This is basically an appendix/addendum/supplement/whatever to the post “Have wheels will travel.”
While writing that post, I realized I haven’t really written much about dysautonomia so if you’re unfamiliar with the condition you might not really know what I was talking about. As it turns out, it’s a lot harder to provide a brief description of dysautonomia than I thought, at least for someone like me with a tendency to ramble. In an effort to avoid publishing a novella, I’m posting this piece separately for anyone who wants to know more.
Okay, so let’s chat a little bit about dysautonomia.
Dysautonomia is a fancy word that is unrecognized by any spell check program to describe a dysfunction of the autonomic nervous system (ANS). When you’re thinking about which functions are autonomic, think automatic. The ANS is in control of all of the things that go on in our bodies without us even thinking about them, things like heart rate, blood pressure, digestion, respiratory rate and temperature regulation. You can probably imagine, then, that when this system becomes dysfunctional a lot of chaos can ensue!
There are several different subtypes of dysautonomia but there is a lot of overlap between them. Specifically, I have POTS (Postural Orthostatic Tachycardia Syndrome) which as the name implies means that when I’m upright (orthostatic) my heart beats inappropriately fast (tachycardia). That literal explanation, however, makes it sound way more innocuous than it actually is.
Because of my POTS, I have a really hard time standing, walking around and just being upright for too long. Our bodies are constantly making adjustments in order to keep everything in balance. When we stand up, our bodies make even more adjustments to counteract the effects of gravity. When I stand up, my body doesn’t make all of those necessary adjustments. Blood pools in the wrong places, my brain doesn’t get enough oxygen, my cardiac output drops, my blood pressure becomes oftentimes unreadable and my heart rate jumps way up. Objectively speaking, this is what being upright can look like:
As for how it feels? It feels rather terrible. If you’re with me when this is happening you will actually see the colour drain out of my face. I get lightheaded, dizzy, nauseous and shaky. Oftentimes I will get this ache in my gut, as if someone punched me in the stomach, and it forces me to bend over. My ears might start ringing, my vision might go blurry, and then there is like this force trying to pull me down to the ground. When your ANS is dysfunctional it’s also really easy to experience sensory overload. Situations that involve a ton of noise, a ton of people or a ton of frenzy can overstimulate the ANS and thus trigger a lot of the symptoms, sort like poking a sleeping bear.
Not every day brings vitals quite that wonky, of course, but every day brings symptoms and some days these symptoms make it almost impossible to be a functional human being. You know when you’re recovering from the flu and you just get zapped of energy anytime you try to do anything? After a few days of lying on the couch you decide to get up and be productive, then after 10 minutes you’re exhausted, you feel so sick and you end up back on the couch. It’s like that, except you’ve also just donated blood, you’re dehydrated and you’re being forced to run on the spot. It’s basically as fun as it sounds.
There are so many symptoms associated with POTS and dysautonomia and unfortunately they are not just limited to an upright posture. The tricky thing about POTS is that it is not an actual disease, rather it is a syndrome, a cluster of symptoms. For example, if someone is experiencing nausea, heartburn and abdominal pain, there could be any number of things going on and causing that set of symptoms. It’s a similar situation with dysautonomia; there are so many different possible origins, including autoimmune, genetic and viral, and in many cases the cause is idiopathic (which is a fancy medical way of saying “this is what is wrong with you but we have no idea why”). So many patients have multiple health issues which can make it really hard to tease out what exactly is going on.
There is no cure for dysautonomia but there are treatments that focus on symptom control. Many of these treatments involve lifestyle modifications but there are also some medications available to help control heart rate and blood pressure. As no two patients are the same, each patient’s management plan might look different. Personally, I am in the middle of trying to figure out the right combination of things that will result in the most improvement with the least amount of side effects. It’s a very fine balance!
And there you have it. That’s the best I could do in 800 words, but in case you are more confused now than you were 800 words ago I’m going to leave you with links to some excellent resources!
For more information about POTS and dysautonomia, I recommend checking out The Dysautonomia Information Network or Dysautonomia International. And for more information about day to day life with dysautonomia a few of my favourite blogs are Living with Bob, Just Mildly Medicated and Let’s Feel Better.
And finally, since the whole purpose of the appendix (or addendum or supplement or whatever) was to help you understand why I sometimes use a wheelchair, let me take you back there now!