As defined by the National Institute of Neurological Disorders and Stroke, “Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position.”
Postural – related to the position of the body
Orthostatic – related to standing upright
Tachycardia – a heart rate over 100 bpm
Syndrome – a group of symptoms happening together
It is estimated that 3,000,000 to 6,000,000 Americans have POTS, a number that has doubled since the start of the COVID-19 pandemic. This number is just an estimate as many people who have POTS don’t even know they have POTS or are stuck in the long delay in diagnosis that almost all potsies get stuck in. The average delay in diagnosis is between 4 and 6 years. POTS used to be considered a rare condition, but it is no longer rare.
POTS is not contagious, but about 40% of potsies have at least one family member with POTS or some other similar form of dysautonomia, suggesting there might be a genetic component.
POTS can range from mild to severe. While some postie’s symptoms are mild enough that there is little to no affect on their everyday life, about 25% of potsies are so disabled that they cannot work or attend school.
The majority of potsies (around 80%-90%) are assigned female at birth aged 15 – 50, but any age, gender, or race can have POTS. Since there is such a higher volume of women with POTS, it is significantly harder for males to get a diagnosis and receive treatment. POTS isn’t curable but in a study by the Mayo Clinic, male patients were twice as likely to report recovery in the following years after treatment. Mayo Clinic also concluded that POTS impacts 1 in 100 teenagers and around 50% of potsies developed symptoms in adulthood.
The most common symptoms of POTS are lightheadedness, fainting, and brain fog.
Other symptoms include:
* fast or slow heart rate
* nausea/ vomiting
* brain fog
* blood pressure issues
* gastrointestinal issues
* dry or watery eyes
* dizziness
* mood swings
* swings in body temp
* vision problems
* trouble swallowing
* sexual dysfunction
* wide or pinpoint pupils
* fatigue
* migraines
* shortness of breath
* chest pain
Symptoms often get worse while being in warm environments, standing frequently, participating in strenuous exercise, being sick, and during menstruation. Everyone’s symptom flare-up triggers are different, but some common ones are:
*weather / temperature changes
*different forms of exercise
*inadequate pacing or resting
*poor sleep quality
*dehydration
*inadequate nutrition
*menstrual changes
*pregnancy / postpartum
*illnesses / surgery / infection
*stressful situations or events
*emotional distress / trauma
*different forms of traveling
Treatment is mostly targeted towards relieving low blood volume or regulating circulatory problems that may cause the disorder. Technically, the FDA has not approved any drugs to treat POTS, but some medications that help in the short term are fludrocortisone (increases salt and water retention), midodrine (causes vasoconstriction), beta-blockers (slows down heart rate), pyridostigmine (increases acetylcholine on the autonomic ganglia), desmopressin (increases intravascular volume), and lisdexamfetamine aka vyvanse (a central nervous system stimulant that can help with fatigue and cognitive impairment). Other ways to treat POTS symptoms are increasing salt intake to 8,000 mg to 10,000 mg per day; increasing water intake to 2-3 liters per day; wearing compression socks or other compression garments; raising the head of the bed or sleeping on an incline pillow; gentle reclined exercise like rowing, recumbent bicycling and swimming; eating smaller, more frequent, healthy meals and salty snacks.
The current diagnostic criteria includes a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. For children, 40 bpms as a standard has been adopted. A tilt table test is the defining test for diagnosing POTS. A tilt table test involves the doctors strapping you to a table and hooking heart rate and blood pressure monitors on you. They take your vitals as they bring you from laying, to a 45-degree angle, to a fully upright position. If you pass out before the time limit is up, you almost definitely have POTS. A similar test can be conducted called the Active Stand Test where the doctors take bedside measurements of heart rate and blood pressure taken in the laying down, sitting down, and standing up position at 2, 5 and 10 minute intervals. It is not as accurate as a tilt table test, as it misses many cases of POTS. Some other tests that doctors order during the diagnostic process include Heart Echocardiograms, Heart Monitors, Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.
Everyone’s POTS journey looks very different from other potsies. Many people will never know that they have POTS while others were able to get diagnosed at a very young age. Many of these misdiagnoses are contributed to the lack of awareness around POTS in the public and among medical professionals. While POTS is becoming more well known in the past couple years, there is still a long way to go with advocacy efforts. Advocacy and awareness is so important so that more potsies can get diagnosed and the help they need and we can get funding for more research and treatments.
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Also check out my latest blogs “How to best communicate support to your loved one with POTS” and “What a day looks like as someone who has POTS”
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