 I developed a "stuffy head" which progressed into pulsatile tinnitus, then a violent case of vertigo all while feeling pain in the backs of my thighs and buttocks(piraformis area). Doctors addressed the upper body concerns with scans, hearing tests, etc but sent me to PT for the thigh pain. Two weeks later I awoke with the classic shoulder pain of PMR. The only connection I thought of was a viral illness may have awakened the auto immune PMR response. The tinnitus resolved before I started on Prednisone and has not returned, thank heavens. Interesting others have had this as well.