I also lie in my car, in my bed, and at my desk at work. Standing, and some other things, cause my blood supply to to remain in my legs and limits the amount my brains gets. Since our bodies are smart, the brain will protect itself and if it does not get proper blood supply it will bring the brain to the feet [RE: syncope]. So, at this junction, my body and gravity aren’t really friends anymore because I no longer tolerate its shit. I spend most of my time cursing at it out loud and a fair amount of energy trying to counteract its power. Which, makes me look like a crazy 30-something year old. I wear old lady compression hose with shorts in the summer and sunglasses inside at work. I’ve become that person.
As you have probably guessed by now I live with a condition called dysautonomia. And since you’re here, I’m going to make the assumption that we share this syndrome or at least an interest in it. In a nutshell, dysautonomia is what happens when the part of the nervous system that controls automatic functions (things that don’t require our thought to happen) goes rogue. The Autonomic Nervous System is really in charge of so many areas of the body and this is generally why misdiagnosis occurs. Because the Autonomic Nervous System effects heart rate, blood pressure control, body temperature regulation, pupil dilation/constriction, digestion, and bladder function, it has the power to create symptoms such as: tachycardia (fast heart rate), orthostatic intolerance (that whole bit about gravity), chills, sweats, tremors, trouble breathing, paleness, visual changes, confusion, migraines, lightheadness, fainting, dizziness, constipation, vomiting, chest pain, diarrhea and about 20 other issues. Various forms of stimulation can cause a patient to become symptomatic such as: bright lights, loud sounds, raising arms above the head, exercise, standing, sitting, hot weather, cold weather, diet, and mild dehydration.
The nerve! I know, I know- unwell and unfunny. What a life.
But, I digress. Dysautonomia is actually fairly common world wide. Unfortunately, it is widely under diagnosed due to lack of professional knowledge and community awareness of its existence. Awareness has increased in recent years and some patients are lucky to receive a diagnosis faster than before. Prognosis ranges between minor inconvenience to becoming fully disabled and anywhere in between. Treatment includes dietary adaptations, exercise therapy, compression garments to promote blood circulation, medications, and rest. Etiology is still under investigation and there is no cure at this time.
I was diagnosed with dysautonomia during the summer of 2016 following YEARS of unsuccessful diagnoses, procedures, medications, and probably all the testing that modern medicine can offer. As a nurse who works in cardiology, it was extremely frustrating knowing that something was wrong yet all my diagnostic tests would return negative results. Only in the medical field are negative results usually a positive thing; but in the case of dysautonomia patients, these results usually push off proper diagnosis for years. I am fortunate to have a physician who understands the disorder and a strong support system, but many patients are not. My aim here is to help bring awareness to dysautonomia in the hope that others don’t need to experience what I’ve gone through.