Hi All,
I would like to share our story. My wife was diagnosed with Relapsing Polychondritis few years ago. About four years ago, she lost her hearing in right ear. Currently she has damaged left ear hearing and she is using hearing aid (but it’s only working for her left ear, right ear is completely deaf, so hearing aid from right ear is transmitting the sounds to her left ear).
After so many years fighting with that, she has tried almost everything I think. Below attaching a list of medicines that she took recently (there is a lot of more, but that are most recent ones) and also her description of the problem. We’ve had some quiet years (like 2023 - 2025, when all of the problems went off), but this year is completely nightmare. There is practically no month in this year that was calm for her. Each month she has smaller or bigger problems with her hearing on left ear. She can hear her pulse, ringing, rumbling, etc. And her hearing is then very, very limited.
As previously there were more symptoms like red eye, some cough problems, her nasal cartilage has changed, all of the cartilages in her body were painful and some more, currently she has only problem with her hearing, so I think it somehow changed from Relapsing Polychondritis to Autoimmune Inner Ear Disease.
We were visiting a lot of doctors, professors, scanning her brain, her ears. Everything looks good there.
Sometimes I am just thinking if she is maybe somehow drug resistant. And also sometimes I have a hope that it will just disappear or it will turn out that it’s completely different disease… But yeah… It’s a hope.
Is there anyone who has similar case? Or do you know someone with similar case?
Feeling described by my wife:
Usually, when I wake up in the morning, I can already tell that something is changing. Even when the episode has been going on for several days, I can always tell in the morning whether my hearing is worse or about the same as the day before.
It starts with a pulsing sound in my ear. I feel that it is synchronized with my heartbeat, like I can hear the blood pulsing. Sometimes it is more noticeable and sometimes less. I also get increased tinnitus. I have tinnitus all the time, but during these episodes it simply becomes more intense. The tinnitus sounds as if my ear has become “sensitive” to sounds — a kind of ringing as if the ear were somehow “damaged.”
I think I can only hear the pulsing in my left ear, which is the ear that still has hearing. I don't hear the pulsing in my right ear, which is deaf, but the tinnitus in that ear also becomes slightly worse.
During the first few days, there are better and worse moments. Sometimes the pulsing disappears and then comes back. However, when the pulsing is present, my hearing also gets worse. It is not that everything simply becomes quieter — rather, I understand less and less of what I am hearing. Some sounds start to become distorted or somehow “warped.”
Then, day by day, the situation gets worse. Each day I have more difficulty processing sounds, and I can hear and understand less and less.
This usually lasts for about two weeks. Then, suddenly, at some random point during the day, I get a sudden impulse or high-pitched tone in my left ear. At that point, my hearing starts to return to normal. The tone is constant and can last for several hours, sometimes even throughout the night. By the next day, my hearing is back to normal, the pulsing is gone, and the tinnitus is back to its usual level.
When my hearing is tested with an during one of these episodes, my hearing levels are significantly worse than my usual baseline. After the high-pitched tone occurs, my hearing returns to the previous level.
Another thing I have noticed is that before the hearing deterioration starts, and during the first few days, I get a feeling of clicking or popping in my ear. Every time I swallow, my left ear clicks or pops. This only happens in my left ear. Later, during the worst days, it happens less and less often, but it can still occur occasionally.
List of medicines:
- Steroid Pulses
- Hydroxychloroquine (Plaquenil)
- Hyperbaric Oxygen Therapy Sessions
- Intratympanic Steroid Injection
- Methotrexate
- Prednisone (Encorton)
- Adalimumab (Yuflyma)
- Enoxaparin Sodium (Neoparin)
- Doxycycline (Unidox Solutab)
- Cyclophosphamide (Endoxan)
You’re ignoring this member’s posts.
Poland
Melbourne