Monday, October 2, 2017

What are Dysautonomia and POTS?

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a you know what dysautonomia is?

If you said no, you're not alone.  Most people have never even heard of it.  I didn't know what it was either until I was diagnosed with it.

What are Dysautonomia and POTS?

Dysautonomia is a disorder where the autonomic nervous system is not regulated correctly.  That includes heart rate, breathing, the GI system, body temperature, and more.  A few of the disorders that fall under the umbrella of dysautonomia are Postural Orthostatic Tachycardia Syndrome or POTS, Neurocardiogenic Syncope or NCS, and Multiple System Atrophy or MSA.  

Despite the fact that many people have never heard of dysautonomia, it's not rare.  It's estimated that over 70 million people around the world have it in one form or another.  Often, it's a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more   The most severe cases can result in death.

Although there are quite a few different disorders that fall under the umbrella of dysautonomia,  I'm going to talk about POTS as that's the one I have personal experience with.

What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc.  People with an autonomic disorder such as POTS have issues regulating those things.

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For instance, have you ever stood up quickly and gotten lightheaded?  POTS is that times a thousand.  Even slight movements can trigger dizziness and lightheadedness due to blood pressure that is not properly regulated by the body.

What are the symptoms?
Some of the symptoms of POTS include:
  • Lightheadedness
  • Dizziness
  • Fainting
  • Tachycardia
  • Chest pains
  • The inability to regulate body temperature
  • GI issues
  • Fatigue
  • Exercise intolerance
  • Low blood pressure
  • Shortness of breath
  • Vertigo
  • Sensitivity to light and noise
  • Brain fog
  • Migraines
  • And more
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Is there a cure?  How can you treat it?
There is no cure for POTS or dysautonomia, but hopefully, continued research will find one.  For the time being, the symptoms can sometimes be managed with increased salt intake, rest, compression garments, and medications.

Is POTS ever misdiagnosed?
Frequently!  It's often misdiagnosed as anxiety, panic attacks, or stress.  POTS is an invisible illness and even doctors can have a hard time seeing it.

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I think I may have POTS. Now what?
POTS was identified by Mayo Clinic in 1993.  As it's a "newer" condition, it can be hard to find a doctor who knows what it is, let alone one who is familiar enough to diagnose and treat it.  Dysautonomia International has a list of Facebook support groups where you can ask for doctor recommendations.
Have you ever heard of dysautonomia or POTS?  

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Want to know how you can help raise awareness and support research for POTS and dysautonomia?  You can donate here at Dysautonomia International, buy a dysautonomia shirt at Sunshine and Spoons (10% of all purchases made during the month of October at the Sunshine and Spoons Shop will be donated to Dysautonomia International!), share this post, or just talk about it!

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