Worse tinnitus and some head pain

[Mstiles]

Hello everyone,

Can tinnitus be a symptom of a GCA flare?

I woke up a few weeks ago with loud roaring tinnitus, I thought something was going on outside it was so loud. It seemed to be worse in the right ear. It has calmed some but is still quite loud at times. I’ve had tinnitus for quite a long time, also worsening hearing in that ear and been diagnosed with age related hearing loss. 3 years ago I was diagnosed with GCA/PMR and started with 40 mg pred I didn’t have visual symptoms and my head pain was at the occipital area instead of the temples. I’ve had PMR flares but not GCA ones. I’m now at 9 mg, I haven’t managed to get below that.

My vision now seems somewhat blurrier, especially after being on my phone, but dry eyes have been worse lately so don’t know if the blurriness is related to a GCA issue. I’m completely tired.

This all seems to have started when I bought a car several weeks ago I had been without a car and not driving for two years. I hadn’t realized how much function I’ve lost in two years and driving has been very stressful, not freeing as I’d hoped. I just take short trips in the neighborhood, slowly, no freeway driving of course , I’m waiting on cataract surgery before doing anything complicated. This has been very stressful and I’m wondering if it has brought on a GCA flare. The tinnitus seems to get worse when I’m stressed. I don’t have family support to help me with this and with health issues. I feel completely alone with my health problems. My rheumatologist is pretty useless.

I have an appointment with a new opthamologist next Thursday.

Of course I’m worried about the head pain, it seems to be where I had the original pain, the occipital area mostly on the right side. I saw my dentist last week to check on an upper tooth that was painful. An X-ray showed no infection. Some of you may remember me posting awhile ago about extreme back pain that included the neck which turned out to be caused by muscle spasms because of worsening scoliosis. So hard to figure out what’s causing what when pain appears and there are multiple issues.

Thanks for reading this tome.

[jinasc]

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

Patient-reported involvement of the eighth cranial nerve in giant cell arteritis

Vadivelu Saravanan 1 , Susan Pugmire 1 , Mavis Smith 1 ,

Quite likely your medics have not seen this as it came out just before Covid.

Suggest you download, if possible, and take them a copy.

The research project Your Ears is in the FAQ section here is the link

healthunlocked.com/pmrgcauk....

[Mstiles in reply to jinasc]

Thank you so much jinasc

[cycli]

yes I think it may be. When I flared and my GCA symptoms were raised then the tinnitus was very bad. mostly I don't sense it because it has become normal background.

[DorsetLady PMRGCAuk volunteer]

Do hope you get it sorted -and would imagine the stress of taking up driving again after 2 years and waiting for cataract operations has not helped.

Hopefully the ophthalmologist can hurry the cataract ops along if they are causing issues -blurriness could be that as well as Pred.

[Mstiles in reply to DorsetLady]

Thanks DorseyLady

[Nextoneplease]

Hi Mstiles 😊

Yes, as stated by jinasc above, tinnitus can be a sign of a GCA flare. However, it can also be related to stress and any number of other things.

Glad you have an ophthalmology appointment next week, and hope this proves reassuring.

I am wondering whether the head pain could be related to the stress and tension of taking up driving again after a couple of years? Could even be related to muscular tension or changes in posture? Especially as you are aware of blurry vision and are awaiting cataract ops.

If your symptoms worsen then do seek urgent attention. Otherwise I hope the ophthalmologist is able to help you.

All the best xx

[Mstiles in reply to Nextoneplease]

Thank you for the reassuring words.

[Smithie49]

Reading this was similar to my own story - dry eyes (actually dry everything!!!), tinnitus def worse if stressed then sounds like a lorry outside, recent back pain dealt with by a great physio who found I had a very minor scoliosis. I'm 73 and that has only just been found although I've had intermittant muscle spasms on my left side throughout my life. My PMR started last year when I was very stressed. Before taking pred I had severe pain under my occipital lobes both sides which made moving in bed difficult . On my recent eye test I was told my cataracts had not got worse. This was the first time I'd ever been told I had cataracts!!! I get some blurred vision but not always.

[Mstiles in reply to Smithie49]

Thanks for sharing your story Smithie. Always some body part to deal with!I knew about the scoliosis because of a more prominent rib cage on one side but it seems t to have gotten worse. Physical therapy is on “the list” of things to deal with.

My first priority until this came along was trying to get the cataracts fixed. Yes the occipital pain and tinnitus feels different. How was your flare finally diagnosed? What doctor figured it out? We’re you put on raised pred?

[Smithie49 in reply to Mstiles]

My friend suggested my initial pain and stiffness could be PMR then I did loads of research. My GP wouldn't prescribe steroids as my bloods were high but within the 'normal' range. They gave me amyltriptolin for the pain which I never took. I ended up taking my granddaughter's 4 yr out of date prednisolone with instant success. Then a GP listened. Have since seen a rheum who upped my dose from 5mg which was not getting rid of my neck stiffness to 20. This for 10 days, then 5 mg reduction every 10 days and now reducing 1mg per month. On the higher doses I felt like I'd been oiled!! Now on 8 and gave some neck stiffness again but very bearable and I'm exercising it daily to keep mobile. I speak to rheum again in a couple of weeks so will see what she thinks. I'm seeing a GP next week to try and get a bone density scan as I do not want to take more meds especially as I have reflux but I do not want to risk fractures. I hope this one listens 🤔. Good luck with your cataracts and I'd thoroughly recommend a physio if you find ine as good as mine was.

[Mstiles in reply to Smithie49]

Yes physical therapy is definitely on my list once I get the eye issues sorted out. Good for you for getting results from doctors and persisting in taking care of yourself. Not always easy!

[pinks33]

I was in remission from GCA for seven months until recently when I was diagnosed with a flare. One of the symptoms which alerted me this time was hearing loss and tinnitus. This was definitely the one symptom that bothered me the most and still does, though it is improving gradually. I did have a headache, but it didn't feel sinister, and like you it was wasn't temporal. But it was the weird fullness in my ears that I knew wasn't normal. Also like you I thought at first the noise was external it was so intrusive. I have a GP appointment next week, hoping for a hearing test with an audiologist, but fear the waiting list will be too long so am considering going private. I mentioned my hearing problem to my rheumy and presented her with a summary of the charity's report into the link between GCA and hearing loss - she said she had no previous experience of ear issues with GCA. Another rheumy who frustratingly isn't particularly into GCA! The first time around with GCA I did also have severe hearing issues after a period on pred which did normalise, but with a residual loss of hearing in one ear. At the time I put this down to pred, but since learning more on this forum about the link between GCA and hearing problems it was more likely to be a function of the GCA. We just need to be really vigilant, because symptoms of GCA do go beyond the standard temporal headache, jaw claudication etc.

[PMRpro Ambassador in reply to pinks33]

Specsavers provide free hearing tests - you don't have to wait for a hospital appointment

[pinks33 in reply to PMRpro]

Have booked a test with them, which is free, just in case the NHS waiting list is too long. But their hearing aids are private, not NHS, and could cost thousands.

[PMRpro Ambassador in reply to pinks33]

Wasn't an option for my husband - no "NHS" hearing aids here that I know of so it did cost thousands. But they worked and he wore them - which was more than could have been said for the ones he got in the UK from the NHS!

[Mstiles in reply to PMRpro]

Is specsavers in the UK? I’m in the US

[PMRpro Ambassador in reply to Mstiles]

The Specsavers I referred to is in the UK although it has a multinational presence in 10 countryies - some European and Australia and NZ.

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

Not in US -but are in Canada, parts of Europe, NZ & Australia.

[Mstiles in reply to pinks33]

Thank you for your detailed reply Pinks. I’ve had worsening hearing problems for awhile and also have a clueless rheumatologist. Who eventually diagnosed your problems as a GCA flare, and what’s tests or exam did they base it on? Did they prescribe more pred?

I feel so discouraged having to deal with different doctors, ….ENT for hearing, ( no appt. Available for 6 weeks), rheumatologist, (haven’t seen her since last summer), and my GP, who’s been subscribing my pred without questioning me about tapering - she has no experience with GCA.

I feel something is off but feel too tired to fight the battle with medics.

[PMRpro Ambassador in reply to Mstiles]

GCA is usually a clinical diagnosis - based on symptoms. And ear problems can be part of GCA as the paper jinasc refered to explains. Just because a doctor hasn't come across it doesn't mean it doesn't happen!!!

[Mstiles in reply to PMRpro]

So I guess getting an answer or diagnosis with this involves the usual battle with the doctor, trying to get them to read material you’ve brought them, etc.

[PMRpro Ambassador in reply to Mstiles]

Depends on your healthcare system probably - the USA in particular does appear to have a few holes in it!

[pinks33 in reply to Mstiles]

I went to A&E after struggling to get a GP appointment to authorise a blood test for CRP and ESR. A&E diagnosed a GCA flare/recurrence from the CRP and ESR, full blood count and other blood test results. My ESR was 49, and CRP OKish at 11. Apparently a high ESR reading is particularly relevant in diagnosing GCA. I spent most of the day in ambulatory care at A&E and it was well worth it. They were really caring and thorough and took time to explain the blood test results. They gave me two weeks' worth of pred at 40mg per day to start me off, my GP authorised repeat prescriptions, and I am basically following the NICE recommended program for pred tapering. You may find different variations of this taper online, as no size fits all they say. I got an appointment with my rheumy after three weeks, but she had nothing useful to add other than to agree the tapering program. Please let me know if I can be of any further help.

[Mstiles in reply to pinks33]

Thank you. EDR is sed rate I guess.

I will ask for a complete blood count, my GP should do that. Sounds like you have a great A&E!

[pinks33 in reply to Mstiles]

Erythrocyte sedimentation rate (ESR). Good luck.

[Nextoneplease]

“Too tired to fight the battle with medics” is exactly how I often feel, Mstiles. I wonder whether they realise how exhausting it all is? But we mustn’t give up! Follow up your symptoms and then give yourself a break. Maintain the balance.

Take care xx

[Mstiles in reply to Nextoneplease]

💖❤️

[cycli in reply to Mstiles]

Ilost nearly all hearing in right ear. Was eventually tested and given NHS hearing aids but no one thought to test for GCA. that was a year before being diagnosed. I totally understand the "feeling full sound in head experience" . I have recovered some hearing in the ear and don't use the hearing aids as I am trying to adapt to working with what I still have and hoping for more eventual improvement. Tinnitus doesn't help and gets more intrusive the more tired I get.

[Mstiles in reply to cycli]

Yes, the full head feeling. I’ve also noticed that sometimes position of the head seems to affect the tinnitus. Thanks for sharing your experience cycli. Glad you’ve recovered some hearing, hope improvement continues for you.

[cycli in reply to Mstiles]

thank you. the right ear responds differently, a slightly hollow echoing reverberating experience and the range is different so a little confusing when listening to blend the two interpretations. When you think what the brain is doing to try and reinterpret what it now has to what was it is miraculous really. This whole journey so far through PMR and GCA has been such a learning experience and despite the pain and debilitating nature of it and the ruination of expectations I am gaining knowledge and empathy and still hopeful that I can rebuild some of what I used to enjoy if less extreme. I am certainly not the same person who contracted this condition. I'm actually looking forward to discovering who I will be at the end of this journey.

[Mstiles in reply to cycli]

It certainly has been a learning experience. I have had to learn to be more assertive about my care, still not as strong as I like but have had to deal with my fear of doctors, so that’s a good thing. You are amazing for seeing the plosive in a difficult situation!

[cycli in reply to Mstiles]

You shouldn't fear Doctors. Firstly, they wouldn't have a job if you were not ill. That is key. Their living wage is totally dependent on your health. Secondly, be clear about what your symptoms are and make certain they have understood what you are saying. They need to demonstrate they have taken that on board.