I dread the calls telling me my daughter has blacked out

Every time my 18-year-old daughter leaves the house, I check where she’s going to see if it’s safe for her to go.

This isn’t “just” parental care: Sophia has a medical condition that can cause her to become suddenly unconscious, perhaps for several minutes. Once she fell unconscious on a road; and on another occasion next to a railway line.

For a parent, it’s the stuff of nightmares. Part of my mind is now always ready for the next phone call telling me Sophia’s had another episode (she now has a smartwatch programmed to automatically call me when she passes out).

I’ve had calls from station personnel, college teachers, air cadet leaders, and strangers in the year since Sophia was diagnosed with dysautonomia, a condition that means her autonomic nervous system (that unconscious everyday functions like heartbeat, blood pressure, and digestion) isn’t working properly.

People with dysautonomia have difficulty regulating these functions and cause a variety of symptoms.

For Sophia, the list includes postural tachycardia syndrome (PoTS), a significantly increased heart rate when you stand up. Normally when standing, your heart rate increases by ten to fifteen beats per minute (bpm) – Sophia’s rises by 70 bpm, sometimes higher.

It’s not known what causes PoTS, but it can develop suddenly or gradually, and possible triggers include pregnancy, major surgery, or a viral illness. It affects about 150,000 people in the UK and is most common in women aged 15 to 50.

Sophia’s list also includes vasovagal syncope (or fainting due to a sudden drop in blood pressure), orthostatic intolerance (which causes symptoms such as palpitations, fatigue, light-headedness, and chest pain when you get up from a sitting position , or prolonged standing) and inappropriate sinus tachycardia (meaning her heart rate increases even without exertion).

All of this boils down to one thing: she could pass out at any time, without warning. As others her age discover new freedoms, Sophia must stop taking driving lessons.

The first time she passed out, in September 2021, was at a joint party for her 17th and her sister Elena’s 12th birthdays. One minute she was laughing with friends, the next she was unconscious on the floor.

At first I thought it was a joke. But the shocked look on her friends’ faces and the time Sophia was unconscious made it clear that this was no joke. When she came to a few minutes later, she couldn’t lift her arms or legs and kept screaming about pain in her head – it was terrifying.

I called an ambulance, but by the time it arrived, 45 minutes later, Sophia was over the worst and her blood pressure, pulse and temperature were normal, so she didn’t go to the hospital.

Then we tried to rationalize it – maybe it was a response to the excitement of the party? The party was good, I thought, but not that good.

Since then, Sophia has blacked out countless times and in increasingly creepy places. One of the most recent episodes took place around 11.30pm when she walked to our house in Penrith, Cumbria with her father from the restaurant where he is a manager and Sophia works as a waitress. She blacked out and fell on the road. A friendly stranger helped her maneuver safely into a shop door, then waited for more help to arrive.

“I’m not funny, mate, but she looks drunk, and you could be anyone,” he told her father.

It’s true. When she’s in the middle of an episode, she looks drunk – she becomes disoriented and her speech is slurred.

While we’ve learned to deal with these episodes at home, by letting her lie down and drink plenty of water until she starts to feel better, it’s encouraging to know that there are people who will look out for a young woman in difficulties.

Last December I received a call from a clerk at the train station near Sophia’s college in Kendal.

Sophia had passed out on the tracks on her way home and hit her head, which is a major concern. Several passengers stopped to help and an ambulance was called.

I am grateful for this extraordinary kindness, but I am also well aware of how vulnerable Sophia’s condition makes her.

Our GP first referred to us as PoTS after Sophia’s first fainting spell – but it took 18 months for us to get a formal diagnosis from a cardiologist at Lancaster Hospital. In fact, we were lucky; the PoTS UK charity estimates that it takes an average of five to seven years to be diagnosed – largely, they say, because many GPs are ‘unaware of PoTS’ and its symptoms.

Sophia has endured countless nights on a trolley in the hospital corridors, as doctors google it.

There have even been allegations that she made it all up. I will never forget the paramedics who loaded her into the ambulance after a particularly debilitating episode in October 2022.

Sophia passed out while watching TV, and I called an ambulance because her eyes were rolling in her head and she was gasping for breath. One of the counselors pulled me aside to ask, “Did anyone tell you this is all in her head?” – because Sophia had predicted she would faint if they stood her up.

I felt frustrated because Sophia is one of the calmest, most down-to-earth teenage girls I’ve met.

But this kind of skepticism is not uncommon. When we finally got an appointment with a specialist in January 2023, she told Sophia not to hesitate to stand up for herself. “I often get emails from female patients who are told that their symptoms are all due to anxiety.

Don’t listen,’ she said.

But at 18, none of this is easy. Even when she doesn’t pass out, Sophia regularly suffers from constant chest pains, heart palpitations, tingling in her arms and legs, headaches, brain fog, fatigue.

Imagine going through all that and then having to defend yourself to a medical professional.

Yet we have received incredible care from doctors who understand PoTS.

We finally got Sophia’s diagnosis in December 2022, just after she passed out at the train station – the acute dangers she faced had me urging hospital doctors to take a closer look at what was going on. She spent a week in the hospital where her heart was monitored constantly, including several “positive active” standing tests (where a doctor checks the heart rate response from sitting to standing, looking for the trademark drastic rise). The results were positive for PoTS.

This was reassuring as Sophia could no longer be accused of making the whole thing up and she was prescribed ivabradine to reduce her heart rate increases.

We are still experimenting with dosing because the effect is not as pronounced as we hoped, but there are other medication options; a diagnosis means Sophia can access it.

Sophia has also made friends with other patients through PoTS UK and social media.

They share their views on recommended therapies. They love ‘frontloading’ fluid – drinking a pint of water before standing up; add 2 teaspoons of extra salt to the food daily, plus small exercises such as regular tensing and relaxing of the leg muscles to prevent the heart rate from going too fast when standing.

They seem less interested in yoga, which is suggested because it can increase the body’s ability to tolerate changes in posture – frustrating for me as a yoga teacher.

Unsurprisingly, none of them seem fond of compression stockings — thick black tights that grab from the toes to above the waist and compress the lower extremities, causing increased blood flow to the heart from the veins in the legs, increasing the risk of fainting is reduced. .

PoTS is a lifelong, incurable condition (although symptoms improve in some cases) and while we understand more about what to do if Sophia has an episode (keep her lying down after a faint for as long as it takes to feel better) , it is impossible not to worry.

She now has a medical emergency line that explains her condition to strangers and the smart watch that calls me when she passes out. Meanwhile, I’m still working on getting her to wear those compression stockings.