Inner Ear condition

[DebatDG9]

Hi

Does anyone have another autoimmune condition affecting inner ear?

I’ve had a couple of bouts of ‘acute labyrinthitis’ often have itching in one ear that can get quite sore, constant tinnitus and intermittent hearing loss in same ear. GP dismissive but now I’m wondering if it’s another auto immune condition to add to my ever growing list

[butterflyEi]

Hi DebatDG9

Hopefully someone with more experience will see your post after the weekend. I have not had labyrinthitis however I do have tinnitus and have had itching in the ear and still occasionally get an itchy eye which improves when I concentrate on bathing my eyes and using eye drops. The ear itch improved once medicated for the so called itch of PBC in general however I do remember using petroleum jelly (Vaseline) which helped with the soreness in the ear. Tinnitus is something that is in the general population as well, unfortunately there is no cure or treatment however there are some self help pages on the internet suggesting yoga, acupuncture and/or mindfulness and also having a sound on to divert your attention from the ear noise. best wishes

[CeeCee101]

I’m not a doctor but wonder if Sjogren’s can cause these things due to overall dryness? Or if the dryness we get in the mouth and eyes from just PBC can cause this? I do know some of my related symptoms like itchy ears lessened greatly along with stuffy sinuses when I went gluten free.

[Caseymayr1102]

Hello,

Inner ear issues are what started me on this autoimmune roller coaster. I’ve also since developed lupus. Liver stuff was the last thing to appear in 2018. I went through years of testing & figuring out what was going on. Had terrible vertigo that would knock me out for days. Hearing loss, ringing….it was awful. I finally got with an ear specialist who dealt with these conditions. He did a blood test on me that was new at the time. That was 2002. It pinpointed an autoimmune condition causing my issues. I eventually had surgery to place a small shunt in the inner ear. It caused more hearing loss & ringing, but I no longer get room spinning vertigo. The dr was the one to tell me that I’d likely have other autoimmune issues come up. He was right. Lupus in 2005 & PBC in 2018. Also had breast cancer at the same time they diagnosed PBC.

Keep advocating for yourself & don’t stop until you get answers.

Take care

[Zelda5 in reply to Caseymayr1102]

What autoimmune disease did they find in 2002?

[alpha3]

I've had several bouts of labyrinthitis over a number of years, leading to hearing loss. My daughter has also had this several times and now severe hearing loss. I'm sure that this is an autoimmune condition and maybe linked with PBC

[TylerA]

I had labyrinthitis a couple of years prior to my PBC diagnosis and I have wondered if this kickstarted the PBC. I also get itchy ears but am not sure if that’s because I often use ear plugs to help me sleep! Funnily enough i had shingles prior to diagnosis too and I still get some tenderness on the left side of my scalp when i overdo it. It’s just seems strange to me that I had both these conditions in the two years prior to my liver bloods going array. I used to get bouts of sudden dizziness when I first started urso but fingers crossed that seems to have gone now.