A mum with an ultra-rare condition that caused her heart to stop beating properly whenever she swallowed says she feared every meal could be her last.
Sarah Hall’s heart paused 12 times in a single day, with eating and drinking often triggering dizzy spells, blackouts and terrifying collapses.
The mum-of-two became so frightened of fainting in public that she stopped going out for meals and even worried her heart might stop while eating and never restart.
Doctors eventually diagnosed the 50-year-old with cardioinhibitory swallow syncope – a condition so rare that fewer than 150 cases have ever been reported worldwide.
Now, after undergoing a pioneering medical procedure, Sarah says she has her life back.
“This condition I had affected everything – my job, my independence, and my home life,” Sarah, from St Albans in Hertfordshire, told Need To Know.
“During family meals, my husband would have to sit next to me in case I lost consciousness, and my children would be wondering if I would make it through to the end without blacking out.
“What should have been normal family time became stressful and frightening.
“I had to stop driving and I was signed off work for several months.
“It was one of the hardest times in my life.
“I started to have these scary thoughts that my heart might just stop when I was eating and never restart.
’But now I can live without fear.”
Sarah first started suffering fainting episodes and vomiting when she was 39.
Years later, she began noticing dizziness whenever she ate, before the symptoms became progressively worse.
By the age of 48, she was regularly blacking out and losing consciousness.
She said: “Since I was in my late forties, I assumed this was just the perimenopause or that I had low blood sugar or dehydration from being a busy midwife in a hospital who did not eat or drink that regularly.
“But, at its worst, this was causing me to lose consciousness multiple times a day, and I was too afraid to eat in public in case it happened.
“It was when I lost consciousness in front of my children, who were only 12 at the time, during a family lunch, that the confusing and distressing situation made me realise that I really did need to get checked out.”
After being referred to specialists and fitted with a heart monitor, doctors discovered Sarah’s heart had paused 12 times in just 24 hours.
She was diagnosed with cardioinhibitory swallow syncope, a rare condition in which swallowing triggers an overreaction in the vagus nerve, causing the heart to slow dramatically or even stop temporarily.
In Sarah’s case, her heart could pause for up to a minute.
When conventional treatments failed, she was offered a place on a medical trial testing an innovative procedure known as cardioneural ablation (CNA).
Supported by the British Heart Foundation and the NIHR Imperial Biomedical Research Centre, the treatment targets the nerves responsible for triggering the dangerous heart-slowing response.
Doctors insert catheters through the groin and into the heart, where they create a detailed map of nerve activity before using heat to destroy the problematic nerve cells.
Until recently, many patients with severe cases would have required a pacemaker to manage the condition.
Researchers found the treatment dramatically reduced blackouts among participants, with average episodes falling from 19 a year to around one.
Dr Mohamed Zuhair, syncope fellow and researcher at the National Heart and Lung Institute, Imperial College London, said:
“For many people, fainting is brushed off as something minor, but for those living with severe, recurrent episodes, it can be debilitating. Some of our patients were fainting up to 100 times a year, and living in constant fear of when the next episode might strike.
“CNA offers a way to treat the root cause of this condition. It allowed the people in the study to get back to living normal lives without needing a pacemaker. We hope that this procedure will be adopted by more clinicians.”
Because of concerns about fitting a pacemaker at a relatively young age, Sarah was referred to the trial at Hammersmith Hospital in London.
Since undergoing the procedure in 2024, she has not suffered a single blackout.
Sarah added: “In the months leading up to my ablation, every time I ate I would feel the blood draining from my head and be overwhelmed by dizziness which turned everything black until sometimes I lost consciousness.
“I never knew when it would happen, and eating had become functional, unenjoyable, and something I avoided socially.
“Those around me treated every mealtime as a ‘high-alert’ situation.
“But after the ablation, I can go out for dinner again, enjoy food, and say yes to social plans without fear.
“I can drive, I can work – it feels like everything has come full-circle.
“Thanks to the researchers and amazing doctors, my life is truly back to normal.”
