Sticky Blood-Hughes Syndrome Support
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Hearing loss

So I'm going deaf apparently, and so far I don't have any leads as to why. My doctor doesn't think it's related to the aps, but hasn't tried to verify that I don't have a clot in my ear.

Does anyone else have hearing loss? If so, what caused it? Has it proven reversible or permanent? I will see a hearing specialist when I can, but since I work a lot, my time is limited.

12 Replies

I'm so sorry to read this. Do prioritize a consult with a hearing specialist. Your hearing is worth it!

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Hi. I was diagnosed with APS around 12 years ago. Around 4 years ago I woke up one morning with Sudden Hearing Loss...moderate in one ear and mild in the other. Also tinnitus in both ears. This was confirmed as being permanent by two Ear Nose and Throat specialists but no one could provide a definitive diagnosis other than it being an inner ear issue which couldn't be treated..

Hearing loss is known to be associated with APS. My understanding is that it is to do which the resulting restricted blood supply to the very fine blood vessels of the cochlear. My tinnitus has largely gone however the hearing loss remains. The ambient (background) noise level is the significant factor in how ell I can hear at any one time.

Watching a movie with a louder background sound score means that i have difficulty understanding the dialogue. The accompanying lack of auditory discrimination means that if there are several simultaneous sound sources I have trouble telling where each is coming from without other indicators. One to one conversation if fine until the background noise levels rise. then I find myself having to rely on lip reading. The upside is that the person that you are speaking with feels that you are intensely interested in their point of view. And you are, only you are intent on just trying to hear and understand them, not necessarily on what they have to say!

The hearing loss is certainly confronting but compared with some of the health challenges that others have to deal with its not quite so bad.

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Another person with sudden loss here as my usename suggests. Mine came about a month after i started on anti coagulation


Do you think it was the anticoagulation-drug that has done that?

It took around 2 months before I was at a steady level. Maybe you were not enough anticoagulated (at a too low level) and got a new stroke or TIA.



It is certainly something i cant quite disregard as a cause. I felt a fluid sensation in the ear region and felt that there may have been a bleed.

An mri scan after a month had passed did little to establish if there may have been any bleed or clotting event that played a part.


It is usually mini-thromboses that can not be seen on an MRI. If the damage has already occured the anticoagulation can not help much. The balance can improve by practise. My tinnitus is still there but I am used to it.


My husband say I am deaf cos I have to have the TVs up so loud and I get ringing in my ears but not sed any think to any not till OT came out he asked me if I had any trouble with my ears I sed I did and my husband sed yes she as iv got APS too thanks Lesley 61


Hi there.

Where are you from?

Are you able to get to London and see a specialist, privately?

If you are then I would recommend that you see Peter Savundra at The Portland Hospital. Peter is a lovely man and is a 'Consultant Audiovestibular Physician' who knows all about APS and is a colleague of Prof Hughes.

Best wishes.



I have APS and have a hearing problem. I am however in my 70's so part of my hearing loss is attributed to my age. A year ago I had the worse tinnitus I'd ever had, just before going to bed. At 3 AM I woke up and was completely deaf in my left ear. A month prior to this I was in the ER because I thought I was having a stroke or TIA. It was never confirmed at that point, but since have had an MRI that shows I've had at least two mild strokes. I went to my GP after losing my hearing and she referred me to an ENT who confirmed that I have irreversible deafness in the left ear and I now wear a hearing aid in my right. I questioned the ENT on my last visit and she said that the lack of blood flow to the cochlear had killed it and said that very possibly it was the result of a mild stroke. I also have difficulty identifying where voices and sounds are coming from. Best of luck in your search for an answer. Helen, USA


Thank you for the replies. The hearing exam at my employment physical confirmed hearing loss and I had to sit in a booth and push when I heard a tone.

My doctor was on vacation and the person I saw didn't know much about aps. I am in the US, but have planned to cross the pond to visit theexperts. Until then, I worry that my coagulation may need to be changed to prevent further damage. I am only in my 30's and have small children who rely on my income so I can't afford to mismanage things. I am a teacher so I need too be able to communicate with my students too. I will follow up with my regular doctor and a hearing specialist.

I suspected the aps could be the culprit, and it seems I might be correct.


Hi I have hearing loss but also have meneieres disease . My hearing loss is permanant and will get worse, how much is related to APS is something i will ask my hearing specialist next time i see him.


I have a leftsided "otolite-damage" after a TIA or ministroke 2002. I have a bad hearing (this is caused by APS and small embolies in the ear). I have seen the best expert in Sweden regarding this issues. The doctor has suggested an hearing aid.

Best regards from Kerstin in Stockholm


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