What Is POTS? A POTS Frequently Asked Questions Post

This time of year, my POTS (postural orthostatic tachycardia syndrome) is really acting up, which tends to lead to talking about POTS. Basically, my POTS reacts negatively to warmer weather. This then leads to questions. Some of them are very basic – Hey Kate, what is POTS anyway? – and some are a bit more specific – How does this weird condition work?

I figure that I’m not the only one who has been confused by this condition, so I decided to write a POTS FAQ.

If you have POTS, check out the answers to questions you might have, and then share this post with people who don’t understand it.

If you know someone with POTS, keep reading to learn more about this condition! It means a lot to me when people research my conditions so that I don’t have to be the one explaining everything, and I’m sure the person in your life with POTS feels the same way.

As always, please know that I am not a medical professional. I share definitions and explanations from reputable sources, which are always cited, as well as my personal experiences.

I also include affiliate links in this post. Thank you for supporting Kate the (Almost) Great!

What Is POTS?

Postural orthostatic tachycardia syndrome – or POTS – is a condition when the autonomic nervous system doesn’t work correctly. The National Institute of Health (NIH) explains that the autonomic nervous system “controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature” (x).

About Dysautonomia

Basically, it’s the system that controls things your body does automatically.

Any time that system doesn’t work correctly is called dysautonomia, or dys- autonomia. As the Cleveland Clinic says, “Dysautonomia refers to a disorder of autonomic nervous system (ANS) function that generally involves failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive or overactive ANS actions also can occur” (x).

This means that if you have dysautnomia, your autonomic nervous system either isn’t working well enough or it’s going way overboard, depending on the condition.

The Cleveland Clinic also says, “Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia” [emphasis mine] (x). My understanding from this medical verbiage is that a lot of dysautonomic conditions can involve multiple systems; diabetes, for example, is generally considered to be an endocrine disorder over a dysautonomic one.

I’m not going to pretend that I’m an expert in dysautonomia outside of my own lived experience, which is why I’m quoting from experts, so I can’t explain how those illnesses work beyond POTS.

POTS Specifically

Okay, now that we’ve talked about dysautonomia in general, let’s go back to POTS specifically. The Cleveland Clinic explains that “Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation” (x). This is a unique condition where, if you have a medical background, all of the words in the name explain what the condition is.

Basically, postural orthostatic tachycardia syndrome is when you get orthostatic tachycardia when you go postural.

In POTS, “symptoms […] come on when standing up from a reclining position and relieved by sitting or lying back down” (x). The symptoms are “usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat” (x). Keep reading to learn more about the symptoms down below.

How Does Postural Orthostatic Tachycardia Syndrome Work?

How Is POTS Diagnosed?

The official way to diagnose POTS is through a tilt-table test.

Tilt Table Test for POTS

This is pretty much exactly likes it sounds like: they put you on a table and tilt you. More specifically, they measure your blood pressure and heart rate while they tilt you to see if you have the POTS reactions to being at certain levels (x).

They start with you being flat for several minutes, then they tilt you so you’re at a diagonal for several minutes, and then they put you upright for several minutes (x). If I remember correctly, my test was 10 minutes at each position. If you have POTS, this is an extremely unpleasant experience.

Hopkins Medicine says that you might have POTS if you have these 3 experiences while doing the tilt-table test: your body produces an abnormal heart rate response to being upright, specifically your heart rate increases by over 30 beats per minute; your symptoms get worse when upright; and you don’t develop orthostatic hypotension in the first three minutes of testing (x).

Orthostatic hypotension is “a form of low blood pressure,” and you will only be diagnosed with POTS if you don’t have orthostatic hypotension (x).

Other Tests for POTS

Before ordering a tilt-table test, your doctor might order a whole bunch of other cardiac tests to rule out other reasons for your symptoms. Back in 2017, when I developed POTS, I was hospitalized for several days when I had intense symptoms. Because I have RA, my doctors were concerned that my symptoms might be because I had heart damage (which is possible for RA patients despite being in my twenties). The hospital ran all the cardiac-specific tests they could think of, and they came to the conclusion that I probably had POTS, but they didn’t want to officially diagnose me because they were unfamiliar with it.

As my appointment with my now-cardiologist was scheduled for 4 months after I was referred to her, I started making the lifestyle changes suggested by my friends with POTS because I didn’t want to wait to feel better.

Once I had that appointment with her, she did the unofficial POTS test. I call it “unofficial” because, while it can give accurate results, insurance companies often won’t cover POTS treatments unless the tilt-table test is completed. The unofficial test is basically your doctor measures your blood pressure and heart rate while you lay down, sit up, and then stand up.

Then, she ordered a holter monitor test. This is “a type of portable electrocardiogram (ECG)” that you wear continuously for any number of days (x). You have electrodes put on and it records your heart rate for that time (x). Mine was 2 days total, and I kept a journal of what my activity levels were over the course of those days so we could compare them to the holter monitor results. This included when I was walking the dogs or commuting on the MBTA, as well as when I was sleeping, among other things.

After doing all of these things, my cardiologist ordered the tilt-table test.

What Are the Symptoms of POTS?

Unless you know someone with POTS, you might not be familiar with its symptoms.

Personally, I have a horribly high heart rate in general, and it increases when I go from a sitting to standing positions, while my blood pressure is low-to-normal. I also get nauseated, light headed, fatigue, and very sweaty. Fun!

Johns Hopkins says that POTS symptoms include:

• feeling lightheaded
• fainting
• brain fog
• fatigue
• exercise intolerance
• headache
• blurry vision
• palpitations
• tremors
• nausea

There are also plenty of lovely GI symptoms, such as diarrhea and vomiting.

Overall, it’s a great time.

What Every POTS Syndrome Patient Needs for the Summer

How Is POTS Treated?

Before I go into POTS treatments, I want to give you all a quick reminder that I’m not a doctor and this shouldn’t be considered as medical advice, but instead as information that I am sharing.

Okay. That done, let’s talk treatments.

Medication for POTS

The Cleveland Clinic says that medications such as “fludrocortisone, pyridostigmine, midodrine, and/or a beta blocker” may be prescribed (x).

Fludrocortisone is a corticosteroid that “is used to help control the amount of sodium and fluids in your body” (x). As someone who has been on corticosteroids for years for my RA, I can say from experience that long-term use of corticosteroids is not good for you, so keep that in mind.

Pyridostigmine “is used to decrease muscle weakness” (x). A 2005 study found that “Pyridostigmine significantly decreased the standing heart rate from baseline” in some patients (x).

Midodrine “is in a class of medications called alpha-adrenergic agonists” (x).

I will note that MedlinePlus includes this warning for Midodrine: “This medication should only be used by people whose low blood pressure severely limits their ability to perform daily activities and who could not be treated successfully with other therapies” (x).

Beta blockers refer to a category of medications “that are predominantly used to manage abnormal heart rhythms, and to protect the heart from a second heart attack (myocardial infarction) after a first heart attack (secondary prevention)” (x). The “blocker” part of that name is about what the medication works against.

For POTS, beta blockers “have been reported to be a useful treatment for POTS patients with beta-receptor super-sensitivity, high noradrenaline levels and/or hyper-adrenergic states” (x).

Lifestyle Changes for POTS

There are also several lifestyle changes that can be made to deal with POTS.

POTS patients are supposed to have 3-5 grams of salt a day (compared to 1-3 for non-POTS patients), so I increased my salt intake (x).

We also need to be drinking at least 2 liters of water a day (x). I track how much water I drink in my FitBit app, which also tracks my heart rate as I have a FitBit Inspire HR. This also enables me to see the correlation between the water I’ve drank and my heart rate.

I also wear compression socks! Dysautonomia International says, “Compression support hose and abdominal binders can be helpful for some POTS patients by lessening the peripheral venous pooling and hypotension” (x). I have over-the-knee compression socks that I wear, especially on hot days, and they have the benefit of helping swelling in my joints, too. My favorite compression socks are these SUGIFT compression socks, of which I have 2 pairs ($7.50).

Learn more about POTS and heat intolerance in a previous post.

Does Exercise Re-training Work?

Because exercise (and existing in general) can be very difficult for POTS patients, some patients try exercise protocols, which is basically trying to retrain your body to react correctly to exertion.

John Hopkins says, “The goal is to retrain the autonomic nervous system to allow for more exercise, which then helps increase the blood volume” (x).

But does it work?

I have no clue.

I was working on an exercise protocol when the pandemic started in 2020 and gyms closed. I never reached the point where it would have started to work, which is incredibly disappointing.

Plenty of people have tried it, and it has worked for enough people that it’s suggested. But I don’t know for certain if it works.

I hope this post has helped you in some way. I’ve tried to answer all the POTS-specific questions I can think of, but if you have more or if you have advice from your own POTS experience, please feel free to comment below. I’ll try to answer any more questions that pop up!

Like this post? Share it! Then read:

So Someone Healthy Has Given You Health Advice, What Is a Chronic Illness? And Other Frequently Asked Questions, Self-Care Tips That Chronic Illness Patients Need, Living Life with Chronic Illness: Common Problems & Their Solutions