Many Unanswered Questions Remain About COVID-19 Long Haul Symptoms

COVID-19 symptoms like shortness of breath, extreme fatigue, distorted taste and smell, and even memory loss, don’t always go away after just 14 days.

People experiencing the lasting effects of COVID-19 after more than 30 days of infection are referred to as COVID long haulers. 

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Many, including doctors, are still searching for treatment and answers to these persistent symptoms.

Samantha Lewis, 34, contracted COVID-19 in October 2020 and continues to face the ongoing memory loss and struggles with mental stamina and remembering her daily routine. She has been receiving treatment at Northwestern Medicine’s Neuro COVID-19 clinic and has been relying on Echo Dot speakers around her home to help her get through her daily routine.

"They [Echo Dots] throughout the day will remind me to stop and take a break to refill my water bottle, to use the restroom because sometimes the signal from my autonomic nervous system doesn't send that signal to my bladder anymore,” Lewis said. “I would go all day and realize I hadn't gone to the bathroom, to stop and take my medication, to remember to start dinner.”

Dr. Joshua Cahan, a cognitive neurologist at the Northwestern Medicine Neuro COVID-19 Clinic, developed a cognitive assessment to try and figure out which parts of the brain were being affected by brain fog and other cognitive disorders.

“We saw a lot of similarities between this population and the post-concussive syndrome population,” Cahan said. “One of the biggest barriers is that we don't exactly know what's driving the development of these symptoms.”

Current treatment approaches are based on finding any other potential contributors that could be treated, such as sleep disorders, headaches, fatigue or mood disorders, according to Cahan.

Lewis said that one of the hardest parts has been the lack of explanation behind her symptoms.

“It feels very difficult to lose some of that independence and have to depend on others,” Lewis said. “It’s very frustrating to be searching for answers and not have them." 

Like Lewis, it has almost been a full year since Scarlett O'Hara was infected with COVID-19, but her sense of smell and taste have not been the same since.

“At the same time that I was noticing things, starting to regain a sense of taste or smell, I had to cut out things because all of a sudden, eggs tasted like garbage, Chipotle tasted like garbage,” O’Hara said. “All my produce in my fridge, even if I had just bought it the day before, started tasting rotten.”

O’Hara says that this has taken a toll on her quality of life, adding that people who haven’t had COVID-19 have a limited understanding of the impact it can have on someone’s day-to-day life. 

“I don't think enough young people are as scared of COVID as they need to be,” O’Hara said. “It's not just about dying or your kidneys failing at the age of 22, it's also about the fact that your entire daily reality could shift, and you may never get your taste and smell back."

Cahan said that the ages of those experiencing long-term symptoms from COVID-19 range across the board.

“I'm actually surprised with how many younger patients we see, but we certainly do see people who are older as well,” Cahan said. “A lot of people in their 20s, 30s and 40s are complaining of these types of symptoms.”

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