Author Topic: Diagnosed with AIED...alternative treatment what's helping me  (Read 15369 times)

Offline AIEDman

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I was recently diagnosed as having suspected autoimmune inner ear disease. (AIED)
After making little progress on NHS, I saw a private ENT and had MRI,CT Scan, and various autoimmune blood tests.

It has been a bit of a journey at this point but want to focus on whats helped me.

i have been lurking in the forums over the last year while awaiting a diagnosis as the symptoms  are really similar to atypical Ménière's. Low frequency hearing loss, extreme tinnitus and worsening  speech discrimination throughout the day, I first notice this during long board room meetings. I had no vertigo etc.

During that time i tried the JOH programme, which made me feel a little better but my hearing didn't improve.

The normal treatment for AIED is high dose  steroids (Prednisone), but i was a bad patient as i  wanted explore other alternatives with potentially less long term side affects that i feel i was happy taking longer term and would'nt dampen down my whole immune system.

 While searching on google I found a Pdf

''Treatment of Autoimmune Inner Ear Disease :What We Know in 2014 by House Ear Institute  Advancing Hearing Science, by a ENT specialist.

In the article it suggested the following anti inflammatory Food/Supplements may be useful for Patient  Sense of Control

Green tea (decaf): 3 cups/d or capsules

Tumeric: ¼ - 1 tsp/d

Extra virgin olive oil: ½-1 TBSP/d

Dark choc (70% cocoa): 20 gm/d

Vit D: 1000-5000 IU/d

Fish 2X week

Probiotics: 10-30 billion units/ day

Ginger, rosemary, citrus, pomegranate

Since taking these for a 2-3 months my hearing has improved significantly.

For Citrus element i'm taking High Potency Quercetin, i think other have used this also as an alternative to the bioflavionoid in the JOH programme.

From my own research i believe the theory is these help to regulate the immune system while also boosting the immune TH2 response.
I have also added some another anti-inflammatory Food/Supplements that in theory boost the TH2 response.

I have no medical training, all i know is my hearing has improved and i'm happy to provide futher details of exactly  what i taking  to anyone diagnosis with AIED.