Vibrations, Tremors Gain Attention in Long Covid

"For Kerri McCrossen Morrison, the sensation feels like an electric toothbrush going off in her chest. The feeling is so intense that it wakes her from a deep sleep at times.

"It feels like someone put something on my bed and it's vibrating," she says. "My body is moving inside, it's jolting, and at night it's really bad."

The unusual internal vibrations and external tremors Ms. Morrison describes have gained more attention lately among long Covid patient advocates, who are trying to raise discussion among doctors and researchers.

Ms. Morrison, a 50-year-old transplant coordinator at a New Orleans hospital, says the sensations are among the symptoms she has experienced since testing positive for Covid-19 in March 2020.

Long Covid patients -- estimated to be 10% to 30% of people who have had Covid-19 -- experience a range of symptoms including fatigue, cognitive problems, shortness of breath and sensory issues, such as numbness and tingling. Internal vibrations and external tremors are less common and have received less attention.

Yet a study this summer from the Patient-Led Research Collaborative, a group of long Covid patients that conduct research, found that roughly 40% of patients reported experiencing tremors and 30% vibrating sensations.

Doctors say it is likely a minority of patients who experience vibrations and tremors. Clinics at Northwestern and Mount Sinai say they haven't seen many patients complaining of such sensations. However, a long Covid clinic at Mayo Clinic asks patients about such symptoms and finds that a significant percentage of patients report them.

"It is something we see quite frequently," says Greg Vanichkachorn, an occupational and aerospace medicine physician at Mayo, who works with long Covid patients in the first three months after their acute infection. He estimates Mayo sees it in about 40% to 50% of the long Covid patients in those first three months. He says for some patients the symptoms are debilitating and for others they are more of a nuisance.

Doctors don't know what is causing the mysterious symptoms. Some think it may be the result of autonomic nervous system dysfunction, common among many long Covid patients, or damage to the nerves. Others say it could be a problem with processing in the brain.

Ryan Hurt, the head of post-Covid research and clinical practice at Mayo, says a case report he wrote of a patient suffering myriad neurological symptoms including internal vibrations is currently under review for publication.

Dr. Hurt says brain scans of some long Covid patients suffering from fatigue show decreased function or activity in the brain. It could be caused by neuroinflammation or blood flow problems, he says. Another factor may be what is called central sensitization syndrome, which occurs when the brain is more reactive, Dr. Hurt says.

"Pain is perceived in the brain," says Dr. Hurt. "The brain becomes really sensitive to stimuli. So the problem may not be compression of the nerves but it's the brain where all the information is processed." In those cases, what feels like neuropathy, which is damage to the nervous system, wouldn't necessarily originate in the nerves but in the brain.

Nick Guthe says his wife, Heidi Ferrer, a 50-year-old screenwriter who wrote for the television series "Dawson's Creek," died by suicide in May after struggling with long Covid symptoms for more than a year. Severe internal vibrations in the last month of life prevented her from being able to sleep at night, he says.

"When they started, the tremors were manageable. They came on for a minute or two," he says. "The internal vibrations that started at night were the final straw. She described it as someone inserting a cellphone in her chest and turning it on vibrate. It would wake her up and made it impossible to get more than two hours of sleep," he says.

Since his wife's death, Mr. Guthe has become a long Covid advocate serving on the advisory board of Survivor Corps. He helped spearhead another recent study to see if others were also experiencing the internal and external vibrations. The study analyzed hundreds of patient stories solicited from social media. The results, which haven't been peer-reviewed, were posted on the preprint server medRxiv in December.

Richa Sharma, a vascular neurologist at Yale School of Medicine who was a co-author on the study, says patient comments and emails described a constellation of symptoms -- including tremors, pain, vibration, and burning -- that occurred either periodically or constantly, and could last for months. Ms. Morrison's experience was included in the study.

Dr. Sharma speculates that there may be some degree of peripheral or central nervous system dysregulation that may be related to the initial infection that is causing the symptoms. Another possible explanation is a post-infectious inflammatory response, she says.

Ms. Morrison says her internal tremors progressed to seizure-like activity and she now takes seizure medication prescribed by her doctor.Her symptoms are so severe she says she had to stop working in May and is in the process of applying for long-term disability.

She likens the internal vibrations, which started a few months after she got Covid-19, to feeling like she is on a roller coaster. Eventually they progressed so you could see them, sometimes causing her legs and arms to jerk, she says.

She says she has many other symptoms, including brain fog, fatigue and headaches, but says the internal vibrations are the scariest. "I'm afraid to drive," she says. "Your body, you're not in control."

Once she joined long Covid support groups online in July of 2020 she says she started to see other people experiencing similar symptoms. "I started crying," she says. "There's no way to talk to people and tell them you're internally vibrating. You sound crazy."" [1]

1. Your Health: Vibrations, Tremors Gain Attention in Long Covid
Reddy, Sumathi. Wall Street Journal, Eastern edition; New York, N.Y. [New York, N.Y]. 22 Dec 2021: A.14.