I know it’s half way through October already, but I wanted to take the time to write a proper post to address the fact it’s dysautonomia awareness month! Those of you who know me well are very familiar with the fact I have a condition called POTS, which is short for postural orthostatic tachycardia syndrome. Those are four fancy words that basically mean whenever I’m not laying down, my autonomic nervous system (the part that handles all your basic life functions on “autopilot”) forgets how to regulate blood pressure which leaves my heart to try to compensate by beating too quickly. Blood doesn’t flow properly to the right places and my organs don’t get the right amount of oxygen and nutrients they need, and this makes me very dizzy, sometimes nauseous, and lightheaded and can cause me to faint. It can also cause brain fog and other cognitive problems, chronic fatigue, GI problems, shortness of breath, and heat intolerance among a long list of other things. Sometimes it’s very severe and my perception of reality can skip like an old Sony Walkman CD player, or I get stuck in what’s called “pre-syncope,” where I essentially feel like I’m about to pass out at any second for hours at a time. Sometimes it’s not bad at all. Every day, hour, and minute is different.
POTS is also a very common co-morbidity with EDS, but the relationship is not well understood. It is postulated that the causal factor of POTS in EDS patients may be related to lax vasculature that is unable to constrict effectively, but that has yet to be confirmed. In 2016, there was a paper published in Nature that discusses a gene mutation that may link EDS, POTS, and a third prevalent co-morbidity called Mast Cell Activation Disorder. However, there’s still much work to be done.
POTS falls under a bigger umbrella of conditions called dysautonomia; a dysfunctional autonomic nervous system can manifest in many different ways depending on the cause. I wanted to take the time to write about dysautonomia because it’s grossly under-recognized and insufficiently understood by the medical community. According to Dysautonomia International’s statistics, over 75% of POTS patients are misdiagnosed before receiving their proper diagnosis, and 73% of patients have had physicians who have never heard of their condition(s); this doesn’t account for the fact that most patients have a large medical team, and there are likely multiple physicians unaware of POTS serving a single surveyed patient. Those are remarkable numbers that very accurately describe my experiences. The most frustrating part, I think, is that dysautonomia is by no means rare: over 70 million people have some type of autonomic dysfunction worldwide!
Research and awareness for POTS and other types of dysautonomia is something very close to my heart (no pun intended) because there is a significant lack of understanding about their etiologies and what treatment plans may be effective. While the latter is improving, it’s important to note that there is no “one-size-fits-all” approach to managing any type of dysautonomia, and this makes treatment very difficult and time-intensive due to its trial-and-error nature. For example, many patients do very well with drugs like midodrine that help increase blood pressure so that the heart doesn’t have to work as hard to pump blood through the body. Two minutes after I took midodrine for the first time, I became so nauseous and developed a headache so severe I almost went straight to the ER because I was concerned about the blood pressure in my brain. Other patients thrive on beta blockers to regulate heart rate; they make me feel more faint than usual. Because there is no clear-cut etiology, improving research efforts is critical to increase understanding of the mechanisms behind these conditions so that more effective treatments may be developed.
Awareness for the general public is important, too! Many patients with POTS are significantly disabled and require a lot of assistance to function. The pain and brain fog can make keeping a job impossible. GI symptoms like gastroparesis can cause severe nausea and chronic malnutrition. Some people faint every time they stand up. On the outside, these things are not apparent. Patients are often chastised for using mobility aids or not giving up seats in public places to the elderly because they’re young and “look fine.” Invisible illness is real, and battling the ignorance of the general public can be, at times, absolutely overwhelming and exhausting. I panic internally any time I’m stuck in a public place with no place to sit, and I feel incredibly uncomfortable asking people to move or let me take their seat because I know that nine times out of ten, I’m going to be met with resistance or hostility for being outwardly “healthy.”
If you want to know more about POTS, check out this short video by Dysautonomia International, or visit their FAQs here. As always, I’m more than willing to discuss my story and experiences with POTS with anyone who’s interested or suspicious someone they love has dysautonomia.
[Our ribbon color is teal – wear some this month for the POTSies!]