I was 19 years old in London, having just started my first term at the London School of Economics. It was an exciting time, my first time living on my own in one of the most exciting cities in the world. One night that November, we were at a theatre on Leicester Square, watching a comedy show. The show ended and I remember standing up from my seat. The next thing I knew, I was being woken up by paramedics. I had fainted and they needed to take me to the emergency department. Riding in an ambulance was not how I pictured ending that night. The life that has unfolded for me since was also not how I imagined things would ever be.
At the hospital, they performed an electrocardiogram (ECG) that detected some ‘worrying’ results. The attending doctor told me with little bedside manner that I “might die”, so they needed to admit me. Unfortunately, they couldn’t figure out what was going on during my ten-day stay in hospital, even though they ran some fairly invasive tests. They only said it wasn’t the fatal condition they first suspected.
The most common condition that you’ve never heard of
And that was the start of a six-year journey across two countries, several doctors (including one who told me my symptoms were “all in my head”), across multiple medical disciplines and many different medical tests before I arrived at the actual diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS for short). Finding out that it was real and not just “in my head” was a big relief. But since there is no cure for this condition, my journey with POTS is likely to be life-long.
In a healthy person, standing up results in blood vessels contracting and a slight increase in heart rate to maintain bloody supply to the heart and brain. But for a person with POTS, too little blood returns to the heart when moving from a lying down to a standing up position, also called orthostatic intolerance.
Fainting, blurred vision, headaches, heart palpitations, weakness, tiredness, digestive issues and sleep disorders are common symptoms. It’s the most common condition that you’ve probably never heard of. Public (and medical professional) awareness for POTS is low, despite a prevalence rate of around 1 in 100 people, which makes it more common than multiple sclerosis and Parkinson’s disease. POTS can be so debilitating that up to 25% of patients report being so disabled that they are unable to work or go to school.
Click here for 10 Facts About POTS.
Can it be cured?
Currently, there is no cure and no medication specifically approved for the treatment of the condition by any health authority worldwide. Any treatment prescribed is off-label and efficacy can vary between patients. For me personally, the Internet ended up being a goldmine of information. Once I knew the name of my condition, I could refer to the experience of many others around the world. My experience has been that the disease will flare and then go into remission.
I was quite lucky that my condition was manageable. I had a few bad days here and there, but from sheer determination I finished university, got a job and could work mostly uninterrupted.
In 2016 however, I suddenly experienced my worst flare. I couldn’t stay upright at all without feeling dizzy, nauseous or end up fainting. After a meal, I used to bloat so badly that I looked a few months pregnant. It had never hit me that hard and for so long. My medication that had managed the symptoms just suddenly stopped being effective. I was forced to take a sabbatical from work. Luckily my workplace was supportive, allowing me to take time off while I recovered.
Determined to get better
In order to get better, I was only left with attempting alternative treatments. I started with a change in my diet and followed an exercise protocol developed by The Children’s Hospital of Philadelphia, USA for POTS patients. It was hard to walk on most days, much less get onto the reclining bike at the gym or follow the protocol. On most days I would be so ill after trying. But I kept going, and after about two to three months I could actually function like a normal human being.
What got me through all this was a determination to see things through – my wedding was that December. I was determined to be well enough to enjoy it. To be honest, if it wasn’t for me and my family’s own online research and discovering patient advocacy organisations such as Dysautonomia International, I believe I would still be very sickly today. POTS is a form of Dysautonomia (pronounced dis-otto-no-me-uh), an umbrella term that includes many different diseases of the autonomic nervous system.
Dysautonomia Awareness Month
October marks Dysautonomia Awareness Month and as I am perhaps one of three patients who have a formal diagnosis of POTS in Malaysia, I decided to embark on a local campaign on my own to raise awareness. The global campaign is “Turn the town turquoise”, and Menara Kuala Lumpur graciously agreed to change their lights to the campaign colour on October 26th. It’s the the first landmark in Asia to participate.
I’m making ribbons and raising funds amongst family and friends to be put into printing information leaflets on dysautonomia and POTS, to distribute to as many doctors as possible nationwide. My experience – sitting across from many doctors who couldn’t help me and feeling so helpless – is not something I want someone else to go through. Patients will likely have to be their own advocate, suggesting tests and medication on their own.
Counting my blessings
It’s a long and frustrating journey but you also walk away stronger, more empowered and wiser. You don’t take simple things for granted, because you never know when a flare might take away your ability to live a normal life. Which is why I am the person and mother that I am now. Pregnancy alleviates the symptoms for about 50% of patients, potentially due to the increase in blood volume. I was extremely lucky that since giving birth my symptoms are still minimal.
Every day, week and month that I am well and can spend being a healthy, able-bodied and present mother to my son is an incredible blessing. My biggest fear is that my symptoms return. But I think the same strength I found before will help me cross that bridge if it does.
By Balqis Heggie
Balqis Heggie is a POTS warrior, who believes that every thing happens for a reason, even the hard things. A proud mother to Theodore Johann Heggie, she works in operations and strategy in financial services by day, and is a baker by night through her side hustle Baker Bee.
All photos courtesy of the writer.
Anyone who would like more information on POTS or dysautonomia can visit www.dysautonomiainternational.org, an organisation at the forefront of patient advocacy worldwide. People can take this information to a trusted doctor, and request that they perform the tests required for a diagnosis.