Noob here - just saying 'hello' - advice welcome!!

[SleepyInSeattle]

Hi there! This looks like a great forum. I lost my right ear to Autoimmune Inner Ear Disease about 2 months ago and am looking for advice.

My audiograms have not changed much since it happened. I can hear some low-frequency sounds but the mid-to-high frequency loss is severe-to-profound, and my word recognition is barely 40%.

It happened literally in 2 seconds.

Within 24 hours I was on 60mg of Prednisone per day - on that dose for 5 weeks, and now I am down to 30mg/day - working my way to zero, hopefully.

Last fall I was diagnosed with Lupus, Sjogren's, APS and Raynauds, so I have a "complicated" immune system, to say the least..... I have been taking hydroxychloroquine (Plaquenil) for that stuff for the last 9 months.

I have also had blood clots in one eye, but fortunately recovered quite nicely from that - take one 325mg aspirin per day and fish oil to avoid clots (per doctor's orders - trying to keep me off Coumadin!).

I am active and work outdoors in a pretty physical job. This hearing loss is just the latest challenge, I guess, along with the potential complications from the other stuff.

Because of the hearing loss, I am now also on 25mg of Methotrexate per week....hopefully that will keep my body from attacking my other ear, and also keep the Lupus and Sjogrens from attacking my other internal organs. Or that's the theory, anyway - I am learning they don't really understand much about this stuff so it's all kind of a crapshoot.

Anyway - that's my situation, in a nutshell. I'd really welcome any advice - specifically about what a newbie should know about hearing loss, and especially advice from anybody who's dealing with the autoimmune stuff and fear of losing BOTH ears.

At the end of the month, I am due for another audiogram and to talk about hearing aids. They said 40% word recognition is the cutoff in WA State for insurance to help pay for an aid, and I think the audiologist was trying extra hard to get me to 40% so I'd qualify, but she was not terribly optimistic that it would help me to have one. I plan on trying everything I can, regardless.

I miss stereo sound. I miss music. I miss hearing people come up behind me on my right side!!!
And I hate, hate, HATE having to say "WHAAAT?!" all the damn time.

Anyway - thanks for reading and any advice you have. I am sure I will learn a ton here - I have been "lurking" a bit and reading lots of threads and thought I should introduce myself, so HI!

[Don]

Originally Posted by SleepyInSeattle

Hi there! This looks like a great forum. I lost my right ear to Autoimmune Inner Ear Disease about 2 months ago and am looking for advice.

My audiograms have not changed much since it happened. I can hear some low-frequency sounds but the mid-to-high frequency loss is severe-to-profound, and my word recognition is barely 40%.

It happened literally in 2 seconds.

Within 24 hours I was on 60mg of Prednisone per day - on that dose for 5 weeks, and now I am down to 30mg/day - working my way to zero, hopefully.

Last fall I was diagnosed with Lupus, Sjogren's, APS and Raynauds, so I have a "complicated" immune system, to say the least..... I have been taking hydroxychloroquine (Plaquenil) for that stuff for the last 9 months.

I have also had blood clots in one eye, but fortunately recovered quite nicely from that - take one 325mg aspirin per day and fish oil to avoid clots (per doctor's orders - trying to keep me off Coumadin!).

I am active and work outdoors in a pretty physical job. This hearing loss is just the latest challenge, I guess, along with the potential complications from the other stuff.

Because of the hearing loss, I am now also on 25mg of Methotrexate per week....hopefully that will keep my body from attacking my other ear, and also keep the Lupus and Sjogrens from attacking my other internal organs. Or that's the theory, anyway - I am learning they don't really understand much about this stuff so it's all kind of a crapshoot.

Anyway - that's my situation, in a nutshell. I'd really welcome any advice - specifically about what a newbie should know about hearing loss, and especially advice from anybody who's dealing with the autoimmune stuff and fear of losing BOTH ears.

At the end of the month, I am due for another audiogram and to talk about hearing aids. They said 40% word recognition is the cutoff in WA State for insurance to help pay for an aid, and I think the audiologist was trying extra hard to get me to 40% so I'd qualify, but she was not terribly optimistic that it would help me to have one. I plan on trying everything I can, regardless.

I miss stereo sound. I miss music. I miss hearing people come up behind me on my right side!!!
And I hate, hate, HATE having to say "WHAAAT?!" all the damn time.

Anyway - thanks for reading and any advice you have. I am sure I will learn a ton here - I have been "lurking" a bit and reading lots of threads and thought I should introduce myself, so HI!

I have a very close family member who has almost the exact same diagnoses, if you leave out the Lupus (so far). Things (symptoms) seem to come and go. The latest is dry eyes from the Sjogrens.

One question, for your insurance, does your word recognition need to be 40% or better, or worse than 40%?

[SleepyInSeattle]

They say if word recognition is less than 40%, hearing aids won't help, it'll just amplify the confusion. Not sure I believe that....I am very keen to try one anyway. I'd at least like to be able to hear music a bit more "surround sound" even if it's distorted.