I posted 2 weeks ago about problems with my ears and the possibility of a flare. My tinnitus has increased along with a reverberating echo sensation when I speak and a sensation of fullness. My hearing has also become much worse, especially in my right ear. I have some various brief episodes of pain in the right temple when stressed or on my phone too long. These symptoms vary in intensity.
I also have pain in the joints, both shoulders, both arms extending into the wrists and middle fingers at times, plus fatigue.
I called the ENT who set up an appt. with the audiologist. She tested the ear pressure and my hearing, looked at my eardrums, and said there was no change in my hearing, so the ENT said there was no reason to see me.
I had a previous appointment with him in three weeks and we said we could discuss it then.
It’s been two weeks since the audiologist visit and I have more joint and muscle pain and more inability to hear. There’s no opportunity to be seen earlier as they “squeezed me in” and are scheduling 6 weeks out.
I don’t understand how my hearing tested fine when I definitely can’t hear as well as before.
I’m thinking of increasing the pred by 5mg, I’m on 9mg at present, and see if that helps anything. I wanted to see if there was something going on with my ears, maybe an infection or something else before I increased the pred. I don’t have a rheumatologist at present and my holistic MD is prescribing my pred.
Diagnosed in 2019 with PMR/GCA.
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Mstiles
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Not sure how your hearing test can be fine either- have a look at this excerpt from a study on involvement of the eighth cranial nerve in giant cell arteritis
Cranial nerve palsies are well recognised as complications of GCA but these most commonly affect the nerves responsible for eye movements with third and sixth nerve palsies most commonly reported . A good response to steroids is usually providing the diagnosis is made promptly.
Our study has demonstrated that involvement of the eighth nerve is also not infrequently reported among patients with GCA. Deafness and tinnitus were the main symptoms reported by our patients and each occurred in over half of patients with GCA.
These results are very similar to those reported in the one published prospective study in this area which showed similar prevalence figures for deafness and tinnitus . This reported symptoms of unilateral or bilateral hearing loss, vertigo and tinnitus. Subjective hearing impairment was recorded in 64%, 52% had vertigo and 50% had tinnitus. The symptoms of vestibular dysfunction were reversible in most cases following steroid therapy, while only 27% of GCA patients had hearing improvement after 3 months of steroids.
Full study is here if you want to read or pass it on to medics - and with input from the UK based Charity if it’s met with a huff! -
This might not be relevant at all but thought I’d mention it. I’ve had to children with severe ME. Both could not hear properly. Whenever they had hearing tests they were always normal. It was incredibly frustrating. I think their tests are a bit rigid and only test for certain loss, if that makes sense? In the end I put my kids hearing loss down to a processing issue. All the best to you.
extreme ear pain was part of my initial GCA diagnosis in April’23. I’ve suffered tinnitus ever since beginning steroids. I’m now down to 5mgs but have frequent ear pain and feel as if I’ve lost partial hearing in my right ear. My inflammatory markers remain stable but my body is surely unstable. I’m going to bring up my hearing loss/ear pain next time I see rheum. In other words, I’ll add it to the list of my problems. But I feel as if no one can help me. My rheum will just flutter about and recommend upping the dose on Lyrica or trying Gabapentin. Bottom line, no one knows what the H*ll is going on.
I should have said, I’m in the US. Here we have Costco, a big warehouse chain. They have audiologists and prescribe hearing aids. I've read good things about them but there is the cost.
Private is expensive here in UK too but worth it - we get better attention but we have a very special lady audiologist practising locally - she has helped me and many others when NHS did not
The first symptoms of GCA for me was a shooting pain behind my right ear. I thought I had an ear infection and was given antibiotics which of course made no difference. I have lost hearing in my left ear for 24hrs. In hind sight it was while I was having a Flare. The main pain became the temple and right eye but I do think ears are involved. I would suggest you do as you say and increase your dose by 5mg and see what happens. Hopefully it will be clear but……? You know how confusing this syndrome is!
My ENT has heard of GCA, but didn’t explore that option. I’m leaning towards increasing the pred but I don’t have pain in the ear, just increase in hearing loss and the echoing sensation. Always something new with this disease. My pain has been in the occipital area where it was when first diagnosed and a little bit in the right temple.
I've suffered from Persistent Tinnitus in my left ear ( both continuous sound and pulsatile)and intermittent pulsatile in my right ear ever since GCA , and for some years off and on before it . It's loud , constant noise which affects hearing certain things , especially noise from behind me and my left ear always feels full and has a dull ache.I can still get a normal test results with the audiologist even those these give me constant noise, difficult hearing certain things and occasionally drive me mad.
I still get normal ear pressure tests and have no wax as I clear it regularly to help reduce a blockage making the problem worse. The GP checks my ear is not inflamed and I have no infection.
The audiologist can't hear the tinnitus when they test you and because their sound based hearing test is based on a pitch noise , you can hear it , because it is distinct from the tinnitus sound if you don't have any damage to the auditory mechanism in your ear.
I've had it off and on all of my life , but it became worse with GCA and the left ear tinnitus never went afterwards.
Taking steroids did not improve it because the steroids may reduce the inflammation in the arteries and veins , but it can also increase your blood pressure , especially intracranial BP which is often the main reason for tinnitus of all types occurring.
Even as your steroid dose drops , in some cases , there could be a change in arterial shape or position of blood vessels near the ear which means you still hear the tinnitus, especially when you move your head below your chest or your blood pressure increases during exercise.
If your arterioles, or smaller branches from the arteries are close to the ear it causes the sound , and this gets louder if you also suffer from high blood pressure or temporary causes of inflammation like Migraines , Headache and Neck pain.
Audiology tests and just looking into the ear won't diagnose the problem itself if it is caused by blood flow , hypertension , artery position or damage , or blocked arteries ( even in other areas of the body like the heart or abdomen) . Sometimes if these are the cause higher doses of steroids can make the tinnitus worse if it also increases your blood pressure.
Other health issues can also cause tinnitus, and these health problems can also sometimes develop after PMR or GCA because of the effects of long term inflammation and required steroid use on your body.
Blood tests are important to rule out Anaemia , a common cause of tinnitus because low iron in the blood changes blood flow. Vitamin B 12 and Folate, because these affect all different areas of the body including hearing and blood pressure as well as affecting how well we absorb iron and our medications and increases inflammation.
Getting serum blood tests for Ferritin/ Iron, Vitamin B 12 , Folate and a Full Blood Count are important to rule these out as causes for the tinnitus and inflammation flare.
Blood pressure tests need repeating and if you pressure is high , or you have tachycardia with low blood pressure, this could be the cause. You may need blood pressure medication to help reduce the BP near your ears and reduce the tinnitus.
After that , it's important to rule out Thyroid issues with Thyroid blood tests because Hypothyroidism can also cause changes in blood volume , blood flow and cause increased inflammation. It needs ruling out before getting further tests at ENT so that you can say it's been done and they can jump a step in their investigations.
If your ears are fine and clean , and hearing and blood tests normal that does not mean they should stop there , especially if your inflammation and pain is increasing.
The need to do x-rays , and an MRI to rule out arterial damage or pressure from close arterioles being heard in the ears and other causes of arterial blockage like atherosclerosis and clots or CFS fluid increase and sinus damage. The risk of having these issues can be higher in patients with GCA , even after the GCA is in remission, so if they don't offer further scans remind them and ask for them.
Sometimes they don't know the cause , sometimes they find it but even if blood pressure and inflammation is controlled the tinnitus will still be there permanently.
This is really common for people with Chronic Migraine, Hypertension and with cardiac health issues or post cardiac surgery or stroke.
You need to use ways to drown it out then with sound and distraction therapy.
It would appear that if your inflammation has also increased in your shoulders that could be adding pressure to the arteries and you may have higher intracranial blood pressure producing the tinnitus. In this situation the increase in steroids to reduce the inflammation may improve the pain , and may improve the tinnitus, but be aware it may also make the tinnitus worse.
Hope the pain improves for you soon , take care , Bee
Wow Blearyeyed, are you a doctor? Thank you for this comprehensive response. I have never gotten as much information or testing from any physician. I am exhausted just reading it and thinking of all the effort entailed in getting these answers.
Getting all these tests seems pretty impossible given the state of medical care in the US.
Tinnitus has just been treated as an annoyance to be masked. Thank you for the explanation of why it doesn’t show up in a hearing test.
My ears have no wax buildup and the ear drum looks good. Seems pointless to have another hearing test.
The pain in my head I am having seems to come when I’m trying to type on the phone or stressed.
Have you got a home BP monitor , so that you can check your BP and Heart rate when the head pain occurs ?This good behaviour a good basic start. Write down the date both the BP and Heart rate results and your symptoms in a note book to show the GP , it will help them see any pattern which needs testing or a potential diagnosis.
It would be worth checking your blood pressure at times when your tinnitus be ones very loud or makes a whooshing or pulsing sound too.
Take some baseline readings of your BP and Heart rate to compare the results to.
Take one reading in the morning , one in the afternoon and one early evening before eating after sitting with your legs up on the bed relaxing for 20 minutes. Have the BP monitor on your arm ready to take it. This will show you what your normal resting BP and HR are.
If it turns out that your blood pressure is high at these times or in general and you aren't on medication for this the GP may be able to prescribe something like a beta blocker to help without you requiring any other tests.
The blood tests to rule out other problems are basic tests that can be done together at your GP surgery.
Make sure you request the ENT to check your sinus pressure and not just your ears because that is often a common culprit for causing tinnitus and head pain too.
If the tinnitus has nothing to do with your ears, hearing or sinus you can speak to the GP about getting a referral to a Vascular Specialist or Blood Pressure Consultant, they would order any scans if you need them. Your BP notebook would give evidence for whether you need that.
And if vascular or blood pressure isn't the cause then the GP can refer you to a Neurologist, whom may also choose to do scans if they are needed.
It's the additional symptoms like head pain on movement and stress in combination with your tinnitus that means it could still be linked to GCA but it could be another vascular or simple blood pressure issue or migraine problem which needs investigating, just in case you could improve with additional treatment.
You'll get there it just might take ticking a few more things off the list of possibilities than just your ears.
It's definitely not impossible, it's just a matter of knowing what to ask for.
Speaking about it at your ENT appointment would be worthwhile if they see no ear issues and asking them to fast track you to one of the other specialists,
The tinnitus may still continue though, just as it does for me , and that is annoying but you can even get help and advice for that with Desensitisation CBT training to distract yourself from the noise and sound therapy to mask it out.
I sometimes wish it would change a bit , maybe play me a few of my favourite songs for a bit of variety!😆😆😆
Thank you so much Bee for suggesting a way to start in all this. I don’t have a blood pressure monitor but I think my sister does or I may buy one.
I’ve also had pounding heart sometimes after pretty minimal exertion, haven’t had it checked out. Seems like too many things to deal with. At 80 seems like everything wearing out at once!
Thanks again for your detailed and informative response.
Went to my GP yesterday and described many of your symptoms. Oh it's not GCA and I read too much says she. Fed up to the teeth! Next call is back to rheumy nursing line. The runaround is real. I'm stuck at 11 mg. Pred and they still want me reducing. All the best to you. I'm in Nova Scotia btw.
It is so frustrating! Been there. A big part of my problem is who to talk to about all this. Each symptom seems to be covered by a different doctor and they don’t communicate with each other. And none seem to be very familiar with GCA.
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