Dysautonomia is difficult to pronounce and even more difficult to live with. Before I can share how dysautonomia has affected my life I should explain what it is. Dysautonomia is an umbrella term that covers any condition that is caused by a malfunctioning autonomic nervous system (ANS). There is no cure for dysautonomia. [If the dysautonomia is caused by a disease, curing the disease may return the autonomic nervous system to normal function but this is not always the case.] The ANS controls the bodily functions that are performed unconsciously. To complicate things further, the ANS comprises both the sympathetic nervous system (SNS), which regulates bodily functions related to the “fight or flight” response. and the parasympathetic nervous system (PNS), which regulates the functions when the body is in the “rest and digest” state. Both of these components of the ANS are constantly active at low levels to maintain an equilibrium within the body.
There are more than 15 types of dysautonomia affecting around 70 million people worldwide. The two most common types of dysautonomia are Neurocardiogenic Syncope (NCS) and Postural Orthostatic Tachycardia Syndrome (POTS).
NCS
NCS, which affects tens of millions of people worldwide, disrupts functions performed by the ANS that counteract blood pooling (which is caused by gravity pulling blood downward). With NCS these processes do not function correctly, resulting in temporary loss of circulation to the brain which causes fainting, also known a syncope. As with most types of dysautonomia, NCS has a spectrum of severity. Many people are able to manage the symptoms on their own by avoiding known triggers such as dehydration, stress, and excessive heat.
POTS
POTS affects between 1 and 3 million people in the United States alone, 80% of whom are female. POTS causes greatly increased heart rate when a person moves from lying down to sitting, or sitting to standing. The symptoms are even more severe when a person goes directly from lying down to standing. Most people with POTS (many of whom refer to themselves as “potsies”) know that they should under no circumstances go quickly from being horizontal to being vertical. Doing so is so problematic that one of the more common tests used to diagnose POTS is the tilt table test.
People with POTS often also experience one or more common symptoms, including but not limited to:
- Lightheadedness
- Fainting
- Tachycardia (rapid heart rate)
- Shortness of breath
- Shaking
- Gastrointestinal upset
- Exercise intolerance
- Extreme sensitivity to temperatures
One of the reasons that there are so many symptoms of POTS is because it is very often co-morbid with other disorders. Some researchers believe that POTS is a genetic condition while others think that it is has autoimmune cause. Many people affected with POTS have an autoimmune disease; those who do not may have high levels of auto immune markers.
Not all cases of POTS can be linked with autoimmune problems, however. It is thought that POTS can also be caused by a variety of conditions and incidents including trauma, surgery, pregnancy, a variety of infections, chemotherapy, heavy metal poisoning, toxicity resulting from alcoholism, and diabetes, to name a few. Because of the vast number of potential causes for POTS, the variety of symptoms, and a general lack of awareness (even within the medical community) the average diagnostic delay for a patient with POTS is 5 years and 11 months. More than a quarter of these patients have to see more than 10 doctors about their symptoms before being diagnosed with POTS.
Now seems like a good time to remind you that POTS is the second most common type of dysautonomia and the average amount of time it takes to get a diagnosis is still over half a decade.
Okay, now you know what the autonomic nervous system controls and therefore what functions dysautonomia has the potential to disrupt. I have talked to a lot of people with different types of dysautonomia and no two people have the same experiences. Mine has been a pretty wild ride.
My Story
While I have had symptoms of dysautonomia since I was about 15, very nearly half of my life, I did not learn about dysautonomia until June of 2018. Most of my symptoms never presented severely enough for me to seek medical attention; some I didn’t even know were unusual experiences. I wrote off many problems as me being clumsy or lazy or weak or as a consequence of being overweight. I also have a diagnosed anxiety disorder so the more severe symptoms I was experiencing I attributed to that. Many people with dysautonomia are misdiagnosed with an anxiety disorder because many of the symptoms can look like a panic attack. I was not misdiagnosed–I absolutely have an anxiety disorder. I just also happen to have dysautonomia.
My therapist, while she is admittedly not qualified to diagnose dysautonomia, was the first person to suggest that I should probably talk to my general practitioner about the possibility that I had it. I had been telling her how frustrating being startled is because adrenaline rushes are so painful, like lightning shooting through the top of my head and branching down my spine and sometimes arms and legs depending on the severity of what scared me. I was 29 years old when I learned that adrenaline is not supposed to hurt. She opened her laptop and started to ask if I experienced certain symptoms. At some point I had experienced almost all of them. It was like winning bingo in purgatory. She told me that I should do some research, and maybe talk to my dad (who happens to be a non-clinical neurologist), and talk to my doctor.
That presented a new problem. I hate going to doctors. I didn’t even have a family doctor. I spent over an hour calling offices before I found a doctor who had an available appointment only 4 weeks out instead of the 4 months I had been told by other offices. My appointment was set for the second to last Friday in July. At that point I was mostly going so that my therapist wouldn’t nag me about it. It was a very hot and very stressful summer and I’ll never know for sure what caused my first big symptom flare up, but I count myself lucky to be able to tell you all about it.
On July 17th I was driving home and Scout, my psychiatric service dog in training started to whine. I assumed it was because we had been out six hours longer than normal, it had been a very stressful day, and it was really really hot out. We had just left the grocery store and were on the interstate on the way home. I assumed she was whining because she was tired. I told her that we were almost home. She started barking in her recently perfected Big Girl Bark directly next to my right ear. (Scout is a Leonberger, and even at only 8 months was pushing 100 pounds, so that Big Girl Bark was big.)
I feared there was about to be a potty emergency and pulled into a rest stop a couple of minutes later. She barked until the car was stopped. Before I could get out of the car my vision became dark and blurry, I was lightheaded and dizzy, and then I fainted. I came to with her licking my face. Based off of what was on the radio I couldn’t have been unconscious for very long, but being unconscious for even a second when driving at nearly 80mph can cause a life threatening situation. I had never experienced syncope before and, while tired and annoyed, I felt otherwise fine right up until the few seconds before I fainted. I have no doubt that Scout saved us both that day. She is now learning a more refined syncope alert along with her other tasks.
That day kicked off a really rough time for me. I saw my new doctor the next week and luckily she not only knew about POTS but had a loved one who with it. Because of that it turned out that the letters I brought from other medical professionals backing up my opinion weren’t needed, but we had a nice laugh about it. We were operating under the suspicion that my dysautonomia was POTS until my heart rate started to “do the thing” even if I had not moved in hours. I had a day when my heart rate bounced back and forth from the mid 50s to the mid 140s ever minute or two for about 16 hours. It was a terrible experience. I do not recommend it.
I still can’t stand for more than 15 or 20 minutes without getting dizzy. I’ve had to learn how to work around needing to lean over because that is an almost guaranteed way to mess up, well, just about everything. I’ve missed multiple weddings and other events I’d planned on enjoying. I now only make tentative plans with the exception of doctor’s appointments because I can never guess how I’m going to feel. I know that I have to stay hydrated and avoid getting overheated, but even when I do everything I’m supposed to do sometimes my ANS just won’t cooperate. It’s extremely frustrating.
Like all people with invisible disabilities, I’ve run into some very unkind people. And just like anyone who isn’t blind but has a service dog I’ve run into a lot of very nosy people. Unfortunately sometimes I run into people who are members of both groups. They want to know why I have a service dog and they’re jerks about it. If you have dysautonomia and don’t have the spoons to explain to an inquisitive and rude stranger what that means take a page from my book: I tell them that “sometimes my brain forgets how to drive my meat.” It usually creeps them out just enough to get them to stop asking questions and the levity makes me feel better.
About the Author
Sabrina lives in the woods with her husband, Matthew, their good pal Atlas, three dogs, three cats, a grumpy tegu lizard, 4 ducks, and occasionally a shower full of foster kittens. She is currently unable to hold a traditional job but is working on the
Sabrina and her services dog
art for multiple decks of cards and is in the beginning stages of writing and illustrating a series of children’s books. On the days that she can stand for more than 15 minutes she helps with the homestead work.
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