Adding To The Alphabet Soup
Zebras come with loooots of acronyms. A very common one that shows up with us stripe-y people is POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. Since that’s quite the mouthful to say, POTS is the accepted shorthand version. Let’s break it down.
Postural – related to the position of your body
Orthostatic – related to standing up
Tachycardia – a heart rate of 100 beats per minute or higher
Syndrome – a group of symptoms that happen together
POTS is a form of Dysautonomia. Dysautonomia is a large umbrella term for a collection of diseases in where the autonomic nervous system does not function properly. The autonomic nervous system is a bit important because that is the part of the nervous system that is controlled automatically (think heart rate, breathing, blood pressure, etc). So looking at the above breakdown POTS basically means that when folks change their position, especially from laying to standing, they experience tachycardia and low blood pressure. Sounds fun, right? POTS is the most common form of Dysautonomia with an estimated 1% of the population being affected in developed countries. By far the most affected group are young Caucasian women typically between the ages of 15-45 years old (80-85%). Just as with hEDS many POTS patients wait years to be diagnosed. The average time for a POTS patient to be diagnosed is nearly six years and within that timeframe nearly 80% will be told “it’s all in their head” at some point. The severity of symptoms with POTS patients varies, but estimates range from 25-50% of POTS patients being so disabled that they cannot work or attend school. The disability seen in POTS has been compared to patients with Chronic Obstructive Pulmonary Disease and Congestive Heart Failure. POTS is no joke folks. (As a side note, many people who contracted the COVID virus have also gone on to develop POTS within 6-8 months post-infection.)
There are a myriad of symptoms that people diagnosed with POTS will experience such as dizziness/lightheadness, fainting/near-fainting, heart palpitations, shortness of breath, headaches, brain fog, extreme fatigue, anxiousness, disrupted sleep, etc. These symptoms will often get worse in hot environments, when one is standing for long periods of time, during exercise, during an illness, and during a woman’s menstrual cycle or pregnancy. POTS can look different for different people just as people with hEDS all have varying symptoms. They are also varying in degrees on different days. Some days someone’s POTS symptoms may not affect them that much, but another day they may have extreme dizziness and brain fog along with palpitations. As mentioned above there are a myriad of things that can affect one’s symptoms. Heat is a big contributor in POTS symptoms, but so is altitude as well as dehydration. Lack of sleep is another big symptom exacerbator as well as illnesses. A tough day will also have a domino effect into the days after it, so it isn’t usually a one and done kind of deal either.
POTS can be diagnosed with an evil, evil test called a tilt table test in which you’re strapped to a table and they tilt you from laying down to vertical and have you repeatedly do a breathing exercise called a Valsalva Maneuver, which if you have POTS, basically makes you pass out. It’s super fun. Alternatively you can also lay down in your doctors office for a few minutes and take your blood pressure and heart rate and then stand up and repeat taking them. If your blood pressure drops and your heart rate jumps over thirty beats per minute as an adult then congratulations, you should look into POTS!
As with hEDS there is no known cure for POTS at this time, there is only management options. The two main ways that POTS is managed is diet and exercise. The best exercises for POTS follow cardiac rehab protocols. Swimming, rowing, and recumbent bicycles are among the best forms of exercising as well as leg and core strengthening via isometrics. Maintaining adequate hydration is also very important for people diagnosed with POTS, and many people are also recommended to increase their salt intake via an electrolyte packet/drink or salt tablets. Many people also find compression socks/leggings (or abdominal binders) to be helpful to push the blood that pools in their legs back up to their heart. There are also several medications that may help, although none have been approved by the FDA for the use of a POTS diagnosis specifically.
All in all POTS is yet another fun disease to add to the alphabet soup zebras tend to have.
