POTS INFORMATION SHEET WRITTEN BY MEDICALLYCOMPLEXAWARENESS202
· What Is Postural Orthostatic Tachycardia Syndrome (POTS)?Postural orthostatic tachycardia syndrome (POTS) is a disorder that can make someone feel faint or dizzy. It happens when the autonomic nervous system doesn't work as it should. The autonomic nervous system is the body's "autopilot" system, controlling things like heart rate, blood pressure, and breathing.
The autonomic nervous system problems seen in POTS — also called postural tachycardia (ta-kih-KAR-dee-uh) syndrome — can affect children and adults. Symptoms vary from mild to disabling.
What does POTS stand for?
Postural: related to the position of your body
Orthostatic: related to standing upright
Tachycardia: increased heart rate
Syndrome: a group of symptoms
What Happens in POTS?
· The autonomic nervous system keeps blood pressure at the right level for the brain no matter what position a person is in — standing (vertical), lying flat on the back (called supine), and sitting or reclining (called recumbent).
· Usually when a person stands, the nerves of the autonomic nervous system tell blood vessels in the lower body to constrict (tighten). The tightening vessels work against gravity to keep blood from collecting in the legs. This automatic response makes sure the brain has enough blood flow to work well. If there is not enough blood flow to the brain, a person may feel lightheaded or pass out every time they stand.
· In POTS, the autonomic nervous system doesn't work in the usual way, so the blood vessels don't tighten enough to make sure there is enough blood flow to the brain. To try to keep enough blood flowing to the brain, the autonomic nervous system makes the heart beat a lot faster instead.
Why does heart rate increase excessively with POTS?
In most patients with POTS, the structure of the heart itself is normal. POTS symptoms arise from a combination of the following:
Lower amount of blood in the circulation
Excessive pooling of blood below the level of the heart when upright
Elevated levels of certain hormones such as epinephrine (also known as adrenaline since it is released by the adrenal glands) and norepinephrine (mainly released by nerves)
When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that enough blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, 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 light-headedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain
Some people with POTS can develop hypotension (a drop in blood pressure) with prolonged standing (more than three minutes upright). Others can develop an Increase in blood pressure (Hypertension) when they stand.
Types and Causes of POTS:
The causes of POTS vary from person to person. Researchers don’t entirely understand the origins of this disorder. The classification of POTS is the subject of discussion, but most authorities recognize different characteristics in POTS, which occur in some patients more than others. Importantly, these characteristics are not mutually exclusive; person with POTS may experience more than of these at the same time:
Neuropathic POTS is a term used to describe POTS associated with damage to the small fibre nerves (small-fibber neuropathy). These nerves regulate the constriction of the blood vessels in the limbs and abdomen.
Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.
Hypovolemic POTS is a term used to describe POTS associated with abnormally low levels of blood (hypovolemia).
Secondary POTS means that POTS is associated with another condition known to potentially cause autonomic neuropathy, such as diabetes, Lyme Disease, or autoimmune disorders such as Lupus or Sjogren’s Syndrome.
What Are the Signs & Symptoms of Postural Orthostatic Tachycardia Syndrome (POTS)?
POTS is named for an unusual jump in the heart's beating speed that happens when a person stands. Other symptoms that can happen with POTS include:
Severe and/or long-lasting fatigue
Light-headedness with prolonged sitting or standing that can lead to fainting.
Brain fog: trouble focusing, remembering, or paying attention.
Forceful heartbeats or heart palpitations (a feeling of the heart pounding or skipping a beat)
Nausea and vomiting
Headaches
Excessive sweating
Shakiness
Intolerance of exercise or a prolonged worsening of general symptoms after increased activity.
A pale face and purple discoloration of the hands and feet if the limbs are lower than the level of the heart.
POTS symptoms typically get worse:
In warm environments, such as a hot bath or shower, a hot room or on a hot day
In situations involving a lot of standing, such as waiting for a bus or when shopping.
If fluid and salt intake have not been adequate, such as after skipping a meal.
Most POTS symptoms happen only when standing or changing to a standing position. But these may happen without standing:
headache
sweating without a cause (such as exercise or warm weather)
trouble concentrating
trouble sleeping or unable to sleep (insomnia)
weakness
POTS symptoms may also get worse when you get a common cold or an infection. In severe cases, POTS symptoms can prevent a person from being upright for more than a couple of minutes. This can greatly affect all aspects of personal, school, work, and social life.
Although the origin of POTS symptoms is physical, sometimes people attribute the symptoms incorrectly to psychological disorders such as anxiety. While some people with POTS have anxiety disorders like the general population, POTS is not caused by anxiety.
Teens with these disorders often have POTS too:
Ehlers-Danlos syndrome
Fibromyalgia
Chronic Fatigue Syndrome
Inflammatory Bowel Disease
Irritable Bowel Syndrome
insomnia
Headaches
How Is POTS Diagnosed?
There's no single test to diagnose POTS. Doctors start by doing a complete physical exam and taking a Medical History
· In kids and teens, POTS causes a heart rate increase of 30 or more beats per minute within 10 minutes of when they move from a supine (lying down) position to a standing one. The heart rate goes up dramatically, with little if any drop in blood pressure. Doctors can measure this easily.
Sometimes, doctors do a "tilt table test." In this test, a person is strapped to a table, then tilted from a supine (lying on the back) position into a standing position while heart rate and blood pressure are monitored.
Doctors also make sure the problem isn't due to anything besides the autonomic nervous system. Depending on the symptoms, tests might be done on other parts of the body. These might check the blood, heart, brain, eyes, ears, kidneys, muscles, nerves, hormones, digestive tract, and more. Typically, a diagnosis of POTS is confirmed when symptoms have lasted for several months, and no other causes are found.
If someone has POTS, the medical team will look for reasons that the autonomic nervous system doesn't respond normally to standing. Finding an answer can help treatments work well
Tilt Table Test for POTS:
During the tilt table test, you are secured on a table while lying flat. Then the table is raised to an almost upright position. Your heart rate, blood pressure and often blood oxygen and exhaled carbon dioxide levels are measured during this test.
You might have POTS if you meet all three of these criteria:
Your body produces an abnormal heart rate response to being upright.
Your symptoms worsen when upright.
You don’t develop orthostatic hypotension in the first three minutes of testing.
Other POTS Tests:
In some cases, other tests are warranted. They may include:
Valsalva maneuver to test the response of the autonomic nerves that control the heart.
Quantitative sudomotor axon reflex test (QSART) to measure response of the autonomic nerves responsible for regulating sweating.
Although less common, your physician may also schedule an MRI and other imaging tests to rule out tumours or other abnormalities.
How Is POTS Treated?
POTS is a chronic (long-term) problem. So, doctors try to prevent and manage the things that cause it.
Helpful treatments include:
more water and salt intake
better and longer sleep.
a slow increase in exercise, starting with seated, reclined, or horizontal exercises (such as rowing, recumbent bicycling, and swimming)
wearing compression (squeezing) stockings
raising the head of the bed so some pressure stays in the blood vessels in the legs during sleep.
psychological counselling to help manage stress and choices that trigger symptoms.
sometimes, prescription medicines
The autonomic nervous system is involved in many body functions, so managing all the symptoms related to it can be hard. Sometimes, patients try a few different treatments to find what works well without unpleasant side effects. Multiple doctor's visits may be needed to find the best combination of treatments that improve symptoms
Postural Orthostatic Tachycardia Syndrome Diet:
The foundation of treating POTS is to drink fluids frequently throughout the day. For most POTS patients, the goal is at least 64-80 ounces (about 2-2.5 litres) a day. You would also need to increase your intake of salty foods and add more salt to your diet with a saltshaker or salt tablets. These dietary modifications help keep water in the bloodstream, which helps more blood reach the heart and the brain.
Certain foods or drinks can have an adverse effect on POTS symptoms in some patients. For example, alcohol almost always aggravates POTS. It diverts blood away from the central circulation to the skin and increases loss of fluids through urine. Caffeine can make some people more nervous and lightheaded, but for some it can help improve constriction of blood vessels. Your regular physician or POTS specialist can help you determine how your diet and certain medications could be helping or hindering your treatment.
Exercise for Postural Orthostatic Tachycardia Syndrome:
Physical Therapy can make a difference in some Pots Patients. Because sometimes POTS symptoms can worsen with exercise, physical therapy has to start slowly, and advance based on your tolerance rather than a rigid plan. As your blood circulation improves with medications and diet, the exercise intensity may be gradually increased. The goal is to retrain the autonomic nervous system to allow for more exercise, which then helps increase the blood volume
Those who can’t stand upright may start exercising in a horizontal or reclined position. Aquatic therapy may work for some POTS patients due to the water creating pressure around the body. Many experts find that manual physical therapy that addresses issues with nerve tightness and range of motion works as a bridge to build better tolerance of exercise.
POTS Medications:
While no single medication is effective for everyone with POTS, most people with frequent symptoms affecting their quality of life need some form of medication. The search for the right medication or combination of medications requires patience and persistence on the part of both physicians and patients. These medications may focus on:
Improving blood volume
Helping the kidneys retain sodium (e.g., fludrocortisone)
Reducing heart rate or blocking the effect of adrenal hormones on the heart (e.g., beta blockers)
Improving blood vessel constriction (e.g., midodrine)
Can postural orthostatic tachycardia syndrome be fatal:
While POTS can be life-changing, it is not life-threatening. One of the biggest risks for people with POTS is falls due to fainting. Not everyone who has POTS faints. And, for those who do, it may be a rare event. But, if you don’t know that you have POTS, you may not take precautions against trauma from falls.
POTS Risk Factors:
POTS affects between 1 in 100 Women in Australia. although men may also develop POTS. POTS is less common in young children, but it affects adolescents, and symptoms often develop during puberty. POTS may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events.
POTS can run in families, but no single gene associated with most cases of POTS has been identified. A mutation in the norepinephrine transporter gene appears to affect only a tiny portion of POTS patients. Among genetic factors, there is a strong association between POTS and various joint hypermobility disorders, including Ehlers-Danlos syndrome. Recent research has also highlighted an overlap between POTS, joint hypermobility, and mast cell disorders, some of which have a genetic origin.
POTS and Pregnancy: Since POTS affects women of childbearing age, a common question is whether having POTS will affect the outcome of the pregnancy. In some studies, slightly more than half of pregnant women with POTS felt better than usual during their pregnancies, which might be due to the increase in blood volume that is present after the first few weeks of pregnancy. Others had a more variable course, with either stable POTS symptoms or an increase in POTS symptoms. Other complications of pregnancy appear to occur at about the same rate for women with POTS, and their newborns seem to be as healthy as infants born to mothers without POTS
Similar Conditions:
Many conditions share the same symptoms as POTS. POTS can complicate any other chronic health condition, from asthma to inflammatory bowel disease. The vast majority of adolescents and young adults with myalgic encephalomyelitis/ chronic fatigue syndrome have POTS or related forms of orthostatic intolerance. The intensity of the fatigue, exercise intolerance and other symptoms are greater in those with ME/CFS and POTS than in those with POTS alone.
Another condition similar to POTS is inappropriate sinus tachycardia, in which the resting heart rate is usually above 100 beats per minute. Fibromyalgia patients, those with gastrointestinal motility disorders (such as irritable bowel syndrome), excessive sweating (hyperhidrosis) and many other conditions can also develop POTS.
Does postural orthostatic tachycardia syndrome go away?
POTS symptoms may spontaneously lessen or disappear for a long time. They may come back just as unexpectedly. The absence of symptoms doesn’t necessarily mean that the cause of POTS is gone as well.
Who treats postural orthostatic tachycardia syndrome?
In many cases, your primary care physician is qualified to treat POTS.
For complex POTS cases, it is often helpful to have input from a neurologist or cardiologist experienced in this condition. Rehabilitation physicians can help as well in developing an exercise plan that works for you.
Things you can do if you have postural tachycardia syndrome (PoTS):
If you have postural tachycardia syndrome (PoTS), there are things you can try to help ease your symptoms:
If you suddenly feel faint or dizzy, you can try lying down and raising your legs until you feel better.
If you cannot lie down, you can try:
crossing your legs with 1 in front of the other while standing
rocking up and down on your toes
clenching your buttocks and tummy muscles
clenching your fists
Making changes to your lifestyle may also help with PotS
Do’s
try to avoid the things that trigger your symptoms.
drink plenty of fluids until your pee is pale.
try gentle exercise, such as walking, jogging, Pilates, and swimming.
raise the head of your bed so you're not lying completely flat.
wear support tights to improve blood flow.
Don’t’s
do not stand up for too long.
do not get up too quickly after lying down – sit for a while before standing up.
do not drink too much caffeine or alcohol.
WRITTEN BY:
AUSTRALIAN POTS WARRIOR
SARAH C
JULY 2023
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