Has anyone else who has GCA had tinnitus symptoms?

[merril]

Newbie with as yet unconfirmed PMR/GCA. Phone call with GP on Monday and want to bring this up with her since she insisted on second lot of blood tests even though first tests showed ESR and CPR were elevated, but fairly low.

[SheffieldJane]

Hello merril,I have had intermittent mild tinnitus now and then which may or may not be linked with my GCA.

How are you?

Your doctor does seem to be dragging her feet in what should be regarded as a medical emergency. Speedy treatment is of the essence with GCA.

[merril in reply to SheffieldJane]

I agree with your last paragraph and had decided to be proactive about continuity, so talking with the same doctor for the second time! 👍

[SheffieldJane in reply to merril]

Good luck with that. Let us know how you get on.

[brambles22]

Yes, I've got GCA(6 months) Tiinnitus noticeably worse(had it prior to GCA).

[Frewen1 in reply to brambles22]

Ditto and ditto

[SnazzyD]

About 18m before GCA diagnosis is had unexplained reduction in hearing on my right side with development of tinnitus. I had a hearing test and whilst a reduction could be seen, the GP said it wasn’t enough to warrant investigation. My intermittent sight problems came in much later.On the day of diagnosis with rapidly increasing GCA symptoms my CRP level was low and my ESR was raised for me but still within normal range. Normal markers can happen with 20% of people and as such I was treated with high dose Pred anyway because my symptoms were so compelling.

[merril in reply to SnazzyD]

I am hopeful hat I will remember all of this for Monday's phone call👍

[merril in reply to SnazzyD]

Hi Snazzy. I was re- reading your earlier post about 20% of people within normal range markers... On Monday I forgot to say this to GP, but on reflection decided that this was probably as well, because the present markers were even lower than the last two tests (which were raised). Any ideas if others might have had this experience? Perhaps I should be grateful that she supports my seeing a rheumatologist next week?

[jinasc]

Follow this link and you will find the answer to your question re Tinnitus.

As this research was just published 2019, it is quite possible that your Consultant is not aware that the 8th Cranial Nerve is involved.

You could either print it and take it or send the link.

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

[merril in reply to jinasc]

My thanks for the info, I am so grateful.👍

[Fifegran in reply to merril]

I was referred to a consultant recently when I mentioned I had developed tinnitus in left ear only. After a hearing test, which showed no hearing loss, the consultant told me that one in every 200 people have a cyst on a nerve which is deep in the base of the brain. He said there is nothing they can do about it, just keep an eye on it, but it can be the cause of one-sided tinnitus. The only way they can know if you have it is by an MRI scan, which I am having next week. I asked if long term steroids could have anything to do with this, and he said no. I don’t have GCA, I have PMR, but thought this was interesting. Personally I wouldn’t be surprised if the tinnitus is caused by stress! He agreed this was a possibility.

[merril in reply to Fifegran]

So pleased you are having your MRI scan. I have been waiting 10 months for mine (related to the fact that I have a pacemaker and require adjustments at the time of an MRI) I guess staff get deployed because of Covid 19.

[AliDeJ]

Hello, Yes, I had tinnitus when I was on higher doses of steroids for GCA, and some hearing loss. I was checked out by audiology and they said my ears were fine, regarding hearing ability, but perhaps my brain was not processing sounds properly. Strange! As the Prednisolone dose lowered the tinnitus went, thankfully.I hope your worries are resolved soon.

AlideJ

[FRnina]

I have had PMR/GCA and am nearly off steroids after nearly 4 years (0.5 and tapering with fortnightly Tocilizumab injections). I have tinnitus which I have only noticed in the past year. So I mentioned it to my GP and she said there is little that can be done. Thanks JINASC for the link about tinnitus research. Although I'm beginning to think this is something I must learn to live with. (actually it only bothers me when I think about it i.e. if I'm preoccupied I don't notice it).

[Rugger in reply to FRnina]

That is definitely the way to deal with tinnitus - try and forget about it, as it won't go away!

I had tinnitus before PMR and GCA-LVV, but I'm sure it's worse these days.

[Reddev]

Hi I have had GCA for two years now and whilst I have had tinnitus all my life it is much worse now. I’m just so grateful that my hearing aids really help calm the noises in my head.

[Matt_Finish]

I have had mild tinnitus for about 30 years. Last year I had lots of low level bouts of earache, the first since childhood, which lasted for several days. I now believe that this was the first sign of my GCA which was diagnosed in October. Since then, instead of being evident only in the quiet of the night, the tinnitus has become a significant noise during the day when I am not actively concentrating on something. Whether it is the disease or the steroids I could not say but, at present, it is a mild irritation rather than a disruption of daily life.

[merril in reply to Matt_Finish]

I have as yet, unconfirmed PMR/GCA and found that when I woke after sleeping on my back I would hear 'bells in my ears'. Thought at first it was the local school that is close to my house, but one ear was painful and I can't use my hearing aid in that ear. Also found that the school doesn't have a bell lol. Mystery solved in later helpful replies. Tinnitus and 8th cranial nerve! Will mention this tomorrow in my phone call with GP. I now try to sleep on my side.

[Matt_Finish in reply to merril]

I sometimes wake in the night and think that it is raining heavily only to realise it is the wretched tinnitus. During the day it is a continuous high pitched whistle.Good luck with the doctor.

[merril in reply to Matt_Finish]

I'll accept all the luck I can get lol. From past experience I have learned to trust her, but difficult to get an appointment with her at short notice

[GratefulBailey]

Yes, intermittent tinnitus since I’ve tapered below 5mg (at 3 mg now) for me. I don’t know if this can be from my GCA or if there is a hereditary component as my mother had it (used a sound machine at night for relief) and now my (adult) daughter has it as well. She is using an app to drown out the noise when she goes to bed (worse when it’s quiet of course). She said the app has been a life saver....I can post the name of the app once she returns my text!

[GratefulBailey]

App for tinnitus is called Resound.

[SpydaV]

Hi Merril,

I had GCA from late 2018 and continued with Prednisolone until Jan 2020. My tinnitus started about 2/5 days after I started a "heroic" dose of the steroids (60mg for 2 weeks). This was accompanied by tingling/numbness in the toes and balls of the feet and a sensitivity of the teeth. Although I came off the treatment nearly a year ago the tinnitus, numbness and sesitivity have remained. The tinnitus is not the normal type of tinnitus. Normal tinnitus usually reduces in volume when there are other noises present but this is a constant volume no matter how much other noise is present, although it does go up and down in volume on different days; it's more like an ambient "white noise" of the type that you might hear from an old type of TV tube. I originally came to the conclusion that the peripheral symptoms I was experiencing were the result of nerve damage caused by the steroids. If you have not yet taken any steroids then maybe I'm wrong and the symptoms are a part of the condition. Every doctor I've spoken to has tried to reassure me that the steroids are not the cause of these symptoms. They do, however, follow the script written for them by the Big Pharma companies in an attempt to mitigate and reduce any chance of being accused of selling you poison, so who knows? Doctors also seem to be rather reluctant to diagnose GCA due to the large doses of steroids involved (they are always thinking "court case") but you need to push as hard as you can for treatment as this is a very serious condition. I wish you and all the other sufferers here of both GCA and PMR a speedy recovery and hope that some other form of non debilitating treatment can be found. Good luck!

[VicSat]

I first realised I had tinnitus during lockdown. Going to bed the usual sound of planes flying overhead. It took a bit of time before the penny dropped. There are no planes flying anywhere!

[merril in reply to VicSat]

Hi VicSat. rather like you I found bells ringing , not every am, but when I slept on my back. and thought they were coming from the local school. With the info from the pro here on the forum I now accept that the 8th Cranial Nerve at the base of my skull may be the culprit. However this led me to considering that I might have GCA. My GP did not accept all the symptoms suggesting PMR/GCA even although my ESR and CPR were elevated on the first two blood tests, probably because the third test showed them within normal limits. I asked for a referral to a rheumatologist and see one f2f next week. Had to go privately though. Hope you can get some help soon.