POTS is an abbreviation for Postural Orthostatic Tachycardia Syndrome.

It’s a type of dysautonomia, which is a group of neurological disorders that involve the autonomic division of the nervous system.

In essence, the name refers to the heart rate increase a person with POTS experiences when they move from lying down to sitting or standing.

To make sense of POTS, it’s important to have a general understanding of the nervous system. The nervous system is divided into two primary parts – the central nervous system (the brain and the spinal cord) and the peripheral nervous system (the nerves in the rest of the body).

Within the peripheral nervous system contains the somatic nervous system, responsible for voluntary muscle movement; and the autonomic nervous system, responsible for involuntary things like heart rate, blood pressure, digestion, breathing, and our fight or flight response.

When a healthy person moves from lying down to sitting or standing, gravity automatically pulls some of the blood in the body down toward the abdomen and the extremities (hands, feet, arms, legs). To return proper blood flow to the heart and brain, the autonomic nervous system signals the blood vessels in the abdomen and extremities to constrict, so the blood flow returns to the vital organs.

When a person has POTS, their autonomic nervous system is malfunctioning.

This means that person’s blood vessels don’t get the message to constrict when they sit up or stand, so their blood pools in their abdomen and extremities.

To compensate and attempt to restore blood flow to the heart and brain, their heart will beat very quickly.

This occurs simply from standing, but the tachycardia (fast heart rate) will only worsen if the person attempts any form of aerobic exercise.

The tachycardia will continue until they lie down and gravity can restore blood flow to their vital organs.

Often, even an overworking heart can’t bring the blood flow to the vital organs in enough supply, so a person with POTS experiences lightheadedness and fatigue from standing. 30% of people with POTS actually faint if they stand for too long.

What causes POTS?

Essentially, POTS is the result of a specific type of nervous system damage.

This nervous system damage can take on a few different forms.

1. Neuropathic POTS – Loss of nerve supply in your peripheral nervous system, especially in the extremities and abdomen, leads to weak blood vessels that can’t efficiently push blood to your heart and brain when you sit or stand.
2. Hypovolemic POTS – Low blood volume makes it difficult for your blood vessels to get enough blood supply to the heart and brain when you sit or stand.
3. Hyperadrenergic POTS – The autonomic nervous system is divided into two smaller parts – the sympathetic nervous system (fight or flight) and the parasympathetic nervous system (rest and digest). Hyperadrenergic POTS either involves an overactive fight or flight nervous system that releases adrenaline at random, inappropriate times; or a faulty release of adrenaline alongside the heart rate increase in response to the blood pooling in the abdomen and extremities when a person with POTS sits or stands.

There is no one cause of POTS, however, because a wide variety of factors can trigger this type of nervous system damage. As a result, POTS is a common comorbidity of other chronic illnesses.

Some people with the genetic condition Ehlers Danlos Syndrome (a connective tissue disorder) also have POTS, because EDS affects a person’s blood vessels, among many other bodily tissues. Both these conditions occur frequently alongside Mast Cell Activation Syndrome. Sometimes the three are together called “the trifecta”.

Other people get POTS for the first time during or after a pregnancy.

Sometimes autoimmune diseases trigger the development of POTS.

Very often viral or bacterial infections, especially Mono (Epstein Barr Virus), CMV, HHV6, influenza, COVID-19, and Lyme Disease and coinfections induce POTS in individuals who weren’t affected prior.

What makes POTS worse?

Several factors can cause an uptick in POTS symptoms, so avoiding these when possible will make life easier for a person with POTS.

• Hot weather and hot water (such as showers or washing the dishes) relax the blood vessels, making it more difficult for the heart to beat fast enough to get an appropriate blood flow to the heart and brain. You can mitigate this by remaining in air conditioning during the summer, taking tepid showers, and placing an ice pack on your chest or stomach when you have to be outdoors in the heat.
• Standing for long periods of time increases the amount of time the heart has to overwork in order to keep an adequate blood supply to the heart and brain. This increases the chance a person with POTS will experience orthostatic symptoms and possibly faint.
• Strenuous exercise makes it more difficult for the heart to get enough blood to the heart and brain, so the heart rate often increases to a dangerous level when a person with POTS attempts strenuous exercise. You can avoid this by staying away from any form of intense exercise. Including brisk walking, hiking, dancing, jogging, running, hot yoga, sports, high intensity interval training (HIIT) or anything similar, and the treadmill and elliptical machines at the gym.
• Getting sick with a virus. The only way to mitigate this factor is to avoid being exposed to viral infections, but sometimes you get sick anyway and there’s nothing you can do. When you do get sick, it’s likely your infection will cause a POTS flare up.

The Elephant in the Room

I won’t sugarcoat what I’m about to say. The large majority of cardiologists and neurologists who see patients with POTS symptoms treat them like they are psychiatric cases in the Victorian Era, and it’s appalling.

If you have many of the symptoms below and a positive “Poor Man’s Tilt Table Test” after screening yourself and decide to see a doctor about it – tread carefully. For your own safety, *refuse* to see any variety of doctor that doesn’t specialize in POTS or dysautonomia disorders.

If your primary care physician refers you to an old school cardiologist who brushes off your symptoms and positive screening for POTS as “anxiety” or “normal” or “hypochondria” – run as fast as you can and find a more knowledgable doctor.

Three weeks after my first COVID-19 infection, I began to experience POTS symptoms for the first time in my life (you can read more here). I didn’t know what was wrong, but I couldn’t be on my feet for more than a few minutes without feeling severely lightheaded and fatigued – like I would pass out if I didn’t lie back down. It took hours of being in bed for the symptoms to begin letting up, every time I stood up. My heart rate would spike to 140 just from attempting to walk into the kitchen. I felt short of breath most of the time, and I had chest pain as well. I hadn’t experienced adrenaline surges yet, but they came on with a vengeance a couple of weeks later.

Unsure what else to do, I went to the ER. After my third ER visit, I had an abnormal EKG – so abnormal the attending physician thought I might have a heart attack at any moment. They admitted me to the hospital for further testing. When the heart ultrasound and heart damage blood tests returned normal, a family member suggested I ask to be tested for POTS. The nurse begrudgingly performed the test, and lo and behold, I was distinctly positive for POTS. Later on, when the attending cardiologist stopped by, he told me I didn’t look sick enough to be in the hospital and that my symptoms were probably due to anxiety and would go away on their own. That if I stood up slowly and drank enough water, I would feel fine.

The treatment I experienced while in the hospital is, sadly, very normal. If something similar happens to you, know that you don’t deserve to be treated that way. Never be afraid to advocate for yourself. You know your body best and deserve to be seen by a physician who will take you seriously and treat you to the best of their ability, so you can get a semblance of your quality of life back.

What are the symptoms of POTS?

Because the autonomic nervous system controls quite a few of the body’s functions, a malfunctioning autonomic nervous system in POTS means the condition can cause a wide range of debilitating symptoms.

Orthostatic Symptoms (symptoms that occur when sitting or standing, but are often relieved after a period of lying down)

• Tachycardia (fast heart rate)
• Lightheadedness
• Dizziness
• Pre-syncope (feeling like you’re about to faint)
• Syncope (actually fainting) 30% of people with POTS
• Chest pain/tightness
• Shortness of breath
• Excessive sweating
• Reddish/purplish discoloration of your hands and feet

Systemic Symptoms (symptoms that occur intermittently or all the time regardless of the position of the body)

• Nausea
• Bloating
• IBS (irritable bowel syndrome)
• Fatigue/exhaustion
• Headaches
• Body aches
• Shoulder and neck pain (sometimes called “coat hanger pain”)
• Adrenaline surges
  These occur when a malfunctioning autonomic nervous system glitches and dumps adrenaline into the body for no reason. They feel like panic attacks, but without the fear aspect. Sometimes only one will happen at a time and recovery is possible within a couple of hours. Other times, they happen in waves for hours. Mine have lasted anywhere from 2 hours to 4 days straight with no relief, but I also have Autoimmune Encephalitis/PANS, so mine can be quite a bit longer lasting than is normal for POTS. It feels a bit like you haven’t slept in three days but also drank 10 cups of espresso. Or, like you drank a Red Bull and took 2 Benadryl tablets afterward. Symptoms you get during an adrenaline surge can include a fight or flight sensation, racing heart, shortness of breath, inability to relax or get sleepy even if you’re exhausted, chills, sweats, nausea, frequent need to urinate or defecate, throbbing headache, pins and needles, sensitive and itchy skin, and burning pain throughout your body.
• Pins and needles
• Tremors
• Trouble swallowing
• Muscle twitches
• Insomnia (either due to discomfort from symptoms or adrenaline surges)

Did you know you can test yourself for POTS?

If you have a suspicious number of the symptoms listed above, it’s easy to test yourself for POTS at home. All you need is a blood pressure monitor that also measures heart rate.

1. Lie flat on the floor for approximately five minutes, and then take your blood pressure/heart rate. Take a photo of the results.
2. Stand up, and then take your blood pressure/heart rate again. Take a photo of the results. Repeat this process after standing for 5 minutes, and again after standing for 10 minutes.
3. If your standing heart rate at any point increases 30 BPM or more above the BPM when you were lying down, you have POTS. With POTS, your blood pressure should not drop very much from lying down to standing, and with hyperadrenergic POTS, it’s actually common for blood pressure to rise upon standing due to adrenaline.
4. If instead you notice your blood pressure drops significantly from lying down to standing and there isn’t a large different in your heart rate from lying down to standing, you might have Orthostatic Hypotension, a different type of dysautonomia.

AN IMPORTANT NOTE: When you see a doctor to get tested for POTS, the above test – called a “Sit Stand Test” or “Poor Man’s Tilt Table Test” – or a tilt table test in its place is the ONLY test they need to determine if you have POTS. Of course, in addition to your medical history and symptoms.

Your doctor might also order an EKG, holter monitor, stress test, and blood tests for heart damage, but the only point of these tests is to rule out other conditions caused by heart damage before committing to a POTS diagnosis.

Treatment Options

Thankfully, several treatment options for POTS can help improve orthostatic tolerance and nervous system function so a person with POTS doesn’t have to remain bedbound for the rest of their life.

1. Lifestyle Modifications

One of the first recommended lifestyle changes for a person with POTS is to increase their salt intake to somewhere between 3000-10,000 mg per day, along with plenty of fluids. Although this goes against the salt intake guidelines for blood pressure, the benefit of increased salt intake outweighs the risk of high blood pressure for people with POTS. The reason why is increased sodium helps with fluid retention and increases blood volume, making it easier for the heart to get proper blood flow to the heart and brain.

Eating draws a lot of blood flow to the abdomen, so it can increase POTS symptoms as it draws blood flow away from the heart and brain. To mitigate this, a lot of POTS patients feel better if they eat smaller meals more frequently, rather than only 2-3 large meals per day that take a lot of work for the body to digest. As with anyone, nutritionally balanced meals with a source of protein, fat, and complex carbohydrates are best for people with POTS.

Compression garments like stomach binders, knee high socks, and thigh high stockings help take some of the workload from poorly-functioning blood vessels by manually pushing the blood from the feet, legs, and stomach to the heart and brain.

A person with POTS can make their life a lot easier if they switch as many standing tasks as possible to a seated position. Think,

• Sitting in a chair while showering and using tepid water instead of hot water
• Sitting while you sort and fold the laundry instead of continually bending over and standing back up
• Using a stool to prepare dinner or wash the dishes instead of standing on your feet the whole time

Taking short breaks throughout the day where you lie down flat and give your body a break helps keep symptoms at bay, so you can get through a workday more easily.

If at all possible, switching to a work-from-home or sedentary desk job with a flexible schedule can help keep a person with POTS employed so they aren’t forced to apply for disability (which takes several appeals to get approved no matter how severe the disability and provides nowhere near the income a person needs to survive).

Sometimes, a person with POTS will need a mobility aid like a wheelchair if they have to go somewhere or do something that would require them to be on their feet for a very long period of time. If this is you, please don’t feel like you’re taking advantage of the system by needing mobility assistance to avoid orthostatic symptoms or fainting.

2. Medication

Sometimes a person with POTS has such a dramatic heart rate increase upon standing – in spite of lifestyle measures and physical therapy – that they need medication to lower their heart rate so they can function. While there is no standard or FDA-approved medical treatment for POTS, Midodrine and beta-blockers like Propranolol are among the most common medications doctors prescribe for POTS.

Another scenario where a POTS patient might need medication is when they have the hyperadrenergic version of POTS and/or experience uncontrollable adrenaline surges. These patients often do well on medications that block adrenaline in some way, shape, or form – like Clonidine or Clonazepam.

I have an arsenal of alternative and complementary therapies I use to help control my adrenaline and strengthen my parasympathetic nervous system. Functional neurology, EMDR and Somatic therapy, acupuncture, neurofeedback, craniosacral massage, vagal maneuvers, breathwork and progressive relaxation, herbal sedatives, CBD oil, and Liposomal GABA are my tried and true favorites. However, there are still times where nothing I try can control my adrenaline and I need to take medication. If this is you, please don’t feel like you’re a failure or there’s something wrong with you for not being able to control your POTS symptoms 100% naturally.

3. The Levine and Chops Protocols

The exercise dilemma is such a vicious cycle with POTS.

If a person with POTS tries any form of vigorous exercise, they will get worse. Even a small amount of time standing or engaging in gentle movement can cause a symptom spike if a person’s POTS is not controlled.

If they don’t exercise at all and spend the majority of the time sedentary, however, deconditioning weakens their heart, decreases blood volume, weakens their voluntary muscles, and makes their heart even more sensitive to exercise when it is attempted.

What’s a person with POTS to do, then?

Exercise, but VERY carefully and only engage in specific types of exercise designed for people with POTS.

The Chops Protocol is a physical therapy program designed to help people with POTS who can’t exercise at all without becoming severely symptomatic. Ideally, POTS patients following the Chops Protocol gradually regain some orthostatic tolerance and ability to exercise. The Levine Protocol is similar, but more targeted toward people with POTS who are bedbound and need 1-2 months to regain the ability to get out of bed before starting the Chops protocol.

If you’re uncertain about your ability to try an exercise protocol for POTS without making yourself sick, please don’t hesitate to find an exercise physiologist, physical therapist, or cardiac rehabilitation specialist who is knowledgable about POTS to work with.

Once you have some orthostatic tolerance back from lifestyle measures, medication, physical therapy, and/or functional neurology (below), the following types of exercise tend to work well for people with POTS:

• Aquatic therapy
• Swimming
• Recumbent cycling
• Pilates
• Resistance training (with weights or bands) done in a seated or supine position
• Gentle walking

4. Functional Neurology

Functional neurology is a very new treatment option for POTS.

Old school thinking (especially pre-1960s) about the brain dictated that one was born with all the neurons they would ever have. Consequently, once brain damage occurred for any reason, the brain could not make new neurons to help itself recover.

Newer research has demonstrated that this is not necessarily true.

A growing body of evidence seems to indicate that even into adulthood, the brain can grow new neurons in a process called neurogenesis.

This is a windfall discovery for the treatment of neurodegenerative diseases and conditions caused by damage to the nervous system – like POTS.

Practitioners of functional neurology adhere to the theory of neuroplasticity, the brain’s ability to modify its structure and function throughout the life cycle, such as creating new neurons and neural pathways in response to different experiences and stimuli.

Functional neurologists treat their patients with an individually curated set of rehabilitation exercises and brain stimuli to reverse the harmful nervous system activity causing a person’s symptoms and subsequently trigger the development of new and healthy neurons and neural pathways.

After completing their doctoral degree and licensure (as an MD, DO, NP, PA-C, ND, or DC), aspiring functional neurologists earn their board certification through the American College of Functional Neurology or the American Chiropractic Neurology Board.

If you would like to find a functional neurologist, you can search the following directories:

• ACFN network (American College of Functional Neurology)
• ACNB network (American Chiropractic Neurology Board)

Not all functional neurology practices specialize in POTS and other forms of dysautonomia, so when you’re searching be sure to look out for the practices that do.

I worked with a functional neurologist for POTS treatment, and the difference it made in my orthostatic tolerance and symptoms is astounding.

My standing heart rate generally stays in the 90s now, my frequency of adrenaline surges has dramatically reduced, and I can take slow to moderate walks and do resistance exercise while seated or lying down. Prior to beginning functional neurology, I was close to bedbound with symptoms.

When I started treatment in fall 2021, I went in for a 45-minute rehabilitation session twice per week. I completed five months of treatment from October 2021 through February 2022, and another five months from June through October 2022. Since November 2022, I only need to go in once a month for a maintenance visit.

I still experience flare ups and sometimes even a relapse of symptoms when I push myself too hard physically or when I get sick (especially summer 2022 when I was sick almost 24/7), but with my newfound functionality after competing neurological rehabilitation, I always bounce back.

When you have POTS, I know sometimes it feels like you can’t keep fighting for your life anymore because it’s such a debilitating condition to live with.

Even though I have lost hope myself many times, I want to encourage you that there is hope.

When you take a functional medicine approach to POTS treatment, it is possible to make healing progress and regain a quality of life you never thought you would experience again.

It won’t be easy, and it definitely won’t be linear, but it IS possible.

With compassion,

Hannah Mayhorn

Resources and additional reading on POTS: Cleveland Clinic, Dysautonomia International, Standing Up To POTS, PoTS UK

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