I went from fit & healthy to wheelchair bound in days – I faint when I stand & my jaw dislocates when I brush my teeth
TWO years ago Simone Barry, 49, was a healthy outdoorsy mum who loved hiking with her dog, Daxx, and had just married her husband Stevie.
Now she is often bedbound, uses a wheelchair and can’t even stand up without passing out.
Daxx has become her support dog and Stevie, 52, has become her full-time carer.
“This isn’t the way we imagined starting married life,” says Simone, from Comber, County Down.
“I look back to photos of myself from a couple of years ago and I look like a completely different woman.
“I’ve wasted away, I’ve lost 6st and my life is completely different.”
Simone has been diagnosed with a rare condition called PoTS (Postural Tachycardia Syndrome), which causes her heart to beat so fast when she sits or stands that she loses consciousness.
She also suffer digestive symptoms and is on a liquid diet because solid food causes sickness and diarrhoea.
The condition is so severe that Simone faints numerous times every day and spends most of her time trying to limit her movements. Even simple chores like hanging out the washing can trigger an attack.
“Stevie calls me The Cobweb Inspector,” she jokes. “It’s because I spend so much of my life lying on the floor, waking up after fainting and looking up at the ceiling.
“The poor man is always hoovering and cleaning the floors because he knows that’s where I’ll end up!”
Simone has had Ehlers-Danlos Syndrome (EDS), which causes hyperflexibility and dislocations, since her early 20s, but has always managed the condition well and “got on with life”. It’s not believed to be connected to the onset of her PoTS.
She has three grown-up children and had always been active – she was once a keen horse rider, and before becoming unwell she loved hill walking in the Mourne Mountains near her home with German shepherd Daxx and Stevie.
It was April 2021 when Simone first started suffering dizzy spells.
One day that summer, Stevie came home to find her on the floor and dialled 999, but in hospital tests found her heart was healthy.
“I had an Apple watch so I could see that my heart was racing crazily even when I was doing simple things,” she says.
“It would go from around 60 to 170 beats per minute (BPM) within seconds.”
She and Stevie were due to tie the knot in September 2021 so doctors suggested it could be pre-wedding jitters, but Simone knew it was something more serious.
“Our wedding day at a local golf club was lovely, but I made sure there were plenty of chairs around for when I felt dizzy,’ she remembers.
By July 2022 she was seriously unwell, and after collapsing again at home she was hospitalised for eight days. Again doctors couldn’t find an explanation for her racing heart.
“I was sent home in a wheelchair and told not to make any sudden movements,” she remembers.
“I was absolutely gutted – my whole life changed.”
Simone now spends most of her time resting on her sofa, because she can’t climb the stairs without passing out. Even sitting up from the sofa can trigger a faint.
When an attack comes on, she says it starts with a feeling of breathlessness.
“I think ‘here we go again’,” she explains. “Then my chest hurts and flutters, my hearing goes like I’m underwater, then everything goes black.”
Simone says there have been “some dark times” but Stevie and Daxx have kept her going. She used to do scent work with Daxx, but she is now training him to be her support dog.
“I’ve taught him to lie beside me when I faint,” she says.
“He checks my airway and if the floor is cold he drags a blanket over me. I’m currently training him to roll me over into the recovery position by nudging me with his nose.”
Simone was finally given a diagnosis of PoTS in October, after a ‘Tilt Table Test’ in September at Belfast’s Ulster Hospital.
The test involves being strapped to a table that then slowly tilts the patient from horizontal to vertical as specialists measure the changes in heart-rate.
“The test is meant to last 45 minutes but they had to stop mine two minutes after starting to move the table because my heart rate went dangerously high,” she says.
She has now been given an appointment to see a specialist at Kings College London on November 15, but it will be a telephone consultation because she is too ill to fly from Northern Ireland to London.
She has already tried several different types of beta blockers but they haven’t been effective.
“I’m just desperate for answers,” she says.
“There are treatments that I could try – although they may or may not work because every patient is different. But I’m ready to try anything, I just want my old life back.”
What is Postural Tachycardia Syndrome (PoTS)?
PoTS causes your heart rate to increase very quickly when you get up after sitting or lying down.
Symptoms include dizziness, fainting, heart palpitations, chest pain, shortness of breath and shaking or sweating.
It can also cause other issues including diarrhea, nausea, stomach pain, headaches, vision problems, and issues with memory and concentration.
It can also cause other issues including diarrhea, nausea, stomach pain, headaches, vision problems, and issues with memory and concentration.
It is not clear what causes PoTS. Some patients only suffer mildly and for others it has a big impact on daily life.
Specialists may recommend medications including beta blockers, steroids or selective serotonin reuptake inhibitors (SSRIs) to treat PoTS, depending on the severity.
Visit www.potsuk.org for information and support.