Sticky Blood-Hughes Syndrome Support
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Sudden sensorineural hearing loss

Has anyone else suffered this? I woke up recently with my hearing, which is affected anyway, feeling as if I was 'underwater'. Can hear but my hearing is much worse and everything is muffled and distorted. Diagnosed with the above. Apparently a small thrombosis in a vessel in the inner ear, another APL side effect, but not common. Treatment is steriods, full ENT investigation to rule out anything else, then its presumed to be a clot and APL/APS cons then looks at upping anticoagulant. Wouldn't mind, but I can't do my job atm as I can't hear on the phones. 60% recover spontaneously but can be permanent. Hoping I am one of the 60%.

10 Replies

Hi, there, sorry to hear about this, fingers crossed, and everything else that this is a blip and it passes! Keep us informed, and please feel better soon. Mary F x


Oh dear I do hope you getit sorted soon with full recovery worrying foir you :(

I get the underwater symptoms quite frequently & clicking in my ears when I use a comp' mouse or keys on mobiles? But I'm told mines due toi Menieres? But I also go very dizzy with mine.......

"Let us know how you get on hun, hope its sorted soon x


Thanks both of you very much for your best wishes and kind words. At least I don't get the dizziness, must be awful Suzypaws. Keeping positive. Wanted to post to inform everyone else in case not known. If sudden hearing loss happens it is a medical emergency and needs immediate investigation. It might be as minor as an inner ear infection, but with our hx of clots, could be SSHL. Needs immediate steriods for best chance of recovery and full ENT investigation. Then APL/APS cons needs to get involved. It is not common, however. I knew we could get clots anywhere but never thought of inner ear!


Very interesting and I do hope things sort themselves out for you and you feel better soon. Like Sue above I have sudden short periods of same symptoms as she discribes which have been much worse since my Stroke. No one has ever told me what they are but if I get a day when they are bad like sue balance can also be a lot worse than normal - if that's possible lol!


That's not good, Lynne :-( can't think of anything much worse than recurrent dizziness as well as the horrible hearing sensations. Have you asked for a diagnosis or do they say they don't know?


((Forgot to say either way, wishing you well Lynne) x


Hi Sue,

I live near Sydney and suffered sudden hearing loss a couple of years ago. It was accompanied by a feeling of blocked ears (which weren't blocked) which I was advised was the body indicating hearing loss. Two ENTs put it down to being related to my APS and although deemed permanent the loss has varied at times. I saw my immunologist a couple of months later and he tried high doses of steroids but this didnt help. I suspect it was too long after the event. There is a known association between sudden hearing loss and APS.

Losing my hearing forced me to retire from teaching. Its okay one to one but if I'm in a group or there is background noise like music, i lose auditory discrimination and either cant follow what's being said or am unsure of where the sound came from. When the hearing is worse I've found it is accompanied by a sense of increased pressure in the ears and significantly reducing my dietary salt has made a marked improvement.

Best of luck.


Hi Lozzer,

Gosh, what can I say? Im so sorry to hear that not only did this happen to you, but the hearing loss is permanent. And that you lost your career. Like you, Im not so bad one to one atm, as long as the person is close and faces me, and am getting v good at lipreading :-). And I also get increased pressure. Background noise is a killer, tv is a nightmare, and I have particular diff with higher modulations. I was getting better on steroids but have now had a setback, woke up again with hearing back down to the level when it first happened a few weeks ago. ENT have ordered an mri and say wait and see, these things are variable. Havent seen my haematologist yet who is looking after my APL/Lupsus, but I did speak to one of the team at StThomas over here in London. She advised pretty much what I have said in my first posts, that it is prob due to a clot and also about upping the anticoagulants. Ill see what Prof Hunt says at the end of the month when I see her. Great to hear that cutting out salt has helped, Ill try that one out. Thanks for telling your story. I hope you are still managing to enjoy your life as much as possible. From what I have read, SSHL is still largely an unknown quanitity and some people, even some way down the line, suddenly get their hearing back. I hope that happens to you.


I'm sorry you are having problems with your hearing. My experience of SSD is not a positive one, but I shall share it to increase awareness.

I lost the hearing in my left ear just over ten years ago. It was thought at the time that I had viral labyrinthitis and and that the hearing would return in about six weeks (GP's opinion). Six weeks later, still no hearing, and far too late to try steroids. MRI scan done, verdict - loss due to a "vascular event". Nobody seemed to connect the loss to my APS. I had no support from hearing services at the time. All I had was a suggestion of having a bone anchored hearing aid. I was pretty much in shock when I learned that the loss was permanent so was in no position to make any decisions about what could possibly help me with my loss. Last year I started to see a hearing therapist, who could not believe that I had not had any support at the time of my loss. I have tried CROS aids and hated them, but still cannot bring myself to have an aid permanently attached to my skull. I try and appreciate the fact that the hearing in my right ear is the hearing of a 20 year old (not bad for a 46 year old!).

I really do hope that your hearing returns, and sorry if my experience was a bit of a downer for you to read.



Hi Emma

Thanks for sharing your story. As you so rightly point out, even though your experience is by and large not a happy one, you can be proud that by sharing this and raising awareness in the APS community, you may help others who suffer this to seek immediate treatment. If by your efforts just one person got immediate treament and was one of the ones who respond to the high dose steriods, I'm sure that you'd be over the moon. I'm so sorry to hear that your treatment by the medical establishment seemed to be one of neglect. I also had experience of this. The audiologist at the hospital where I worked raised the possibility of SSHL and referred me to the on call ENT SHO as the ENT consultants were not available till the afternoon. The SHO told me he had never heard of SSHL, quickly looked it up on the web in front of me, and then poo pood the idea saying it was rare and that he advises a wait and see approach. Scary! And this guy is on call for A and E! Lucky I didnt listen to him and went back to the audiologist who got me to see one of the ENT Consultants that afternoon. Bingo! I was diagnosed and put on immediate steroids. Hoping still that they will work. There's a lot of ignorance out there. Lets hope we can do our bit to change that. Best wishes and thank you.


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