Chronic illnesses are rarely simple, and postural orthostatic tachycardia syndrome (or POTS) is no exception. In this post we’re going to talk about the condition, some POTS symptoms, different POTS treatments, conditions that sometimes go along with POTS, and more. This A-Z guide is helpful for POTS patients as well as for people trying to understand the condition that their loved one has.
I am not a medical professional of any kind. This post contains affiliate links. Thank you for supporting Kate the (Almost) Great™️!
Postural Orthostatic Tachycardia Syndrome (Or POTS) A-Z
While this is named “A-Z,” I’m not going to get every single thing related to POTS in this post. I’ve done my best, but there are so many things to cover: medications, symptoms, bodily processes … you get it. I’ve done my best as a patient and lay person (aka I don’t have a medical degree), and I’ve linked all of my sources as best I can. While that’s true for every post I create, it’s especially important to point it out here because, if you need more information, I want to be able to provide you the resources to find it.
Autonomic Nervous System
This is the part of the body that is done automatically, such as breathing, swallowing, and moving blood. The Cleveland Clinic says, “Your autonomic nervous system is a network of nerves throughout your body that control unconscious processes. These are things that happen without you thinking about them, such as breathing and your heart beating. Your autonomic nervous system is always active, even when you’re asleep, and it’s key to your continued survival” (x).
Is Fibromyalgia an Autoimmune Disease? What You Should Know
Beta Blockers
Beta blockers are a type of medication that are sometimes prescribed to POTS patients. “Beta blockers cause the heart to beat more slowly and with less force,” the Mayo Clinic says (x). As a key symptom of POTS is a high heart rate, it makes sense that they are often prescribed.
Some beta blockers are Acebutolol, Atenolol (Tenormin), Bisoprolol, Metoprolol (Lopressor, Toprol XL), Nadolol, Nebivolol (Bystolic), and Propranolol (Inderal LA, InnoPran XL).
However, like all medications, there are some limitations. Beta blockers that impact the heart and blood vessels are not recommended if you have asthma – which I learned the hard way – and they can block signs of low blood sugar, so they’re also not recommended for people with diabetes. While all medications have side effects, these issues can lead to severe medical events, so make sure your doctor knows your whole medical history before you start taking them.
8 Essential Tips for Living with POTS
Blood Pooling
This is when the blood stays below the heart when you are upright, when instead it is supposed to rise back above the heart (x). This is one of the reasons why POTS patients get lightheaded when they stand up. Johns Hopkins explains that for POTS patients, “the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue” (x).
Chronic Illness Management: 5 Things New Patients Need To Do
Brain Fog
Brain fog refers to “a range of symptoms that cause cognitive impairment” (x). Brain fog makes you feel like, well, your brain is in a fog. It looks like confusion, fatigue, forgetting things, difficulty concentrating, not having the right word, lack of attention, etc. (x).
Since COVID hit, there are a lot of people now getting brain fog, and being annoyed with the phrase. But brain fog is a symptom recognized as cognitive impairment. Just because someone thinks that it is not adequate does not mean it isn’t.
The Connection Between Dysautonomia and Anxiety
Cardiologist
This is one of the specialists you might see if you have POTS. POTS is not a heart condition per se, but it is a nervous system condition impacting the heart. My first POTS doctor was a cardiologist.
COVID Recovery Diaries of an Immunosuppressed Patient
Compression Gear
Something patients have talked about for years – and that has been confirmed by medical studies – is that wearing compression gear can improve POTS symptoms.
A 2021 study found that “The compression garment reduced heart rate […] and improved symptoms” in POTS patients (x). PoTS UK says, “Compression of the lower limbs helps to move blood from the legs and abdominal cavity back into the general circulation, returning more blood to the heart” (x).
So where do you start? I recommend trying compression socks and compression leggings. Here are some options:
Soft Steps Everyday Relief Compression Socks ($17)
ja-vie Cotton Everyday Compression Socks 3-pack ($22)
OALUXX Copper Compression Socks for Men & Women ($17)
FEETS FlowFiber® Compression Socks – Multi-Stripe ($10)
Ranahan Brand RB® Medium Compression Legging ($40)
Inspr Exchange Mens Compression Leggings ($38)
Soft Steps SupportFit Compression Leggings ($26)
DressesMax TriDri Ladies’ Performance Compression Leggings TD304 ($27)
SnapGoShop FORCE ACTIVE men’s compression leggings ($110)
ITEM m6 All Day Conscious Compression Legging ($48)
What Is POTS? A POTS Frequently Asked Questions Post
Dysautonomia
Dysautonomia is when the autonomic nervous system dysfunctions! It’s a category of conditions, of which POTS is one. Aside from POTS, other examples of dysautonomia include orthostatic hypotension, vasovagal syncope, familial dysautonomia, and more (x).
COVID Diaries of an Immunosuppressed Patient
Ehlers–Danlos syndrome
Ehlers-Danlos syndrome (aka EDS) is a genetic condition impacting connective tissues, such as joints and blood vessels (x). The Mayo Clinic says, “People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn’t strong enough to hold them” (x).
EDS, MCAS, and POTS often occur together. It’s not something that has a clear medical cause; it’s something that patients have noticed over time.
What’s Heat Intolerance? An Explanation
Electrolyte
Electrolytes are “help your body regulate chemical reactions, maintain the balance between fluids inside and outside your cells, and more” (x). Common electrolytes are sodium, magnesium, potassium, calcium, chloride, and phosphate.
My favorite electrolyte products are from Cure and Vitassium.
Cure Hydration Electrolyte Drinks:
Vitassium Electrolyte Supplements:
What Is Advocacy? A Patient Advocate’s Guide
Heat Intolerance
There’s little official documentation about POTS and heat intolerance, but many people with POTS experience it. I’ve talked to many patients who do, and my cardiologist agrees. Heat intolerance in this case mainly means symptoms get worse in the heat, aka patients can’t tolerate the heat. Some ways that this might be demonstrated include feeling faint, fainting, excessive sweating, being nauseous, and throwing up.
How Does Postural Orthostatic Tachycardia Syndrome Work?
Holter Monitor
This is a wearable monitor that you might wear for a day or two if you are in the diagnostic process for POTS; I did! It records the heart’s rhythm and is used to spot irregular heartbeats (x).
Often, patients have an EKG (aka ECG), and that does not show enough information, so they wear a Holter monitor. You might need a Holter monitor if you have an irregular heartbeat, unexplained fainting, or an already known heart condition (x).
When I had a Holter monitor, I also had to keep a record of what I did over the day, such as when I was walking, asleep, in class, etc. They matched this to my heart rate to get a better idea of what my heart was doing at certain times.
Hacks for Chronic Disease Management That You Need
Hyperadrenergic POTS
This is a type of POTS “associated with elevated levels of the stress hormone norepinephrine” (x).
POTS Exercise Protocol Diary: Month 5
Hypovolemic POTS
This is a type of POTS associated with “abnormally low levels of blood (hypovolemia)” (x).
Do I Have a Chronic Illness? What You Should Know If You’re a New Patient
Long-COVID
Long-COVID is kind of a lot of things. The most general definition is “the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection (the technical name for the COVID-19 virus), with these symptoms lasting for at least 2 months with no other explanation” (x). The WHO says, “While common symptoms of long COVID can include fatigue, shortness of breath and cognitive dysfunction over 200 different symptoms have been reported that can have an impact on everyday functioning” (x).
Sometimes, Long-COVID patients have POTS or ME/CFS. POTS is often caused or triggered by viruses, and since COVID is a virus, it makes sense that some people develop POTS.
POTS Exercise Protocol Diary: Month 4
MCAS
MCAS stands for Mast Cell Activation Syndrome. Cleveland Clinic says,
“Mast cell activation syndrome (MCAS) is a condition that causes intense episodes of swelling, shortness of breath, hives, diarrhea, vomiting and other symptoms. In severe cases, it may lead to life-threatening anaphylaxis. It’s caused by mast cells (mistakenly) alerting your immune system that there’s something harmful in your body” (Source)
As mentioned earlier, many patients are noted to have POTS, EDS, and MCAS, even though there’s not a clear explanation for why these 3 conditions tend to show up together.
Tips To Make Independently Living with a Chronic Illness Easier
Midodrine
Midodrine is a medication that is sometimes prescribed to POTS patients, as it improves low blood pressure, which is one of the symptoms of POTS (x). The Mayo Clinic says, “It works by stimulating nerve endings in blood vessels, causing the blood vessels to tighten. As a result, blood pressure is increased” (x).
POTS Exercise Protocol Diary: Month 3
Neurologist
This is one of the specialists who treat POTS. As mentioned, POTS is due to a malfunctioning autonomic nervous system. What do neurologists treat? People with malfunctioning nervous systems.
What Is Considered a Chronic Illness? And Other Chronic Illness Basics
Neuropathic POTS
This is a type of POTS “associated with damage to the small fiber nerves (small-fiber neuropathy). These nerves regulate the constriction of the blood vessels in the limbs and abdomen” (x).
POTS Exercise Protocol Diary: Month 2
POTS
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).
6 Tips for How To Accept a Chronic Illness
Pre-syncope
This is a symptom of POTS, as it is feeling like you might pass out without actually passing out. Cleveland Clinic says, “You may feel lightheaded, sick to your stomach or sweaty, among other symptoms” (x).
What Every POTS Syndrome Patient Needs for the Summer
Pyridostigmine
Pyridostigmine is also known as Mestinon. This is a cholinesterase inhibitor medication that is also often prescribed for myasthenia gravis. It “blocks a protein called cholinesterase from breaking down acetylcholine, a chemical in your body that’s important for communication between your nerve cells and muscles” (x).
Vanderbilt University Medical Center (Go Dores) says, “Acetylcholine is used in both the sympathetic and parasympathetic nervous systems, but is more prevalent in the parasympathetic nervous system. Because of this, it was hypothesized that pyridostigmine would increase parasympathetic nervous system activity and therefore decrease heart rate in POTS” (x).
Resources for Chronic Illness: How Organizing Can Make It Easier
Secondary POTS
This is a type of POTS “associated with another condition known to potentially cause autonomic neuropathy, such as diabetes, Lyme disease, or autoimmune disorders such as lupus or Sjögren’s syndrome” (x).
Living Life with Chronic Illness: Common Problems & Their Solutions
Sodium
The Dysautonomia Project says, “Salt is an essential electrolyte that helps with nervous system function and effects [sic] blood pressure” (x).
Basically, POTS patients have blood pressure that is low-to-normal and heart rate that is normal-to-high. Sodium helps with that.
“In 2021, the Journal of American College of Cardiology published a study on the effect of high dietary sodium intake in patients with POTS. It suggests that increasing sodium intake can reduce POTS symptoms including increased heart rate when standing and increasing norepinephrine (pre-adrenaline) levels” (x).
I personally take sodium pills daily in addition to drinking electrolyte products. My preferred sodium pills are these.
POTS Exercise Protocol Diary: Month 1
Syncope
This is the official term for fainting or passing out. Cleveland Clinic says, “This happens when you have a sudden, temporary drop in the amount of blood that flows to your brain” (x).
There are different types of syncope, including but not limited to vasovagal syncope, postural or orthostatic syncope, cardiac syncope, neurologic syncope, and more (x).
Life with Chronic Illness: One Patient’s Life with 6 Illnesses
Tilt-Table Test
This is pretty much exactly like it sounds: 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).
Like this post? Share it! Then check out:
Mental Health and Chronic Disease Management: What You Should Know, 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
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Leave a Reply