SURVIVOR DIARIES

View Original

Survivors Explain Dysautonomia

Administrator

COVID-19 Survivors explain Dysautonomia and how Covid has impacted their autonomic nervous systems.

The more we talk to Covid-19 survivors, the more we hear about it wrecking havoc on their autonomic nervous systems. They describe rapid heart rates, difficulty breathing, and the inability to regulate body temperature. But, there have been limited answers as to why. However, we are now seeing more diagnoses as survivors seek answers. Lately, we have met more and more survivors who have been diagnosed with Dysautonomia and POTS, a form of Dysautonomia. Recently we met Melissa, a Covid survivor in Arkansas, who has had a hereditary form of Dysautonomia for at least 12 years. She told us, “I'm seeing for the first time since the pandemic, people saying I got dysautonomia from having Covid” in her online support groups.

“I'm seeing for the first time since the pandemic, people saying I got dysautonomia from having Covid”

Wyatt, who was recently diagnosed with dysautonomia post-Covid, explain it like this, “Dysautonomia is essentially a dysregulation of the autonomic nervous system, which is in charge of your parasympathetic and sympathetic nervous system, which is your fight or flight. Essentially, when that gets disrupted, it can impact things like blood pressure, heart rate, even breathing circulation, the dilation of your eyes. It also deeply impacts your ability to orient yourself in space, which is why a lot of people will have vertigo or dizziness that comes along with that.”

Dysautonomia is essentially a dysregulation of the autonomic nervous system

The onset of symptoms may feel and look like a panic attack, but it’s much more than that. Some symptoms may appear at a time of physical or emotional stress or can appear when you are perfectly calm. Some symptoms may be mild in some patients; in others, they may interfere constantly with daily life. A common sign of dysautonomia is orthostatic intolerance, which means you can’t stand up for long, without feeling faint or dizzy. 

Symptoms include balance problems, noise/light sensitivity, dizziness, lightheadedness, vertigo, shortness of breath, chest pain/discomfort, swings in body temperature, ongoing tiredness, blurred vision, nausea, vomiting, fast or slow heart rate, brain fog, large swings in heart rate and blood pressure, fainting, migraines or frequent headaches, exercise intolerance, and erectile dysfunction.

That said, we still know very little about dysautonomia. It can be caused by a traumatic event, a viral illness, or passed down genetically among other things. It was only identified in 1949 and they only started teaching about it medical school recently so depending on when a doctor went to medical school they may not know about it. On top of that, the symptoms can be similar to many other diseases. You may need a healthcare provider who understands both the nervous system and the circulatory system to diagnose it — like an electrophysiology cardiologist. The gold standard for diagnosis is a tilt table test.

There is very little research into Dysautonomia to date, but interestingly NASA is funding research in Dysautonomia because many astronauts experience it for the first few days after they return from spaceflight, and NASA scientists want to find out why. Apparently it is triggered by being in weightlessness for too long because it’s all about how your autonomic nervous system responds to gravity.

NASA's willing to research it. But up until Covid, it didn't happen to enough people that there's been a lot of interest in medical research. And, there’s no medicine for it. Melissa, who’s been dealing with this invisible little known disease for at least 12 years says, “I'm hoping that if nothing else good comes out of the COVID pandemic maybe some research will happen as a result that comes up with a medicine or treatment for dysautonomia.”

Tips for people with Dysautonomia:

  • Aquatherapy — water pressure compresses the blood vessels in your legs, which helps more blood return to your heart, which minimizes the symptoms of orthostatic intolerance. Some patients who have a very hard time exercising on dry land can exercise for over an hour in a pool.

  • Cooling and Heating Vests — Vests that help regulate your body temperature can help control symptoms in conditions where you cannot control the temperature around you.

  • Increase Salt Intake — Adding extra salt (3 to 5 grams/day) to your diet. Salt helps your body keep a normal fluid volume in your blood vessels, which helps maintain a normal blood pressure.

  • Drink More Water — Additional fluids keep your blood volume up, which helps your symptoms.

  • Sleeping with your head raised in your bed (about 6 to 10 inches higher than your body).

  • Taking medicines such as fludrocortisone and midodrine to increase your blood pressure.

Support groups for Dysautonomia:

Healthcare facilities that treat the autonomic nervous system:

  • Vanderbilt Autonomic Dysfunction Center — The Vanderbilt Autonomic Dysfunction Center (ADC) is one of the nation's leading expert centers in dysautonomia, or autonomic dysfunction. Their outpatient clinic offers comprehensive testing. Their Clinical Research Center (CRC) conducts ongoing clinical research studies to better understand the pathophysiology of the autonomic nervous system and its role in autonomic dysfunction, all the while seeking to discover new therapies to help optimize treatment of known autonomic disorders. 

  • Postural Orthostatic Tachycardia Syndrome (POTS) Program — The POTS program at Johns Hopkins, which has one of the few POTS centers in the U.S., is dedicated to treating adults and children with POTS.

Articles on dysautonomia:

Studies on the Link Between COVID-19 and Dysauntomia: