POTS… not the fun kind
Postural (position of body) Orthostatic (standing upright) Tachycardia (heart rate over 100bpm) Syndrome (a group of symptoms)- POTS - A brief overview of what to expect if you or someone you love has been diagnosed. (Over a spoon of pink salt with a staticky overlay)
Postural orthostatic tachycardia syndrome is a condition that causes a variety of symptoms when you go from laying down to standing. Examples are:
Fast heart rate/ racing heart/ palpitations
Fatigue and exhaustion
Dizziness, especially when standing up or during prolonged periods of being upright.
Fainting or near fainting. (syncope/presyncope)
Forgetfulness and trouble focusing
Feeling nervous and anxious
Shakiness
Excessive sweating
Chest pain
Nauseas / feeling sick
Shortness of breath
Headaches
Blood pooling in your hands and feet when below your heart (pale face and purple discoloration of extremities)
Difficulty sleeping from chest pain, excessive sweating, and fast heart rate
Unfortunately there is no cure, the path forward is full of lifestyle changes and symptom management treatments.
POTS is a type of dysautonomia in which your body’s autonomic nervous system is misfunctioning and no longer balancing your heart rate and blood pressure like it’s supposed to. You’re body struggles to coordinate the blood vessel constriction and heart rate response leading to an unstable blood pressure. This leads to a variety of symptoms that vary by person and tend to be inconsistent.
About 1 to 3 million people in the US have been diagnosed. Most of these are women aged 15 to 50 however POTS can effect anyone of any age. Certain stressors have been found to make you at a higher risk for developing POTS. These can include but are not limited to:
Pregnanacy
Physical trauma, such as a head injury
Surgery - (Mine showed up after I had surgery to repair my broken ankle.)
Significant illnesses, especially viral ones like mononucleosis or other serious infections.
While POTS isn’t life threatening it can be extremely debilitating and the adjustment period is full of trial and error to find what works for you. Be gentle with yourself and use caution when attempting these situations for the first time as then tend to increase symptoms in many people.
Showering or bathing in hot water
Being outside on a hot day
Standing frequently or for long periods of time
Strenuous exercise - for some of us showering counts as this too.
Having your period
Being sick
There are different kinds of POTS such as Neuropathic POTS, Hyperadrenergic POTS, and Hypovolemic POTS which all have different effects on your body. If you suspect you or someone you love may be experiencing these symptoms you should talk with your health care provider right away. They have a number of tests available to help figure it out!
Tilt Table Test
QSART
Autonomic breathing test
Skin nerve biopsy
and Blood and urine tests for causes or to find conditions that mimic POTS
My personal advice and experience:
Compression Socks are worth it! Mukluk brand at walmart has been my personal favorite.
FIND YOUR SALT - There are sooooo many electrolyte products on the market now with a variety of different ratios. Everyone’s body and diet is different so if you try a product and it doesn’t help, don’t give up! I starter with Bouy drops and they were great but I still wasn’t drinking enough WATER. Then I tried LMNT packets and they worked even better for me so I stuck with those for months, even after reading an article about a specific ratio of Salt, Potassium, ad Magnesium that worked well for POTS specifically. I cannot find this article to reference for you or remember the exact ration, but I do know that the brand SALTT was very close. I kept them in my shopping cart for months happy with my other packets. Then I started to get bored of the one flavor I liked so I gave the Blue Raspberry SALTT packets a try and my whole life changed. Activities that had my heart rate at 145 before I could now do with it barely hitting 100. I could function while sitting down with my heart rate staying “at rest” when before any slight movement would have it rising dramatically.
TRACK YOUR HEART RATE - If you can afford it, having a way to pay attention to your heart rate can be eye opening and game changer to figuring out how to live life now. This can be a smartwatch or something that’s solely meant for that purpose. I personally use the Visible Band and it has helped me to SEE the effects of my actions on my body, as well as show those who may doubt me that I’m not exaggerating. Doctors don’t always listen to the data, but I’ve heard stories that some do! Even if they won’t though, this gives you the ability to see what parts of your life are draining you exponentially so you can then make adjustments to ease the struggle. (Example: Showering used to cost me 7 pace points (think spoon theory and I have 25 spoons to use a day) minimum, by using a shower stool and installing a detachable showerhead so I can wash my hair while not standing or drowning I am now able to do it in under 2 points!
Every day comes with unexpected symptoms and struggles so finding community that understands what you go through is incredibly important, I highly recommend finding a group or three on your chosen social media platform or checking for any local support groups. Even if you don’t interact it helps you feel less alone to see other people are going through the same things you are. Especially if those in your immediate support system may be struggling to comprehend everything.
If your doctor dismisses you, doesn’t listen, minimizes the effects on your life, or anything else to make you feel small… FIND A NEW ONE! It’s exhausting and so draining, financially, physically, and emotionally I know. But we can’t give up on ourselves, we need to demand the care we all deserve and keep going until we find it.