Is it POTS or anxiety?

Over and over we are hearing that patients with postural orthostatic tachycardia syndrome (POTS) are often misdiagnosed with anxiety disorders.  Sometimes it takes years for a diagnosis to come which can be frustrating and exhausting.  How do you know if it’s POTS or anxiety?

Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia that affects the autonomic nervous system.  It’s associated with a myriad of symptoms which can sometimes mimic anxiety.  POTS is not as rare as you may think it is.  According to Dysautonomia International, it affects approximately one to three million Americans yearly.  Even with that staggering number of people, doctors are often unfamiliar with the causes and conditions that can be brought on by POTS.  Which can lead to a misdiagnosis. 

In fairness, POTS can resemble the symptoms of a panic or anxiety attack to an untrained eye.  Racing heart, sweating, brain fog (or difficulty concentrating), and chest pain can all be symptoms of both conditions.  With a big difference.  Many times POTS patients find their blood pressure drops upon doing nothing more than standing up.  Leaving them feeling faint to the point that some people with POTS will pass out.  While POTS isn’t a new thing, it’s still new enough that it’s often specialists who end up correctly diagnosing you.  General doctors can be rockstars, but if they are not familiar with POTS you may find them diagnosing your list of symptoms as an anxiety disorder.  

One study talks about this exact situation, finally acknowledging what so many people with POTS already knew.  A young woman was misdiagnosed for seven years from the age of 12 to 19.  She was taking anti anxiety medications, but there was minimal effect on her symptoms.  Plus, when she took a hot shower or was outside in the heat she noticed her symptoms would worsen to the point of being intolerable.  A doctor knowledgeable on POTS and a simple tilt table test lead to her eventual diagnosis. 

POTS can be debilitating when it goes undiagnosed.

We talked to a number of potsies to see what their experience was in initially being misdiagnosed as having an anxiety disorder.  What symptom was it that led them to stop and think that maybe it was something more.  Here’s what they had to say:

Anon POTSIE 1

I was declining slowly for years despite doing every healthy thing I knew. I was dizzy every time I stood up, and I was getting so physically weak I could barely function. The final straw was a week-long headache and I started to collapse when I walked up a flight of stairs. Next thing I knew, I needed a wheelchair to get around at all. Sorry, not anxiety! Not depression! I know plenty of depressed and anxious people, and none of them have to use a wheelchair because their body just turns off!

Anon POTSIE 2

I had covid for almost a month. A week after fully recovering I developed symptoms. I would get that lightheaded/dizzy/heart palpitations feeling.  I thought I was going to pass out.  My heart would start pounding out of my chest till I sat or laid down. Random shortness of breaths/gasp for air would make me panic causing adrenaline rushes throughout the day. I was sure I was having heart problems but no one in my family has a history of heart problems. 

Anon POTSIE 3

While I've had symptoms of POTS all my life, my journey to finally get diagnosed started with... vertigo. I've been told they're related, I've been told they are not, I've been told my vertigo is inner ear or neurological, I've been told many, many things.

Anon POTSIE 4

I have come to the realization I was likely misdiagnosed. See, I have tachycardia even whilst seated, and while I get the characteristic 30+ BPM spike when I stand, it then decreases by 10-15 beats or so and then stays there. The only time during which I am not tachycardic is when I am sleeping. 

Anon POTSIE 5

I am in the midst of battling different doctors, learning to advocate for myself, and convincing myself that I am not crazy and what I’m feeling is REAL. I’ve driven myself crazy researching possible causes to my symptoms for hours on end.

Anon POTSIE 6

I found it weird that I did not feel anxious, just exhausted, and I was told that “anxiety can present itself in many different ways”. It was especially odd that I only got heart palpitations when standing up or after eating or showering. 2 years after noticing symptoms I got a POTs/EDS diagnosis.

No matter where you are in your journey to a diagnosis of POTS, know you’re not alone.  So many people have come before you blazing a trail towards advocacy.  You know your body!  Be an advocate for yourself and keep pushing for a diagnosis that makes sense for you.