Ehlers Danlos and PoTS

What Exactly Is PoTS?

Gravity normally draws some of your blood down to your belly, hands, and feet as you sit or stand up. To keep blood flowing to the heart and brain and prevent blood pressure from falling, the blood vessels rapidly narrow, and your heart rate rises slightly.

The autonomic nervous system does all of this without you having to think about it. The autonomic nervous system does not function properly in people with PoTS. When you get up, the blood flow to your heart and brain decreases, and your heart races to compensate. Standing up can be difficult for those affected because their bodies cannot adapt to gravity.

PoTS is characterized by orthostatic intolerance and is caused by an irregular reaction of the autonomic (automatic) nervous system (the development of symptoms when upright that are mostly relieved by lying down). Palpitations, light-headedness, vomiting, sweating, nausea, fainting, and headaches are among the symptoms linked to a constant rise in heart rate when moving from a lying to an upright position.

Imagine having a daily heart rate of 170 or higher and a blood pressure of less than 60 during the day. Consider how terrifying that would be.

What Are The Consequences Of PoTS?

This is a life-altering and incapacitating illness. Although this, like mental illness, can be very debilitating, it is not noticeable. PoTS is a chronic condition, which ensures it lasts for the rest of one’s life. Despite its severity, it is a disorder for which very little is understood, even among medical professionals. That is why it is important to raise awareness about PoTS syndrome.

People are now fighting for PoTS by raising awareness – the more people aware of the disorder, the more we will help those who suffer in silence.


Ehlers-Danlos Syndromes (EDS) is a category of rare hereditary diseases that are part of a group of connective tissue disorders that includes 13 different groups. hEDS, also known as hypermobile Ehlers-Danlos Syndrome, is the most common form. This condition is at the end of the Hypermobility Spectrum Disorder (HSD) spectrum (HSD). Body, tendons, ligaments, blood vessels, internal organs, and bones all depend on connective tissues for support.

Symptoms of hypermobile EDS include:

  • Joint hypermobility
  • Loose, unstable joints that quickly dislocate
  • Joint pain and clicking joints
  • Excessive tiredness (fatigue)
  • Bruise-prone skin
  • Digestive issues
  • Dizziness and an elevated heart rate when standing up
  • Bladder function issues
  • Internal organ issues

Since very little is known about this disorder, an independent investigation is being called for. Patients can be suspected of making up illnesses and treated as people with a mental health conditions. As a result, their illness goes untreated, and their physical and mental health also deteriorates.

This disorder can be treated with the right diagnosis and the right help and support, and sufferers can live happy life. They can become seriously ill, experience excruciating pain, be unable to function independently, and even become suicidal if they receive the wrong diagnosis and receive no assistance or support.

PoTS  and Ehlers Danlos Syndrome Combined

Many people with Ehlers-Danlos syndrome (EDS) suffer from postural orthostatic tachycardia syndrome, a type of dysautonomia (POTS). Dysautonomia is a common disease of the autonomic nervous system, which is in charge of the body’s automatic functions such as digestion, heart rate, sweating, and breathing. Standing up or sitting in an upright posture causes POTS symptoms, most notably an elevated heart rate.

Isn’t everyone’s heart rate higher when they get up?

A natural response to a change in position is a rise in heart rate. If the body is in a supine (horizontal) or sitting position, blood will settle at the lowest level possible. On the other hand, the brain needs blood at a higher elevation to absorb oxygen and nutrients. A lack of oxygen for an extended period of time can cause neurological functions to shut down.

Blood vessels constrict, and the heartbeats harder to pump blood to a higher elevation. When people stand up too soon, they can become lightheaded, but their balance is restored in a matter of seconds. People with POTS, on the other hand, have a higher heart rate. Furthermore, the body takes longer to re-establish equilibrium.

POTS or another sort of orthostatic intolerance is experienced by 80% of people with EDS. EDS affects approximately 33% of people with POTS. POTS can be very crippling. Shortness of breath and headaches are just a few of the symptoms of POTS. Standing causes nausea or extreme cramping for certain people, including myself. I sometimes have dizziness and brain fog. Others can also pass out. It’s been said that living with POTS is like getting the flu. POTS hurt my quality of life and is exacerbated by EDS.

There is currently no treatment for POTS affected by EDS. However, some therapies and countermeasures can help to lessen the severity of POTS symptoms.

There are some of them:

  • Electrolyte replacement and hydration: If you drink a lot of water and eat a high-sodium diet, you can stay hydrated on your own, but some may need IV fluids.
  • Compression garments: Since the body is unable to constrict blood vessels on its own, you must wear garments that compress your limbs and assist in blood vessel constriction. Compression garments assist the body in keeping fluids where they belong.
  • Medication: To slow your heart rate, your doctor may prescribe a beta-blocker. It took some time for you to adapt to the medication’s effects, but breathing slower and allowing your heart to catch up to my level of operation is preferable to chest pain and a racing heart. A steroid can be administered to certain individuals. Before taking any drug, make sure to check with your doctor.
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