Photo Credit: DINET
Image Credit: Reflections of a Bear
Dysautonomia is an umbrella term used to describe the dysfunction of the autonomic nervous system. There are many different types of dysautonomia, and this infographic shows some of the illnesses that fall under the category of dysautonomia.
The autonomic nervous system controls everything in the body that you don't have to think about such as heart rate, blood pressure, circulation, temperature regulation, digestion, sensory perception, energy production, and more. When the autonomic nervous system does not function properly, these processes can become impaired.
One of the most common forms of dysautonomia is POTS. The Mayo Clinic estimates that 1 in every 100 teenagers has POTS. Though many people haven't heard of it, it is actually fairly common. "POTS might be the most common medical condition that no one has ever heard of."
Despite the fact that POTS is common, there is often a long delay between the onset of symptoms and the diagnosis of POTS. A recent survey showed that the average diagnostic delay is 5 years and 11 months. Before receiving an accurate diagnosis, 59% of patients are told that it is "all in their head." Even though POTS is common, 27% of patients had to visit 10 or more doctors before a correct diagnosis was made.
Over the years my health has gotten progressively worse. I do still fit the POTS category, but POTS no longer totally describes my dysautonomia. For this reason, my doctors typically say that I have "dysautonomia" as a diagnosis because that covers the broad variety of symptoms I have. Because of the severity of my illness, the progression of symptoms, and the lack of response to treatment, several of my doctors believe that I have a mitochondrial disease as a root cause for my dysautonomia.
When I saw Dr. Cohen several years ago, I asked him if he believed I had a mitochondrial disease, and he said, "Definitely. The question is: can we prove it?" We may never know why I have dysautonomia or why my condition has been progressively getting worse. We may never be able to prove that it is a mitochondrial disease. But, perhaps, with more awareness, research, and advances in testing, we might find an answer one day!
If you want to know more about how POTS and dysautonomia affect me, here are some blog posts that explain more:
For Further Information
If you want to learn more about POTS, here are a couple of good articles:
If you want to learn more about dysautonomia, I recommend visiting:
Happy Dysautonomia Awareness Month!