The agony of the first days
I recently rediscovered an email I sent to a friend just a few days after my sudden hearing loss on August 4, 2017.
Reading it brings back both scary and sad memories, but it also fills me with gratitude for the time that has passed. Little by little, I've learned to cope with my conditions more calmly. While I'm still facing some battles, I can confidently say I'm in a much better place now.
I share this today to convey a message of hope. As fellow hearing loss/vestibular warriors, our resilience is our superpower. I'm on this journey with you, and that's why I'm sharing this information – a reminder always to prioritize yourself.
DON'T GIVE UP.
Read, educate yourself, advocate for yourself, and if one door doesn't open, knock on the next one. I followed this approach, and it was a crucial and beneficial step in my journey to recovery.
“Don’t be discouraged. It’s often the last key in the bunch that opens the lock.”
Email from August 17, 2017
"Regarding my health status, so many things have happened... I have seen two specialists after I was in the ER again last Friday. The cause of my hearing loss is still unknown, and frankly, most cases are like this one are inconclusive.
I saw an Otoneurologist yesterday. He is the UM Ear Institute and Research Lab director, so he has experience with patients like me. He told me yesterday that he believes I suffered from nerve damage to the cochlea (inner ear) due to a negative pressure in the ear or lack of blood flow; this could be caused by hormonal or chemical problems in the body. They say that they don't know for sure. It is very hard for them to see what happened to me; it can't be detected through a CT scan or MRI. Those tests were ordered to rule out a tumor or something blocking the ear canal.
After being on Valium, oral steroids, and other medicines for vertigo attacks, my doctor asked me to stop them and stick to the intratympanic injections for now. So, I got my 3rd injection yesterday. I'm getting another one on Monday and another one on Wednesday. But they said that if by the 3rd or 4th injection I still haven't gotten my hearing back, it is unlikely that I would, but there have been some "miracles" out there. After the 5th shot, I'm getting other audiology tests done and reassess. So, we'll see what happens.
Feeling dizzy and taking a moment to rest after one of the steroid injections of Dexamethasone was applied directly through my eardrum/ tympanic membrane.
I'm still suffering from horrible tinnitus. The head pressure and numbness have decreased, but ONLY when I'm in a quiet place, not walking much, etc. When I step outside to go to a doctor's appointment, I start feeling very weak, somehow dizzy, and the ear fullness comes back full force with some pressure.
I want to go back to my work, perhaps for a few hours each day, to see how I feel. However, my doctors have instructed me that I need to work in a quiet place and limit phone use as much as possible. In reality, I have to avoid loud noises or extreme silence. I can't be next to other people, I won't be able to tolerate the sound …."
EMOTIONALLY DRAINED
The initial weeks can be profoundly confusing and debilitating. I recall the intense pain, the countless tears, and the overwhelming sense of being lost, unable to comprehend what was happening.
Can you resonate with these feelings? Did you reach out to friends and family or keep it to yourself? Why?
What emotions consumed you during those early days and weeks? Anger, frustration, sadness, fear, shock—what dominated your thoughts?
Feel free to share your experience in the comment section below. Let's learn from one another and draw strength from the shared information. Community is power, and supporting each other provides resilience. I remember how crucial this was for me in the beginning when I was in considerable agony.
Wishing you a good, symptom-free day.
All the best,
Nicolle