Living With an Incurable Disease

What is Postural Orthostatic Tachycardia Syndrome (POTS);

Postural Orthostatic Tachycardia Syndrome (POTS) is a disorder in which most of your blood stays in your lower body when you stand up, and in response, your heart rate jumps.

Your blood usually flows at a steady rate whether you're sitting, standing, lying down, or hanging upside-down from a tree branch in the backyard. But if that rate changes when you change positions, that's a condition called orthostatic intolerance. It's the most common symptom of POTS. It can make you feel dizzy, lightheaded, or faint.

POTS makes your heart beat faster to try to get blood to your brain. Your heart rate can go up by 30 beats or more a minute after you stand. As that happens, your blood pressure is likely to drop.

Postural; Related to the position of your body.
Orthostatic; Related to standing upright.
Tachycardia; A heart rate over 100 beats per minute.
Syndrome; A group of symptoms that happen together.

The prevalence of POTS is around 0.2% in the general population. Most people get better, but some people have symptoms that come and go over a number of years. About 25% of people with POTS have symptoms that make it difficult to work.

What are the symptoms of POTS;

Dizziness or fainting
Blurry vision
Nausea
Vomiting
Belly pain
Bloating
Diarrhea or constipation
Severe sweating
Brain fog
Extreme fatigue
Higher or lower blood pressure
Faster or slower heartbeat
Palpitations, a feeling that your heart is pounding or fluttering
Chest pain
Feeling hot or cold
Feeling anxious, nervous, or jittery
Shaking or tremors
Headaches, body aches, or neck pain
Insomnia
Unusual color in hands and feet. Your face will be pale, and your hands and feet will be purple if they are lower than your heart

Types of POTS;

POTS can happen for different reasons. You could have more than one kind. Some of the most common are;

Neuropathic POTS. You have damage to small fiber nerves that manage blood flow in your limbs and abdomen.
Hyperadrenergic POTS. You have higher levels of the stress hormone norepinephrine.
Hypovolemic POTS. You have unusually low blood levels.

If your POTS symptoms are the result of another condition you have, such as an autoimmune disorder, that's sometimes called secondary POTS.

POTS Risk Factors;

People assigned female at birth aged between 15 and 50 years are more likely to have POTS. It can run in families, but researchers haven't identified a single gene that might be linked to the condition.

Several diseases and conditions seem to make you more likely to have POTS. These include;

Anemia (when you don't have enough red blood cells)
Autoimmune diseases,like Sjogren's syndrome or Lupus
Chronic Fatigue Syndrome
Diabetes and Pre-Diabetes
Ehlers-Danlos, a muscle and joint condition
Illnesses like Mononucleosis, Lyme disease, or Hepatitis C
Multiple Sclerosis
Click-murmur syndrome (also called Mitral Valve Prolapse)
Epstein Barr virus
SARS-CoV2, the virus that causes COVID

It can also happen after a serious infection, pregnancy, or a head injury. Other triggers include the onset of puberty, major surgery, viral illness, or bodily trauma.

If you have POTS, your doctor might think an anxiety or panic disorder is a factor. But some symptoms of anxiety and panic overlap with POTS symptoms. Researchers are still investigating what role anxiety plays.

POTS Diagnosis;

With such different symptoms, POTS can be hard to diagnose.

Tilt-Table Test

This may be the best way to diagnose POTS.

Your doctor will ask you to lie flat on a table and strap you in so you won't fall when it tilts. The table slowly moves your body upright to simulate standing up. Your doctor will watch for changes in your heart rate.

Some people who have POTS may faint during this test. It's important to work with a doctor who's very familiar with the condition. This might be a heart doctor (Cardiologist) or a doctor who specializes in problems with your nerves and muscles ( Neuromuscular specialist).

Your doctor might also order other tests, including;

Urine tests to measure your sodium levels and rule out other causes of your symptoms
Blood tests to check your kidneys, liver, and thyroid gland and to rule out other causes
EKG and Echo-Cardiogram to see how well your heart is working
Quantitative sudomotor axon reflex test to test the nerves that control sweating
Valsalva maneuver to check the nerves that control your heart; you breathe out strongly through your mouth while holding your nose closed
Autonomic breathing test to measure your blood flow and pressure during exercise
Nerve biopsy to take a tiny sample of nerve fibers for analysis under a microscope. This is a minimally invasive procedure that goes about one-eighth of an inch into your skin.

POTS - Postural Orthostatic Tachycardia Syndrome

My Heart Rate

My Tilt Table Test

POTS - Postural Orthostatic Tachycardia Syndrome

My Heart Rate

My Tilt Table Test

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