Ear problems

[Saxsoprano]

Has anyone had trouble with their ears when reducing steroids for GCA. I had excruciating pain in both ears this morning but at the same time terrible chest pain. I was frightened I might be having a heart attack but exhaustive checks at A&E ruled that out . The chest pains is being investigated further as possible clot on the lung but no ideas about the ear ache. Anyone any suggestions? I am now on 3mg steroids and tapering. The doctor at A &Eileen doesn't think there's a connection with GCA or my steroid dose.

[jinasc]

Ears, the 8th Cranial Nerve is involved in GCA. It is a new piece of research.

ncbi.nlm.nih.gov/pubmed/314...

This was the outcome of research undertaken by PMR&GCAuk North East Support.

Published Dec 2019.

It might be worth seeing if your Consultants know about it, as it is new It can then be dismissed of involvement or not, as the case maybe.

[lesley2015 in reply to jinasc]

I read the report with interest and the comments re increased risk of tinnitus. I do have ear ache intermittently and also suffer from tinnitus and loss of hearing (I am just 60), the hearing loss is consistent with working/being in a noisy environment - which i haven't.

I just wonder if anyone has suffered constant tinnitus and there has been an improvement over time?

I fear not and accept any damage in my ear is probably permanent but would be interested in any other peoples experience .....

Chest pain .... I do suffer from costochondritis which causes chest, rib pain but as always get this checked professionally.

[jinasc in reply to lesley2015]

Yes, people who had never had Tinnitus, Vertigo, Loss of Hearing had complained in the past particularly when we started up a forum specifically for GCA and PMR. At that time the only other forum was Patient info which is well administered and contains hard information. The other forum was and still is a 'chatty one' and some of us became good friends and are still in touch.

When two people with GCA were diagnosed within two weeks, with the same Consultant, they both complained of sudden hearing loss. One patients hearing came back once on a high dose (60mg) within 3 days. The other took longer. When he looked up the figures, he found in past papers it was mentioned, but only hearing loss and that was at minus -2.

He came to a support group meeting and asked questions of those present. One of the ladies present was one of the patient who had lost it totally. He was my Consultant for 5 years. He was surprised at the meeting when I told him that I had lost 50% of hearing, it has never come back and I had not even thought to mention it to him. He was also surprised with the incidence of Vertigo, Tinnitus and Loss of Balance.

We decided this all needed to be investigated. It was and that paper is the result of the research. The outcome was that the 8th cranial nerve is involved. As I understand it loss of hearing is normally slow and not onset suddenly.

It will, sometime in the future, be added to the diagnostic procedure. Do not hold your breath, which is why we asked under the thread headed 'Your Ears' to print copies and take it with you when you saw your GP or Consultant or both. It is called 'spreading the word'.

All I can tell you is that some people reported that the Tinnitus lessened, in some it went away, the same for the deafness, some did not regain it, some did and some suffered partial loss. The vertigo, as far as I know, from the people who suffered at first with it, reported it went away slowly.

Mind I am not a medic at all. Sorry for the long explanation. I sincerely hope your symptoms clear up and go away for good.

[lesley2015 in reply to jinasc]

How interesting, and thank you for the reply.

I have been given hearing aids which reduce the tinnitus, and although they improve my hearing, they also distort it.

The person at the audiology dept. who specialises in tinnitus said many with my condition or other autoimmune conditions, often develop tinnitus, but as you said, GP's and consultant seem to be unaware and see no connection - to me it was too much of a coincidence! But as many on here I'm sure will agree, we are not always listened to.

For me the tinnitus has been as difficult to adjust to as the condition itself, my head often feels it will burst, but little acknowledgement or support seems to be available for this.

Thank you again at least now I have more understanding.

[jinasc in reply to lesley2015]

Yoou just might be interested in this.

warrington-worldwide.co.uk/...

[Blearyeyed]

Both the ear and chest pain could be linked to your GCA , especially if it has become active again and you are on a new taper , or if there is a possibility of a clot you may need treatment quickly for both the clot and to manage your GCA.

What treatment did they give you to continue at A and E?

Have they sent you home?

What tests did they do ?

Did they suggest an increase in your Steroids or could this cause an issue if you have a clot?

It does sound like you could do with some extra advice as soon as possible from someone whom fully understands GCA and whom can chase up your results and give you immediate treatment advice.

I would suggest you contact your Rheumatologists office in the morning , explain what has happened to the Secretary , and ask to speak to your own Rheumatologist or another Consultant that deals with GCA Patients from the Department via a phone appointment tomorrow as you need help and advice as soon as possible.

Take care , keep calm and rested , and let us know how things work out for you

[Saxsoprano in reply to Blearyeyed]

Thanks for your various suggestions. I have been given 5 days of blood thinners before having a scan early next week. I will ring my rheumatologist's office this morning for further advice.

[SheffieldJane]

It sounds like a virus/ chest and ear infection. That must have been a fright. You did the right thing, good luck with the further tests. On the other hand, I had awful chest pain and was taken to hospital. It turned out to be an Oesophageal Spasm - Paramedics were worried about a heart attack - it can produce similar symptoms. Let us know how you get on.

[YuliK]

Hi there Saxsoprano

Chest pains can be self induced. Worry and anxiety. I had it too.

Yes I’ve had a lot of ear problems.

In the beginning, 4 months ago, I had sudden hearing loss in my left ear. Blared vision and headache.

Right away I was examined by an audio neurologist ( ent) and put on 60mg of prednisone..I was already taking 5 mg of prednisone for PMR...over the period of 3 weeks I gradually cut back on the Prednisone to 8 mg. I was afraid of the drastic reduction the ent prescribed..then the ENT gave me cortisone injections directly through my ear drum. Deadening the ear drum first. Uncomfortable but I stayed focused, after all I didn’t want to lose my hearing.

After each treatment, I passed a hearing test. No change, in fact getting worse.

Wait for it... then I had 6 days of hyperbaric treatment. 2 hours daily ..( privately paid).

Still no change, but the headaches stopped.

In the end my ent ( audio neurologist) said, as he had tried everything, he advised head MRI ...to cancel out any growths or tumours inside ...did the MRI and all was fine. So now waiting for another hearing test and hearing aids.

I’ve been blessed with a punctured eardrum, from the injections 😩but that will heal with time 👍

In the meanwhile, I was Sent for an ultrasound of my head vascular system. ( by my rheumatologist )suspected GCA

All good.

Because of my past history of fibro sarcoma, I was sent for a full body CTA ..

Again all ok...

Now the funny thing I’ve noticed, is that I don’t feel any PMR pains whatsoever ...

I’m still on 5mg prednisone , feel extremely tired, but those morning pains have disappeared.

Before my hearing loss, I found it difficult to bend down or pull myself up from the bed each morning. ( I was then on 5 mg prednisone)

I would suggest that any hearing or ear problems, you get along right away and get it checked.

Like myself, it may need immediate treatment.

Last week, went to an eye specialist. I have cataracts on both my eyes. Prednisone induced.

Waiting to operate ...

So I can honestly say, my PMR journey hasn’t been without trails and tribulations.

Just hang in the fellow sufferers, there is an end to all your aches and pains. ( just rest, and don’t over do things ).

Sorry for this long post, so much has happened to me since last October. Don’t give up.

YuliK 76 + 10months. 🌹🌹🌹🌹

[Hellyowl]

Since GCA 4 year ago my ear on my GCA side gets tender inside and a bit achy. Usually if I am a bit unwell. I got slight hearing loss and a bit of tinnitus in it too since GCA. But it doesn't bother me and I see enough doctors for other things so I haven't done anything about it as it doesn't bother me.

[PMRpro Ambassador]

I have to say I'd be surprised if the excruciating pain was GCA - although if it were a clot causing it it might be.

But do I understand you correctly: they are querying a PE (pulmonary embolism) but have sent you home? Did they do blood tests for that (the basic test is called d-dimer) or do any scans immediately?

[Saxsoprano in reply to PMRpro]

Yes they did 2 blood tests 3 hrs apart. All tests ECGs etc were normal so taking blood thinners before a scan is just in case as they are puzzled.

[PMRpro Ambassador in reply to Saxsoprano]

That was probably for troponin and looking for a heart attack. D-dimer for DVT is a different test.

[Saxsoprano in reply to PMRpro]

Have just looked at their report which states"Troponon negative, d-dimer raised. ECG showed no changes. Treatment dose clexane given and for outpatient V/Q scan to rule out PE. "

This probably makes more sense to you than to me!

[Hidden in reply to Saxsoprano]

By looking at Dr Google.... PE is Pulmonary embolism so I presume they are sending you for a scan to see. The drug clexane is an anticoagulant to thin blood just in case. No heart attack re Troponon negative results.

[PMRpro Ambassador in reply to Saxsoprano]

Makes perfect sense - I was right in what I suspected.

How are you getting on with the injections? OH gets them every so often and it is my job! When I have them I do my own ...

The V/Q scan is a radioisotope scan to look for a pulmonary embolism - used to do them in OH's department in Durham.

[Saxsoprano in reply to PMRpro]

Doing the injections is fine. I'm having the scan this afternoon so they aren't wasting any time.

[Jackoh]

Obviously a lot more going on for you with chest pains but as far as ear ache is concerned I do get ear ache off and on when I taper. Not awful but there. (GCA since 2015/16 PMR2014/15 at present 11 mg)

[maria40 in reply to Jackoh]

On my last flare of GCA (at 6.5mg pred) I had acute shooting pains in both ears. Had had mild earache before but this was very painful. Have had to go up to 15mg now down to 13.5.

[Jackoh in reply to maria40]

😘x

[Odosmum]

I don't what to frighten you but, last week I twice experienced earache - pain going up either side of the jaw and into my eardrums. This was accompanied by a terrible burning pain in my chest at the level of my breastbone. Long story short, ecgs showed I had had a heart attack (or 2). I was admitted to hospital and was given an angiogram, they explained that if I needed a stent, it would be done at the same time. Another long story short, while they were doing the procedure, it all started up again. They told me at the time I was having another heart attack and that my artery was spasming, affecting the nerve which goes up to the ears (they could see it all happening on the xray machine). By no means did I have typical heart attack symptoms at all. Apparently spasming ateries do not usually lead to a heart attack - in my case it did, 3 times. Please bear in mind that women's symptoms are not necessarily the same as men's.

[Saxsoprano in reply to Odosmum]

Thanks for telling me of your really appalling experience. That was exactly what was frightening me. However I was tested extensively and there was no sign of a heart attack but a nuclear medicine scan showed pulmonary embolism in lower right lung. I'm being treated with apixaban blood thinners to dissolve the clots and paracetamol for the pain. I'm still pretty uncomfortable but hope my GP may have an idea about a better but still permitted pain killer.

I hope you make a good recovery from your own trial.

[PMRpro Ambassador in reply to Saxsoprano]

My husband is on cocodamol for his pain - i.v. paracetamol was fantastic but only available in hospital, oral paracetamol did little, cocodamol is good but not perfect he says.

[Saxsoprano in reply to PMRpro]

Thanks for sharing your husband's experience of co-codamol. I've just been prescribed some medium strength and told if not strong enough I can have 30/500 strength instead so hopefully I'll get sorted soon.

Xx

[Odosmum]

Thank you. The blood thinners will also help if there are any hidden heart issues that have not emerged. I think what I really wanted to highlight is that sudden onset earache in both ears is not necessarily a trivial symptom in anyone - I mean earache, for goodness sake - and even with the GCA link, should be followed up and not endured. Best of luck to you, Saxsoprano.

[PMRpro Ambassador]

Had you noticed this thread is over 3 years old? You would be far better starting a new thread as only people who followed this thread will see your question. And when you do post, add a bit more info - where exactly, is it down the side of your neck too? What dose of pred, have you recently reduced - that sort of thing.

Could it be this

physio-pedia.com/Sternoclei...

The upper attachment is behind your ear but the discomfort can reach right down to your collar bone.