October is dysautonomia awareness month! I created this especially for those SW fangirls, like myself, that suffer from POTS (postural orthostatic tachycardia syndrome). In order to be diagnosed a tilt table test is administered, in which you are strapped to a table and inclined to 70 degrees while hooked up to a bunch of machines that measure your blood pressure, heart rate, breathing, oxygen, and sweat response. When I saw this scene in TFA I had recently been diagnosed, and my first thought was “that literally looks like torture!”, because I quite literally started having full body convulsions after being lifted for only like 5 seconds!
To learn what POTS is please take a few minutes out of your day to watch the short vid in the link below. If you don’t want to watch the vid, I will give my best attempt to explain it in layman’s terms.
https://youtu.be/ch6ipV3M4yo
Dysautonomia is a group of medical conditions that are characterized by a loss of proper function of the autonomic nervous system, which is in charge of everything that should happen automatically in the body without you consciously thinking about it, such as heart rate, blood pressure, blood vessel contraction and expansion, core body temperature, digestion, pupil dilation, organ functions, pain response, sleep (my circadian rhythm is all out of whack!) etc. etc. This is not a rare disorder, which primarily effects young women, usually starting in mid teens-early 20’s, but there is so little research no one knows how many people have it. In fact it is so misunderstood that most doctors don’t even know what it is! (I cannot tell you how many doctors I’ve had to explain it too 🤦♀️). POTS specifically is characterized by the body’s inability to maintain blood pressure when you stand up. You know that feeling when you stand up too quickly and you get really dizzy and have to sit down? That happens because in order to keep enough blood going to your brain, a complex series of things needs to happen when you change to a vertical position. When you stand up your brain tells your blood vessels in your legs that they need to constrict to prevent blood from pooling in the feet and keep the blood up in the head, then the heart needs to beat strong and fast to push the blood back into the brain within 2-3 beats. When the body fails to do this properly, if even a small percentage of blood falls from the brain, you are in danger of passing out, or at the very least feeling extremely dizzy, lightheaded, confused, nauseous, or a headache. People with POTS experience this every time they stand up! Many faint multiple times a day, and suffer from injuries such as bruises, sprains, whiplash, even broken bones and concussions from falling when passing out. When a person with POTS stands up, the blood vessels in the legs either expand instead of constricting, or simply fail to constrict, making the blood fall down to the feet (ppl with pots often have purple or red flushed feet). The heart starts doing its thing to pump the blood up to the brain, unawares that the blood vessels did not hold up their part of the bargain! Then the heart realizes the blood is gone, there’s not enough to pump up to the brain! So it freaks out and starts beating like a jackhammer (this is called tachycardia) desperately trying to pump enough blood up to the brain so you don’t lose consciousness. This releases a ton of adrenaline, and you then often start breathing heavily as if you’ve just run a marathon, only you can’t keep a rhythm, so you’ll be hyperventilating one second, and the next just fast deep breathes, the next slow breathing, then hyperventilating again, then holding your breath, then breathing slowly, and back to hyperventilating etc. If the heart still fails to pump enough blood to the brain, to prevent permanent brain damage or death, the brain presses the off button, and you pass out..
But people with POTS also suffer from other symptoms related to dysautonomia, such as digestive issues like IBS and gastroparesis (paralyzed gut), inability to sleep or keep a sleep schedule (body does not understand that sun means awake, dark means sleep!), chronic fatigue, brain fog, chronic pain, over active adrenal glands, and so so much more (a lot also have Ehlers-Danlos Syndrome, a connective tissue disorder characterized by a genetic fault in collagen production, creating weak and loose tendons, ligaments, skin, and in severe and deadly cases, organ structure. This makes exercising difficult...)
So in order to treat POTS there has to be a very holistic approach, which modern medicine tends to not do very well, everything is very compartmentalized. Doctors specialize in one thing, and won’t treat anything else or communicate closely with doctors in other fields.
Treatment right now is not very effective. Most people take a medicine to retain water volume, drink 2 liters water/day, and eat lots of salt, potassium, and magnesium so that with increased blood volume less blood will fall from the head, in theory anyway. Intense specialized physical therapy is needed, which includes intense cardio (that makes you pass out sometimes... super fun), moving the digestive tract (it doesn’t know wtf it’s doing), strengthening muscles that start to weaken and atrophy from prolonged bed rest (it’s hard to do anything when you pass out every time you stand up, but the longer you spend on bed rest the worse pots gets), strengthen leg and core muscles to pump the blood which the blood vessels suck at doing, breathing practices to prevent hyperventilation or breath holding, and meditation to calm the parasympathetic nervous system (which is in charge of fight or flight). All very Jedi like actually. So to motivate myself to do up to 2 hrs of pt throughout the day, I tell myself I’m training to be a POTSie Jedi. Lol
Please help spread awareness and educate yourself! We need more research to find better medications and hopefully one day a cure! Feel free to dm me with any questions, especially if you’ve ever experienced any of the symptoms described in the video!
