POTS: 4 “Secret” Symptoms

It was a couple summers ago.  After going in and out of doctors offices for years, I finally got the diagnosis I was awaiting.  POTS, or Postural Orthostatic Tachycardia Syndrome.  A form of dysautonomia, POTS can cause people to have issues with rapid heart rates that can mimic anxiety, hence not getting a diagnosis for years (surely I was just anxious, right?  Wrong!).

At the suggestion of a friend, I joined some support groups on social media.  Specifically, on Facebook which has a ton of communities (called groups) that can be a place for similar people across the world to come together on topics like soup making, geocaching, or you guess it chronic illness.  The people in those groups are going through the same spoon sucking crap and hopefully can guide me through my ups and downs as I attempt to figure out how to find my normal again.  And you know what?  They helped!  So much.  But, I also found that I was learning things about my diagnosis that I would never have associated with POTS.

There are “secret” symptoms of POTS.  Now, I say “secret”, but really they’re just not as commonly talked about.  We all know that rapid heart rate is the most common symptom.  Fatigue, headaches, and brain fog are also on the top of that list.  But, there’s some we don’t talk about as much, and I’m here to reveal them!  Here’s the 4 “secret” lesser known symptoms of POTS.

Gastrointestinal Issues

Nausea, vomiting, bloating.  They’re really unpleasant, and, unfortunately, they can be a common part of living with POTS.  In fact, in POTS patients abdominal pain and nausea are the most common symptoms outside of their cardiovascular symptoms.  If you have Ehlers-Danlos Syndrome (or EDS) on top of POTS, you’re even more likely to experience this.

In general, large meals can also create problems for you.  When you eat a large meal, blood is redirected to your stomach for digestion.  This can lead to a temporary worsening of symptoms.  Dysautonomia International recommends eating smaller meals throughout the day to combat this.

Some of the foods you’re eating may also contribute.  We know that gluten intolerance (read: not necessarily Celiacs Disease) is a common problem many with dysautonomia experience.  In a 2016 study, it was said that as many as 19% of people with POTS also have an intolerance to gluten.

Coat Hanger Pain

Imagine if someone hung you up by the shoulders and upper back in the closet like a common coat.  That would stink.  Coat hanger pain is just that.  It affects the area between your shoulder blades and up towards your neck.  The pain can worsen when you’re standing.  Often misdiagnosed as fibromyalgia or spinal problems, it’s thought this particular pain is due to lack of blood flow to that area and can be common if you have POTS.  In general, increasing your sodium intake with an oral rehydration salt, or medical grade electrolyte can help manage this symptom.

Keep in mind that there are a lot of reasons this type of pain can happen.  It’s good to speak to your doctor if you’re experiencing symptoms of coat hanger pain so that you can seek treatment, if needed.

Flushing, or Rash

Your skin starts to get warm, and after checking the mirror you’ve discovered there’s a slow crawl of red spreading across your body.  You’re flushed.

According to this 2015 study, as many as 77% of POTS patients report flushing or rashes as a symptom.  Another study in 2021 suggests that 46% of people with POTS also have a condition called MCAS, or Mast Cell Activation Syndrome.  Everyone has mast cells in their body, but with MCAS those cells are overactive.  You can read more about mast cells in our blog about MCAS and POTS.

Adrenaline Surges

You’ve been relaxing, sitting in bed or on the couch watching a movie with your legs propped up.  All of a sudden your heart rate just goes bonkers.  That’s your fight or flight response kicking in.  These adrenaline surges can come out of nowhere and leave you feeling as breathless as someone who just finished the Boston Marathon in record time.

Hyperadrenergic POTS is a form of POTS that is associated with elevated levels of the stress hormone norepinephrine.  If you are one of these lucky people then you know first hand how debilitating the adrenaline surges can be.  One minute you’re just relaxing and the next you can’t catch your breath.  Hand in hand with those adrenaline surges are the adrenaline dumps.  With adrenaline dumps your body is completely wiped out.