Growing up with POTS and living with an invisible illness
For as long as I can remember, I’ve been plagued by fainting spells and random episodes of a bounding pulse. It started when I was just seven years old. This was the first time I gave my poor Mother a significant scare. She was trimming my hair, sitting in a chair behind me. The last thing I remember before fainting is her saying, “Hold very still”. Then I woke on the floor to her shaking me. (She, of course, didn’t tell me at the time, but she thought I had died. She said, looking at me; she could tell there was nothing in my eyes. I wasn’t there). When I came to, I told her I could hear her yelling for me.
My Mother immediately called the hospital and took me to the ER. At this time, in the mid-nineties, POTS was just being discovered. The hospital did their best, testing me for everything they could think of. They promised my Mother that other than dehydration, I had a clean bill of health. This understandably left me confused and scared. The episodes continued randomly with no consistent frequency or length. Every trip to the emergency room ended the same way – with doctors scratching their heads and assuring me that I was perfectly healthy. Even as a child, I knew something wasn’t right.
Life as a teenager
As I got older, doctors began to dismiss my symptoms as anxiety and acute panic attacks. We tried various medicines, but none worked, and the episodes continued.
I remember being in middle school, and I would have episodes of dizziness, and my vision would pulse. Now known as pulsing vision, I had no idea how to articulate what was happening at the time. The nurse said my blood sugar was probably low, the teachers were afraid of me passing out in their class, and the school thought that I was undergoing bouts of anxiety dealing with ‘teen life.’ I then had a standing appointment with the school counselor weekly. I tried to explain my pulsing vision to her as best I could. I could tell she cared. Still, I think her bias led her to believe I was struggling with anxiety navigating the complexities of being a teenager. After all, clinical acute anxiety was on my record.
My adult life
In 2010, after my daughter’s birth, I finally received a piece of the puzzle that would get me closer to unraveling the mystery.
A visit to a cardiologist revealed that I had Mitral Valve Prolapse – a diagnosis that shed some light on my symptoms but still left many questions unanswered.
It wasn’t until last year (2023) that I finally discovered the missing piece – POTS.
So what is POTS?
Postural Orthostatic Tachycardia Syndrome (POTS) is a complex and often debilitating condition characterized by a dysfunction of the autonomic nervous system.
In individuals with POTS, there is a malfunction in the autonomic nervous system, which controls involuntary bodily functions such as heart rate, blood pressure, digestion, and temperature regulation. Specifically, POTS is characterized by dysfunction in regulating blood flow, particularly to the brain, when changing positions.
When a person with POTS stands up, gravity causes blood to pool in the lower extremities, decreasing blood flow to the brain. In response, the autonomic nervous system attempts to compensate by increasing heart rate and constricting blood vessels to maintain blood pressure. However, in individuals with POTS, this compensatory mechanism is dysfunctional, resulting in an excessive increase in heart rate without a corresponding increase in blood pressure.
POTS can significantly impact daily life and quality of life, as symptoms can be unpredictable and may worsen with heat, caffeine, physical activity, or stress. The exact cause of POTS is not fully understood, but it is believed to involve a combination of genetic predisposition, environmental factors, and physiological changes in blood volume and regulation.
What are the most common symptoms of POTS?
- Tachycardia: One of the primary symptoms of POTS is an abnormally high heart rate, especially upon standing up from a seated or lying position or prolonged standing (“prolonged” to people with POTS is standing in line, standing during a tour, standing while cooking, standing in the shower – standing in the shower can be very challenging as heat can increase chances of a flare-up, and can make you nauseous and dizzy). This rapid heartbeat can lead to palpitations, chest discomfort, and sometimes shortness of breath.
- Orthostatic Intolerance: Individuals with POTS often experience symptoms of orthostatic intolerance, which means they have difficulty maintaining blood pressure and blood flow to the brain when transitioning from lying down to standing up. This can result in dizziness, lightheadedness, or even fainting (syncope).
- Dysautonomia Symptoms: POTS is a form of dysautonomia that affects the autonomic nervous system responsible for regulating involuntary bodily functions. Therefore, individuals with POTS may experience a wide range of symptoms related to autonomic dysfunction, including:
- Nausea
- Fatigue
- Weakness
- Sweating abnormalities (excessive sweating or no sweating)
- Digestive issues (such as abdominal pain, bloating, and constipation)
- Blurred vision/pulsing vision or visual disturbances (seeing “TV static”)
- Sensitivity to light and noise
- Cognitive difficulties (brain fog, difficulty concentrating)
- Temperature regulation problems (feeling excessively hot or cold)
- Exercise Intolerance: Many individuals with POTS experience difficulty with physical exertion. They may feel extremely fatigued, dizzy, or nauseous during or after exercise, which can limit their ability to engage in physical activities.
- Sleep Disturbances: POTS can also disrupt sleep patterns, leading to insomnia, frequent awakenings during the night, or unrefreshing sleep despite adequate rest.
- Headaches: Some individuals with POTS experience headaches (for me, it’s migraines, especially upon waking), which can range from mild to severe and may be accompanied by other symptoms such as dizziness or nausea.
- Raynaud’s phenomenon: POTS can be related to this condition characterized by temporary constriction of blood vessels, typically in the hands and feet, in response to cold or stress, causing them to turn white or blue. This constriction restricts blood flow and can lead to numbness, tingling, or pain. Once the trigger is removed, blood flow returns and the affected areas may turn red and throb or feel swollen.
- Tremors: Often felt in the hands or chin.
Not everyone with the condition will experience all of these, and symptom severity can vary widely. Symptoms may fluctuate over time or in response to triggers such as stress, heat, or physical activity. If you suspect you may have POTS, it’s essential to consult with a healthcare professional for proper evaluation and diagnosis.
Diagnosis of POTS typically involves:
Tests may include tilt table testing, Orthostatic BP Test, autonomic function tests, blood tests, and cardiac evaluations (Most of which are used to rule out other possible conditions).
Treatment for POTS
Treatment is often multifaceted and tailored to individual symptoms and needs. It may include lifestyle modifications (such as increasing fluid and salt intake, wearing compression garments, managing stress and anxiety, and avoiding triggers).
Ongoing research is underway to understand the underlying mechanisms of POTS and develop more effective treatments for this complex syndrome.
Knowledge is power
Finally, having a name for what has plagued me nearly all my life was both validating and empowering. POTS explained everything – the fainting spells, the racing heartbeat, the blurred vision – it all made sense now. The results of a basic tilt table test revealed that I indeed had POTS.
Armed with this newfound knowledge, I felt a sense of calm wash over me. I was no longer at the mercy of my symptoms; I was in control.
I am learning how to manage my symptoms, how to recognize when a flare-up is coming on, and most importantly, how to advocate for myself.
Knowing is half the battle, right?
Living with POTS is a challenge; there are good days and bad days, moments of triumph and moments of frustration. Knowing that I’m not alone and that there is a wealth of knowledge about POTS (Even though it is still being studied) makes a huge difference.
“First, make sure you are not, in fact, surrounded by a*******.”
This a quote that you can find online regarding depression; while I highly doubt that Mr. Freud would use this kind of language, the quote has stuck with me, resonating, because I have found, especially with having POTS, that the people you are around can make all the difference. Someone very close to me in my past was not caring or compassionate about my condition. They assumed my “problematic episodes” were attributed to anxiety, and their approach was, “Get over it and don’t let it hinder our lives.”
I recall a trip to the San Antonio Riverwalk around 2009, shortly after my son was born.
While much fun was had on this trip, I remember having a flare-up. This is not surprising given that it was June or July in San Antonio heat. Around the time that my heart rate skyrocketed and I got dizzy, I told this person that I was having one of my dizzy spells and didn’t think it was a good idea to go inside the tiny room they were going in to watch a video about the alamo. I expressed that I was thinking about how humiliating it would be to create a scene by passing out. So I was left outside the room alone with our three-month-old son in his stroller. I remember their attitude toward their family who we were with: “Whitney’s being weird again; she’s going to wait out here.” Very curt and devoid of compassion.
So many instances like this left me feeling completely alone in my condition. This made me even more apprehensive. When those closest to you don’t take your health concerns seriously, it can be devastating.
A valuable insight gained
Having a husband who is caring and empathetic to me has made such a difference in my life. His demeanor about these challenges has always been, “Whatever this is, we’re in it together; I’m right here with you. I’ve got you. Let’s get some answers.” I can’t tell you how much he has affected my life positively. What a difference it has made having someone who truly cares, tries to understand what you’re going through, and will unapologetically sit with you no matter when or where an episode may be triggered. I am very grateful my husband nudged me to get to the doctor and get this figured out. We’re still in the process of figuring everything out, but we’re moving right along, and knowing triggers and managing my symptoms has made things much easier.
Parting words
I’ve learned from this journey the importance of listening to your body and trusting your instincts. If something doesn’t feel right, don’t hesitate to speak up and seek the care you deserve. Living with an invisible illness is a struggle, but I won’t give up or lose hope. While the road ahead may still hold challenges, I face it with a newfound confidence, an encouraging and supportive partner by my side, and the wisdom gained from my experiences.
For further insights into POTS, visit the dedicated page on ninds.nih.gov.
Stay tuned for more of my self help articles.
