Stories - continued

Steve Arie is a Sydney based jazz musician and music teacher and plays multiple instruments.  Have a listen to Steve’s song “Meniere’s”

You tube: https://www.youtube.com/watch?v=a_4lYo448jw

Spotify: Listen to me on Spotify

Here is Steve's Story
“I have had Meniere's since 2017 and had never met or spoken to another Meniere's sufferer.

My hearing fluctuates but I have significant loss (particularly low frequency) in my right ear.  My left ear still has perfect hearing luckily. I wear a hearing aid in my right ear which helps quite a lot, especially in the studio (I have a home studio here, funnily enough I just finished a track called Meniere's -https://www.youtube.com/watch?v=a_4lYo448jw ) and also helps with the tinnitus when it is not too bad.Teaching is not that much of an issue. 

Performance can be quite challenging though as I often get distortion in my right ear which makes listening a bit difficult at times.I started having attacks in 2017. I had a couple of one-off attacks quite some time ago but they were isolated and I never really worried about them. For quite a long time I had hearing issues with my right ear, aural fullness and distortion and was diagnosed with eustachian tube disfunction which was eventually helped by short courses of prednisone.

But in 2017 after starting a course of prednisone I had a horrible vertigo attack that lasted for 14 hours. I then started having regular severe attacks which knocked me about. The first ENT i saw said it wasn't Meniere's as at that stage I had not had any hearing loss. By the time I saw the next ENT I had experienced hearing loss and he diagnosed me with Meniere's which was later confirmed by Miriam Welgampola. 

The attacks lasted for around 6 or so months. They became more frequent but less severe over that time until they just disappeared. I was left with bad tinnitus and hearing loss but was vertigo free for about 5 years.The vertigo came back in September 2022, just a few bad attacks and then went away again. They then returned in February 2023 and they were quite severe. I also started having drop attacks which scared the hell out of me, but after 4 or so months they went away again and then returned later last year. Thankfully the severity was not too bad, and they went away again, until about 3 months ago when I had 3 drop attacks in one day and then mild attacks.

 I have been vertigo free for the last 3 or so weeks. Not sure if that is due to the fluctuating nature of my Meniere's or whether the upper cranial chiropractor I have been seeing has made a difference.I am feeling a bit more positive now but still stress about having attacks. Luckily most of my attacks have happened at home, apart from a few outdoor disasters.I have read about the gentamicin injections and they sounded quite severe. In the midst of having bad attacks I did consider them. Miriam was of the opinion that I wouldn't need to have them. “

I asked Steve if music helps his stress levels.  “I didn't find that music helped with the anxiety. Sometimes it would stress me out more as when my hearing is not great and I am experiencing distortion in my right ear, music can become a bit unpleasant, which is horrible for a musician."

Steve’s websites

www.music-lessons.net.au

 www.stevearie.com.au