We got dys: Dysautonomia Awareness Month

On top of October being Disability Awareness Month, it is also Dysautonomia Awareness Month. Also, International Mastocytosis and Mast Cell Disease Day was this month. So October, at least for me, has a lot going on, and I encourage you to take a moment to look at various disease awareness events.

But this article is more about dysautonomia than my other disabilities.

So let’s start at the beginning: what is dysautonomia? Dysautonomia is an umbrella term for conditions that cause a dysfunction of the autonomic nervous system (ANS). The autonomic nervous system controls all of the functions that your body doesn’t think about—things like blood pressure, heart rate, body temperature, blood sugar, digestion… the list goes on. When your body can’t regulate these functions, it essentially can turn into a hot mess, causing a number of symptoms such as fainting, lightheadedness, malnutrition and in severe cases it can even kill you.

There are so many conditions under the dysautonomia umbrella, and they range from fairly common disorders, such as neurocardiogenic syncope (NCS) and postural orthostatic tachycardia syndrome (POTS), to extremely rare ones, such as multiple system atrophy (MSA) and autoimmune autonomic ganglionopathy (AAG). In fact, according to Dysautonomia International, over 70 million people worldwide deal with some kind of dysautonomia. And yet we really don’t know a lot about the autonomic nervous system as a whole.

I personally don’t remember the first time I fainted. I know I went through a period of time in high school where I just couldn’t stop fainting for a few months after my GI system essentially failed for a bit. I got diagnosed with vasovagal syncope, a type of dysautonomia, and we sort of left it at that. I stopped passing out, and I forgot about it even though minus the fainting, the rest of the symptoms I dealt with (dizziness, heart rate issues, weird digestive issues, the works) never went away.

I do remember the first time I passed out in college. It was after Nykerk my freshman year, and it was raining. We were headed back to our dorms to change out of our nunfits. The next thing I knew, I was lying in a puddle, staring at the sky. After that, I passed out multiple times a day for years. 

I went to a cardiologist, and after ruling some cardiac issues out, I was diagnosed with autonomic dysfunction, another word for dysautonomia. After trying more medications, we realized that my dysautonomia was pretty severe, especially when my blood pressure would start spiking to deadly levels. I ended up in the hospital one time after a particularly nasty faint because I went into hypertensive crisis.

What makes dysautonomia hard to treat is how complicated and testy the ANS is. My ANS will give me extremely high and low heart rates, high and low blood pressure and will sometimes even mess with my oxygen levels (among other things). The problem is that most medication to treat one part of the issue (say high heart rate) will exacerbate the other symptom (low heart rate). It’s such a delicate balance of keeping everything in check, and there is just so much involved in doing that.

We know why my dysautonomia is so bad. Dysautonomia can be primary (meaning it exists alone) or it can be secondary (caused by another condition), and mine is caused by my rare disease. Most people with what I have end up with extremely challenging-to-treat dysautonomia (usually POTS), and my dysautonomia was the key to figuring out just which rare disease I have. So I guess I have it to thank for giving me the answers I and my medical team needed.

But that isn’t necessarily the case all the time. Dysautonomia varies so much from person to person. Everyone’s body is different. Some people manage fine with diet changes. Some people are completely disabled by it. At my worst, I couldn’t even shower alone. I couldn’t go anywhere alone. I couldn’t move. Couldn’t drive. I missed so many classes because I literally couldn’t get off the floor without passing out.

But thankfully, that isn’t most people. Most people eventually figure out some way to manage it, whether that’s through medication or diet or different therapies or usually a combination of all of them. I personally get infusions twice a week to keep them at bay, and that along with medication, the use of mobility aids, diet changes, physical therapy and some really clever hacks, I’ve gotten so much of my life back, even though it is still very much a struggle most days.

My mobility aids and infusions are pivotal to keeping me functioning.

I’m lucky to have that kind of access to treatment. Most don’t. POTS, for instance, impacts as many as one out of 100 people, but most states don’t have POTS-literate doctors or clinics. And the ones that do have crazy waits. I personally had to travel hundreds of miles to see an autonomic specialist (and I had to wait over a year to see him), and that was the closest one to me. With COVID-19 cases rising, and dysautonomia often triggered by sudden, intense illness, there will be a rise in dysautonomia cases. We, as a country, need more specialists who can handle that rise because everyone deserves treatment.

Because yes, my experience with dysautonomia was (and continues to be) a wild ride. But it shouldn’t have to be, and that’s what these awareness months are for.

October is Disability Awareness Month.