What is POTS Dysautonomia?

The Elevator Speech:

You might be here for the elevator speech, so I’ll start there: POTS is a disorder of the central autonomic nervous system - the system of nerves responsible for nearly every function of the body. This means the systems that we typically don’t have to think about (like regulating heart rate, digestive function, and blood pressure) don’t work properly and need specific attention. It creates chronic symptoms and fight-or-flight responses in the body every day. It primarily makes me feel extremely dizzy, light headed, and fatigued constantly, and I often have severe gastrointestinal pain and nerve pain through my body. Some days I’m able to function pretty normally, and other days I have trouble leaving bed.

One description I’ve read defined POTS as “Constant nausea, shifting blood pressure, racing pulse, continuous light-headedness, devastating fatigue like the weakness of a prolonged flu. Inexplicable.” That definition really hits home.

Video:

I feel like this short video does a pretty good job with accuracy and explanation What is POTS? (4 min)

So often we don’t have words to fully explain what it’s like to live with “silent” illnesses like POTS, so it was one of the greatest honors of my life to have JJ Heller and Joy Prouty honor our story through song and video. You can watch it here: I Believe in You (Official Music Video)

Learning more about POTS:

This is a lengthy post, but it’s information I wish I’d had when I was first diagnosed. For so long I felt really unclear about what exactly POTS is, and fumbled over explaining it to others. I have so much more to learn, but this is a reflection of what I do know, through my research, personal experience, trial and error, information from specialists, and education. I hopes you find it really helpful in better understanding POTS….for me, for yourself, or for someone you love.

A condition within Dysautonomia:

POTS falls under the category of “dysautonomia.”

Dysautonomia is a condition in which there is dysfunction of the central autonomic nervous system. This means the system of nerves that is responsible for regulating things that you don’t typically think about like heart rate, acidity levels, blood pressure, digestion, body temperatures, etc, doesn’t function correctly. Typically, there’s a seamless communication through nerves that send signals from the brain to the body to regulate each system, but in dysautonomia, this is not the case. This creates chronic underactive and overactive systems in the body.

Underactive and Overactive Systems:

While a typical body is really efficient at regulating itself, a body with dysautonomia struggles to find equilibrium due to poor nerve signals.

This creates the experience of overactive and underactive systems….overactive heart rate, underactive blood pressure, overactive bladder,  underactive temperature regulation, overactive fight-or-flight response, underactive sleep cycles, etc.

Imagine a control board where you flip one switch and everything pretty much runs seamlessly, vs a control board where there’s 50 unlabeled switches and wires crossing. The body gets overwhelmed with poor communication and fires a lot of panic signals…. and thus the day begins.

A person with dysautonomia has to be keenly aware of these misfiring systems and work intentionally every day to guide the body towards more equilibrium, away from it’s default mode of fight-or-flight caused by the autonomic dysfunction.

So what’s the “POTS” part?

POTS is a sub-category under the umbrella condition of dysautonomia. It stands for Postural Orthostatic Tachycardia Syndrome. The primary defining characteristic that sets POTS apart from other dysautonomia conditions is poor circulation of blood flow due to misfiring communication from the brain to the body. Among other things this forces the heart to beat extremely fast in order to pump blood through the body, and causes a multitude of symptoms.

Why do you feel chronically faintish?

A compromised nervous system has difficulty adapting to changes such as going from sitting to standing, temperature shifts, moving the eyes up and down…all things we normally wouldn’t think about. But all of these small shifts require thousands of nerve communications between the brain and body. The mere act of standing requires the brain to tell the body to pump increased volumes of blood upward towards the head and heart to prevent you from feeling light headed. Think about how many signals get fired everyday! ….the body is pretty incredible.

In POTS, when these signals aren’t communicating correctly, simple things like moving from sitting to standing (postural orthostatic) trigger a panic response because there’s suddenly not enough blood and oxygen moving upward towards the heart and head. To compensate, the heart beats faster (tachycardia) to try to adapt.

So essentially, in POTS, all of the small autonomic transitions that the body goes through naturally ever day, take significantly more energy to adapt to, often triggering a fight-or-flight panic response on a cellular level. This then results in the dysregulation of many other functions (digestion, immunity, etc).

So if you just stand up really slow, will that fix POTS?

A quick google search will basically tell you that POTS means you get dizzy when moving from sitting to standing. Unfortunately postural changes are far from the only way POTS affects the body.

Postural changes are not the root issue, just an effect of the underlying problem of a lack of blood flow regulation. Some degree of feeling faintish is typically present at any given time (though often more aggressive during postural changes). For example, as I sit here on the couch typing this, my feeling of faintish/dizziness is about a 7 out of 10, even though I’m not currently transitioning from sitting to standing.

The governing issue of a dysregulated autonomic nervous system is what keeps the body in a chronic state of dysfunction, despite fluctuations of internal and external stimuli.

Chronic fatigue & The Fight-Or-Flight Response:

Remember the last time you slammed on your car breaks and your heart raced out of your chest? Or when you had to give a speech and your throat felt like it was closing in? Or when you saw blood and your vision blurred? Or when you realized you forgot to pay a bill and felt light-headed? Or when you were about to walk on stage and your legs seemed to turn to spaghetti noodles? This is the fight-or-flight response….we’re all very familiar.

With POTS, to some extent, the body lives in a chronic state of the fight-or-flight because it’s constantly in some form of disarray trying to manage and compensate for underactive and overactive systems that aren’t properly regulated by the autonomic nervous system.

For example, a change in position, stirring food over a hot stove, looking up towards the sky and back down, shifting vision from a bright light to a dim room, being cold for a prolonged period….things that typically one would quickly adapt to, are really disorienting and can throw a body with POTS into major disarray and various symptoms.

This cycle creates a constant state of burn out and chronic fatigue as the body works endlessly to regulate every hour.

Chronic fatigue is on a pretty loose spectrum and is experienced differently for each person, but the best way I can explain how it feels in a body with POTS is “crushing.” Some days it’s certainly less oppressive, but on hard days it’s the kind of exhaustion where it hurts to shift your focus across a room, can create waves of nausea, and sometimes makes walking feel like moving heavy metal limbs.

In POTS patients, this chronic crushing fatigue may be the result of various instabilities (like hormone fluctuations, adrenal insufficiency, etc) but it’s always also a direct result of how hard the body is working to manage itself.

Although the state of mind can be helpful in aiding these responses, this is far deeper than a state of conscious thought.

To some degree,
POTS affects everything.
And everything affects POTS.

What are some of the symptoms of POTS Dysautonomia?

Listed below are symptoms that I personally experience with POTS. These symptoms range in intensity from day to day in terms of how much it impacts my every-day life. I’ve found many lifestyle and dietary practices to be very helpful in managing some of these symptoms and others are super unruly. The symptom list is pretty common for all POTS patients, but is not fully encompassing, as someone else may be impacted in different ways and to different degrees.

-Temperature dysregulation
-Digestive sensitivity
-Compromised immune function
-Resting heart rate spikes past 100 bpm multiple times per day
-Nerve pain throughout the body
-Low blood pressure
-Blood sugar dysregulation
-Chronic dehydration
-Extreme fatigue
-Insomnia
-Pain in the low back, chest, neck and shoulders
-Feeling significantly worse upon waking in the morning
-Flu-like symptoms
-Dizziness
-Irritability caused by fatigue and internal and external over-stimulation
-Feeling weak in the limbs
-Acid reflux
-Brain fog and trouble forming clear thoughts
-Vision disturbances: seeing shadows and spots, blurring, distortions, trouble shifting the eyes, eye fatigue, prescription changing more frequently
-Sensitivity to light and loud noise
-Skin and tactile sensitivity
-Shortness of breath
-Joint and muscle pain
-Clamminess or ice cold hands and feet
-Numbness and tingling in hands and feet
-Disequilibrium: loss of stability
-Sensitivity to chemicals
-Sensitivity to altitude
-Nausea
-Severe menstrual pain
-Restless leg syndrome
-Vestibular disturbances: inner ear/balance issues
-Adrenal insufficiency: commonly known as adrenal fatigue but more correctly termed and tested as HPA-D (hypothalamic-pituitary-adrenal axis dysfunction -disfunction of the axis that primarily governs the stress response) causing a lower production of cortisol and aldosterone hormones.

Finding the light:

POTS may sound a little daunting, and in a lot of ways…it is. It’s a really unpredictable condition with a lot of nuance. The intensity of symptoms shifts, each day the experience is different, some days feel really manageable, and others feel crushing… despite your best efforts, despite what makes sense, despite all the research and tips in the world.

But here’s what’s also true…

Dysautonomia is a thorn. We all have thorns. Every single one of us - walking together towards the light, day by day, hand in hand. And we’re all really brave, and really loved, and really not alone. And sometimes that’s the most important thing to remember as we move forward One. Day. At. A. Time.

I hope you found this post to be really helpful in understanding POTS. There are a lot of other topics to cover, and I certainly don’t have all the answers, but I may create future posts from my knowledge and experience if that would feel helpful…
-Lifestyle and dietary tips that I’ve found to be critical for managing POTS
-How POTS onset
-Treatment for POTS
-Why my husband and I have chosen/not chosen certain modalities of treatment

Please let me know if you’d like to see posts about any of these topics!

May we bravely walk the rocky roads,
All of my love and light,
-Christina

P.C. Joy Prouty

***If you or someone you love has POTS or another form of dysautonomia and would like to talk one on one about any of these topics or others, email me so we can connect. christina@christinagracehutson.com

***The above information is based on my research, education, and personal experience and is not to be used as a medical diagnosis. You should always consult your doctor in regards to your specific body and needs.