← Return to Anyone out there with Autoimmune inner ear disease (AIED)?

Discussion
Comment receiving replies
@tinae

Hello, so yes mine will be the high frequencies as well. I’m just starting to reduce the prednisone now looking to see how bad it’s going to actually get trying to determine if the methotrexate is working if it is I guess I’ll stay on it for now. I did reach out to my audiologist, expressing to see if there’s a better hearing it out there that’s better with clarity, I will let you know what she says mine are called Phonax. I basically try to avoid really loud restaurants and encourage the people that I hang out with to just kind of do more of a one on one situation to where I can actually hear them. I think the biggest issue has been the TV I’m not sure if you know this or not, but my hearing aids have the ability by purchasing a device which cost $250 to actually Bluetooth into my television set so if I have my hearing aids in and I walk in my house and the TVs on it will actually sync right to my hearing aids, which I think you agree with the hearing aids out of the Bluetooth you can definitely hear better. I keep telling myself it could be worse which I’m sure you do too. There’s also another device which I’m waiting for which I’ll let you know once I get it again $250 of course but it seems to your Bluetooth so if you hour are out for dinner you can sit in the middle of your table and it should pick up the voices that are in that close vicinity of your dinner Party. I wanted to learn Spanish this year. I think I have to switch to sign language just a little humor and I’ll keep you posted. If I get any more information. Hopefully you’re doing OK psychologically it’s a lot to endure. I’m sure you like I was like what in the heck is going on? Who did I make angry and why is this happening to me but again it could be worse so try to stay positive and optimistic in that light. Have a great day. Thanks for sharing and I’ll reach out if I get any more scoop.

Jump to this post


Replies to "Hello, so yes mine will be the high frequencies as well. I’m just starting to reduce..."

Your hearing loss does sound very similar to me. I also have Phonak devices. I haven't yet purchased the TV Connector yet. I manage with captions which is not perfect but I get by and I can use bluetooth streaming to watch/hear stuff on my computer. Do you have the Roger device? That works well for hearing my husband when he wears it. It also works fairly well if we have a small group for dinner. But it doesn't work well in restaurants although it's supposed to because it picks up all the background sounds. Disappointing. But you're right.. we must stay positive. The sun still shines and life could be a lot worse! Thanks for your inspiration.