Because of the similarity of needing rapid treatment like with GCA I thought some forum members would find this interesting ...
[An extract from a radio programme cited below]:
'Sudden deafness is a rare condition where your hearing — usually in one ear, sometimes in both — disappears overnight.
It happens without warning and unless treated quickly, the hearing can be lost forever. But sudden deafness can fly under the radar at the doctor’s office.' .... It starts with a very innocuous symptom initially where the patient mostly presents with a blocked ear. And we've all had a blocked ears from time to time, but this is a blocked year that usually happens completely out of the blue. Or it could be a worrying symptom where you wake up in the morning with a blocked ear and you've got a lot of ringing or tinnitus in that your ear, and you've been previously very well. ... Unfortunately it's often brushed off and the patient isn't taken very seriously or they are dismissed because it can be related to many other causes which are far more common, hence it's not investigated as a possibility of causing this sudden loss of hearing, which can be permanent. ... The technical name for this unexpected loss of hearing is sudden sensorineural hearing loss. It's also known as sudden deafness. Estimates of how many people are affected by sudden sensorineural hearing loss vary wildly. The medical literature suggests it's anywhere from 5 to 160 people per 100,000 each year. That's a pretty loose statistic, but what we can say is that it's uncommon but not unheard-of and is often missed by doctors'
This is a completely new one on me - but of course many of you will no doubt be familiar with the horrible possibility with GCA of losing a sense VERY suddenly if not treated within a few days with corticosteroids and the sometimes less than timely diagnosis and treatment resulting in loss of eyesight !! The programme this was discussed on is from our Australian ABC Radio National and I am aware some of you may not find this accessible on the web - but can no doubt checkout further details on a standard search. For those who can open this here is the link:
In Germany it is called a Hoerstutz - literally a "hearing plunge" and is far better recognised than in the UK. Immediate very high dose infusions of steroids may result in a recovery - but all too often it is already too late. I have had a few friends of all ages who had experienced one.
At least it almost always affects just one side but even unilateral hearing loss is very inconvenient.If you wake unable to hear in one ear - straight to the ER, don't wait.
I seem to remember reading about this very recently ( news to me) perhaps someone posted on here ? I think there was a research project on ears/ hearing and their involvement in GCA..
Sudden sensineural hearing loss can occur on its own without being part of GCA. The GCA relation is when it is the 8th cranial nerve that is involved - and that was the research written about recently which was partly funded by the NE of England charity after a straw poll at the Gateshead support group made it obvious that GCA and loss of hearing or other ear-related problems go hand in hand.
That's interesting - I recall now reading before somewhere about some ear problems and GCA and strangely I have had blocked ears myself several times since my GCA dx (not ever before). I didn't worry too much - just assumed it was a waxy build-up which it was on a couple of occasions but for a while I had that 'whooshing' sound and some tinnitus so it could have been more serious than I realised !!
This is one of my Pet issues , as I have suffered from Temporary Sensorineural ( inner ear) hearing loss ( SSHL) , commonly known as " Sudden Deafness" off and on over the last fifteen years as part of my Neurological Issues , I believe it increased substantially prior to GCA.
Although Permenant Sudden Deafness is relatively rare , Temporary , Recurring, or Acute, SSHL is actually very common. According to figures from the NIDCD it can happen to 1-6 per 5000 people per year in the US. In fact , they assume the figures are much higher , partially because the condition can coincidentally be treated by the Steroids you are given for something else , but also because it is often dismissed by the Patient or Doctor as a minor symptom of something else, or , a sign of ageing in Patients over age 60 .
It isn't given the attention it deserves by Doctor's involved in treating Chronic Conditions unless the Hearing loss become Bilateral or Total , and very few Practitioners are aware of it as a Medical Emergency . Probably because it is Unilateral and doesn't have the same Life Impact that Sight Loss or Temporary Movement loss does.
It's recognition is also obscured because Full Hearing is regained in approx. 50% of cases when the Primary issue is treated , and most people regain Partial hearing after the event.
It can come on suddenly , quite often discovered in the morning on waking , much like the stiffness and Pain of PMR. It often involves the feeling of ear fullness , sudden loss of volume , maybe while on the phone or watching the TV , dizziness , and severe tinnitus
( tinnitus that obscures all outside noise). Most commonly , when treated quickly it lasts up to 2 weeks. Often the treatment for something else you get happens to be right because it usually occurs as part of something else .
Some people , hear a pop , or bang , if this happens and then Hearing is lost , even if you are on current Steroid Treatment ,you should go to see the GP and have your hearing tested and inflammatory checks done as soon as possible.
It is usually in one ear , but research is beginning to prove that sufferers of Autoimmune and some Autoinflammatory conditions can get it in both over time.
Only 10% of sufferers find out the definite cause , probably because of the lack of awareness. Common causes are Infection and Injury , Neurological Disorders , Autoimmune Diseases , Vascular and Blood Circulation Disorders , Connective Tissue Conditions , exposure to certain treatments for Cancer and Immunity , and obviously , Diseases of the Inner Ear.
Looking at the list of known causes , it is probably not surprising to you now that some people with PMR , or especially GCA , may be suffering, or have suffered , from this Condition at some time during their condition , especially before Diagnosis and the Steroids are prescribed , as Steroid Treatment is the main course of action . But , because they got their hearing back it wasn't recognised as Sudden Deafness.
Interestingly , research is beginning into the possibility for the reasons that it's diagnosis is missed. Especially helpful for sufferers like me whom originally suffered with it from a Neurological cause, research is also looking at how it can be overlooked . It could be because Doctor's assume at present that it will be accompanied by swelling or inflammation . New Research will be looking a other triggers too , much like in Temporary , Short Duration, Sight Loss , a probability that it can also occur by repeated loss of blood supply to the sensory organs of the ear.
As , I say , a Pet project , which makes me want to scream at Doctor's to stop assuming that common symptoms in people over 55 whom suffer illnesses like PMR/ GCA , RA and the rest, are always caused by Old Age , they are often not , and that assumption can come at an unnecessary cost.
Thanks so much for highlighting this today Rimmy , knowledge and awareness is power !
Thanks for such an informative response - it is quite intimidating really to realise (again) this isn't well understood and hence can have consequences equally as dramatic and terrible as losing eyesight with GCA. I hope you do continue to discuss this interrelationship here from time to time as we all need such important information - and to make our medicos themselves more aware ... much appreciated Blearyeyed !!
Obviously , with my job , temporary loss or disturbed vision , was more obvious and worrying to me over the years but the effects on my hearing from Severe Tinnitus and recurring SSHL has been a bug bear to me because it was always brushed off and not recognised as such in my notes. I know now that I was probably just lucky on a few occasions that the steroid treatment I got for my eyes also treated what was happening to my ear.
You are never sent to an Ear Clinic unless you push for it , and if you are treated for something else before you receive an appointment to ENT they are , luckily, unlikely to find what they are looking for because it's on the way to being cured.
I can easily say that I have had it , a few times a year , nearly every year, over fifteen years at the same time as increases in my other conditions , but that it has only been diagnosed separately once , because I had the ear test prior to receiving my current Steroid treatment.
I find it interesting. I have had blips in my hearing fir 20 years which i believe are connected to diabetes. I have ear discomfort or awareness 70% of the time. The volume level on my TV is a good marker of where my hearing is and I always have subtitles on..
Of course nobody would 'prefer' to take any corticosteroids BUT when you think about what the appropriate dose has saved some of us from then I reckon it's a 'no brainer...'
Mild to Moderate Tinnitus , either occasional or continuous, is a very common accompanying Syndrome for a wide variety of conditions , especially our own Trigeminal and Occipital Neuralgias. It can impair your hearing but unlike Severe Tinnitus it doesn't drown sound out from Outside the ear entirely .
I have had virtually continuous Moderate Tinnitus in my Left Ear for almost ten years now , in fact , these days I get more worried when the Tinnitus suddenly goes quiet for a few minutes and everything gets incredibly loud.
I get occasional Severe Short Term Pulsatile Tinnitus in my right ear , more often when I am suffering increased Migraine or Inflammatory issues.
If you do have Tinnitus as part of your Chronic Condition though it shouldn't be dismissed , and your Doctor should have your hearing and ears tested , and then annually checked, to monitor possible deterioration just as your eyes should be checked regularly with these Conditions as well.
Short bursts of Severe Tinnitus can also happen , along with deep rapid ear pain , with Neurological and Inflammatory Conditions . If it is new , again it is something to have checked in case it requires new treatment , or, an increase of medication that you are already receiving.
Any sort of Tinnitus can cause you additional Fatigue , Sleeplessness or Distress until you have it treated , or learn the techniques that work for you to help drown it out and improve your Hearing quality.
Although increases in Tinnitus can happen before SSHL it does not mean that you would definitely get an episode of Sudden Deafness if you suffer from Tinnitus.
The Severe Tinnitus of SSHL comes on quickly. It's like the short bursts of Severe Tinnitus and drowns out hearing from that ear but the difference is that it lasts until treated. The other symptoms like rapid full , or near total, hearing loss and dizziness also last until it is treated , or the Condition that brought it on is treated.
Interestingly , unless I have had it as part of an infection which also caused Ear Pain , the Sudden Deafness was more often without Pain in the Ear , but it could cause an increase in my Migraines.
If you are having rapid ear pain as a new symptom, and an increase in your Tinnitus symptoms, it could be a sign of an infection , a new condition , Migraine , or a mild increase in activity of your current Neuro or Inflammatory Conditions though , so it's worth having it properly checked by your GP.
I read this in the Daily Mail Health section on Tuesday. Nice to see it highlighted on this forum. Every different ache pain or inconvenience I just put down to a compromised immune system and possible infection?
I seldom question what it could be that people without PMR/GCA can get.
My sister recently had a bad bout of Labarinthitis, she was really sick and couldn't get out of bed. The Dr. came and gave her an injection to stop her being sick. When she recovered she was left deaf in one ear and is waiting to get a special hearing aid.
Are they trying her on a course of steroids or other medical therapy to see if they can get her hearing back as well as the hearing aid , or has their been some Permenant damage spotted ?
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