What is it like to live with brain fog

What is it like to live with brain fog


Haze. Slow. Drunk. Lost. These are the words some people use to describe “brain fog”.

The condition, a form of cognitive dysfunction, has plagued people with certain chronic conditions for years. But now a new wave of people with a long history of covid are experiencing it, shedding light on this often debilitating condition.

“It’s a moment when the public and the medical community realize that this is real. This is what happens after certain infections,” said Akiko Iwasaki, professor of immunobiology at Yale University and co-author of a review article on covid-19-related cognitive impairment.

“I think it’s time for them to be recognized,” she said.

How covid brain fog may overlap the ‘chemo brain’ and Alzheimer’s disease

Research shows that a majority of people with long-lasting symptoms reported brain fog – a collection of symptoms including impaired attention, concentration, memory and processing speed. Iwasaki and Michelle Monje, professor of neurology at Stanford University, reviewed more than 100 relevant studies on cognitive dysfunction after covid.

They described six potential causes of covid-related cognitive dysfunction and concluded that a likely common cause is lung inflammation which causes brain inflammation and subsequently neural cell dysfunction.

Patients who have experienced brain fog, caused by a wide range of conditions, say the effects can be life-changing and devastating. They say it prevents them from doing many activities such as driving, cycling and public speaking. Some had to change their working hours or stop working altogether. And almost all say it has forced them to rely on a notebook – keeping to-do lists that include the most basic tasks such as remembering to eat.

Depending on the underlying cause, there are treatments for brain fog ranging from exercise protocols to cognitive rehabilitation, but there is no proven method for all patients.

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Dennis Kolson, a neurologist at the Penn Neuro COVID Clinic at the University of Pennsylvania, said since the clinic opened last year, doctors have evaluated about 350 long-term patients for complaints, including fog. cerebral. He said people uniformly appreciate having the chance to speak with a doctor who understands their symptoms.

“’Am I like the others? Do you see people like me?’ I get that question every time,” Kolson said. “I say, almost always, ‘Yes. You’re not alone.’ ”

Edwin Hall, a 65-year-old Navy veteran from Fulton, Mo., spent 12 days during the summer of 2021 in a medically induced covid coma, breathing on a ventilator. Doctors also discovered signs of a probable stroke, although they did not know its timing, he said.

Even now, he says, he struggles with brain fog. He searched for words to describe it.

He recalled an incident during a trip to Walmart shortly after his hospitalization that he attributes to brain fog. He and his wife went down separate aisles, and once she was out of sight, he couldn’t remember if she had told him where she was going or if he had thought about how to get there. take.

“I had a major panic attack at that time,” he said, adding that he held on to a pillar and waited for his wife to find him.

Earlier this year, he said, his symptoms forced him to retire as an enforcement systems officer for Missouri’s Department of Elementary-Secondary Education.

Another longtime patient, Dave Nothstein, 52, of Colorado Springs, said he was still able to work remotely for a car dealership, but only enough hours per week to pay for his insurance.

His biggest challenges relate to word recall and short-term memory.

After his longstanding diagnosis in March, Nothstein said, his brain was so foggy he had to make detailed to-do lists to get through the day. “As silly as it sounds, it included ‘make sure you eat breakfast’, ‘make sure you feed the dogs’, ‘get the mail’, ‘do the laundry’, ‘do the dishes'”, did he declare.

He is now working with a cognitive therapist, who is not covered by insurance, to try to cope with his disability.

Brain fog can also affect people with myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), Lyme disease, and depression, according to experts.

Patients who have undergone chemotherapy also report brain fog, often described as “chemo brain.”

Severity and duration vary, but symptoms can have “a detrimental effect on work, family and social life and can lead to a decreased quality of life,” said Jeffrey Wefel, professor and chief of neuropsychology at the University. from Texas MD Anderson Cancer Center. .

Angela Hernandez, 36, of Houston, said she went through months of brain fog starting in 2018 after four rounds of chemotherapy for ovarian cancer.

“You know, when you dream, then you wake up and you almost remember what you were dreaming of, but as the seconds go by, the dream gets further and further away?” she says. “That’s kind of how I felt the whole time.”

For Kelsey Botti, it started with a concussion from a snowboarding accident in 2012. Later, Botti, a 32-year-old physical therapist from Pittsburgh, was diagnosed with POTS, a syndrome often characterized by rapid heart rate, low blood pressure, and often dizziness, lightheadedness, and fainting on standing – and in some cases, brain fog.

“I wanted to cry because I was so grateful for someone helping me, and I got a diagnosis and direction,” she said. “And then I also felt like crying because the person I was was completely gone.”

Botti underwent months of treatment including medication and a controlled exercise program to build up his tolerance. And although there were bumps and ER visits along the way, she said her symptoms improved.

A challenge in treating brain fog is that patients may look healthy but feel unwell, said Robert Wilson, a neurologist at the Cleveland Clinic Neurological Institute. “If they don’t find the right medical team to understand them, they will drift away from health care and have less access to health care, so there will be fewer opportunities for them,” he said. .

An obstacle to the effective management of patients with brain fog is the stigma attached to it, said Jacqueline Becker, a neuropsychologist at Mount Sinai who has studied post-covid cognitive impairment.

“Stigma keeps people from getting proper care when doctors tend to write them off and say, ‘No, you’re young. Do not worry. You will be better. Or, ‘Look, your brain scan came back as normal. There’s nothing wrong with you,” she said. “And on the other side of that you have a patient who is really struggling to function.”

Rachael Grossman, a 22-year-old from Chagrin Falls, Ohio, said she started developing symptoms of brain fog after a bout of whooping cough when she was 17. in my head I said it was anxiety,” she said.

Two years later, in 2019, she was diagnosed with POTS. Grossman is now a neuroscience student at Baldwin Wallace University and works part-time as a medical scribe. She said she had to find ways to try and get over her “haze”.

On bad days, she said she could spend hours studying for a test without remembering a word, struggle to perform at the level she wanted at work, or feel uncomfortable driving because she was afraid of fainting.

“It will continue to affect me, unfortunately, but it’s just a matter of finding ways around it,” she said.

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