It’s October, which means it’s officially Dysautonomia Awareness Month (and oh boy does it need awareness). Although dysautonomia affects over 70 million people, it’s rarely spoken about because it isn’t technically a diagnosis, but rather an umbrella term for any disorder of the autonomic nervous system. What lowers awareness even more, is that these disorders are “invisible illnesses,” because you can’t tell that someone has one just by looking at them. This has led to mass misdiagnosis, and a large number of people only receive a diagnosis years after exhibiting their first symptoms.
So, what functions does dysautonomia affect (and what does the autonomic nervous system (ANS) regulate)? Basically, it’s anything your body regulates without you having to think about it. Here are a few examples:
- Heart rate
- Blood pressure
- Digestion
- Perspiration
- Temperature regulation
- Circulation
- Breathing
With the malfunction or failure of certain ANS functions, symptoms can span from mildly uncomfortable to entirely unmanageable. Unfortunately, there’s no set treatment to solve any dysautonomia, but different medications and practices can help alleviate some symptoms.
The most common dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS), or fainting disease. POTS is characterized by symptoms in multiple organ systems and an abnormal increase in heart rate (30 bpm in adults) upon standing. Beyond heart rate malfunction, experiences also include abnormal blood flow to the heart, lungs and brain; in addition, you can also experience problems with digestion, temperature regulation, circulation and other ANS malfunctions.
I’d like to bring awareness to dysautonomia because if I had known about it sooner, I would’ve been diagnosed with POTS sooner and avoided many, many attacks.
I hadn’t heard of Postural Orthostatic Tachycardia Syndrome until I met my cardiologist in August 2021. I was working out one day and my heart rate was 217 bpm, and I remember thinking to myself “that doesn’t seem right” (duh). Five months later I was wearing my Apple watch while walking and got an alert that I had extremely low cardio fitness due to poor heart rate regulation. My family has a diverse range of heart problems, so that little notification inspired me to make an appointment with a cardiologist.
After a few tests over the course of four months, I was officially diagnosed with POTS. My symptoms include constantly fainting, being unable to manage heat without feeling incredibly nauseous and dazed, pure white fingers and toes when I’m cold, chest pains, dizziness/fainting any time I raise my arms above my head, and of course, a heart rate rise of at least 40 bpm when I stand. It’s kind of funny to me that I thought the heart rate rise was normal, because I had never heard otherwise.
I can track my POTS symptoms back to at least 2009. Symptoms that I mentioned to doctors, teachers and family members. It still took 12 years for me to receive a diagnosis and learn how to manage my symptoms. I hope that Dysautonomia Awareness Month continues to inform others about dysautonomia, and that those suffering recognize the symptoms and get the support they need.