More About Dysautonomia: POTS

Postural Orthostatic Tachycardia Syndrome (POTS)

The disabling symptoms caused by POTS are similar to living with congestive heart failure. Some POTS patients have had symptoms since birth, but most patients were active and healthy until something triggered a sudden onset of POTS.

The severity varies so much between patients, some are able to manage symptoms enough to lead a fairly normal life while others are unable to sit or stand for more than a few moments and may require the use of reclining wheelchairs. (In fact, POTS patients use 3 times more energy to stand than a healthy person, it’s as if they are running in place at all times!) Quality of life is severely impaired when normal activities like taking a shower may result in fainting or just walking from your bedroom to the bathroom is so exhausting you feel like you just ran a marathon.

Via POTSgrrl: 

“NASA researchers have done extensive research on orthostatic intolerance and POTS, since about 70% of astronauts returning from extended space flight suffer from POTS- like symptoms, due to the effects of a zero-gravity environment on the body.  In zero gravity, you develop low blood volume because your body doesn’t need as much blood in space, and your heart shrinks because it doesn’t need to work as hard when you are in space!”

Dictionary of POTS Terms (link to POTSgirl)

Underlying Conditions/Causes

Since POTS is not a disease but a syndrome, POTS is caused by something else. This is why it’s so important to figure out the underlying cause and not just settle for a diagnosis of POTS alone. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will struggle to determine the precise underlying cause. (Many doctors will claim that a POTS diagnosis is “idiopathic” or has an unknown cause, and don’t take the time and effort to really treat any underlying conditions– which is in fact the most important aspect because then you can get proper treatment and are more likely to recover)

  • POTS is often triggered by viruses such as mononucleosis (Epstein-Barr Virus) or chronic infections such as Lyme disease (or any lyme co-infections like bartonella)
  • Autoimmune diseases such as Sjorgren’s Syndrome, Celiac, Lupus, etc
  • Ehlers-Danlos Syndome
  • Mitochondrial Diseases
  • Toxicity
  • Mast Cell Disorders
  • Diabetes
  • More underlying conditions with links to more information about each here (via Dysautonomia International)

 

Treatment

If an underlying cause of the POTS symptoms can be identified, treating that condition is most important to prevent POTS from worsening. Simple lifestyle changes can help such as drinking a ton of water (2-3 liters a day) and increasing salt consumption (despite what you’ve heard, salt is not always bad- especially if you have low blood pressure!). There are various medications that sometimes help in some cases or they can  have such severe side effects that they do more harm than good. (This is where it’s especially important to be your own advocate and know your “type” of POTS. Just because beta blockers work for some POTsies, it doesn’t mean they will automatically work for you!) IV saline or hydration therapy is an option (particularly if you’re being treated for lyme and/or have a PICC line or PORT). Find out more about various treatment options here: http://potsgrrl.blogspot.com/p/pots-medications-and-treatments.html

Invisible Illness

People with POTS may not appear disabled or sick. It might be difficult to understand and this makes it easy to make judgments that someone cannot be ill because they don’t look sick. The majority of patients with POTS are young women who often appear “normal” or even “healthy” (at least until they faint, haha). Nothing hurts more than not being taken seriously when you are struggling with debilitating symptoms. Someone might have 10 minutes a day when they can stand and interact with others and feel okay. Just because you saw them during that 10 minutes, does not mean they aren’t struggling and might spend the rest of the day bedridden to “pay” for those 10 minutes. Find out more about other invisible illnesses here: invisibledisabilities.org

My Book

Have you ever read a fiction book with a chronically ill main character? Or a character with an invisible illness? I haven’t. That’s partly why I wrote “You’re Still Sick?” Find out more about the book here: https://juliejacobsendeck.com/youre-still-sick-2/

 

 

 

 

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