IMAGINE YOU’RE ON THE ROAD, when, unexpectedly, you encounter a Road Closed Ahead sign. Now you must take an alternate route to reach your destination. You follow the detour signs, which lead you along twists and turns of back country roads. You are in a hurry and frustrated. But eventually you are back on your mapped route, arriving much later than planned.
That scenario is familiar. We’ve all experienced such travel detours. But not many have experienced vestibular neuronitis, a health issue I am currently facing. The road closed/detour analogy is the best way I can explain what’s happening inside my brain.
MULTI-LAYERED & COMPLEX
Mine is a complex diagnosis, a neurological condition resulting from an inflammation of the nerve(s) in the inner ear, in my case the right ear. The apparent cause, a viral infection. In 2011, a virus caused me to lose nearly all of the hearing in my right ear during an episode of sudden sensory hearing loss. This most recent virus affected the balance in my right ear. My initial symptom of feeling off-balance followed a really bad cold in early January. (Not COVID; I self-tested negative for that, twice.) I didn’t think too much of the off-kilter feeling, hoping it would pass. It didn’t.
My symptoms progressed: fullness, ringing, clicking and minor pain in my right ear; hyper-sensitivity to sound; double vision; awakening with headaches; feeling like someone slapped me on the right side of the head; unexplained anxiety; rosacea; fatigue; vertigo (only while sitting up from a supine position or rolling onto my right side in bed) and more I’m probably forgetting. I felt like my brain was working really hard to manage auditory and visual input, processing conversations, and balance. I still feel that way.
Back to that road closed analogy. The nerves/pathways in our brains are all interconnected, one leading to the other. Kind of like the system of roadways we follow to get from Point A to Point B. Now there’s a blocked road inside my head and my brain is struggling. It’s taxing to determine how to make this all work. Vision. Hearing. Maintaining my balance. I’m feeling brain fatigue.
One day I may feel fairly normal, the next, not so much. Or even through the course of the day, how I feel is affected by input into my brain. If I’m out and about, which I mostly am not, I quickly feel overwhelmed. Even by something as simple as a one-on-one conversation.
Yet, today I see a lessening of my symptoms. The anti-inflammatory steroid Prednisone, as much as I disliked the insomnia, heart palpitations and anxiety side effects, reduced the nerve inflammation. My symptoms are less severe, but still linger under or at the surface and sometimes flare.
I am in vestibular rehab therapy, working with a skilled, knowledgeable and compassionate physical therapist who is determined to help me retrain my brain, to get me back on the right route. Ryan tells me I’m improving, even if I don’t always see that. I appreciate his encouragement and specialized training in the exact therapy I need. I listen. I ask questions. I do my exercise homework. Already I’ve seen improvements in my balance.
My vision has improved, too, although I still must work hard to focus and not see double. I can now tolerate my computer screen for more than 10 minutes. Headaches are mostly gone as is the feeling of being slapped on the side of my head. And I no longer need to close my eyes during a conversation because I can’t handle simultaneous visual and auditory input. That said, I will occasionally close my eyes when I feel overwhelmed and need to concentrate solely on hearing.
LIMITATIONS, FRUSTRATION, DISAPPOINTMENT
I have my moments when I feel depressed and frustrated and wish I was “all better.” I don’t know if I will ever be “all better” or whether this is something I will have to learn to live with and manage. There are moments when I feel overwhelmed. This whole vestibular neuronitis is difficult to explain and you can’t see it, so people don’t necessarily get it.
I’m sad because a long-planned trip to Indiana this coming week to attend my son’s graduation from Purdue University with his master’s in computer science will not happen for me. I am disappointed that I can’t be there in person to celebrate, to hug him, to congratulate him on his accomplishment. But I recognize my limits. I can’t handle a long road trip and attending commencement with the masses. It would be too much for my brain. I’m not even attending church yet because I can’t tolerate the organ. I’m not even grocery shopping because of the sensory overload. Mostly, my interaction with others is limited because my brain can’t handle much.
But onward I go, navigating away from the closed road in my brain to alternative routes that will allow me to reclaim my life. Soon. I hope.
NOTE: By writing this post, I hope to encourage others who are on a similar journey or who are supporting loved ones. I also aim to provide info on this unfamiliar-to most condition.
© Copyright 2023 Audrey Kletscher Helbling