October 5, 2024

By Jenn Mumma

In honor of October being dysautonomia awareness month, I want to share my story to help others who may be having symptoms of POTS (postural orthostatic tachycardia syndrome) find relief by getting a diagnosis. POTS is under the umbrella of dysautonomia. Dysautonomia, pronounced dis’-oughta-know’-me-uh, and impacts over 70 million people worldwide.

Dysautonomia is an umbrella term used to describe various medical conditions that cause a malfunction of the autonomic nervous system. The autonomic nervous system controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, and more. People living with different forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and other symptoms.

Postural Orthostatic Tachycardia Syndrome (POTS) is a common form of dysautonomia.

POTS impact an estimated 1 to 3 million Americans and millions more around the world.

About 85% of POTS patients are female.

Mayo Clinic researchers estimate that 1 in 100 teens develop pots before adulthood, but 50% of patients develop over the age of 18.

The average POTS patient experiences a four-year diagnostic delay due to lack of awareness.

POTS symptoms can include lightheadedness, a fast heart rate standing, shortness of breath, migraines, gastrointestinal problems and more.

Neurocardiogenic syncope (NCS) impacts 1 out of 5 individuals, or 20% of the population.

Most people with NCS only faint once or twice in their life, but a smaller subset of NCS patients are very disabled by frequent fainting spells.

There is an amazing video on POTS on https://vimeo.com/292473119

I was in high school when I started having symptoms.

Fast forward a few years, I was 20 and my heart rate was constantly high. I continued to get more symptoms besides tachycardia, like severe brain fog, fatigue, chest pains, shaking, pooling in my legs, and at times not sweating, and several more. I was on disability at the age of 25. I couldn’t hold a job. My doctors weren’t helpful. One in fact called me a hyperchondriac to my face. I was told and eventually convinced that all this was anxiety. Until one day I woke up with severe vertigo. My husband took me to the doctor and they took my vitals. My heart rate was 134 bpm and it stayed that high, so they sent me to another hospital to pick up a holter monitor to wear for a few days. It was full of arythmias and a high resting heart rate. I was diagnosed with IST, inappropriate sinus tachycardia. Which is a form of dysautonomia. They decided to do an EP study and ablation. I asked multiple times if I had POTS,

They assured me I did not, so I did the ablation. My POTS got worse because of that. I ended up in a wheelchair for a while. Standing up for five minutes would make me pass out.

I went to Cleveland Clinic and also saw a world-renown doctor in Ohio. They both said I was one of the 25% who would never get better. Years later I had a two-year remission. And then recently I was in bed for two years. I’ve been out of bed for a year and a half now. Getting out of bed took me sitting up for twenty minutes, then laying down for 20 minutes, and repeated all day. Then I’d get up and do something for 30 minutes, then lay down for 30 minutes, and repeat throughout the day. I decided to organize my house when I was up.

I started getting infusions two times a week. I get 1.5 liters of normal saline to help boost my blood volume so I don’t pass out. Before I was passing out 2-3 times a week. Many years later, both my children were diagnosed with POTS. POTS is 40% herediatry according to new research. Diagnostic delay is averaged at 4 years. I knew my kids’ symptoms, so I was able to get them both diagnosed quickly.

Their POTS symptoms at times are really bad. My daughter’s POTS got worse after she had COVID two years ago.

My son barely graduated high school due to his absences. He just started college and I’m so proud of him. And my daughter nearly didn’t pass ninth grade from her absences. Now she is doing better after PT and medication changes and lifestyle changes. She has only missed one day of school and has all A’s in her classes.

There are many types of dysautonomias, including, but not limited to, neurocardiogenic syncope, postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, orthostatic hypotension, autoimmune autonomic ganglionopathy, pure autonomic failure, and multiple system atrophy.

There is hope! Many people who suffer from dysautomomia experience relief of symptoms through lifestyle changes or medications. It’s hard but it can be done. Drinking lots of water and eating a ton of salt, and working out are just a few things that can be done.