I have this condition which as left me deaf,with tinnitus and balance problems. I was just wondering if anyone else has this condition as it is quite isolating.
Hi Leanne85, It is thought to be autoimmune, a rheumatological disorder. Let me ask you, do you have hypothyroidism or have you been checked?
Thank you for your reply. I see a Rheumatologist. I have had thyroid tests. The came back normal.
Any other symptoms and when did you begin to loose hearing ?
I lost my hearing 13 years ago after severe vertigo, sickness and vasculitis.
Ok not saying it’s this but looks up https://saidsupport.org/disease-specific-information/cryopyrin-associated-periodic-syndromes-caps/
Or
Behchets syndrome
Not saying it’s them but look at caps symptoms.
If you trace back illnesses to childhood you may get bigger picture.
Love to hear if any fit caps has three types btw nomid cinca, muckle wells syndrome and familiar Mediterranean fevers .
Behchets syndrome has 2 types I think behchets and neuro behchets.
But there’s only a handful of autoflammitory conditions and usually last time be tested for as most test for autoimmune but there’s a lot more in autoimmune than autoflammitory.
I have all the symptoms of Cogan’s Syndrome. Started with eye inflammation, then deafness, vertigo and sickness. No illnesses in childhood.
What kind of tinnitus do you have? Ringing, buzzing, clicking, whoosing? They can all be from different causes.
I have had whistling, humming and thumping sounds but mostly like an out of tune radio. It is better in my left ear due to a coclear implant. I tune it out as best I can.
I felt the same. It can be isolating. I didnt get deaf, i couldn’t hear much when it was happening. I think the problem is coming back again.
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I have read recently that tinnitus can be related to tooth problems. I have noticed my tinnitus has been worse when I have had sinus infections going down into a tooth. But it could be caused by stress or anxiety.