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
Thank you for explaining how all of this is interrelated and it really makes sense.I glad that you have medical people around you who understand this and are helping you to regain more control over this. It must all be very frustrating and uncomfortable and I’m sorry to hear that you have to miss you son’s graduation, but important that you care for yourself as needed. In a way this is a graduation gift to him and a life lesson, that it is important to care for ourselves so that we can continue to care for others. I hope that your husband can live stream the ceremony to you it take pics so you have a visual memory of this big event. I’m glad to hear you are making progress and try to be patient with yourself as best you can-
Thank you, Beth. Your comment overflows with compassion and care and I so appreciate that. And, yes, you’re right about that life lesson. I hadn’t thought of that perspective. Hopefully I can watch the graduation somehow.
Sending love and light your way. Feel better soon, Audrey. ❤ ❤ ❤
I appreciate your love and light, Penny.
Hi, Audrey, I read your post, and this may not help, but I wanted to respond. In 2020, I was attacked by a special education student in my classroom, and I ended up with a traumatic brain injury. (While I am different in many ways, I am thankful for my recovery, though it was long and very intensive.)
I understand your frustration, and brain fatigue is ongoing for me too. And can happen so quickly and that it is hard to explain to others.
After trying many different approaches (PT, medications, injections) for extreme 24/7 headaches, my neurologist finally sent me to a pain center. It sounds like your PT is wonderful. If you feel like you need to look into anything else for relief, a pain center was the answer for my headaches. They discovered I had nerve damage from the incident at my c2 and c3, and now I get radiofrequency nerve ablation, which helps so much for headaches. The other suggestion I wanted to mention is since you have brain/eye issues (as I did), a NeuroOptomotrist and vision therapy did wonders.
These would not be convenient locations for you, but for reference, I go to https://www.nuraclinics.com and https://thrivewithvision.com
Wishing you the best.
Janell Madison Literary Publicist BlueCottageAgency.com Representing and Promoting Literary Arts
Janell, first I am deeply sorry for the traumatic brain injury you suffered when attacked by a student. That is awful and horrifying and whatever other words I might insert here to even begin to describe your experience.
Second, I’m thankful you’ve found some relief from your many symptoms. I am thankful that my headaches are mostly gone. Prednisone helped because it reduced the inflammation and thus the severity of my symptoms.
I appreciate your links on the brain-vision issues. That’s an area I need to improve upon also.
Mostly I appreciate that you “get” what I’m going through, especially the brain fatigue. I was at a store yesterday with Randy looking for greeting cards. Even before we went in, I said, “I hope I don’t see anyone I know because I don’t feel like talking. I just want to get cards and leave.” Sure enough, we ran into a friend and that turned into a conversation (mostly me trying to listen). I felt my brain fatigue coming on and I finally had to excuse myself and just get the cards. Something so simple caused my symptoms to flare.
So, yeah, I can relate to your situation. Not in the same ways exactly, but enough to feel like I understand and you understand. Thank you, Janell, for your support.
Thanks for sharing your journey, challenging as it must be. I had never heard of this affliction until you mentioned you were suffering. I hope with therapy you’ll be able to manage Audrey. Thoughts are with you…
Thank you, John. It was unfamiliar to me, too. I’m hoping the neurologist can provide answers as to why a virus has twice affected my right ear, first in hearing loss/near deafness in 2011 and now with the nerve affecting balance. I see him in a few weeks. It takes a long time to see a specialist…
This is a lot of suffering! 😢 I sincerely hope that your doctors & therapists can help you get though this to some semblance of “normal” – and soon. 😊 I think we’re all (I hope) beginning to have more respect for viruses (it’s just the flu!) and all the havoc they can wreck on a person.
Thank you. I’m improving. But every day is different, even hours within a day. I agree about having more respect for viruses, although many people still do not. Argh. I’m itching to get out with my camera. I tried in my backyard the other day and did OK until I aimed the lens up. I’m not ready yet to do much photography. Eventually, hopefully, soon. I miss my life pre vestibular neuronitis diagnosis.
You have beautifully stated the physical, mental, and emotional roller coaster of an illness that is mostly unseen and misunderstood ‘on the outside’ by other people. Sometimes the isolation of it all is overwhelming. I am so sorry you are going through this, Audrey, and I am sending deeply heart-felt healing prayers for you.
Thank you, Dawn, for your prayers. I know you endure a lot of that “unseen” with your rheumatoid arthritis. I’m sorry. Thank you for writing about your challenges. It helps to get it out there and to increase awareness. I think of how mental illnesses are not seen either and the stigma attached and how difficult that is for those who are dealing with challenges. Education and compassion are needed. We can make a difference. And we can care for one another in the all of this.
So sorry to hear that you will miss this milestone with your son and I am sure he understands – still poo 😦 Wishing you the BEST – continue doing what you are doing for you and your health. Take it Easy ((((loveandhugs))))
Poo is right. That’s good word which made me laugh. Yes, he understands, but it’s still hard for both of us. Thank you for your love and hugs.
This is a helpful explanation of your disorder, one that we all hope we do not have to go through what you are dealing with. We take our brain for granted to do its automatic work but a roadblock can throw so many things off. Glad to hear you are improving bit by bit and am sure you are missing using your camera.
You’re right. We take a lot for granted until we don’t. Yes, I’m improving. And, yes, I miss my camera. I took it out in my yard the other day and shot some images. Post coming. I’m not near ready to do a lot of photography. But it’s on my goals list in therapy.
This is such a difficult time but you are handling it with grace and as usual–educating the rest of us on what this condition is like for you. You are correct — I am sure most of us have no idea what this would be like to endure and your explanation of the road blocks is a great analogy. I have been and continue to pray for your complete recovery. I know you are so disappointed to not be with Caleb for the graduation ceremonies but it makes sense to not try to do too much that will leave you feeling even worse. Take care of yourself and do what you need to do to work on your recovery.
Thank you, Beth Ann, for your prayers, your encouragement, your support, your love.
Ohhh…thank you for sharing your experience with your brain issues! When the brain doesn’t work exactly right your analogy is perfect! It is exactly how it feels to me during a PTSD episode. Too much information and the brain can’t process it all. I have used those same technics (closing eyes, deep breaths, sometimes ear plugs) to control the situation. Many years of dealing with my situation and I just learned to accept that I must live with it, control it best I can, and educate those closest to me when I have an episode on how to correctly deal with me during and after. BTW, calling someone crazy is NOT helpful, nor is being an expert when you have no idea what that person is experiencing, also NOT helpful!!!
So glad you have a great support team surrounding you. Take it from experience extremely hard when you have to go it alone or with minimal help.
Hopefully you will have someone who will be able to be with your son on his big day.❤️🤗
🙏 for a quick resolution.
Paula, I deeply appreciate your comment since you “get it” from the perspective of PTSD. I’m thankful you’ve found ways to manage, like closing your eyes, deep breaths and ear plugs. I also use those along with, as you know, coloring when I was at the height of Prednisone side effects.
You are exactly right that labeling someone as “crazy” is NOT helpful. I actually detest that word when associated with mental health. And I much prefer the words “brain disorder” to “mental illness.” You are also right that input from people who have no clue is NOT helpful. Compassion, kindness, care, patience and understanding are. I shared with my physical therapist that I haven’t necessarily felt supported (by people I thought would be supportive). Can’t see it, so what’s wrong with you, Audrey? He suggested (in jest) that perhaps I could wear an arm sling. My reply, “I have one in the closet (from when I broke my shoulder). Good idea!” Sometimes you just have to laugh so you don’t cry.
I can really relate!
I know you can. And I do appreciate that you can.
Even though we’ve discussed this it’s still so crazy to read about it. Praying for your full recovery!
Thank you for your care, compassion and prayers, Gretchen. I appreciate all.
Sorry to hear you aren’t able to make the graduation. I know it will be difficult to be home that day and not with your family.
As you recover it’s great to know your limitations and take frequent breaks. Resting short periods before your are completely wiped out helps your stamina. Someone above mentioned a neuro optometrist.
If your doctor thinks that is a possible need in your future, however remote, get an appointment made now as there are very few around and the wait is long. This last winter I saw a neurological optometrist (extra training specifically for eye issues related to brain). He did a extremely thorough examination (and yes it stressed my vision at the time) but ultimately he determined the course I was doing through my physical therapy was doing its job and I didn’t need further appointments with him.
This article is a great description to help caregivers understand what is an unseen injury and that patience on everyone’s part is so necessary. As a teacher l know from experience that teens (and their parents/coaches) push them too much after a head injury – even a minor one. Audrey, our prayers for your recovery continue.
Rosie, I appreciate your insights from someone dealing with the fall-out of two concussions. You “get it” and, in doing so, you are an invaluable support to me. Thank you.
I can just imagine how teens are pushed too quickly following head injuries.
Yes, I will definitely miss celebrating with Caleb. But at least Randy will be there and he will assure your godson is honored and celebrated. If Purdue wasn’t such a long drive, I would certainly attempt to attend commencement. But I’m not anywhere near the point of being able to tolerate travel and a massive crowd.
Dearest Audrey, I read your email and I am so sorry for what you are going through. I’ve not heard of this diagnosis but know of people who suffer with vertigo. How disappointing to be unable to attend Caleb’s graduation. I hope you see improvement very soon. Sending ❤️ to you as I don’t know what else to do.
Thank you, Ruth. I appreciate your love and care. I’m improving. It takes time and I don’t know that I will ever fully “recover.” But if I can manage… Today I scheduled vestibular rehab therapy through the end of June. What started as six sessions has now stretched to ten. But I’m OK with that as long as PT helps, and it is. Very thankful for Medicare!
Glad you notice improvement. Encouraging. Yes thank goodness for Medicare! Sending positive energy to you across the miles ❤️
I feel your love. 🙂
I’d missed your post telling of your condition so I’m glad you told me about it.
Audrey – sounds about as scary as it gets…and you can still write…well! My daughter lives with a cavernous malformation that causes right side (her writing side) numbness, makes me crazy. At least my arthritis hurts, I know what to swear at or whom. You set a tough example for us all and, for SURE! thank God for Medicare. Keep up the good work and GOD BLESS!!
Thank you, Sandra. I’m sorry your daughter deals with a cavernous malformation. That sounds debilitating. I’m improving. It takes time and hard work and not sure if I will ever be back to pre-this. Hopefully the neurologist can offer insights when I see him in two weeks.