IT’S BEEN A YEAR. No other words exist to define 2023, a year in which I’ve been overwhelmed by fall-out from a virus in early January. Although I self-tested negative twice for COVID, my primary care doctor suspects I did, indeed, have COVID given the neurological and other issues I’ve experienced since then. I fully agree.
This is my story, one that needs to be shared so that others understand just how viruses affect some of us. This story needs to be shared also to offer hope to others. This story needs to be shared, too, so that anyone who is ill thinks twice about going to work, the grocery store, church, concerts, family gatherings or elsewhere, thus exposing others to infectious diseases.
To tell my story, it’s necessary to give some background. In 2005, at the age of 48, I caught whooping cough. I was sick, really sick, for three months. Gasping for air sick. Coughing until my stomach hurt sick. Exhausted, unable to sleep. In 2011, I lost the hearing in my right ear due to a virus. My body, for whatever reason, does not handle bacterial and viral infections well.
And then came January 2023, and the virus that would change my life.
IN THE BEGINNING
Symptoms started with feeling off-balance, off-kilter, as if I was fighting the world just to be upright. I waited to see my doctor, thinking (like most of us do) that I would get better. I didn’t. I, in fact, got worse. I experienced a bout of vertigo, a rapid heart rate, high blood pressure, all new and troubling symptoms. I felt like I’d been slapped on the right side of my head, a feeling that persisted for many months. And when I tried to sleep, my legs practically ran a marathon in bed.
My primary care physician acknowledged early on that his ability to help me was limited. But he listened, tried…and sent me to an ear/nose/throat doctor for an evaluation. To even get through these medical appointments was a struggle. I had to close my eyes to converse. I felt overly-anxious and agitated, also new symptoms. I was, by then, feeling ear pain, fullness, pressure and tinnitus. I couldn’t sleep. My head hurt. My fingertips hurt. I couldn’t handle screen time. Eventually I would see a neurologist, undergo a CT scan, then an MRI of my brain to rule out a tumor or anything else. It was as if my body was being assaulted.
I felt overwhelmed. I struggled sometimes to find the right words. “Why can’t I talk?” I asked Randy. My brain seemed to be malfunctioning, misfiring, miscommunicating. My neurological system was under siege. My memory, which has always been stellar, was (and remains) affected.
MAJOR SENSORY OVERLOAD
But the symptom which proved particularly debilitating was sensory overload. I couldn’t tolerate light or noise. I sat in the recliner, living room curtains drawn, body folded into the fetal position. No sound except the ringing in my own ears. I rocked 100 miles an hour, occasionally arose to pace the floor, stretched putty left from previous occupational therapy. Nothing calmed my body or mind. All I wanted was darkness, quiet, nothing stimulating entering my brain.
I struggled to get through Easter dinner at our house, missed my grandchildren’s birthday parties and a niece’s baby shower. Most heartbreaking of all was missing my son’s graduation with his master’s degree. I couldn’t handle the long road trip to Indiana, sit through the ceremony at Purdue. I couldn’t even manage grocery shopping; too much white noise from coolers and too much visual stimulation. Phone calls proved taxing, any conversation difficult. I was primarily housebound except for trips to the clinic and one to the ER following an allergic reaction to an unknown something. By then I’d been diagnosed with Meniere’s Disease and vestibular neuritis.
And then came the morning I brushed my teeth, the mint taste so overwhelming that I spit out the toothpaste. Rather than losing my sense of taste, mine intensified. For a week, until I saw my doctor (who added peripheral sensory neuropathy to my diagnoses) and got a prescription to settle my nervous system, I could eat only the blandest of foods. Oatmeal. Soda crackers. Graham crackers. I lost nine pounds in five days. Overall, I’ve lost 25 pounds this year. I’m OK with losing that weight, but don’t recommend this weight loss method. I went through a lengthy period of eating only a few bites of food at a meal.
All of this I experienced following COVID. Plus a rash and hair loss, either from the virus or from anti-anxiety meds. Nearly a year out from the virus, I am in a much better place. It took five months of vestibular rehab therapy, time and a lot of hard work to get here. Next up, I will write about retraining my brain, learning to manage my symptoms and how I found my way back to semi “normal.”
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NOTE: I’ve been asked by several people whether the COVID vaccine caused my neurological and other issues since I am fully-boosted and vaccinated. No. My health problems began when I had that January virus, thought to be COVID. Had I not been vaccinated and boosted, I firmly believe I would have ended up in the hospital, perhaps even died. Negative comments about the vaccine and boosters will not be posted on this, my personal blog.
© Copyright 2023 Audrey Kletscher Helbling
Minnesota Prairie Roots 
🙂 I remember Ipana tooth paste 😉 70 yr’s old I only got 5 and a ½ teeth left
“𝕨𝕠𝕟𝕕𝕖𝕣 𝕨𝕙𝕖𝕣𝕖 𝕞𝕪 𝕥𝕖𝕖𝕥𝕙 𝕒𝕝𝕝 𝕨𝕖𝕟𝕥 𝕨𝕙𝕖𝕟 𝕀 𝕓𝕣𝕦𝕤𝕙 𝕨𝕚𝕥𝕙 ℙ𝕖𝕡𝕤𝕠𝕕𝕖𝕟𝕥”
It’s amazing how difficult it is to find unflavored toothpaste. There’s MINT in everything, even if not labeled as mint. I’m thankful my taste buds have mostly returned to “normal.”
this is a great summary of what you described in your posts as you navigated your way through all of this, though I know it doesn’t even begin to describe how horrible it must have actually been for you. your being proactive and doing the hard work in your own wellness and recovery has made all the difference. I believe we will have many things that show up as a result of these viruses that we’ve only begun to understand. I finally realized that something I was going through was an actual ‘long covid’ affliction, though this is so small on the scale compared to what you have suffered through. my issue was that a few months after my sister and I both had covid, (very mild, cold-like symptoms), I began to notice horrible smells. I first thought it had to do with a water leak in my house and I had a guy come out twice to check for mold. when that didn’t take care of it, I noticed it was not just in my kitchen but anywhere, including on my own skin. then I researched skin smells and went the route of ‘what causes old people smell,?, thinking maybe that’s what was going on. I sent for persimmon products for bathing, hair washing, etc. as it was recommended by the asian population who have the highest number of older people, and this was the only thing that helped. as much as I scrubbed and washed, it still was there. I kept asking my daughters to smell my skin and they said it smelled like lotion and flowers and was fine. it made me sit far away from others and was very self conscious, and thought I was crazy, as it continued for months. I finally went online to our university hospital, which is a research hospital. I found a doctor who specializes in smell disorders – an otolaryngology specialist. I called and described what was happening and the nurse said, ‘oh you’re not crazy, you have an altered sense of smell.’ she asked if it began a couple of months after having covid and I said yes, and she said this happened to many who lost their sense of smell or had an altered sense of smell. I went in for an appointment and described it to the doc, my ongoing smelling of garbage, mold, musty odors, meat smells when going in grocery, etc. She reassured me and told me that she also had it but her smells were formaldehyde, gasoline, and grapefruit. she explained that this was not uncommon and will usually go away after weeks, months, or a year, which it’s now been for me. she told me that it affects people’s mental health, social lives, and some stop eating. it is now still happening but with much less frequency and I’m hoping it’s completely gone over time. it is called parosmia or phantosmia, depending on how it affects the patient. all they know for know is that it is trigged by covid, and something about the brain and it’s receptors sending a false signal to the sinus system. sorry this was so long, but it made me think about how covid has impacted so many in so many ways, and I feel lucky to not have gone through some the things tha you and others have had to endure.
Beth, thank you for sharing your post-COVID issues with smell. This needs to be shared and thank you for doing so. I’m sorry you’ve had to deal with this odd sense of smell. My sense of smell was (is) heightened, but nothing awful and unusual like you’ve experienced. I’m thankful you got affirmation of what you were (are) experiencing. That’s so important to your mental health. I hope you only continue to improve.
I can totally relate to 90% of your experiences regarding COVID!
It’s been almost 2 years of symptoms that have taken over my body!
What can I do & where should I go for help?
I’ve seen 12 healthcare providers who treat symptoms but don’t seem to know how to help otherwise.
Forest City IA
Diane, I am deeply sorry you are also dealing with debilitating post-COVID issues. Do you feel like the 12 healthcare providers listened, understood? We need to talk. Please click on the ABOUT tab in the right corner of my home page. Therein you will find my email address in YOU MAY CONTACT… Replace the “at” with @ in my email info and then PLEASE reach out to me. I look forward to hearing from you and finding a time when we can perhaps chat on the phone. You are not alone. I hear you! I care.
Thank you for sharing. It’s important for people to really understand the brutality of post-viral conditions. They are destructive. I’m also glad you have good supports.
There is light at the end of the post-viral tunnel and I’m glad you see some. One thing researchers have learned about post-viral conditions is that rest is one of the most vital things. No powering through. 💜
Those are both good points: 1) Rest is vital. 2) No powering through. Both held true for me, although rest was elusive given I experienced insomnia post-virus.
You’re absolutely right in that people need to understand the brutality of post-viral conditions. There needs to be much more support, too. I will say I didn’t often feel understood or heard by others who simply thought I had vertigo (which I did, but that was limited; and vertigo can be debilitating). I often felt like I was being dismissed, like, ah, it can’t be THAT bad. In writing this post and my follow-up tomorrow, I want to inform, enlighten and offer hope. We all need to work harder at being here for one another. That starts with caring. I am grateful to you and my many other readers who have shown compassion and care to me during my health struggles. Thank you!
Yours is an interesting story and I’m glad you are sharing your experience with viruses.
It’s important. You’ve been on a long journey. And we can learn from you.
Thank you for your love, friendship, support and prayers through this challenging year, dear Valerie.
I am so sorry you had to go through such a terrible time, and glad you are much better now. Have you ever heard of hyper-bariatric (high-oxygen) treatments? We have a neighbor who is about 46 years old. He developed juvenile diabetes when he was about 7, so has had this most of his life. 3 years ago his glucose meter gave him an extremely high dose of insulin, causing his blood glucose drop to a dangerously low level. He was in a coma for a while, and has brain damage from this incident. His parents recently learned about a place in Fargo that has these hyper-bariatric treatments, which are said to heal many different ailments. He has been taking these treatments for 2 weeks, and will have a total of 40 treatments (2 a day). It is too early to know if they are helping him. I hear they are successful in treating things like sports concussions and migraines. I wonder if this is something you might want to check out…..maybe in Rochester or the Twin Cities.
I hope your neighbor is helped by these treatments. It seems worth a try.
I am doing much better. Tomorrow I will post about how vestibular therapy, time and hard work got me on the road back to better health. I still have struggles, but I’m much-improved.
It’s so very important and helpful to communicate this with others, especially as our medical community was/is still trying to figure out all the effects of Covid. The misinformation out there was wild, in part because the Virus seemed to affect people so differently. Some had a mild case with no lingering symptoms, and some had severe long-lasting symptoms, and some people, like my mom, died with Covid. I hope science can figure out why this affected people so differently.
I wish you continued healing and fabulous health. Thank you so much for sharing your story.
Rose, I agree. There are so many unknowns about COVID’s affect on people and why those affects can be vastly different. I am so sorry your mom died of COVID. That had to be really hard for you. I know too many people who lost their lives to the virus, especially early on.
I appreciate your encouragement and support and your gratitude for the sharing of my story. These stories need to be shared if we are to learn.
Oh my. I just read this. I had similar symptoms which landed me in the hospital. I experienced extreme dizziness over a couple of weeks, then one afternoon rapid heart rate, sweating, and I passed out while talking to my son. I feared I had a stroke. All the tests showed everything normal. The doctor told me as I was being released to have my inner ears checked. I did have an ear infection a few weeks before. I went through those tests and all proved normal. No one ever mentioned a post COVID symptom. Luckily the symptom has greatly subsided. I experienced it once since then, but very mild. All appears to fine now. So sorry to hear about everyone’s experiences. I’ve noticed people wearing masks again, not many, on the subways again. Luckily I have been working from home for the past 2 years, but do photograph corporate events. That was where I picked up my only COVID positive. I lost my sense of smell and taste for two days. Yes, so many unknowns.
Keith, I’m so sorry you went through that terrifying experience of passing out in the midst of scary symptoms. I’m no medical expert. But based on my health issues post-COVID and what you’re telling me, I suspect yours are all COVID-related. There are so many unknowns about this virus. I’m thankful you are doing better. You have much to live for with your precious family. Thank you for sharing your story. Be well, my friend.
This illness has so many unknowns. Thank you Audrey and you as well!
I agree…lots of unknowns. It’s through the sharing of our stories (if health professionals listen) that unknowns become knowns.
So many odd symptoms as shared by you and your readers. It truly is a baffling virus in many ways but sharing helps others so thank you.
We can all learn from one another via sharing.