This Thing Called POTS
Image: “Blue Butterfly” by Meghan Ochs
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“I have POTS,” I said. I sat back in the cold, plasticky chair, glancing around at the students studying in the bright classroom.
“Why are you whispering?” My friend stared at me, a blue colored pencil poised above her elaborate drawing.
I repeated myself.
“You have pot?” she said. Half the class turned their heads.
“No,” I said. “It’s called postural orthostatic tachycardia syndrome.” Every word required too much tongue to pronounce.
“Oh, why didn’t you just say that?” she said. “It’s okay to be a little pothead, everyone experiments.” She returned to her drawing.
This anecdote is a not-untrue example of the many experiences I’ve had while telling people about POTS, a chronic illness known as postural orthostatic tachycardia syndrome.
POTS is a dysfunction of the autonomic nervous system, the system in your body responsible for controlling things like your heart rate, blood pressure, and breathing patterns. (Feel free to reference the Cleveland Clinic definition to read an official medical description.)
The hallmark symptom of POTS is orthostatic intolerance—standing up is a bigger problem than it should be. When you stand up, your body is supposed to send blood to your heart. If you have POTS, much of this blood stays in your lower extremities. This leads to lightheadedness and fainting for many of the POTS-afflicted. Hence, we are sometimes damsels in distress (and “damsel” is gender-neutral, though the majority of POTS sufferers have so far been documented as young women).
When I was 15, a cardiologist and his team tied me to a flat table and tilted me to a 70-degree angle until I saw black (I had passed the test! I did, indeed, have POTS).
At that age, I could barely walk up a hill without feeling like my heart wanted to eject from my chest. I had terrible brain fog that left me struggling to read books or calculate Geometry equations or memorize historical facts that would need to be extracted from my brain during a timed essay. I wanted to sleep all the time but no amount of sleep solved my constant bodily exhaustion. And I was sad. Deeply, deeply sad.
Here’s a list of all the POTS-related symptoms I’ve experienced:
Chronic fatigue
Brain fog
Tachycardia (fast heart rate)
Hypotension (low blood pressure)
Gastroparesis (delayed stomach emptying)
Dizziness
Occasional fainting
Muscle weakness
Exercise intolerance
Heat intolerance
Cold intolerance (I think there’s a theme here…)
Headaches
Heart palpitations
Dehydrated skin
But as you can tell by my charming wit and fascinating intellect, I am no longer the very sad girl who struggled to run after the school bus she was always late for.
This blog isn’t meant to be a scientific overview of POTS, or even a tale of a “cure-all” method that saved me from a mess of debilitating symptoms. I’m writing this because I wanted to share my experience, including how I’ve learned to manage my symptoms and live a fulfilling, energetic life.
Since I was diagnosed 11 years ago, I’ve tried many different medications and homeopathic, DIY solutions to fix my symptoms:
Salt tablets - for hydration and blood pressure
Midodrine - for blood pressure
Licorice pills - for blood pressure
Adderall - for brain fog and energy
Homemade electrolyte drinks (these tasted like honey-flavored Atlantic Ocean)
Caffeine - for brain fog and energy
Vegan, sugar-free, gluten-free diet (you’ll see that due to item #1 on my list of solutions, this restrictive diet was never going to work)
Compression stockings (these squeeze blood from your legs back to your heart)
In the end, the best solutions for me were simple ones.
My Top Three POTS Solutions
1. Healing My Eating Disorder
So I know I said that this blog isn’t about a magical cure-all solution to POTS. And it’s not. However, recovering from my eating disorder improved so many of my symptoms that it’s hard not to list it at the top of this section.
I won’t go into detail here about how I recovered from my anorexia, an eating disorder characterized by extreme food restriction and an overwhelming fear of weight gain. But reaching a weight that was right for my body (not what society or any external source might suggest) created a cascading healing effect on my POTS.
My weight gain lead to…
Energy - Goodbye, crazy fatigue. I could wake up early, and sleep restored me. Long walks with my mom weren’t punctuated by my need to stop on a bench every ten minutes.
Mental clarity - Brain fog released its chokehold and gave me space to think about things other than calorie counts or how much I wanted to take a nap. I no longer needed to rely on caffeine or Adderall to stimulate my motivation or complete work assignments.
Body temperature regulation - Instead of constantly feeling cold and forcing others to experience the hands of death every time I touched them, my body held onto its heat (not a scientific explanation whatsoever). I’m on the sweatier side now.
Digestive regulation - Look, I really, really didn’t want to talk about this. But I felt compelled to include it because it’s the truth, and if you’re reading this, I know that there’s a packet of MiraLAX somewhere in the back of your dusty bathroom cabinet. So let’s embrace this discomfort (figurative or literal). Anyways, since you can’t put only water and coffee into an engine and expect it to perform, the same goes for your body.
A zest for life - This was the magic I earned from doing something that scared me. With all of the above symptoms eased, I was free to be someone I had never been: me. I didn’t miraculously eliminate all my anxiety or depressive episodes or moments of doubt and fear, but I had given myself real hope.
If this isn’t a problem for you, then it may not be relevant to your POTS symptoms. If you’re reading this, telling yourself that this is not a problem you have, meanwhile a tiny, deep-down voice questions why you always feel hungry and tired and sad, then I feel for you, and maybe it’s time to start listening to that little voice.
2. Drinking 70-120oz of Hydrating Fluids Daily
Yes, mom, you were right; I needed to drink more water.
In the morning, I drink 30 oz. By lunch, I need to have had 50oz, or else I feel fatigue and a sledgehammer headache. By the end of the day, I should have had at least 70oz. If I don’t, I feel it the next day.
If you hate water, I’m so sorry. However, flavoring packets exist, so you no longer have to suffer from water’s terrible nothing taste.
If I’ve been extra sweaty, or feel a dehydration headache, or just want to feel fancy, I add an electrolyte packet to my water. (I like the brands Nuun, Stur, and Salud.) Adding salt to my diet was a suggestion from my cardiologist—he said adequate salt levels would improve my hydration, blood pressure, and energy.
At the moment, I’m not drinking caffeine, so the only other drinks in my regular diet are herbal teas or juices (Bolthouse Farms, I love you).
This is a habit I built up over time, so if you find it difficult, don’t feel bad. I found that the more water I had, the more I craved it. And then the results I felt from drinking water encouraged me to continue.
3. Exercising to Build Muscle
This one sounds crazy when just rising from bed feels like an athletic performance.
I began with riding a recumbent bike, graduated to walking and bodyweight exercises, and have now been practicing weightlifting. Regular exercise has improved my energy levels, headaches, insomnia, digestion, anxiety, and even my confidence. There’s a satisfaction and pride that arises when you challenge your body to do more than it has been capable of doing previously. Endorphins will always enhance your mood, too.
If you’re unable to walk or if standing frequently leads to fainting, I can see how this might seem impossible. However, any sort of movement helps. Riding a stationary bike or swimming might be more feasible for you (and that’s okay). Dysautonomia International has a ton of information on potential exercises for every level of fitness.
My cardiologist emphasized building leg muscle; the muscle would, in theory, encourage my legs to push more blood back to my heart during upright activities. I haven’t read enough studies to ascertain the science behind this, but my anecdotal experience has proven this to be true for my body—the stronger my legs, the less weak and light-headed I feel during upright movement.
I want to emphasize that I exercise to build strength and muscle, not to lose weight. Please consider whether or not you exercise from a place of shame and self-hatred, rather than a place of love and self-growth. I used to exercise according to the former two; shame and self-hatred only contributed to my POTS symptoms as well as my eating disorder. I exercise in a way that brings me joy. Otherwise, it wouldn’t be sustainable.
My Current Reality: A Giddy Lady
Am I completely cured of any and all POTS-related symptoms? Nope. Do I still sometimes feel faint while walking above senior-citizen speed? Yep. Do I still feel like I’ve been hit by a brick-heavy hangover when I wake up in the morning after failing to drink enough fluids the day prior? Oh, yes. Do I still feel—and act—like a cranky baby when it’s super hot outside? Mhmm. (Sorry, family and friends.)
But when I stay true to the things I listed above, I really do feel as normal as possible. And my “normal” means having energy, excitement, and inspiration to do the things I love. I’m the picture of health—the overall picture is not perfect, but it is beautiful.
*You can find a list of helpful websites and articles about POTS on my Resources page.
