I had heard of POTS before my diagnosis, but never in a way that made me connect the dots to my own life. For years, I just lived inside a body that sometimes reacted to everyday things in ways that didn’t make sense. Strange episodes would happen, then fade, and I’d tuck them away somewhere in the back of my mind because I didn’t know how to interpret them.
I assumed I was overly sensitive, dehydrated, anxious, dramatic, or just unlucky. It wasn’t until 2021, after my gastric bypass surgery, that the scattered pieces finally formed a picture. But to understand that, it helps to understand what was happening underneath.
What Dysautonomia and POTS actually are
Dysautonomia is an umbrella term for disorders of the autonomic nervous system, the system that automatically regulates heart rate, blood pressure, circulation, digestion, and temperature without us thinking about it.When that system misfires, the body doesn’t adjust the way it should.
One form of dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS). POTS is defined by a sustained increase in heart rate of at least 30 beats per minute within ten minutes of standing, without a significant drop in blood pressure. In simple terms: when most people stand up, their bodies adjust smoothly. In POTS, the heart races to compensate for blood that isn’t circulating properly.
Blood pools in the lower body. The brain doesn’t get what it needs quickly enough. The heart overcorrects.
POTS can feel like:
- dizziness or tunnel vision
- heat rushing through the body
- shaking and sweating
- nausea
- temperature dysregulation and feeling either too hot or too cold
- a heart racing too fast for the situation
- profound, disproportionate fatigue
Some people with POTS are also prone to vasovagal syncope, another form of dysautonomia. Vasovagal episodes are typically triggered by pain, emotional distress, or medical procedures, and involve a sudden drop in heart rate and blood pressure, often leading to fainting or near-fainting.
I experienced several dramatic episodes over the years leading up to my diagnosis.
The first incident (nearly 20 years ago)
One of the earliest signs happened nearly twenty years ago during what was supposed to be a routine OB-GYN appointment. The exam was unexpectedly painful and emotionally jarring. My body reacted instantly.Heat rushed through me. My hands shook. My vision darkened at the edges. My legs barely held me up.
I made it to the waiting room and sat down fast because I could feel myself slipping. And then I threw up in my lap. No warning. No time to move. Just my body shutting down in a room full of strangers.
At the time, I thought I had embarrassed myself. I told myself I was too sensitive.
Looking back now, that episode was likely a vasovagal reaction — a reflex of the autonomic nervous system triggered by sudden pain and stress. It wasn’t drama. It was physiology.
The cruise incident (2016)
In 2016, on the morning I was taking off for a cruise with my grandparents, I woke up violently sick with vomiting and diarrhea. The stomach bug itself probably wasn’t POTS, but everything afterward fell into the same pattern.Despite the rough morning, I made it out to the car and felt fine for most of the ride to the cruise port, because I was seated. The second I stood in the parking garage at the Port of Tampa, my body collapsed into chaos.
Dizzy. Shaky. Sweaty. My legs barely working. My vision dimming. It felt like gravity had doubled.
I squatted in the elevator because staying upright was too much. When we finally made it down and outside, I immediately sat on the sidewalk, because I was unable to stand, and promptly threw up again. Paramedics came. When they had me stand to check my vitals, my heart rate surged and my blood pressure dropped, something that can happen with dehydration and autonomic instability. They took me to the ER, and after IV fluids and medication, I finally felt stable enough to function.
That episode was likely a combination of severe dehydration and autonomic dysfunction. It wasn’t yet chronic or positional in the way POTS would later become, but it was another sign that my nervous system did not handle stress normally.
The COVID test incident (2020)
In 2020, I had one of those early deep COVID swabs — the kind that felt like they were trying to swab your brain. The moment it was over, the internal alarm went off again.Heat. Dizziness. Nausea. A heart that felt like it had jumped into a sprint. My hands shook, and I felt unsteady.
I started to drive home. Moments after getting on the expressway, my vision tunneled and black spots floated in front of me. Sweat ran down my back. My hands were trembling on the wheel. I pulled off at the nearest exit and parked because I genuinely wasn’t sure I could stay conscious.
I sat there with the windows down, waiting for the world to come back into focus.
That episode, too, was likely vasovagal, a pain-triggered reflex response of an overly reactive autonomic system.
I didn’t know it then. I didn't know it had a name. I just knew that it was happening again.
The turning point: surgery and everything that followed (2021)
My gastric bypass in 2021 was a major physical stressor. For many people, surgery can trigger or worsen autonomic disorders. For me, it was the moment everything shifted from occasional to constant.At a follow-up visit, my surgeon checked my pulse and immediately knew something wasn’t right. My resting heart rate was far too high. She sent me to the ER because she didn’t know what was causing it, and after running many tests, they discovered I was severely dehydrated.
But even after fluids, something remained different.
Suddenly, every time I stood up, my heart rate jumped dramatically. My legs shook. My vision filled with stars. Heat made everything worse. I had to brace myself on walls just to walk down the hallway.
This was different from the earlier episodes.
It wasn’t triggered by pain.
It wasn’t tied to a procedure.
It was positional.
It was persistent.
It happened nearly every time I stood.
That pattern is what defines POTS.
The day I fell
The months immediately after surgery were scary. I risked falling nearly every time I stood. Luckily, there’s only been one full-on collapse. I was walking down the hallway, one hand on the wall for stability, my phone in the other, when everything tunneled again. This time, there was no catching myself like all the other times before.My legs gave out. My phone flew out of my hand. My head hit the floor. When I came back around, my entire body was shaking.
It wasn’t clumsiness. It wasn't a trip. It was my autonomic system shutting down mid-step.
The diagnosis: finally connecting the dots
Because my heart rate remained high and I was constantly dizzy upon standing, my surgeon eventually referred me to a cardiologist. Sitting in that cardiology office, for the first time, someone listened to my history not in isolated pieces, but as a whole.Suddenly, the moments I’d carried for years lined up:
- the cruise collapse
- the dehydration ER trip
- the walking issues after surgery
- the OB-GYN episode nearly twenty years ago
- the COVID expressway scare
- the fall in the hallway
- the constant, bone-deep exhaustion
Seeing them together was the first time the full picture came into focus. Nothing was random. Nothing was weakness. Nothing was “just stress.” The diagnosis was POTS, a form of dysautonomia.
Some of my earlier dramatic episodes were likely vasovagal reflexes. After surgery, the pattern shifted into chronic, positional tachycardia. That was POTS fully surfacing.
The other thing I learned that day is that there’s no cure for POTS and no single treatment that works for everyone. I was advised to take salt pills, drink more fluids, and exercise regularly (my cardiologist recommend running specifically). The salt pills were awful — I lasted about a month on them before giving up — and the rest has been more about managing symptoms than making them disappear. POTS is something you live with, not something you fix.
The kind of tired you can’t sleep off
The dizziness, the constant racing heart, and all the near-fainting spells were the most obvious symptoms that sounded the initial alarm, but fatigue has been the through-line of all of this: one of the most common, debilitating, and misunderstood symptoms of POTS. It’s not the kind of tiredness that goes away with a good night’s sleep.My body works harder than it should to do things most people never have to think about:
- standing and walking
- regulating my heart rate
- keeping blood where it needs to go
- managing temperature
- handling noise, light, and stimulation
- recovering between movements and positions
Even
simple tasks cost extra energy. Even good days start on a lower
battery. My body constantly working overtime behind the scenes leads to
permanent exhaustion. When you have an unstable nervous system, energy
drains faster than it should. As a result, I wake up tired, regardless
of how much I sleep, and it never goes away.
Heat drains me.
Brain fog shows up and takes over. Migraines flare when my system is
overwhelmed. And even now, my heart rate always runs high despite the
medication I take to lower it. This has never been just about being
tired. It’s about a nervous system that’s constantly working overtime.
Other episodes, even recently
Even
now, my body still reacts strongly to certain triggers, especially
medical procedures. Last year, after a minor procedure, I had another
near-fainting episode — the same rush of heat, shaking, dimming vision,
and that strange feeling of the world slipping sideways.
This
year, when I had another small procedure, I warned the doctor and nurse
ahead of time. They kept me lying down afterward, handed me juice and
crackers, and didn’t let me stand until the color came back into my
face. It helped, but it was also a reminder that my autonomic system can
still tip over when it’s pushed.
These episodes don’t happen as
often, but they’re part of my reality. I’ve learned to speak up before
something goes wrong and to stay horizontal as long as I need to.
Where I am now
Luckily, my POTS is currently much less dramatic than it has been in the past. I’m not collapsing every time I stand. I don’t feel like I’m going to fall with every single step, the way I once did. POTS ebbs and flows, and I've been much more stable in recent years. But I’m still exhausted in a way that sleep doesn’t fix. I still deal with brain fog. I still get dizzy or see stars if I stand too fast. And my heart rate still runs higher than it should — all of the time — even with medication.I sit more than I stand. I can’t be on my feet for long stretches without paying for it later. Heat still wipes me out. I sometimes move slower than I want to. I adjust constantly, often without thinking.
POTS is still here... just quieter than it used to be.
Understanding what my body is doing hasn’t made the symptoms disappear, but it has changed how I see them. I don’t fight myself the way I used to. I don’t dismiss what I feel. I don’t walk around confused about why my body reacts the way it does.
I finally know the story my body was telling me all along, even when I didn’t have a name for it.
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