POTS – The Mysterious Disorder

Before hitting the publish button, I double-checked with Lea if she was certain about sharing her story.  Getting consent from my family is imperative especially when I delve into personal issues. Her main goal is to create awareness in order to help others who might suffer too.  Lea ’s journey with POTS (Postural Orthostatic Tachycardia Syndrome) started on 22 May. Not known by many, POTS is a mysterious disorder that is often misdiagnosed for anxiety or panic attacks.

How it all started

Life was pretty normal for 13-year-old Lea before Friday, 22 May.  She was healthy, active and full of energy. But on this particular Friday life as she knew it before drastically changed.  That is when she first started experiencing symptoms of dizziness, nausea and fatigue.  That morning we decided to take the dogs for a walk and with a distance of 500m, she felt lightheaded. Low blood sugar levels was our initial thought as we left home without having breakfast.  Throughout the day she had multiple dizzy spells.  By the Saturday, the spells escalated coupled with nausea and fatigue.  I took her to the doctor on the Sunday. After checking her vitals; her rapid heart rate alarmed him. He confirmed that everything else seemed normal, ruled out a viral infection and linked the symptoms to anxiety.

Still majorly concerned about her rapid heart rate, he referred her to Kingsbury Emergency Unit.  She underwent multiple tests including an ECG. All test results came back as normal. Although the ECG showed a normal heart rate and rhythm it didn’t determine any other heart problems.  She received a referral to a paediatric cardiologist.  Getting an appointment with a specialist can take weeks but Lea was lucky to get an appointment the very next day. After doing an ultrasound of the heart it was confirmed that her heart is healthy and strong. That confirmation was a huge relief. But the cardiologist also linked her symptoms to possible anxiety.

Lea’s dizziness continued on a daily basis and we continued to link it to anxiety. She opened up about being fearful about COVID-19, the uncertainty about the 2020 academic year and the way forward.  So it definitely had to be anxiety – or so we thought.

Finally, a diagnosis…

We noticed that whenever she was in a standing position or just after she ate a meal, her dizziness and nausea increased excessively.  These episodes would be followed by emotional outbursts and frustration as she had no idea why her body was reacting in such a way. Moving around and being in an over-stimulating environment was taxing on her. This caused a former vibrant teenager to have no energy. She became abruptly socially disengaged.  We knew that something wasn’t right but as all medical results were normal, we couldn’t pinpoint exactly what it could be other than anxiety.

The evening of 8 June; I coincidentally stumbled upon an article about a teenage girl diagnosed with POTS. She had exactly the same symptoms as Lea.  This was a light-bulb moment and it prompted me to read more articles about this disorder.  Each and every article I read stated the exact same symptoms.

The next day I called the pediatric cardiologist who then advised that instead of doing a tilt table test at the hospital; we do a heart-rate test at home.  With the heart-rate monitor on her arm, she had to lie still for 10 minutes after which she had to immediately get into a standing position.  After downloading the results, it was evident that her heart rate increased dramatically to more than 30 beats per minute within the first few minutes of being in a standing position. The results were emailed to the doctor who confirmed that it was indeed POTS.

Finally, we had a diagnoses to this mysterious disorder and the pieces of the puzzle started fitting together.  We are lucky that we made a breakthrough so early as it takes months and sometimes years before some people get a diagnosis and by then their condition has worsened. POTS affects 1 in 100 teenagers mostly girls. It is a disorder of the autonomic nervous system. This part of the nervous system controls involuntary functions, such as heart rate, blood pressure and digestion. For people with POTS the autonomic nervous system malfunctions. This means that when standing or eating a meal, blood pools in the lower part of the body, causing a drop in blood supply to the heart and brain. The heart rate increases excessively to compensate for this.

POTS is a chronic disorder and there is no cure for it. The cause is not well understood but it is believed that is triggered by trauma, serious injury, viral and other medical illnesses, pregnancy or during or after a growth spurt.  We suspect the latter triggered Lea’s.

Symptoms of POTS

POTS present symptoms much more complex than just a rapid heart rate. People who suffer from POTS usually experience two or more of the following symptoms:

• Lightheaded/dizzy
• Fainting
• Brain fog
• Headaches
• Tachycardia (rapid heart rate)
• Heart palpitations
• Low blood pressure
• High blood pressure
• Nausea
• Abdominal pain
• Bloating
• Constipation
• Diarrhea
• Fatigue
• Dry eyes
• Blurred vision
• Irritability
• Sensitivity to light and sound
• Anxiety
• Temperature deregulation (hot or cold)
• Weight loss or gain
• Excessive thirst
• Exercise intolerance

Where we are now…

There is no single treatment that is going to work for everyone, so currently everything is still trial and error.  Lea is on prescribed medication to control her heart rate. To manage and improve her symptoms and to maintain the blood volume and circulation, she takes a vitamin B supplement, increased her fluid intake to at least 3L of water a day, takes salt tablets and wears compression stockings every day.  Suffering from POTS require lifestyle changes.  This includes dietary adjustments by cutting down on carbohydrates, eliminating food that can worsen the symptoms and giving her healthier smaller meals to eat. Staying active is important too and therefore structured floor and seated exercises are also incorporated.

Lea is gradually accepting her diagnosis. Some days are better than others. As parents we have to be patient, tolerant, have a positive attitude and give her all the support she needs. Because we are not experiencing her symptoms, we trust her when she tells us she has no energy to do anything.  Being at home is a safe haven for her right now as this is where she feels most comfortable. We are outdoorsy people who love to hike and go for long walks in the forest, it is challenging as we can no longer indulge in such activities as a family.  That being said, we have managed to get her out of her comfort zone by taking shorter walks so that she can become socially active again.

Although POTS is a chronic condition, about 80% of teenagers outgrow it once they reach the end of their teenage years. Hopeful of this fact, we also have to be mindful that this might be a lifelong illness. Therefore, we don’t want this disorder to control her life, instead she must learn to control POTS.  There should be no stigma attached and sharing her diagnosis with her friends has created an understanding.  I am grateful that she is keeping a social connection with them during this time via WhatsApp.

Maintaining her independence is also crucial and boosting her self-esteem will help her to regain her confidence and trust in her own abilities. She is currently keeping a journal which is good for mind, body and soul.  Art has been a great source of let out to keep her mind occupied and to shift her focus from her illness.

Our biggest concern is whether she will be able to cope once she heads back to school. In order to get the school involved; the paediatric cardiologist will submit a letter  informing them about her condition before she returns in August.  POTS can have a huge impact on her mental health and arranging counselling sessions with the school psychologist will be a priority.

For now, Lea is managing her symptoms fairly well and is optimistic about her future and as parents we are committed to support her every step of the way. We remain hopeful that things will get better.

I hope that this article has helped those who are still in the research phase and trying to find answers. After all that was Lea’s main intention for this blog post.

All the best,