I’ve done some research and found out about a autoimmune disease called AIED and it causes sudden deafness, and if left untreated for more than 3 months the damage can be lasting.
So more than 3 months ago I had sudden acute loudness my doctors said it was very rare and immediately removed me off all medications just incase it was a side affect.
It now looks like that was a pointless act as I’ve suffered horrendous flares with no meds for that last few months annoyingly.
I’m seeing my Gp tomorrow and I am determined to get lots of tests done.
Has anyone else ever had this?
Written by
lisa___s
To view profiles and participate in discussions please or .
Scared, frustrated, emotional. Yeah I hope the doctors are on the ball on Monday x
How awful for you.
I know that Ehlers Danlos Syndrome can occasionally cause deafness and is related to autoimmunity and is a connective tissue disease. I think Menieres can cause deafness as well but it could of course be unrelated to autoimmunity.
Both my younger sisters were born profoundly deaf and no one knows why.
I really hope your GP can give you some urgent help in time to recover your hearing
I went deaf completely overnight in one ear. I found out too late for me that sometimes a rapid introduction of high dose steroids can sometimes reverse the event. But the longer the time period has elapsed the less effective this will be. Apparently some A&Es are better at dealing with this than others.
I am talking here of sensorinural hearing loss but it is possible you may have conductive hearing loss, which can just be caused by a blockage. My gp at the time misdiagnosed me and caused me to waste valuable time and by the time I was seen by real experts in the field I had no chance of recovery. I think 10 days was the cut off point and I was first put on increased steroids after that with no positive outcome.
Is the deafness in one ear or both?
Has anyone tested you yet with a tuning fork to see if you can pick up any vibrations?
If by chance you are London based I can suggest a particular A&E that used to do better than others in this regard. It is considered an emergency.
Mmmn. Studies say there is no connection. I am unsure of those studies.
These days I NEVER hold my mobile to my ear. It's loudspeaker or nothing. It's difficult enough managing with just one ear without risking being completely deaf.
I read about an auto immune disease called AIED. It causes sudden hearing loss in one ear which will eventually move to the second ear. If left untreated even for a short period it can cause permanent hearing loss.
I’m worried that it’s been two weeks and I’ve had no treatment.
Show the link to the Lancet study. When I came across that i tried to get an urgent appointment with Professor Linda Luxon but was unable to. Dr Schreiber has been more recently at Royal Free hospital, but now works in a different field.
I don’t feel it’s right to have left you for 2 weeks with this kind of sudden hearing loss? I’m surprised your GP didn’t triage an appointment with your local audiologist and ENT?
Believe me it's common. Especially at this time of the year where it's all blamed on being bunged up and send you away to give time for the cold to resolve.
It is urgent though as they should be doing tests to ensure its not acoustic neuroma related, and you have to be referred to audiologists before they do that.
I would be banging at doors and not letting anyone give me flannel. But then I have a big history of profound deafness in my family and have had constant tinnitus for a few years so I’m just me. Hopefully Lisa will be very firm with her GP about this tomorrow.
The thing is without any prior knowledge time is wasted getting up to speed on what has occurred. At the time it hit me I was spending a lot of time on a forum and mentioned it. A few people told me it was urgent and to go to A&E but I didn't react and took the slower route of the gp and initial misdiagnosis. I can't say if quicker treatment would have prevented my loss, but some others have been luckier.
I guess I just think it’s probably something I would go to A&E with. But then I’m sitting on chest pain just now assuming it’s costochondritis so I’m not really in a position to speak.
There is something else I would do these days and that is do my best to raise my nutrition levels as some suggest hearing loss sometimes goes hand in hand with low levels of glutathione. This is an anti oxidant and low levels may suggest an overburdened immune system.
But until you have a need to search for information most people will be unaware of all this, and while time is taken on researching the golden window of possible cure time disappears.
My hearing loss was 28th December 2010. See even the date has not left me.
But, even though I was given the bleak outlook, same as you, my hearing in the other ear has remained good.
However these days I refuse potentially ototoxic drugs and won't place my phone to my good ear.
If your loss is similar to mine they used to offer a BAHA Bone Anchored Hearing Aid. I didn't take up that option as I didn't think I could cope with that psychologically. But many suggest it has helped them.
Don't let the doctor brush you off with a diagnosis of labrinthitis. You have already spent 2 weeks for any possible resolution. It's now time for the doctor to make an URGENT referral to an audiology department.
What you describe sounds like sudden hearing loss (whether sensory neural or conductive) and that counts as a medical emergency. If its is sensory neural then I think (as folk have already said) steroid injection can be the indicated treatment and it can be very effective. But it needs to be done as quickly as possible. imo dont wait for an appointment, go to A&E and demand that the matter is investigated there and then.
Sudden hearing loss can also be something as simple as impacted wax on ear drum. But imo you have to assume teh worst until they investigate and know what the cause is.
Thank you for your advice. It’s definitely not caused from ear wax or infection as the doctor has already confirmed that my ears are clear completely of wax and there’s not sign of infection.
Which is why this is more worrying for me.
Early last year I was having let’s say odd issues and sensations with my ears. I was referred to ent. After lots of investigation I cleared all they’re test but they did notice I couldn’t hear high end noises on my hearing test.
They couldn’t explain this to me, but didn’t seem worried by this.
I continued to have problems after being discharged from them.
I spent most of the summer having intense spells of tinnitus and dizzy spells.
Then due to being diagnosed with fibromyalgia and undifferentiated connective tissue disease my rheumatologist put me on hydroxychloroquine. A couple of months into taking it I suddenly had extreme loudness sensitivity in my ears. I mean it was 24 hours of hell. I was excruciating and exhausting. It’s like someone had turned up the volume on the biggest speakers next to my head all day.
My GP immediately emailed my rheumatologist and he told me to come off any meds including the hydroxychloroquine.
But now this, I’m deaf.
It makes me wonder wether all the other ear problems were a build up to this!!
I was on hydroxy before my hearing loss. Also aspirin and Sildenafil. Along with other drugs. But all three of these drugs are potentially injurious to hearing.
I didn't even question being put on any of these drugs as I had always had perfect hearing. Until.....
These days I check if a drug could have hearing loss as a side effect. I have never taken hydroxy since, but that has meant I have been on steroids for much longer than many people. But I think (fingers crossed) I am ok with them.
Thanks for your reply and appologies for the delay getting back.
I dont think hydroxychloroquine would cause sudden hearing loss, though it can cause hearing loss and tinnitus progressively over time.
Im not sure what blood tests your GP is doing or why she is waiting before giving high dose steroids. There are dangers ofc to steroids but I suspect that if you have Sudden sensory Neural Hearing Loss (which u seem to suggest could be teh case) then every day counts and the potential benefits would far outweigh the risks. Further, the risk will be the same next week, but the potential benefits will be less. In otherwords, if its going to be done, then it might as well be done tomorrow at A&E. Doesnt really matter at this stage what the underyling mechanism is and I would be very surprised if the blood tests will give a definitive answer.
It is also worth noting that often an intratympanic injection (I might have got te name wrong but its injection into the middle ear I I think) is often given along with oral steroids in cases of SSNHL.
good luck. I know what these ear problems can be like and I wish you all the best
Hi Robert, my rheumatologist as told my doctor to give me a high dose of steroids immediately so hopefully I’m on the right path to getting this treated now
Hi I have lupus but also have had an Acoustic Neuroma. I have been losing my hearing gradually for years and have been wearing hearing aids for years too. I was having weird dizzy spells and it was affecting my balance and vision I saw a ENT specialist who put it down to autoimmune problems and didn’t think anymore about it. Then I suddenly lost more hearing overnight just in one ear it literally went down to half of what it had been. Hope thought it was just autoimmune as the Dr had said and didn’t follow it up immediately as I was in the process of moving and thought it would be better to see someone where I was moving to. Anyway to cut a long story short I was diagnosed with an acoustic Neuroma 7 years ago now and had stereotactic radiotherapy for it 5 years ago. I have unfortunately never got back the hearing I lost in that ear and have a severe hearing loss in my left ear. Please anyone who loses hearing suddenly please push for a MRI scan to get it checked out! They are benign but can cause lots of damage if they get big enough. Mine was 1.8 cms x 1.2cms but was already brushing on the brain stem! I have a very slight left sided residual weakness from that.
So I had my appointment with gp this afternoon. She took my concerns very seriously and sat there and read upon AIED as she hadn’t heard of it.
I told her I need steroids straight away as I’m really worried about loosing anymore hearing and stopping this!!
She’s ordered bloods for tomorrow morning but won’t give me the steroids cause they can affect the markers on the blood test. She’s also emailed my consultant and told him this needs to be dealt with by him as an emergency. She will telephone me at home on Thursday to update me.
So fingers crossed the ball is rolling in the right direction 🤞🙏
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I’m a lady who has recently been diagnosed with lupus and Raynauds syndrome. I’m looking for a support network who understand. 
Sudden agonising hip/groin pain. Can anyone relate or explain?
Long time 
Reducing Hydroxycloroquine, any success stories?
