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What is POTS?
- Kate Sweeney
- 20 minutes ago
- 5 min read
by Kate Sweeney
If you have POTS, it is likely you feel the best when you’re laying down unless your POTS is managed well.
My number one question for clients with GI distress, dizziness, fatigue and other symptoms detailed below is ‘Do these symptoms subside if you lay down?’ If the answer is yes, it may be important to consider POTS.
In this newsletter, I define POTS, discuss its prevalence and symptoms and how POTS is treated along with how it co-occurs with other disorders like eating disorders.
What is POTS?
POTS stands for postural orthostatic tachycardia syndrome.
POTS was first termed in 1982 in a case study by Rosen and Cryer. In 2011, the first consensus document was released describing diagnostic criteria.
Since 2011, there have been a number of discoveries about POTS, but much still remains unknown.
We know that POTS is a form of dysautonomia- a disorder of the autonomic nervous system.
This is the branch of the nervous system that regulates functions like heart rate, blood pressure, sweating and body temperature.
Normally, when someone stands up, the blood that needs to reach the brain gets there by an activated nervous system. For instance, heart rate increases slightly and hormones are released to tighten blood vessels so the blood can flow towards the brain.
When someone has POTS, they experience an increase in heart rate that is sustained and higher than normal.
This can be due to lower amounts of blood in circulation, excessive pooling of blood below the heart when standing and/or elevated levels of hormones like epinephrine or norepinephrine.
The body is working overtime to get blood to the brain.
It is not clear why people develop POTS.
Autoimmune conditions, a viral/bacterial infection, surgery, puberty, pregnancy, genetic predisposition, environmental factors, COVID and more are potential triggers.
POTS affects more women than men, with estimates of a 5:1 ratio. Women are affected between puberty and into early adulthood.
The prevalence of POTS is estimated to be 0.2-1.0% among the US population. In Germany, a source puts prevalence at 0.2% before COVID.
POTS is likely underreported in minority populations, so it is unclear if these numbers are accurate and if Caucasians really do have higher prevalence rates than other demographics.
How is POTS diagnosed?
POTS is diagnosed when:
Heart rate increases 30 or more beats per minute (or 40 or more beats per minute if client is 12-19 years old) within 10 minutes of standing upright
There is no significant drop in blood pressure upon standing
Symptoms are frequent and worse when standing
Symptoms last longer than 3 months
No other conditions explain the high heart rate
Tests for POTS include the tilt-table test. Home tests like the NASA 10 Minute Lean Test and the MALMO POTS Symptom Survey can also be instructive.
It is recommended to always speak with your doctor about these tests.
What are the symptoms of POTS?
Symptoms of POTS occur from the body working hard to get the brain blood.
Symptoms can be debilitating. They also vary between people.
Symptoms occur because the longer someone is upright, the more the blood pools in the lower body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness, brain fog and fatigue.
As the nervous system releases hormones to constrict blood vessels, the heart rate increases further. This may cause shakiness, skipped heartbeats, and chest pain.
Symptoms include:
Severe and/or long lasting fatigue
Dizziness upon standing
Shakiness
Brain fog: trouble focusing, with memory
Exercise intolerance
Migraines
Headaches
Nausea, vomiting
Excessive sweating
Bloating
Constipation
Diarrhea
POTS symptoms can get worse in hot environments, when standing for a long period of time, when not enough water or sodium has been consumed or during a cold or infection. In severe cases, POTS symptoms can prevent a person from being upright for more than a couple of minutes.
The Link between POTS and Eating Disorders
To date, there is only one paper on the connection between POTS and eating disorders, published in 2021 by Benjamin et al.
The researchers studied 96 adolescents diagnosed with POTS and participating in a 3-week intensive interdisciplinary pain program. Almost 75% of participants reported engaging in dietaryrestriction to try to manage their POTS symptoms and more than half lost weight.
Eating disorders were reported at a higher rate than the general population (10.4% vs 2.7%).
Since inadequate eating in any body size can contribute to a weaker heart muscle, it can be unclear if someone has POTS or their heart is not strong enough from eating enough.
People who are undernourished in any body size can have high heart rate upon standing, dizziness, fatigue and other symptoms of POTS. They don’t necessarily have POTS and it is important to get a comprehensive exam and be followed by a medical team.
My experience in working with clients with POTS and eating disorders has been that some clients really struggle with a common cycle:
Their POTS symptoms make it hard to eat —> Triggers more eating disorder thoughts and behaviors —> worsening POTS symptoms…
Since 90% of people with POTS have GI symptoms, POTS can also trigger an eating disorder if one changes the diet to manage the GI symptoms and this sends them on a slippery slope.
That is why it is important to work on your eating disorder and POTS simultaneously. This can help better manage the POTS so that the symptoms are not leading to more ED behaviors.
POTS and Co-occurring Disorders
There has been particular attention in the last few years to the intersection between POTS and hypermobility, like hypermobile Ehlos-Danlos Syndrome and Mast Cell Activation Syndrome (MCAS). I will not go into detail on each diagnosis, but keep an eye out for deeper dives in future newsletters.
The important point is that the three diagnoses share symptoms, especially gastrointestinal symptoms.
There are correlations between the diagnoses and studies show a large amount of overlap. In a large population of 37,665 patients diagnosed with MCAS, hEDS, or both, almost 1 in 3 patients with MCAS had a comorbid diagnosis of hEDS.
The challenge is that the research is still in its infancy, and the diagnostic criteria for these conditions are still being developed. Further, the mechanisms of action of the diseases is not clear. So, why the overlap? We are not yet sure.
What is the treatment for POTS?
POTS treatments are aimed at mitigating symptoms.
Hydration & Electrolytes:
Since people with POTS have lower blood volume, they need more hydration and sodium than an average person
Drinking plenty of water (2+ L per day)
Getting a sodium recommendation from your doctor and/or dietitian. This may be up to 10 grams of sodium per day, starting at 5 grams (combination of food and supplements) and starting even before getting out of bed.
Including potassium and sugar in the electrolyte solution for more hydration
Avoiding/minimizing caffeine and alcohol
Nutrition Interventions
Eat adequate meals and snacks
Correct any micronutrient deficiencies
Smaller, more frequent meals may help brain fog and GI distress due to pulling in less blood to the stomach after a meal
Reintroduce feared foods as much as possible
Manage GI symptoms through bowel regimens, supplements, medications
Working with a dietitian 1:1 to individualize what works for you!!
Lifestyle & Medication Management
Using compression stockings
Identifying energy draining activities and spreading them out over the day/week
Elevate the head of the bed
Self paced, recumbent exercise
Medications like propranolol and modafonil - all are currently off label
Closing Thoughts
POTS is a serious, often overlooked medical condition that can greatly impact someone’s quality if life.
POTS can certainly occur with eating disorders and/or other diagnoses. If you suspect POTS or have POTS, it is important to talk with your medical providers about not just your physical health, but also mental health.
The good news is that there are ways to manage POTS, and one can feel better.
With hope,
Kate
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