What I Wish I Knew at the Beginning of My POTS Journey
Hi folks! In lieu of Dysautonomia Awareness Month, I wanted to write a little more about what Postural Orthostatic Tachycardia Syndrome (POTS) is, my personal experience, what works for me, and affirmations for this month!
What is Postural Orthostatic Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is a condition that causes symptoms when you transition from lying down to standing up. This can include a fast heart rate, dizziness, chest pain, and fatigue. There is no cure for POTS but several treatments and lifestyle changes can help manage the daily symptoms.
Normally, your body’s autonomic nervous system balances your heart rate and blood pressure to keep your blood flowing at a healthy pace, no matter what position your body is in. If you have POTS, your body can’t coordinate the simultaneous act of blood vessel constriction (squeezing) and heart rate response. This means that your body can’t keep your blood pressure steady and stable. This causes a variety of symptoms, which can include:
Dizziness and lightheadedness
Fatigue
Brain fog (difficulty concentrating or remembering things)
Fainting or near fainting
Chest pain
Nausea (or vomiting)
Shakiness
Excessive sweating
Difficulties regulating temperature, heat and cold intolerance
Bloating
Diarrhea and other GI issues
Feeling nervous or on edge
Disrupted sleep and insomnia (especially due to symptoms)
Headaches
Shortness of breath
Pale face and discoloration of hands or feet (often purple or blue-ish)
A little about my POTS journey
I currently live with Long Covid and have secondary POTS as a result of this chronic illness. I had chronic migraines starting as a young child and was put on Propranolol to manage my daily headaches. Coincidentally, this beta-blocker is also commonly used for managing POTS. I suspect that since I was already taking Propranolol daily when I got COVID, it began helping with my POTS due to Long Covid and I probably didn’t even notice.
I have frequently been dismissed by doctors, nurses, other medical professionals and up until this year, I was giving up on getting a diagnosis. I have seen Emergency Care providers who dismiss my POTS as panic attacks or anxiety. I have often been told that if I just drink more water, rest more, or lose weight, my symptoms will go away. I have even had quite a few Cardiologists tell me that nothing was wrong and I just needed to see a therapist!
I often plan my days around my symptoms and flare ups. I don’t usually shower in the morning because my POTS symptoms are worse when I first wake up. I often do not go out in the middle of the day or have to cancel plans, depending on the weather. I usually avoid activities in the sun, buildings with lots of stairs, or bus stops without benches. It’s so incredibly frustrating to have to interact with a world that is not set up for chronically ill and disabled folks.
I used to play sports in high school and as a child and was very active. Basketball, volleyball, swimming, biking, kayaking, hiking, and rock climbing– just to name a few. That all changed when I contracted COVID in 2020 and developed Long Covid (and POTS and MCAS as a result). It has been extremely hard and I often grieve for the body I once had.
I was misdiagnosed with Fibromyalgia for several years, which was more recently recognized as hEDS (hypermobile Ehler’s Danlos Syndrome) and there is a pretty large overlap between EDS and POTS. I also live with MCAS (Mast Cell Activation Syndrome) as a result of Long Covid. Most of the time, at least one chronic illness is flaring up. They all interact with each other and often when one gets better, another gets worse. I feel very fortunate to have found such a thorough and caring Primary Care Provider who finally diagnosed me with POTS and hEDS a few months ago. She referred me to a wonderful Cardiologist who was finally able to confirm that I do in fact have POTS. I know, shocker.
It is traumatizing to consistently be dismissed and told I am exaggerating my symptoms. It is extremely enraging, unfair, and unprofessional. I am often told that I am just too young to be dealing with chronic illness. As if my age automatically makes me unable to be disabled.
Below are some affirmations/ reminders that have been helpful for me in these situations and are good reminders for Dysautonomia Awareness Month.
Reminders for Dysautonomia Awareness Month
You do not know who has Dysautonomia just by looking at them.
Some people often think that you can tell who is disabled or chronically ill by looking at them but this is in fact an ableist sentiment. Dysautonomia is an invisible disability!
Dysautonomia does not just mean my heart rate is a little fast.
People sometimes assume that POTS or dysautonomia is just getting a little dizzy or having a fast heart rate. It can come with a plethora of symptoms and often affect every organ in the body.
You can still have Dysautonomia and not be diagnosed.
Many of us are not diagnosed due to lack of health insurance, discrimination and biases, medical racism, fatphobia, queer phobia, and ageism. And folks can go their whole lives without receiving a diagnosis.
Dysautonomia affects all people of all genders, races, sizes, and ages.
Despite the majority of diagnosed folks seeming to be white and cis women, POTS and dysautonomia can affect every race, sex, gender, size, age, belief, background, religion, socioeconomic class, etc.
Dysautonomia is not just anxiety or all in your head.
Some healthcare providers and other folks seem to associate POTS with anxiety or mental health conditions. Maybe because it is an invisible disability, but either way– it simply is inaccurate and ableist!
Dysautonomic folks are worthy of support and accommodation.
YES!! Yours and your loved ones’ needs with dysautonomia matter just as much as anyone else!
Things that can help
Unfortunately, there’s no cure for POTS. Instead, healthcare providers use several strategies to manage the symptoms of POTS. Treatment is highly individualized based on your symptoms and what works best for you.
Below is a list of things that I do to manage my POTS symptoms (remember each person is different!):
Compression Garments
Medical compression socks (I wear mine everyday, all the time)
Compression gloves and sleeves
Abdominal binder (helps push blood flow out of a larger area than compression socks/ sleeves)
Sleep, rest, and pacing
Sitting up slowly and waiting several minutes before standing after lying down (dangling my feet off the edge of the bed helps!)
Raising the head of my bed about 10-inches (helps with the transition after lying down)
Making sure I get enough sleep
Following a consistent sleep schedule
Structured rest
Pacing myself when doing things that require lots of walking etc.
Slowly increasing exercise and physical therapy exercises (swimming is especially helpful)
Limiting long periods of standing
Monitoring pulse and blood pressure (I wear a smart watch and use a blood pressure cuff, as well as a pulse oximeter)
Dietary changes
Increasing hydration (I carry a water bottle everywhere)
Increasing salt intake (I carry salt packets with me, especially for hot days)
Making sure to eat enough (especially breakfast). Spikes in blood sugar don’t help!
Gluten-free or anti-inflammatory diet (I follow a low-histamine diet)
Avoiding alcohol
Medications
Beta-blockers (may reduce upright tachycardia)
Nausea (and motion sickness) medication
Heat and cold intolerance
Cool showers
Using a shower stool
Facing my chest away from the shower head (especially with warm/ hot showers)
Avoiding heat and hot weather as much as possible
Remember that each individual with dysautonomia and POTS is unique and a lot of symptom management is trial and error.
Thank you so much for reading! I hope this was informative and helpful. Feel free to contact me if you would like to book a peer support consultation or are interested in learning more about my chef and nutrition services :)
You can also find me on Instagram and Substack for more disability justice content, chronic illness stories, dietary restriction friendly recipes and more!
Sources include:
Postural Orthostatic Tachycardia Syndrome by Cleveland Clinic, 2022
Postural Orthostatic Tachycardia Syndrome by John Hopkins Medicine
