Long COVIDis proving to be a systemic, often debilitating result of a SARS-CoV-2 infection that lingers long after a person’s system has cleared the virus. There is no data regarding who is most susceptible to becoming a “long hauler,” as members of this group call themselves. The symptoms are as varied as the people who experience them.
This is Mike Heidenberg’s story.
“Milk.” Mike Heidenberg could see the word on the empty carton, understand it, and register its context, but he could not communicate the word aloud.
He was trying to tell his wife that he spilled milk on the counter.
“Guitar,” was all the former English professor could say instead.
He knew this was the brain fog talking. This was long COVID talking. And this, he says, is only a snippet of what it can sound like.
Heidenberg’s story starts where many end. On May 14, 2020, he was discharged from the COVID-19 “hot zone” of a White Plains, New York, hospital with antibiotics for pneumonia and a negative COVID-19 test result. The test—which his doctors now believe was either a false negative or taken too late in his course of infection—was supposed to signify a clean bill of health.
It didn’t.
Study: Many COVID-19 ‘Long-Haulers’ Unable To Return To Work After 6 Months
Now, he works his way backwards to understand how a virus he wasn’t sure he had managed to mar multiple bodily systems and alter his entire life.
“I call COVID the gift that keeps on taking,” Heidenberg tells Verywell. “And I have no idea what it will take next.”
An Academic Faces Cognitive Deterioration
Heidenberg, 47, once lived his life in service of words: reading them, writing them, studying them, and then eventually teaching them. After receiving two Master’s degrees in English from Fordham University in New York, he went on to teach, tutor, and advise at different facilities for 18 years. But COVID-19 wiped away the words—and everything he cultivated through them—in less than a few months.
An Overview of Thrush?
“My voice, which I had been using more and more to communicate with students remotely before I got sick, was shot. I could barely speak, and it felt like a woodblock was stuck in my throat,” he says. “It’s gotten much better after six months of speech therapy, but as someone who was always very precise in how I say stuff and who has held other people to that standard as a professor, suddenly not being able to be precise and speak was really, really scary.”
When hecansay the words, they don’t always come out correctly, such as when “milk” emerged as “guitar.” This condition is calledspeech aphasia, and involves an impairment in the area of the brain responsible for speech production. With COVID-19, aphasia tends to happen in patients who were placed on a ventilator or experienced a stroke. However, it’s being increasingly detected in long-haulers like Heidenberg, including those who weren’t hospitalized.
What Is Aphasia?Aphasia is an impairment of language which occurs when someone suffers from an injury to the frontal lobe, the temporal lobe, or the parietal lobe of the brain.
What Is Aphasia?
Aphasia is an impairment of language which occurs when someone suffers from an injury to the frontal lobe, the temporal lobe, or the parietal lobe of the brain.
Experts suggests aphasia stems from multiple factors that trigger neurological damage: prolonged low blood oxygen levels, widespread inflammation, or even direct infiltration from the virus piercing the brain-blood barrier.
“I’ve had so many incidents of aphasia,” Heidenberg says. “On August 18, I tried to come up with the word ‘case,’ but could only think of ‘thing,’ On August 20, I tried to say the word ‘mouthwash,’ but could only come up with ‘washing machine.’ On October 4, I could only come up with the word ‘wine’ when I was trying to come up with the word ‘nuts.’ And there are many, many more.”
What’s Causing Neurological Symptoms In COVID-19 Patients?
Then there’s the brain fog, which comes in waves. This symptom is one of the hallmarks of long COVID, triggering attention deficits, confusion, memory loss, and disorientation in thousands of long-haulers.
Heidenberg says it’s like someone is physically pressing down on his brain, and there’s no way to escape it.
Neuropsychology tests taken at Mount Sinai hospital in New York reveal that COVID-19 triggered a deficit in his brain’s processing abilities. This manifests itself in almost every aspect of his life.
“My brain just doesn’t work properly anymore. This is my most difficult symptoms at this point,” he says. “I will lose track of what someone is saying to me in the middle of a conversation. I can usually only talk to my mom on the phone for a few minutes a night—and when I do, I too often go completely blank, either not remembering what I wanted to talk about or just feeling like I can’t process what she’s saying.”
Mike HeidenbergAs somebody who has relied on judgment and being able to see what is there no matter what someone else is saying, to suddenly lose my sense of reality is really scary.
Mike Heidenberg
As somebody who has relied on judgment and being able to see what is there no matter what someone else is saying, to suddenly lose my sense of reality is really scary.
“There will just be too much light, too many sounds, too many characters, so I get overwhelmed and won’t be able to follow along,” he says. “This means I have no escape from what I’ve been going through.”
A Distorted Sense of Reality
But there was no fire. And Alexis could not smell the gas.
That night marked the onset of a new symptom:phantosmia, which is the detection of a random and uninvited smell that is not actually present. Like an olfactory optical illusion, these phantom smells are another example of COVID-19’s extensive neurological effects.
Life as a Long-Hauler: American Ninja Warrior Calls COVID-19 Hardest Obstacle
Heidenberg’s hallucinations can also materialize in 3D.
“There have been moments where I see things that aren’t there, and that I know aren’t there,” he says, like bugs on his toes or stuffed animal eyes blinking red. “They’ve only occurred a handful of times, but I keep holding my breath hoping they don’t happen again.”
Recent studies indicate that visual hallucinations can occur in COVID-19 and long COVID patients. Some experience full-on psychosis, while others exhibit isolated episodes such as Heidenberg’s.
“It makes me feel like I’m losing my mind,” he says. “As somebody who has relied on judgment and being able to see what is there no matter what someone else is saying, to suddenly lose my sense of reality is really scary. Not being able to understand the senses that you have is one thing—but what’s really scary is not being able to trust what my senses are telling me.”
A Range of Physical Limitations
Compounding the new neurological and cognitive symptoms are the physical ones.
The list is endless and constantly evolving. Vision loss. Migraines. Chest pain. Shortness of breath. Tachycardia. Nausea. Heat intolerance. Blurry vision. Blood pressure spikes. Joint and muscle pain. Fatigue so crippling it feels as if he’s buried below gravel.
“Every day is different. I never know what to expect or what will come next,” Heidenberg says.
Li says that long COVID triggers a host of unusual and sometimes severe symptoms even after a patient tests negative, with more than 100 reported complications. He says there may be multiple pathologies occurring simultaneously, with vascular damage becoming incredibly common.
Long-Haul COVID Doctor Discussion GuideGet our printable guide for your next doctor’s appointment to help you ask the right questions.Download PDFEmail AddressSign UpThank you, {{form.email}}, for signing up.There was an error. Please try again.
Get our printable guide for your next doctor’s appointment to help you ask the right questions.
Download PDF
Email AddressSign UpThank you, {{form.email}}, for signing up.There was an error. Please try again.
Sign Up
Thank you, {{form.email}}, for signing up.
There was an error. Please try again.
Fighting for Recognition
Heidenberg was let go from his job as an academic advisor at Berkeley College last September, as his problems with memory, speech, and fatigue impeded his ability to work. He says he adored his job and the ability to help students creatively solve their problems.
“As incredibly difficult as this is for my wife and me, I don’t blame the college for me losing my job—I blame the virus,” he says.
Eventually, after months of fear and instability, the issue was rectified. However, if President Biden’s proposed stimulus package does not go through, his benefits will run out again in March.
President-Elect Biden Outlines Expanded COVID-19 Relief Plans
“I am truly at a loss about how a pulmonologist whom I’ve never met or spoken to can conclude that I am fine,” he says. “The unwillingness to go outside of your own specialization is a huge problem for me and long COVID patients in general, and it directly led to me losing my disability benefits.”
Women With Chronic COVID-19 Struggle To Be Heard By Doctors
He can file a second appeal, but it appears that the lack of a positive test will continue to be cited as a reason to deny his benefits.
“It’s a really difficult and unusual feeling for me to be the one who needs help because I’m the one who people come to get help,” he says. “I just haven’t been able to do that and that’s one of the hardest things for me.”
“My biggest fear right now is about what happens if I don’t get back to how I was before, or at least close enough so that I can work regularly,” he says. “I’m so, so grateful for the financial help we’ve been getting from so many people,but I know there are limits to what people can comfortably do for us. What happens when they literally can’t help us anymore? What happens when my unemployment eligibility runs out? When I’m no longer eligible for COBRA? Will our savings run out? Will we lose our apartment?”
The gammaCore Sapphire CV device receivedemergency use authorizationfrom the Food and Drug Administration (FDA) in July 2020.
Heidenberg says it has given him flashes of freedom from his fatigue and increased his energy and attention levels. He says he used it before this interview and it’s the only thing that gave him the energy to share his story. Between this device, speech therapy, medications, supplements, and many, many months of recuperation, he is slowly getting better. But he says the process is not linear.
He still struggles to find the words when he needs them most.
A Hand-Held Device Is Helping COVID-19 Patients Breathe Again
The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit ourcoronavirus news page.
7 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Muccioli L, Pensato U, Cani I, et al.COVID-19-related encephalopathy presenting with aphasia resolving following tocilizumab treatment.Journal of Neuroimmunology. 2020;349:577400. doi:10.1016/j.jneuroim.2020.577400Herrmann J, Mori V, Bates JHT, Suki B.Modeling lung perfusion abnormalities to explain early COVID-19 hypoxemia.Nature Communications. 2020;11(1):4883. doi:10.1038/s41467-020-18672-6Wu Y, Xu X, Chen Z, et al.Nervous system involvement after infection with COVID-19 and other coronaviruses.Brain, Behavior, and Immunity. 2020;87:18-22. doi:10.1016/j.bbi.2020.03.031Pellegrini L, Albecka A, Mallery D, et al.Sars-CoV-2 infects the brain choroid plexus and disrupts the blood-CSF barrier in human brain organoids.Cell Stem Cell. 2020;27(6):951-961.e5. doi:10.1016/j.stem.2020.10.001Parma V, Ohla K, Veldhuizen M, et al.More than smell—COVID-19 Is associated with severe impairment of smell, taste, and chemesthesis.Chemical Senses.2020;45(7):609-622. doi:10.1093/chemse/bjaa041Lim ST, Janaway B, Costello H, Trip A, Price G.Persistent psychotic symptoms following COVID-19 infection.BJPsych Open. 2020;6(5). doi:10.1192/bjo.2020.76Ackermann M, Verleden S, Kuehnel M, et al.Pulmonary vascular endothelialitis, thrombosis, and angiogenesis in Covid-19.New England Journal of Medicine. 2020;383(2):120-128. doi:10.25934/00005576
7 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Muccioli L, Pensato U, Cani I, et al.COVID-19-related encephalopathy presenting with aphasia resolving following tocilizumab treatment.Journal of Neuroimmunology. 2020;349:577400. doi:10.1016/j.jneuroim.2020.577400Herrmann J, Mori V, Bates JHT, Suki B.Modeling lung perfusion abnormalities to explain early COVID-19 hypoxemia.Nature Communications. 2020;11(1):4883. doi:10.1038/s41467-020-18672-6Wu Y, Xu X, Chen Z, et al.Nervous system involvement after infection with COVID-19 and other coronaviruses.Brain, Behavior, and Immunity. 2020;87:18-22. doi:10.1016/j.bbi.2020.03.031Pellegrini L, Albecka A, Mallery D, et al.Sars-CoV-2 infects the brain choroid plexus and disrupts the blood-CSF barrier in human brain organoids.Cell Stem Cell. 2020;27(6):951-961.e5. doi:10.1016/j.stem.2020.10.001Parma V, Ohla K, Veldhuizen M, et al.More than smell—COVID-19 Is associated with severe impairment of smell, taste, and chemesthesis.Chemical Senses.2020;45(7):609-622. doi:10.1093/chemse/bjaa041Lim ST, Janaway B, Costello H, Trip A, Price G.Persistent psychotic symptoms following COVID-19 infection.BJPsych Open. 2020;6(5). doi:10.1192/bjo.2020.76Ackermann M, Verleden S, Kuehnel M, et al.Pulmonary vascular endothelialitis, thrombosis, and angiogenesis in Covid-19.New England Journal of Medicine. 2020;383(2):120-128. doi:10.25934/00005576
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Muccioli L, Pensato U, Cani I, et al.COVID-19-related encephalopathy presenting with aphasia resolving following tocilizumab treatment.Journal of Neuroimmunology. 2020;349:577400. doi:10.1016/j.jneuroim.2020.577400Herrmann J, Mori V, Bates JHT, Suki B.Modeling lung perfusion abnormalities to explain early COVID-19 hypoxemia.Nature Communications. 2020;11(1):4883. doi:10.1038/s41467-020-18672-6Wu Y, Xu X, Chen Z, et al.Nervous system involvement after infection with COVID-19 and other coronaviruses.Brain, Behavior, and Immunity. 2020;87:18-22. doi:10.1016/j.bbi.2020.03.031Pellegrini L, Albecka A, Mallery D, et al.Sars-CoV-2 infects the brain choroid plexus and disrupts the blood-CSF barrier in human brain organoids.Cell Stem Cell. 2020;27(6):951-961.e5. doi:10.1016/j.stem.2020.10.001Parma V, Ohla K, Veldhuizen M, et al.More than smell—COVID-19 Is associated with severe impairment of smell, taste, and chemesthesis.Chemical Senses.2020;45(7):609-622. doi:10.1093/chemse/bjaa041Lim ST, Janaway B, Costello H, Trip A, Price G.Persistent psychotic symptoms following COVID-19 infection.BJPsych Open. 2020;6(5). doi:10.1192/bjo.2020.76Ackermann M, Verleden S, Kuehnel M, et al.Pulmonary vascular endothelialitis, thrombosis, and angiogenesis in Covid-19.New England Journal of Medicine. 2020;383(2):120-128. doi:10.25934/00005576
Muccioli L, Pensato U, Cani I, et al.COVID-19-related encephalopathy presenting with aphasia resolving following tocilizumab treatment.Journal of Neuroimmunology. 2020;349:577400. doi:10.1016/j.jneuroim.2020.577400
Herrmann J, Mori V, Bates JHT, Suki B.Modeling lung perfusion abnormalities to explain early COVID-19 hypoxemia.Nature Communications. 2020;11(1):4883. doi:10.1038/s41467-020-18672-6
Wu Y, Xu X, Chen Z, et al.Nervous system involvement after infection with COVID-19 and other coronaviruses.Brain, Behavior, and Immunity. 2020;87:18-22. doi:10.1016/j.bbi.2020.03.031
Pellegrini L, Albecka A, Mallery D, et al.Sars-CoV-2 infects the brain choroid plexus and disrupts the blood-CSF barrier in human brain organoids.Cell Stem Cell. 2020;27(6):951-961.e5. doi:10.1016/j.stem.2020.10.001
Parma V, Ohla K, Veldhuizen M, et al.More than smell—COVID-19 Is associated with severe impairment of smell, taste, and chemesthesis.Chemical Senses.2020;45(7):609-622. doi:10.1093/chemse/bjaa041
Lim ST, Janaway B, Costello H, Trip A, Price G.Persistent psychotic symptoms following COVID-19 infection.BJPsych Open. 2020;6(5). doi:10.1192/bjo.2020.76
Ackermann M, Verleden S, Kuehnel M, et al.Pulmonary vascular endothelialitis, thrombosis, and angiogenesis in Covid-19.New England Journal of Medicine. 2020;383(2):120-128. doi:10.25934/00005576
Meet Our Medical Expert Board
Share Feedback
Was this page helpful?Thanks for your feedback!What is your feedback?OtherHelpfulReport an ErrorSubmit
Was this page helpful?
Thanks for your feedback!
What is your feedback?OtherHelpfulReport an ErrorSubmit
What is your feedback?
