Welcome to POTS University, written by a doctor who is a POTS patient, for other POTS patients, and people who are part of their support system. In an attempt to make a very complicated disorder simple for those who don't understand what POTS is:
Unfortunately, modern day healthcare frequently functions more like a dictatorship where doctors tell patients what to do, than an allied partnership where they work together as a team. In an effort to keep healthcare costs down, doctors are expected to see more patients in less time. That leaves less and less time for doctors to listen to patients' symptoms, and for them to explain why it's important for patients to follow their instructions.
POTS is a dysautonomia condition that is full of fluctuations. It's important for patients to understand how their body is responding in real time so they can make decisions about what to do accordingly. If you're ready to do the more complex work of understanding POTS, we first have to understand a little bit about blood. Blood in many ways is the driving life force of the human body. It has a few different jobs:
It circulates hormones, immune cells, oxygen, and nutrients to the tissues that need them.
It helps waste products like CO2 and lactic acid to be removed from our tissues and carries them away to be processed by our organs to be sent out of the body.
It helps regulate temperature.
To get blood where we need it to go, our heart and the blood pressure in our blood vessels need to work together. When our system if functioning "normally", our blood pressure is high enough that blood moves through efficiently, but not so high that our heart has to work extra hard to pump against the resistance. Our heart is able to pump blood with an appropriately strong contraction or beat, and the rate at which our heart is pumping isn't too fast or too slow.
Most medical textbooks would tell you that normal blood pressure is 120/80mmHg, and a normal resting heart rate is 60-80 beats per minute if someone is sitting at rest in a chair. It is also normal that your heart rate and blood pressure change depending on the activities that you do. For example, if you stand up from the chair, your blood pressure will elevate slightly to make it easier for your heart to pump blood up to your head against the resistance of gravity. If you then decide to go for a jog, your heart rate and blood pressure should increase to accommodate the increased demand for oxygen to your muscles.
For a POTS patient however, the relationship of heart rate and blood pressure is sometimes not so smooth. Like the name implies, the autonomic nervous system is supposed to work automatically. When it doesn't, we call it dysautonomia. We then have to take a step back to understand it's purpose and function if we want to have a chance at redirecting it.
POTS is complicated because a few different variables can be out of sync, and the standard "normal" blood pressure, may not be normal for your body. Many POTS patients have had BP that for years has been 100/70 at their regular doctors appointments even before developing POTS. Some people have naturally lower resting heart rates then others. Aerobic athletes may have hearts that are more efficient, so they can get the same result with a heart rate of 50 that another person gets with a heart rate of 80. While medical textbooks like to establish normative data, it is important to realize that many people are not "normal". This is why individualized care is so important for POTS patients, and doctors need more time to work with them and observe how their body responds to activity changes in order to learn their normal. That is why physical therapists are an integral part of a POTS care team. They often see their patients for visits that are 45 minutes or longer, and they are experts in movement. POTS is difficult to appropriately test for and treat if you only sit in a chair for a 10-minute appointment with the doctor.
For now, in the interest simplicity, let's use normal as a baseline for a few scenarios. Let's assume a POTS patient stands up, and then each of these 4 things happens:
Heart Rate (beats per minute)
Blood Pressure (mmHg)
dizziness, fatigue, syncope
may be compensated, may be dizzy/fatigued or have headaches
compensated, may be dizzy/fatigued, chest pain
headaches, chest discomfort
Sometimes, if our blood pressure is low, our heart rate goes up to ensure that we still get blood flow where we need it. That's why some POTS patients' bodies will adjust (compensate) accordingly and respond with a fast heart rate when they stand up from a chair. Their body may not have increased its blood pressure to accommodate the added resistance of gravity pulling the blood down. If your brain recognizes it isn't getting enough blood, it panics and tells you heart to beat faster in hopes of restoring adequate blood flow to the brain. This can be uncomfortable though for POTS patients. As your heart races, it can feel similar to an anxiety attack. While you may not be emotionally upset about anything, your body is physiologically anxious because it feels like the blood supply to your brain is threatened. (See Pain, POTS & "Panic Attacks")
If your body is able to adjust enough with an increase in your heart rate to get blood to your brain, you might not feel dizzy, but you may still have chest pain/discomfort from how hard your heart is working. After all, your heart is being asked to work pretty hard, and your body may not be getting the blood back to your heart very efficiently for it to get the nutrients it needs to do its job. The magic number for what your heart rate and blood pressure need to be to get blood where it needs to go can vary widely based on the activity you're doing, as well as from person to person.
That is why cookie cutter medicine doesn't work well for people with POTS. While there are a lot of variables that can affect these changes, the important things to understand are:
Heart Rate and Blood Pressure work together to get blood to our tissues efficiently.
What is "normal" for one person, may not be normal for another.
We need to be aware of what our heart rate and blood pressure are doing, so that we can start to decide how to help our bodies adjust.
If you want more information on how to adjust for different activities, check out our POTS Pro Tips series. We'll help explain for each activity how to help modify it to make it easier, and why the modification helps so that you can apply it to other tasks that are hard for you throughout your day.
Disclaimers: This article is intended for educational purposes and is not intended to serve as or replace individual medical advice from a healthcare provider. If you are seeking personalized medical advice, please contact our office to schedule an appointment with a licensed medical provider.