Auto immune inner ear disease

[MrsLifechange]

Hello has anyone on this forum been diagnosed with AIED? I would like to connect with anyone who has. It is rare and causing me so much distress 2 years and 2 months after diagnosis as an extra intestinal manifestation of Crohn’s disease. Thanks

[NicBTA Partner]

Hello and welcome to the British Tinnitus Association forum. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

[4wheel]

I do not know if it is relavent to your 'condition' but I have a compromised immune system and connective tissue disease which have been linked to tinnitus. My Tinnitus is mainly in the right ear and 'usually' settles down with white noise via a MPS player I have had Tinnitus for about 5 years and my main triggers are tyre/road noise, extractor fans and air conditioning systems.

[MrsLifechange in reply to 4wheel]

Hello thank you for taking the time to reply. I have hearing loss in right ear and tinnitus 24/7 in both ears. I can’t find anything that settles it. Immune responses can be difficult. I really struggle with the T and find myself despairing!

[MGNP]

Hi! I was just diagnosed 1 week ago with AIED. Sounds rare...so rare I cant find any data on how many people actually HAVE it. Mine is likely a secondary issue as I have a history of celiac disease and a "lupus like" syndrome. I'm curious about your treatment!