So, what is POTS?
POTS (Postural Orthostatic Tachycardia Syndrome) is difficult to explain. This makes it difficult to raise awareness, difficult to learn about your diagnosis of POTS, and even more difficult to explain to friends and family. My hope is my site will explain POTS thoroughly in an easy-to-understand way.
The basics of Postural Orthostatic Tachycardia Syndrome or POTS:
- POTS is not rare. It is under diagnosed. When I first was diagnosed, I was under the impression it is a rare disease.
- The hallmark symptom of POTS is an increase in heart rate from the supine (lying) to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.
- With POTS a change from lying down to sitting up is not tolerated by the body — the body does not adjust to the pull of gravity like a normal person’s body should.
- The one common symptom across everyone with POTS is postural tachycardia (rapid heart rate). There are loads of possible characterizations, such as hypotension, hypertension, hyperadrenergic state with upright posture, but all POTS patients experience the jump in heart rate when going from supine to standing.
- There is a spectrum of severity. Some cases of POTS do not interfere at all with the person’s ability to live a normal life. Other people are disabled, to the point of being bed bound, by POTS.
- Many people with POTS not only look healthy, they may come off as healthy to other people. People cannot see what is going on inside the person’s body and how awful it is. This is why POTS is what is known as an “invisible illness”. Please never say “You don’t look sick” or “You’re looking good, you must be feeling better” to someone with an invisible illness. It is incredibly frustrating for us even if your intentions were good.
- POTS is a type of dysautonomnia (malfunction of autonomic nervous system). This system controls so many functions of your body which is why so many symptoms are associated with POTS— learn more about this by clicking “symptoms” on the webpage menu.
My characterizations relevant to the example I’d like to give are: I have Ehlers-Danlos Syndrome Type 3 which allows blood pooling, hyperadrenergic state with upright posture, resting tachycardia, and orthostatic hypotension.
Here is what the experience of standing up would be like if you had my case of POTS…
- You would stand up.
- Gravity would rapidly pull blood down your legs where it pools. Your body cannot adjust to the pull of gravity (Note: In a “normal” person, the blood would remain around the abdomen, allowing the person to go about their business without even thinking about what their blood is up to.)
- With blood pooling at your feet, they begin to turn red, then purple. Blood pooling is seen in many POTS patients without EDS, but due to stretchy veins, it is extremely common in EDS POTS patients. This tends to be painful and feel like you have on really heavy boots and something is pressing out from the inside. Your body, including your brain is only getting about 80% as much oxygen as it should be.
- Within as little as 30 seconds, your heart begins to race two or three times as fast as what is considered normal. The heart is trying to get blood/oxygen to your brain. With POTS, a heart rate upwards of 120 is not abnormal.
- This, combined with your plummeting blood pressure from orthostatic hypotension, will make you feel dizzy and you may faint or come very close to fainting. Even if you didn’t have hypotension, you would still feel dizzy and possibly faint from the tachycardia alone. If you fainted, this might be the end of the story.
- You don’t always faint. It depends on individual circumstances and the severity of the syndrome. You may only get very dizzy, lightheaded, fatigued, and continue to experience heart rates most people only experience during intense exercise.
- The feeling resulting from the hyperadrenergic state (norepinephrine surge) your body experiences when standing feels like the adrenaline rush you get when you are startled and has the same symptoms. For example, you’re likely to be quite shaky.
- As a result of this happening every time you go from lying flat, to sitting up, to standing, you develop many uncomfortable symptoms. Not all symptoms come from blood pooling and poor circulation. A large amount of symptoms are a result of your autonomic nervous system not working correctly (read more on that below)
- Ironically, despite being tired and enduring many other symptoms all day, you likely will experience insomnia from the norepinephrine surges!
- You’re not done yet. POTS doesn’t only impact you when you sit or stand up. Anything that involves blood flow changing/adjusting will cause symptoms just like when you stand up. Examples include eating a large meal, being in the heat, or even the mildest exercise
- You begin to meticulously plan your life around POTS each and every day because you have no other choice. Without the assistance of amphetamines and extreme amounts of caffeine, you typically will have less than an hour of “good” time each day. You must use it wisely. If you overdid it the previous day, you will probably do nothing except lay flat all day. Too many episodes of fainting or near fainting (pre-syncope) accumulate, making it easier and easier to faint the more you are upright. If you “overdo” it, you will not only faint, you will likely vomit alternating with fainting until you need to go the hospital for IV hydration and nausea medications.
- You cannot easily do anything spur of the moment. If something pops up, you likely will be too sick (physically unable/mentally drained) to handle it the way you’d like to. You’ll worry about over-indulging yourself with how much you allow yourself upright at holidays, or spending time outdoors in the summer, because you don’t want to become extremely symptomatic for the following weeks.
To learn more about what I mean when I say “symptomatic”, click on the symptoms link at the menu on the top.