Have you ever stood up from a chair, only for your vision to double and your head to pound with dizziness? Maybe, for a brief second, you feel as though you may fall, and you quickly lean on a wall or table for support. Then, almost as quickly as it strikes you, the dizziness passes, leaving you to wonder whether you should seek medical attention or just drink some water.
This phenomenon of getting dizzy after standing up, also known as orthostatic intolerance, is not inherently suggestive of any serious medical issue. For most people, this dizziness is a rare annoyance that happens due to dehydration, prolonged inactivity, or some other temporary impairment of the nervous system. A lot less common is the persistence of orthostatic intolerance in the absence of any obvious physical cause. While I can’t remember my first instance of orthostatic intolerance, I do remember the first time that nothing fixed it.
While I can’t remember my first instance of orthostatic intolerance, I do remember the first time that nothing fixed it.
It was an oppressively hot and humid day, typical for summer in my home of central Illinois. I was going into seventh grade, and had just come home after spending two incredibly stressful years in Florida’s foster care system that left me wracked with anxiety and trust issues, especially toward the authority figures who had disregarded me when I needed them most. I woke up restless and decided to clean up the entire house, starting with our very messy kitchen. I roused my mom and younger brother and declared a cleaning day. My mom was happy to see one of her children take initiative and began helping me dole out tasks, while my brother moped and tried to do as little work as possible; I did not bother my older sister for fear of incurring her wrath.
About half an hour into my valiant cleaning efforts, I stood up to empty a dustpan into the garbage when, all of a sudden, I became incredibly dizzy and fell onto the ground. This wasn’t unique. I had been experiencing these episodes of dizziness more and more over the previous months. They usually served as a reminder that I had neglected my needs or pushed myself too hard. “Did you stand up too fast?” my mother asked. “Take a break and drink some water!” So I ate, drank, and happily resumed my tidying. But I wasn’t cleaning for long before I fell again. I felt the eyes of my mother and brother upon me. “I think I need some time to digest,” I said, “let me take a ten-minute break.” But, as you can probably guess, a break didn’t help. It didn’t matter how much water I drank or how hard I tried to ignore it. Every time I stood up, the dizziness always came back, leaving my legs weak and my head pounding. Not wanting to have my family clean on my behalf, I knelt on the ground to sweep the floor and did the rest of my cleaning from a chair. By the end of the day, the kitchen was clean, but I was left feeling uneasy. My mother reassured me that I had likely inherited low blood pressure from her or was simply anemic, but I had never seen anyone else, not even her, get dizzy in the persistent way I just did.
That uneasiness intensified over the next few years as the collapsing got worse and worse – accompanied by temporary loss of vision, confusion, and eventually, various degrees of losing consciousness. Only after leaving for college, and having access to big city doctors, did I get the diagnosis for what had been ailing me: POTS.
Postural orthostatic tachycardia syndrome, or POTS, is exactly as the name describes: a disorder characterized by tachycardia (unusually high heart rate) after exiting an orthostatic posture (sitting or lying down). POTS is just one form of dysautonomia, a type of disorder in which some aspect of the autonomic (autonomous) nervous system fails to function properly. Typically, the autonomic nervous system regulates heartbeat, respiration, blood pressure, and other such involuntary processes. It’s why your heartbeat increases when you do exercise, and how your body knows to sweat when you get hot. With POTS, the nervous system cannot regulate blood pressure when someone moves from sitting to standing, causing symptoms like increased heart rate, decreased blood pressure, dizziness, and more. POTS is usually diagnosed with a Tilt-table test, a procedure in which an individual is strapped to a table that rises from a horizontal to vertical position. The heart rate is measured and observed for abnormalities. The test is mildly uncomfortable, but also kind of fun.
Despite the straightforward name and explanation, POTS is an extremely complex disorder with symptoms that range from mildly annoying to completely disabling. While many people’s POTS seems to be triggered by an illness such as COVID-19, many others seem to develop it without an inciting event (Dysautonomia International). The characteristic sign of POTS is a sustained high heart rate after rising from rest, but also typical is presyncope, a partial loss of consciousness. Presyncope can be accompanied by dizziness, heart palpitations, temporary loss of vision, and more unpleasantries (Dysautonomia International). That’s the simple part; the complexity of this disorder lies in the effects that are not part of its name or base definition: chronic fatigue, exercise intolerance, brain fog, heat sensitivity, excessive sweating, and much, much more. Some of these symptoms are easily attributed to the malfunctioning autonomic nervous system, but others are more mysterious. It is not uncommon for individuals to suffer from these symptoms for months, and often years, before diagnosis (Shaw et. al, 2019.)
My family accepted this collapsing as part of me, and when people asked me why I fell, I used the “low blood pressure” excuse my mother had given me, even though it didn’t feel quite right.
I remember my first doctor’s visit after my mishap cleaning the kitchen. My doctor welcomed me into her office with a smile. When I told her my issue, though, her tone shifted. “You’re probably just anemic. A lot of women are. We’ll send you for a blood test.” When I came back months later with a test showing normal iron levels (I was on Medicaid and wait times for appointments were very long), she simply shrugged. “It’s probably not anything serious.” That doctor’s appointment, like so many that followed, ended without my receiving any further help. Each time, that same doctor shrugged me off, as did all of the other doctors who observed my unusually low blood pressure. Meanwhile, the dizziness was getting worse, and I was beginning to suffer from brain fog and collapse in school. My family accepted this collapsing as part of me, and when people asked me why I fell, I used the “low blood pressure” excuse my mother had given me, even though it didn’t feel quite right. After all, she wasn’t collapsing everywhere, nor was anyone else around me. But it was easier to pretend this was normal than make a fuss that I knew would be blamed on my anxiety.
I didn’t understand why nobody seemed to know what was wrong with me. I was initially reluctant to seek a diagnosis from the internet for fear of overreacting and diagnosing myself with the worst diseases possible. And yet, I can’t say I trusted my doctors. I didn’t feel like I was being listened to, and my health was only getting worse. Constantly, I questioned myself: was I imagining it? Was I subconsciously trying to get attention, as my doctors seemed to think? Obviously not, as by my senior year of high school, I couldn’t even stand up at the end of class without my head pounding and my knees giving way. One day, while using Tiktok, I saw someone talking about getting dizzy and falling, just like I did. They claimed to have something called “POTS.” As I read the Mayo Clinic page for the disorder, my heart twisted and stung. Every symptom matched. It had to be POTS. Having a name for what was happening to me was like a breath of fresh air; I had begun to suspect I was simply a frail, Victorian noblewoman, prone to dramatic swoons from which a brave knight could catch me in a strong embrace. The brave knight was usually just the floor, though.
As I swiped through videos and profiles related to POTS, I noticed the similarity of most of the people who suffered from this disorder. They were all assigned female at birth, though many identified as transgender and nonbinary. This matches studies about POTS, which show that 90% or more of sufferers are AFAB (Shaw et al., 2019). They also all claimed to have at least one other disorder, commonly Ehlers-Danlos Syndrome (EDS, a connective tissue disorder), autism, ADHD, or forms of dysautonomia besides POTS. I initially assumed that this was selection bias; individuals with autism and ADHD, also known as neurodivergent people, tend to form their own communities on Tiktok where they can feel comfortable to discuss disability and other difficult parts of life. But, to my surprise, more research showed the contrary: neurodivergence, POTS, and EDS occurring together is not a coincidence (Casanova et al., 2020).
Ehlers-Danlos Syndrome is a particularly visible condition; many with this genetic disorder report showing off their unusual flexibility to their elementary school classmates, easily doing the splits or bending their fingers backwards to an unusual degree. Other people can display their flexibility by touching their thumbs to their arms, or fitting their fists in their mouths. These are signs of joint hypermobility, a lack of structural integrity of the joints due to low levels of the protein collagen in a person’s connective tissues. When this condition is severe enough, it becomes something called Ehlers-Danlos Syndrome. Far from a fun party trick, EDS can cause chronic joint dislocation, severe pain, and even organ prolapse as the body fails to hold itself together (Hypermobility and POTS). But there is something about hypermobility and Ehlers-Danlos that goes beyond the joints and muscles of the body. For some reason, individuals with Ehlers-Danlos syndrome are much more likely to be autistic or have ADHD (Csecs et al., 2022). They’re also very likely to have POTS (Wallman et al., 2014). Why are these neurological conditions related to a disorder thought to mostly affect the joints?
I was, and am, absolutely fascinated by these connections. Most conditions and diseases have one main bodily system that they affect, which is how they are diagnosed. For example, diabetes is mainly a disease of the pancreas, and osteoporosis a disease of the bones. It would be easy to assume the same for EDS: that it makes your bodily tissues less rigid, increasing flexibility and frequency of injuries. But what does that have to do with the autonomic nervous system? And how on earth does a lack of collagen make someone neurodivergent?
Unfortunately, like many disorders that affect mostly women, the research on POTS and hypermobility/EDS is almost nonexistent.
Unfortunately, like many disorders that affect mostly women, the research on POTS and hypermobility/EDS is almost nonexistent (Smith, 2023). While there is some theory on how reduced tissue function due to lack of collagen from EDS could contribute to POTS and other cardiac disorders, I have been unable to find any research explaining the link between EDS and neurodivergence (Csecs et al., 2022). I’ve always been proud of my authenticity, honesty, and uniqueness, all of which are qualities related to my own neurodivergence (I have been diagnosed with ADHD but believe I may also be autistic). But when POTS and EDS and neurodivergence come together, everything becomes so nebulous. Is my joint hypermobility the indirect cause of my falling down? Is it because of a lack of brain collagen that I always felt out of place with my peers? At this point, just scrolling on TikTok, I still wasn’t even sure if I had POTS, but the thought that this might connect to my social difficulties and unusual flexibility led me to again seek out some sort of diagnosis.
Once I got to college, I spent another year and a half waiting on appointments for a very busy doctor who dealt mostly with POTS patients. I still remember my tilt-table test. I walked in with my boyfriend, giddy to finally know whether my POTS hypothesis had been correct. As the table tilted me around, I searched the technicians’ faces for anything that could betray my results. If the test was normal, we would be starting over at square one; I would have no explanation for any of my symptoms. Suddenly, as the table tilted me back up from horizontal, the techs went quiet. My heart raced, and not just from the tachycardia.
One tech looked at me, “Hey, is it OK if we bring our resident in and show them your heart rate here? It might be a good learning experience.” As they hemmed and hawed over my heart monitor’s display, it started to hit me. I wasn’t crazy. I wasn’t imagining it. There was something there! I almost cried tears of joy at that moment.
Later that week, I held my boyfriend’s hand and opened up the diagnostic result. “Abnormal autonomic studies, with a tilt examination disclosing a pattern suggestive of the postural orthostatic tachycardia syndrome.” Then, I really did cry.
It didn’t matter that the professor watched me collapse and lose my ability to speak, or that I had that magical tilt-table test that proved beyond a doubt that I was not making this up.
As fascinating as POTS may be in theory, living with it is a different story. An estimated 1-3 million people in the US suffer from POTS, most of whom are women (Dysautonomia International). Despite its prevalence, though, POTS has no real treatments besides a few off-label medications and general recommendations to exercise, drink water, and eat healthily (Postural Orthostatic Tachycardia Syndrome). The medication I currently take for my POTS, Pyridostigmine, is intended for a form of muscle weakness, so it also helps me build some desperately needed muscle. The optimal medication depends on the underlying cause of the POTS: some people benefit more from medications that target the circulatory system, while others prefer more general medications like antidepressants (Dysautonomia International). Even now, with my fancy diagnosis and the precautions I take with my body, I am occasionally reminded that the invisibility of this diagnosis means that to some I may seem lazy or overly dramatic. I recently signed up for a Physical Education (PE) class, a requirement here at MIT. But I had to drop it after just two classes because the PE teacher felt my requested accommodations, such as taking breaks while exercising and keeping my boyfriend close to help me up when I fall, “went against the spirit of the sport (pickleball)” and “weren’t fair to the other players.” It didn’t matter that the professor watched me collapse and lose my ability to speak, or that I had that magical tilt-table test that proved beyond a doubt that I was not making this up. Even the PE department and our school’s own disability offices could not, or would not, force the teacher to accept the accommodations that I needed to safely participate in the class. To the professor, I was just some girl who didn’t want to try that hard in PE class and wanted to stay with my boyfriend the whole time.
My journey with POTS has been a long one. My symptoms have been dismissed by several doctors, and those around me have frequently believed I was just falling to be funny or dramatic. While having a diagnosis has helped me understand myself and my body better, I still struggle with dizziness and joint pain, not to mention the social difficulties that I can now blame on my messed-up body. It’s not all bad; I do now get to be a fainting princess who is rescued by my boyfriend, it just comes at the cost of my ability to do exercise, maintain consciousness, focus on my schoolwork, and other inconsequential things like that. As mentioned before, there are no officially approved medications for POTS, and the fact that it mostly affects women means it has mostly been ignored until recently (check out this link for a visualization of how sexism has affected findings in medical research). Hopefully, as time goes on, this chronically under-researched disorder will get some more attention, funding, and maybe even some proper treatments. But what’s even easier than a medical breakthrough is treating others kindly and believing disabled people when they tell you what they can and cannot do with their bodies.
References
Casanova, Emily L., et al.(2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. Journal of Personalized Medicine, 10 (4), p. 260.< https://doi.org/10.3390/jpm10040260>.
Csecs, Jenny L. L., et al. (2022). Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain. Frontiers in Psychiatry, 12 (2). <https://doi.org/10.3389/fpsyt.2021.786916>.
Dysautonomia International: Dysautonomia Awareness, Dysautonomia Advocacy, Dysautonomia Advancement.” Dysautonomiainternational.org, Postural Orthostatic Tachycardia Syndrome (POTS) (2022). Cleveland Clinic. <my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots>.
Smith, Kerri. (2023) Women’s Health Research Lacks Funding – These Charts Show How. <www.nature.com/immersive/d41586-023-01475-2/index.html>.
Shaw, B. H., et al. (2019) The Face of Postural Tachycardia Syndrome – Insights from a Large Cross‐Sectional Online Community‐Based Survey. Journal of Internal Medicine, 286 (4) pp. 438–448.< https://doi.org/10.1111/joim.12895>.
Wallman, Daniel, et al. (2014). Ehlers-Danlos Syndrome and Postural Tachycardia Syndrome: A Relationship Study (P1.033). Neurology, 82(10),supplement. <https://doi.org/10.1212/wnl.82.10_supplement.p1.033>.
