POTS Syndrome – A Firsthand Tale of POTS Symptoms Unnoticed
Refusing to take a shrug and tip to drink a gatorade as ER discharge advice, a diagnosis finally surfaced.
An “Aha!” Moment.
POTS.
*Disclaimer: The content below is from personal experience and holds no professional or medical recommendation. Seek the opinion of a qualified health care provider if you believe you may have POTS or an associated condition.
What is POTS Syndrome?
POTS stands for Post Orthostatic Tachycardia Syndrome.
The clinical diagnosis is indicative of an inappropriately heightened heart rate upon standing – but this definition just scratches the surface.
POST ORTHOSTATIC – Upon Standing Upright
TACHYCARDIA – Rapid Heart Rate Out Of Character For Age/Exertion
SYNDROME – Condition Characterized By An Associated Set of Symptoms
This diagnosis criteria measures the heart rate spike upon standing. A normal heart rate would typically rise by only a small amount. A POTS heart rate suddenly spikes upon standing from a seated position to counter blood pooling in the legs and feet. This core POTS diagnosis makes sense – but not everyone experiencing this phenomenon will pinpoint their heart rate rising to an undiagnosed chronic illness.
What Does POTS Syndrome Feel Like?
The most recognizable feeling of an onset POTS episode is a faint feeling and blackening of the vision – commonly referred to as a “head-rush”. Although severe POTS episodes can result in full loss of consciousness, this form of POTS (without fainting) can be even more common and indicative of an underlying diagnosis.
Anyone can experience a head-rush from time to time. However, individuals with POTS tend to experience this as a regular symptom. Most notably with prolonged standing, dehydration, or other environmental factors.
Firsthand, I experienced this symptom for years even as a kid/teen but a head-rush alone never screamed for medical attention. That is, until things got worse. In hindsight, it was a strong indicator of POTS Syndrome.
Individuals with POTS symptoms, myself included, experience this sensation multiple times in a single day. To what extent? Oftentimes their vision goes completely black and won’t return until sitting down. If forced to remain standing symptoms such as chest pain, palpitations, fainting and loss of balance will be exacerbated.
How To Diagnose Pots Syndrome
Following the core POTS definition and diagnosis criteria above, the next question becomes: How do you seek a formal POTS diagnosis?
POTS Tilt Table Test:
The standard test for diagnosing POTS, identifying an increased standing heart rate, is the Tilt Table Test.
The tilt table is essentially a standing test for POTS. On a legitimate tilt table, the individual is fastened to a flat platform, often with several large velcro straps. This tilt table goes from a horizontal to vertical position, hence the name, often under the control of a computer. The healthcare team can vary how quickly and often the individual is subject to orthostatic movements. After a defined period, the doctor will observe how the patient’s vital signs react.
POTS Self-Diagnosis:
Journaling the patterns of your POTS symptoms can be helpful far beyond an isolated tilt table test. Using an easily available wearable heart rate monitor can help to validate a self diagnosis. This can lead to a more in-depth conversation with your healthcare team.
There are certainly all forms of heart rate monitors from bare bones up to smart watches. In my case, a simple Fitbit styled watch showed that more times than not my heart rate would jump. From an athletic resting ~58BPM to 110bpm+ upon standing, it was apparent that something wasn’t right.
As time progressed (and I began to treat POTS syndrome) I would further recognize which environmental and dietary factors elevate this POTS heart rate increase.
POTS Signs & Symptoms – Are There More?
An In-Depth POTS Symptoms List – From Firsthand Experience:
- Low Blood Pressure
- Fainting
- Loss of Vision Upon Standing
- Heat Intolerance
- Alcohol Intolerance
- Chest Pain
- Palpitations
- Inability to Stand for Prolonged Periods
- Headaches & Migraines
- Frequent Dehydration
- Frequent Cravings of Salt & Electrolytes
- Tingling/Numb Extremities
- Flushed Skin
- Bath/Hot-Shower Intolerance
- Loss Of Balance Upon Standing
- Dizziness
- Vertigo Sensation
- Light Sensitivity
- Shortness of Breath
- Brain Fog/ Difficulty Thinking
- Mast Cell/ Allergic Reactions
- Histamine Intolerance
- Nausea
- Joint Pain
- Hypermobility
POTS Syndrome Or Something More?
I’ve compiled this list from firsthand experience, not a formal POTS definition, to paint the bigger picture:
POTS is more than just an elevated heart rate.
The >30BPM definition is used as a first line of diagnosis, but there is far more beneath the surface. It took myself years to understand how all these symptoms (both mild and severe) are intertwined – and I’m still facing new realizations as time goes on. The next pots diagnosis topic that is crucial to understand: How the autonomic system comes into play.
POTS Vs. Dysautonomia
Are POTS & Dysautonomia The Same Thing?
The simplest way to think of POTS vs. Dysautonomia is to step back and think of the body as a whole. The nervous system ties the brain to the heart.
What is Dysautonomia?
Dysautonomia is a disfunction of the Autonomic Nervous System.
The autonomic nervous system controls many involuntary functions of the body including digestion and heat regulation. Plus (you guessed it) heart rate and blood pressure.
Is There a Cure For Dysautonomia & Pots?
If you’re following this far, it would seem that Dysautonomia causes POTS. So if we could just cure Dysautonomia – wouldn’t the POTS symptoms be resolved? Theoretically, Yes.
In practice – it’s a complex diagnosis to treat.
At this time, it is not fully known where Dysautonomia stems from and what can be done to restore a proper nervous system function.
Still, within the last several decades POTS and Dysautonomia have finally become widely diagnosed, recognized, and researched.
How to Diagnose Dysautonomia?
In many cases, mine included, Dysautonomia diagnosis doesn’t follow a single test. Many individuals with POTS receive an implied diagnosis based upon the complex network of Dysautonomic symptoms observed.
In my experience, building an understanding around Dysautonomia through healthcare visits and personal research has helped to paint an even bigger picture: POTS May Result From Faulty Nervous System Wiring.
POTS Demographics
Who can have POTS Syndrome?
POTS can affect individuals of any age, background, or activity level.
There is widespread belief that the most diagnosed demographic with POTS Syndrome is women aged ~30-45 Years Old. Take this with a grain of salt however – as POTS is often misdiagnosed and individuals of all types present symptoms.
My case speaks to this – diagnosed as a 16 year old male, nurses, doctors, and others aware of POTS would often remark “Wow, You’re A Rarity”.
In reality, I believe much of this observed pattern results from misinformation and under-diagnosis. For example, younger individuals may often be dismissed as being healthy when all other vitals point to an athletic body. There may be other links to who is at-risk for POTS syndrome, but at this time it appears to be little more than a statistical observation.
POTS Prognosis
What is The Outcome of a POTS Diagnosis?
Good News: Many Individuals With POTS Can Live Long & Fulfilling Lives!
I’ve been there. A sudden diagnosis is overwhelming to say the least.
In my case POTS was the last thing to be tested/diagnosed. Presenting mysterious and serious symptoms (such as chest pain and isolated loss of consciousness), doctors found negative results for most every heart condition, organ disfunction, and beyond before considering POTS.
Although often coined as a heart condition, POTS doesn’t hold the same prognosis as many other urgent-surgery types of heart issues. The body & organs themselves often show a clean bill of health. The key to a favorable prognosis lays in long-term management of underlying symptoms:
Lifestyle changes such as increased sodium intake, mindful exercise routines, select medication, and limitation of environmental triggers go a long way in minimizing the toll of POTS on the body.
POTS & Dysautonomia can certainly get in the way. With a little dedication and mindfulness however, I’ve been able to do most anything I enjoyed pre-diagnosis. With some extra precautions and accommodations in place I’ve been able to graduate from university, maintain consistent work, and enjoy an active life (including the occasional skateboarding, surfing, swimming, DIY projects, and beyond).
Firsthand Experience
Uncovering a Life with POTS Syndrome
I was officially diagnosed with Post Orthostatic Tachycardia Syndrome at 16 years old. The laundry list of POTS symptoms above had been prevalent for years before, but never concentrated into a single overarching diagnosis.
I’ll continue to share my story and understandings of POTS & Dysautonomia through Craftsman Collaborative.
Why? Those years back, finding a lonesome POTS blog post (from googling head-rush, fainting, and blood pressure symptoms) is what gave an initial revelation in my life & diagnosis.
The Evasive Diagnosis
The ~6 months preceding my formal diagnosis, symptoms had progressively grown more noticeable after a serious second-degree burn. Between this bodily stress and a reaction to prescribed pain medication, a POTS flareup like never before hit hard. In front of a family member, I went into what presented itself as somewhere between a seizure and a stroke to the untrained eye.
Losing vision, consciousness, balance, and then going completely unresponsive in their arms before coming to some seconds later. Sick to the core, with tremors, nausea, and an inability to comprehend what had just occurred. Looking back, this severe POTS episode meant no blood flow to the brain – which triggered a fail-safe of collapsing unresponsive until blood flow could resume enough to survive.
Being rushed to the emergency room led to a typical dismissal of symptoms with a shrug and recommendation based on an assumption of simple dehydration. A tough situation – but what can you expect when every trained ER vitals test appears normal outside of an “athletically low blood pressure”.
At that point, I had seen top pediatric cardiologists, neurologists, and physicians, but to no avail. How could a seemingly healthy young man that could knock a stress-test out of the park still exhibit such untraceable symptoms?
I knew at that moment that there was undeniably something more.
Sure enough, with the fortune to get in to a local POTS specialist some months later, everything would become much clearer and confusing at the same time. 7 years later, still facing symptoms, but much more aware of managing POTS through both natural methods and a purposeful combination of medication.
Looking for more firsthand information on POTS management & lifestyle?
Keep an eye out for future content on Craftsman Collaborative – POTS Page
Further Resources: Dysautonomia International
