Are you yearnin’ for some learnin’ about another invisible illness? If so, grab yourself a a Gatorade and a packet of salt and let’s dive right into this!
Note: If that snack doesn’t sound appetizing to you then you probably aren’t familiar dysautonomia, but keep reading if you want in on the scoop…
What is dysautonomia?
In order to understand dysautonomia, you need a quick run-down on how the nervous system works. To put it simply, your nervous system is broken down into two distinct divisions: the somatic nervous system (SNS) is responsible for voluntary movements, like picking up a pencil or kicking a soccer ball, and your autonomic nervous system (ANS) is in charge of all of the internal functions that you don’t have to think about like digestion, heart rate, breathing, and hormone regulation.
If you have “dysautonomia” that means that the foreman in charge of all those automatic body functions is sleeping on the job, and the body functions that you don’t normally think about start to shut down. You don’t realize how many things your body has to juggle at once until it starts dropping the ball.
Dysautonomia is an umbrella term that encompasses many different conditions as you can see in the graphic below.
My dysautonomia conditions are: POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotention). These diagnoses were confirmed by the tilt table test, (otherwise known as the medieval torture device used to punish sick people) which is currently the gold standard for confirming dysautonomia.
(I will be using the terms “POTS” and “dysautonomia” interchangeably throughout this post, but keep in mind that not every person who has dysautonomia has POTS, specifically).
What do all these acronyms mean?
In simple terms, POTS and NMH mean that when my body goes from laying to sitting or from sitting to standing, my blood pressure drops (instead of increasing the way it should) and my heart rate skyrockets. Unlike a healthy body, my heart rate does not even out after I have been standing up for a few minutes. In fact, mine continues to rise until I’m huffing and puffing like the big bad wolf just from standing in a grocery store line for 5 minutes.
Most people with dysautonomia also have their sympathetic nervous system (aka. their “fight or flight” response) working on over-time, which makes us very prone to anxiety, panic attacks, and diminishes our bodies ability to “rest and digest,” which is very important for maintaining your health (and your sanity).
My experience with dysautonomia:
It’s impossible to trace back to the exact moment that my nervous system started to slack on the job, but looking back, I can now identify some of my earlier symptoms of dysautonomia:
- I’ve had freezing cold, purple colored, blotchy-looking feet since middle school.
- I experienced exercise intolerance and tachycardia (a fast heart rate) at a young age. I remember in my middle school P.E. class that we would practice taking our heart rates, and mine were so high that my teachers thought I messed up on my calculations. While the other kids had resting heart rates between 50 and 90bpm, my resting heart rate was sitting at 125bpm. After running a mile, they had heart rates of 120pbm while mine was pushing 200bpm.
- I had digestive issues all through my childhood and these issues hit an all time time high in college. Dysautonomia can wreck your gut motility, resulting in the infamous “food baby” bloat.
Those were some early signs of my nervous system dysfunction that flew under the radar for a decade until they became serious enough to warrant medical attention. Now, at age 24 (holy cow I’m old), here are some of the ways my dysautonomia affects me:
- Just sitting up can be difficult, and standing is even harder. I do not experience fainting spells with my POTS (many other Potsies do), but I nearly “blackout” and get tunnel vision upon standing, especially if it’s warm out. On a bad day, simply sitting up in a chair can make me breathless. Obviously this makes leaving the house difficult and makes exercising nearly impossible.
- Because my blood vessels are inflamed, I have poor circulation and the blood “pools” in the lower half of my body (hence the stylish, purple feet). My inflamed vessels also result in a rash-like appearance on my skin called livedo reticularis. This scaly, blotchy texture makes my lower body look like a cross between a Dexter victim and Smaug from The Hobbit. It’s a great summer look!
- Poor circulation also results in very little blood getting to my head when I’m sitting up, which make it very difficult to think clearly, and no matter how tan my body gets, my face remains a nice shade of ghostly pale.
- The lack of circulation also makes my skeletal muscles very stiff and unhappy (think “the tin man” and from The Wizard of Oz without his oil can).
- My “internal thermostat” is totally haywire, so much so that you might catch me in two pairs of socks, a sweatshirt, and a winter hat, while also wearing no pants, blasting the space heater on high, and wearing an ice pack around my neck. Similarly to having a fever, my body feels simultaneously too hot and too cold most of the time.
- I’m also extremely sensitive to external temperature changes. Raising the temperature outside by one degree can be the difference between me being able to walk down the street or not. Hot tubs are absolutely off limits and I take colder showers as often as I can bear them.
- Daily migraines. Need I say more?
- Even when they’re not super hot, showers end up being more like an obstacle course than a relaxing activity.
Myths vs. Truths about Dysautonomia:
As with any complex chronic illness, there is a lot of confusing and misleading information out there about dysautonomia. Because these conditions are considered to be “rare” and relatively new, many doctors (even some of the “POTS specialists”) are way behind the research in terms of treatment options.
Here are some dysautonomia myths you may have heard:
“POTS is a heart condition”
In truth, POTS is way more than a simple cardiac condition. A racing heart is the most objective, measurable symptom of POTS, and any potsie will tell you that the doctor who diagnoses them was a cardiologist (unless of course their symptoms were brushed off as “just anxiety” and they were banished to psychiatry).
But just because heart symptoms manifest as an obvious sign of POTS, that doesn’t make POTS purely a cardiac condition. After all, dysautonomia is a breakdown of the nervous system and it should be treated as such. It affects almost every system in the body!
“The only way to treat POTS is to increase blood volume”
Got salt? If you have a POTS diagnosis, you’ve probably been told that salt-loading and Gatorade are your best friends and are the best ways to manage your symptoms. And while increasing your blood volume through salt tablets or drugs like Midodrine (can you feel the scalp tingles already?) may help relieve you of symptoms like fainting, you never really address the underlying issue with these methods.
Newer research suggests that exploring genetic issues, lowering vascular inflammation and addressing the nervous system itself (hello, vagus nerve!) may be more effective in the long run, as these methods seek to fix the actual problem rather than band-aid the symptoms. There are more options for treating POTS than we are often told, and hopefully this information will soon become mainstream!
For more information, you can check out the Dysautonomia International website:
You can also read the personal stories of other potsies on The Might website:
Thanks for reading!
Until next time,
Em the Silver (and purple-footed) Spoonie