Tinnitus

[Lyndaki]

Hi, has anyone had a problem with tinnitus whilst having PMR/GCA &/or on Prednisolone? I’m a long term sufferer but only very mildly but recently it’s been quite pronounced & I wondered if there was a connection. TIA

[SheffieldJane]

Yes. I feel that there must be a connection. I have had it on and off throughout. Sometimes quite marked other times very slight and short lived. I did assume that it was Pred related. Now that I have learned of the connection between forms of GCA and the ears, I think I should perhaps have mentioned it. There is always so much to report. I have a relatively recent diagnosis of LVV/GCA.

[DorsetLady PMRGCAuk volunteer]

It is mentioned on here quite regularly - see related posts - and if you already have it, I guess it’s bound to be escalated.

[jinasc]

Follow this link to this paper issued 2019.

Patient- Report Involvement in 8th Cranial Nerve.

link.springer.com/epdf/10.1...

[PMRpro Ambassador]

Pred can cause tinnitus - but as already mentioned, so does GCA.

healthunlocked.com/pmrgcauk....

has the easy description included.

[Lyndaki]

Thank you all. Very useful info as always!

[Bcol]

Mine has certainly got worse since the joys of Pred and PMR, not permanent but definitely increased. I'm mildly deaf and have hearing aids and the tinnitus does go way when I wear them. OK, funny story story to amuse you. Went to shops a few weeks ago, rare experience at the moment, and on returning home I realised a few hours later that I only had one iad in. I realised that on removing mask I had inadvertently thrown mask and attached hearing aid in bin. Embarrassing phone call to hearing aid dept and large bill to replace. I got a pair rather than the one I lost. Two weeks ago managed to do the same thing again, fortunately the one I lost matched the spare one I now had at home. Moral of story is get a mask fitting that takes account of hearing aids or don't wear both mask and aids together. Peter

[PMRpro Ambassador in reply to Bcol]

There are advantages to the washable reusable variety! OH does that all the time - but having reusables means he doesn't chuck them away!! Wouldn't like the bill for replacing his ...

[Bcol in reply to PMRpro]

Fortunately mine are nhs ones so I didn't have to pay anything like full price. Don't wear them out anymore.

[PMRpro Ambassador in reply to Bcol]

Himself never wore his NHS ones - too uncomfortable to justify the small improvement. These are all singing all dancing - but they are not covered by the NHS equivalent here. I think his disability is enough to get about a quarter reimbursed now though.

[Bcol in reply to PMRpro]

Thankfully my hearing loss is so marginal I've not had to think about others. Have to say I'm sure that often I can hear better without them.

[PMRpro Ambassador in reply to Bcol]

He said that with the NHS ones! He has severe bilateral loss because of chemotherapy 25 years ago. But he is still alive!

[Mychis in reply to Bcol]

Yes I’ve nearly lost my aids on several occasions but found them on the floor wherever I removed my mask ! Now I DO NOT wear masks that go behind the ears !!

I wear ones where the elastic goes over my head to my neck and then pull it up over my mouth and nose !!!

[Mikb]

I got tinnitus alongside GCA. It has never gone away even though I’m 7 months off pred.

[PMRpro Ambassador in reply to Mikb]

Like loss of vision - once the damage is done it is too late. Nerves are very unforgiving and don't heal well.

[Fifegran]

I was, and still am, on 2mg prednisalone when my tinnitus started although it’s only in one ear. I mentioned it to the doctor who referred me to ENT at local hospital, according to him “they get quite excited when it’s only one ear”?! Appointment has come through for 23rd October to access my hearing. I don’t really understand it, my hearing is very good and the tinnitus just comes on at night, or when I’m stressed. Also have headaches.

[Lyndaki in reply to Fifegran]

I think my increased tinnitus is due to stress as well as the GCA...I’m selling my UK house, moving to Spain, & have bought a park home here as a bolt hole so lots going on!!😱😂

[cool4bob]

Hi Lyndaki, I have had intermittent Tinnitus for many years however since being diagnosed with GCA and being on preds since July 19, my tinnitus has been constant, so there is a connection

[Lyndaki in reply to cool4bob]

I thought as much thanks!

[Pome]

I have also had Tinnitus for years, had a hearing assessment three months ago and had 32% hearing loss in both ears, which was not much of a surprise after spending the last 30 years in ships engine rooms. Noticed tinnitus getting considerably worse over the last 18months so I thought it may be GCA or Pred related. Started wearing hearing aids and with the background noise I can hear now Tinnitus 70% less, my wallet was too, not bloody cheap.

[Loopy65]

That’s really weird!! As I was attempting to fall asleep last night I had resolved to post a question about exactly this!

I’ve always had phenomenal hearing but over the past month I suppose at night in particular I’ve noticed a sound like a car engine left running outside.

In the past it’s been that, yes, I’m hearing stuff that’s a long way away and eventually I get other members of family to agree there is something!

This time, however, they insist there’s nothing - even my 16 year old who also has phenomenal hearing - so it’s down to me!

It’s there most of the time but more pronounced when I’m lying down. It’s really quite unsettling and probably more so because I’ve always appreciated the silence that comes with nighttime.

I’m really hoping it’s temporary and will go away if/when I can get off the Pred. I’m on 5mg at present.

[Lyndaki in reply to Loopy65]

I’m on 5mg too & mine’s like a throbbing buzz! It’s usually there very slightly but has been much worse this week, but as I mentioned in reply to another member, I’ve been chasing my tail all week & a bit stressed! So that could be what’s made it more pronounced!

[agingfeminist]

I have also had intermittent tinnitus since PMR/GCA diagnosis in November 2019.

Never had it before.

[Hidden]

my tinnitus started in the 1970's in the right ear, 1000hz to be exact. Since started on Pred I now have it in both ears. ENT gave me NHS aids and I love them, only take them off at bedtime which is always the worst time as there is little background noise so you hear it more.

Whether my tinnitus recedes whenever I hopefully come off Pred only time will tell.

[Kath567]

Tinnitus started for me years before PMR in my late 40s. I wear hearing aids. I was told the tinnitus was related to hearing loss. I have sensineural and likely inherited it. The tinnitus is there every day but thankfully I do not pay attention to it and it doesn’t affect the quality of my life although I know it can be awful for some. I didn’t notice any change while on prednisone. The hearing aids have no effect on the tinnitus, it’s there with or without them.

[Loco99]

I’m another one who can join the tinnitus club. It started around the time I was diagnosed with PMR and a very unsympathetic ENT said there was no connection and it was caused by hearing loss. I beg to differ. Mine gets worse when I have a blocked nose and sinusitis. Sometimes it almost disappears but it always comes back again. I did try and work out what was causing it by making a daily list of things that could have aggravated it but there didn’t seem to be any sort of pattern. I’m always very grateful when it subsides a bit.

[PMRpro Ambassador in reply to Loco99]

Dear me - obviously ENT doctors need to be copied in to the 8th cranial nerve research ...

[Broomser]

I was diagnosed with PMR / GCA and leading up to my diagnosis I went to my GP as I was having chronic headache and pretty severe tinitus. 20 months after being diagnosed with GCA I still have the same symptoms. Even with pred, it is no better. I dont think it is related to PMR/GCA, but it is interesting to know what the forum members have to say on the matter.

[PMRpro Ambassador in reply to Broomser]

As with the visual loss in GCA, once a certain degree of nerve damage has occurred it is less likely to reverse. But there are other causes of tinnitus and headache besides GCA - so maybe they are missing something?

[Broomser in reply to PMRpro]

I have had a nerve conduction study and they picked up sensory nerve damage. Waiting for follow up appt with neurology since Jan. GP has prescribed low dose Amtryptaline for nerve pain. I think it might be Cervicogenic headache with tinitus. I am leaning away from GCA/PMR/Pred related.

[Alchemy8]

Tinnitus has come up in my therapeutic researches. In Chinese Medicine the ears are linked to the kidneys and tinnitus to lack of Kidney Essence which makes sense with the effects of Pred and also the stressors that generally seem to trigger PMR/PCA. So lots of TLC for the kidneys - rest, meditation. It has also been linked to early childhood trauma - having to keep on high alert in a difficult environment.

[sondya]

Years of loud music and tinnitus was bound to be the consequence. Constant, like a couple of cicadas in the ears. Not sure if there was an escalation during GCA and PMR. Irritating, but background music is a helpful distraction.

[chillipeppergirl32]

Yes , I get tinnitus in my right ear it comes and goes . Definitely since having PMR and taking Prednisolone.

[PMRpro Ambassador in reply to chillipeppergirl32]

Was it there PRE-pred though? It can be an adverse effect of pred.

[chillipeppergirl32 in reply to PMRpro]

No , I didn’t get it before taking Pred .