Minnesota Prairie Roots

Writing and photography by Audrey Kletscher Helbling

Roadblock inside my brain May 8, 2023

Filed under: Uncategorized — Audrey Kletscher Helbling @ 5:00 AM
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Just like along US Highway 14 in southern Minnesota, I’m dealing with a closed road in my brain. (Minnesota Prairie Roots copyrighted file photo)

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.

My problematic right ear… (Photo credit: Randy Helbling)

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.

Kind of how my brain feels right now. Artwork by Bill Nagel, exhibited at the Paradise Center for the Arts earlier this year. (Minnesota Prairie Roots copyrighted file photo March 2023)

BRAIN FATIGUED

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.

A tablet of Prednisone, a med which I took for two weeks. (Minnesota Prairie Roots copyrighted file photo)

SYMPTOMS LESSENING

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.

No big road trips for me as I navigate through vestibular neuronitis. (Minnesota Prairie Roots copyrighted file photo)

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.

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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

 

Elusive sleep & a whole lot of other stuff April 14, 2023

Filed under: Uncategorized — Audrey Kletscher Helbling @ 5:00 AM
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Coloring can be calming and therapeutic. (Minnesota Prairie Roots copyrighted file photo)

IT’S ONE IN THE MORNING and I am wide awake. My head hurts. I’m restless, unable to fall back asleep after awakening to use the bathroom. I’ve only slept 2.5 hours. A long night looms. My efforts to settle in and resume sleeping aren’t working. Randy needs his rest so I head to the living room and curl into the recliner.

I’m feeling jittery. I switch on the table lamp, pick up a thick coloring book from the floor, pull out the 64-crayon box of Crayolas. Soon I am rhythmically coloring a cat with an orange crayon that is way too reddish-tinted for a domesticated feline. Maybe a tiger. But at this hour I don’t care. I just want to feel some calm and methodically working crayons across paper helps.

When I finish coloring the cat clutching a bouquet of flowers, I decide it’s time to try sleep again. I pull two fleece throws around me, snuggle in for some shut eye. I intentionally aim to relax my body, quiet my mind. I can’t. I hear a pleated shade in the dining room click against the window frame in the gentle wind of the night. I hear the hum of the refrigerator. Every noise is amplified.

By now, I guess the time to be 3 am. I need my sleep. My head still aches. I am overtired, exhausted. I decide to move to the couch. I clear the space of Randy’s cellphone and extra pillows and yesterday’s newspaper. I hesitate to lie down, apprehensive about the vertigo that comes when I need to get up. As soon as I’m lying down, I notice the curtain is not completely pulled shut, letting in a sliver of light. I ease myself up to avoid dizziness, walk across the dark living room, pull the fabric together. Back to the sofa. The red and blue lights of a passing ambulance pulse through the room. I remain on edge, alert, unable to achieve what I most want and need. Sleep.

Blackbirds cluster in a tree. (Minnesota Prairie Roots copyrighted file photo March 2022)

THEN COMES BIRDSONG

Eventually I fall into a fitful sleep. I awaken well before dawn. Slowly, morning is rising. I hear the first birds tweeting, only a cardinal’s trill distinguishable like a solo in the birdsong. Occasionally, vehicles pass by on our arterial street, an indication that daybreak is upon us. Traffic increases as time passes. Still, I’m hoping for sleep in this morning dark.

But it doesn’t come. The rectangle window in the east-facing front door lets the spotlight of morning into the room. That light follows a direct line to my head. The head that still hurts.

Soon I hear Randy rustling, up and getting ready for work. It’s 6:45 am. Then I slowly ease myself up, conscious of my need to proceed slowly. After only four hours or so of sleep, I am up for the day.

This is kind of how I feel right now. This art was created by then Faribault Middle School 8th grader Mohamed for a student art show at the Paradise Center for the Arts, Faribault, in 2021. (Minnesota Prairie Roots copyrighted file photo March 2021)

DREADED MORNING NECESSITY

In an hour, after breakfast, I will remove the lid from a medication bottle, spill six tablets onto the counter, swallow two at a time with water, the bitter taste lingering on my tongue. These are the cause of my insomnia, my restlessness, my jitters. Prednisone. A steroid designed to calm the immune system and reduce inflammation.

My body needs calming, healing as I deal with feeling off-balance, vertigo, double vision, headaches, ear pain and fullness, tinnitus and more, likely triggered by a virus I had in January, according to my medical team. Viruses and I do not do well. I lost my hearing in my right ear in 2011 during an episode of sudden sensory hearing loss caused by a virus. Thankfully this latest virus is affecting only my deaf ear and not my good ear. Otherwise I would be deaf.

Prednisone and I do not do well together. I took it in 2011 and in 2005 during a 3-month severe case of whooping cough. I am hyper sensitive to the steroid’s side effects of restlessness and insomnia. Yet, I understand that if I want to reduce the inflammation in my body (in my 8th cranial nerve), I need to stick with the 14-day regimen. I want to feel well, to function better, to do the things I love. I hope this med works.

A neurology visit is scheduled in late May, the earliest I could be seen. Physical therapy is planned for my balance issues and vestibular neuronitis. Many times throughout the day I remind myself that I can do this. And when I’m unable to sleep or feel overwhelmed by the restlessness side effects of Prednisone, I will reach for the coloring book, pull out the Crayola box and rhythmically work crayons across paper.

© Copyright 2023 Audrey Kletscher Helbling

 

I can’t hear you March 31, 2011

Filed under: Uncategorized — Audrey Kletscher Helbling @ 8:01 AM
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COULD SOMEONE PLEASE answer the phone, turn off the radio and fix the potholes?

That isn’t going to happen. Not for me now, anytime soon or perhaps ever.

Welcome to my new world of ringing telephones, annoying transistor radios and bothersome potholes. I’ll explain after giving you some background.

Three weeks ago I suffered a sudden sensory hearing loss. One minute I could hear mostly fine in my right ear. The next minute it was as if someone had closed the door to my hearing.

At this point, why I suddenly lost 70 percent of the hearing in my right ear remains an unknown. It could be related to an ear trauma three years ago at a Wisconsin waterpark where a waterfall pounded my head. That caused permanent nerve damage, and some hearing loss, to my right inner ear. Or it could be the result of a viral infection, or something else.

Whatever the cause, I now have only 30 percent of my hearing in my right ear.

Thus, the ringing telephone, the transistor and the problem potholes have become issues for me. It’s not like I didn’t try to eliminate all three.

I tried a 10-day mega dose of inflammation-reducing steroids in an attempt to salvage some, if not all, of my hearing. The Prednisone didn’t work, only made me jittery, sleepless and emotional. I noticed no improvement in my hearing. The drug is typically most effective within 48 hours of symptom onset and my treatment started long after that.

I see a specialist next week to recheck my hearing and perhaps get some answers.

I took this photo of my eyes last week when I wasn't getting much sleep due to the effects of my steroid treatment. I'm still having sleep issues.

For now, I’ve accepted the fact that this is my new world of hearing. Sometimes the tinnitus is so bad that I joke to my husband, “Can you please answer the telephone?” Only problem, the telephone is inside my right ear.

As for the transistor, those of you old enough to remember transistor radios will also recall how they were often plagued by poor reception resulting in lots of static. I’m hearing that type of static now in my right ear more often than I like.

With my “bad” right ear I hear just “noise,” nothing as clear or distinct as an individual word.

Driving over an uneven roadway surface, like a pothole or a crack, hurts my ear with the thump echoing unpleasantly inside my ear.

I’m trying to adjust to this hearing loss. But, honestly, it’s not always easy. I can barely tolerate the organ music in church and singing isn’t too much fun any more.

My right ear, in which I've lost 70 percent of my hearing due to a sudden sensory hearing loss.

But most difficult for me, like anyone with a hearing loss, is the inability to clearly hear conversations. And for me, a blogger and writer, that’s a very big deal. I need to hear, and hear accurately.

All too often I find myself asking others to speak louder. I’m sure they’re thinking, “Why doesn’t she just get a hearing aid?” It’s not that simple. An audiologist and an ear/nose/throat doctor have told me that a hearing aid will not help, not with this type of hearing loss.

Put me in a room full of people, and I struggle to hear.

The other night while waiting in a check-out line at the grocery store, I was frustrated because I couldn’t hear everything the young male checker in the lane next to me was telling the bagger. He was offering her relationship advice, something about his fiancée who’d gone to college on the East Coast and who’d cheated on him. I caught the advice about hanging on to someone you care about and to, basically, not mess it up. It would have been a great blog topic, but I couldn’t hear enough of the conversation to accurately pull together a post. My days of eavesdropping may have ended with this sudden sensory hearing loss.

Despite all of this, I realize my health issues could be much worse and that many people suffer from severe hearing losses.

Like all other challenges I’ve faced in my life, I’ll adjust, adapt, accept and move on.

Yet, if I feel the need to cry, which I have several times already, I’ll cry.

© Copyright 2011 Audrey Kletscher Helbling