![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/i-cant-stand-without-passing-857717686.jpg\")
\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/i-cant-stand-without-passing-857717676.jpg\")
\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/798fc0a4-b982-463e-9c07-f679fc5dbfce.jpg\")
\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/i-cant-stand-without-passing-857717687-1.jpg\")
<\/p>\nTWO years ago Simone Barry, 49, was a healthy outdoorsy mum who loved hiking with her dog, Daxx, and had just married her husband Stevie.<\/p>\n
Now she is often bedbound, uses a wheelchair and can\u2019t even stand up without passing out. <\/p>\n
\n
\n
\n<\/p>\n
Daxx has become her support dog and Stevie, 52, has become her full-time carer.<\/p>\n
\u201cThis isn\u2019t the way we imagined starting married life,\u201d says Simone, from Comber, County Down. <\/p>\n
\u201cI look back to photos of myself from a couple of years ago and I look like a completely different woman.<\/p>\n
\u201cI\u2019ve wasted away, I\u2019ve lost 6st and my life is completely different.\u201d<\/p>\n
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.<\/p>\n She also suffer digestive symptoms and is on a liquid diet because solid food causes sickness and diarrhoea.<\/p>\n 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.<\/p>\n \u201cStevie calls me The Cobweb Inspector,\u201d she jokes. \u201cIt\u2019s because I spend so much of my life lying on the floor, waking up after fainting and looking up at the ceiling.<\/p>\n <\/span><\/p>\n <\/span><\/p>\n <\/span><\/p>\n <\/span><\/p>\n \u201cThe poor man is always hoovering and cleaning the floors because he knows that\u2019s where I\u2019ll end up!\u201d<\/p>\n Simone has had Ehlers-Danlos Syndrome (EDS), which causes hyperflexibility and dislocations, since her early 20s, but has always managed the condition well and \u201cgot on with life\u201d. It\u2019s not believed to be connected to the onset of her PoTS.<\/p>\n She has three grown-up children and had always been active \u2013 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.<\/p>\n It was April 2021 when Simone first started suffering dizzy spells. <\/p>\n 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.<\/p>\n \u201cI had an Apple watch so I could see that my heart was racing crazily even when I was doing simple things,\u201d she says. <\/p>\n \u201cIt would go from around 60 to 170 beats per minute (BPM) within seconds.\u201d<\/p>\n 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.<\/p>\n \u201cOur wedding day at a local golf club was lovely, but I made sure there were plenty of chairs around for when I felt dizzy,\u2019 she remembers.<\/p>\n By July 2022 she was seriously unwell, and after collapsing again at home she was hospitalised for eight days. Again doctors couldn\u2019t find an explanation for her racing heart.<\/p>\n \u201cI was sent home in a wheelchair and told not to make any sudden movements,\u201d she remembers. <\/p>\n \u201cI was absolutely gutted \u2013 my whole life changed.\u201d<\/p>\n Simone now spends most of her time resting on her sofa, because she can\u2019t climb the stairs without passing out. Even sitting up from the sofa can trigger a faint.<\/p>\n When an attack comes on, she says it starts with a feeling of breathlessness. <\/p>\n \u201cI think \u2018here we go again\u2019,\u201d she explains. \u201cThen my chest hurts and flutters, my hearing goes like I\u2019m underwater, then everything goes black.\u201d<\/p>\n Simone says there have been \u201csome dark times\u201d 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.<\/p>\n \u201cI\u2019ve taught him to lie beside me when I faint,\u201d she says. <\/p>\n \u201cHe checks my airway and if the floor is cold he drags a blanket over me. I\u2019m currently training him to roll me over into the recovery position by nudging me with his nose.\u201d<\/p>\n Simone was finally given a diagnosis of PoTS in October, after a \u2018Tilt Table Test\u2019 in September at Belfast\u2019s Ulster Hospital. <\/p>\n 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.<\/p>\n \u201cThe 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,\u201d she says.<\/p>\n 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.<\/p>\n She has already tried several different types of beta blockers but they haven\u2019t been effective.<\/p>\n \u201cI\u2019m just desperate for answers,\u201d she says. <\/p>\n \u201cThere are treatments that I could try \u2013 although they may or may not work because every patient is different. But I\u2019m ready to try anything, I just want my old life back.\u201d<\/p>\n PoTS causes your heart rate to increase very quickly when you get up after sitting or lying down.<\/p>\n Symptoms include dizziness, fainting, heart palpitations, chest pain, shortness of breath and shaking or sweating.<\/p>\n It can also cause other issues including diarrhea, nausea, stomach pain, headaches, vision problems, and issues with memory and concentration.<\/p>\n It can also cause other issues including diarrhea, nausea, stomach pain, headaches, vision problems, and issues with memory and concentration.<\/p>\n It is not clear what causes PoTS. Some patients only suffer mildly and for others it has a big impact on daily life.<\/p>\n Specialists may recommend medications including beta blockers, steroids or selective serotonin reuptake inhibitors (SSRIs) to treat PoTS, depending on the severity.<\/p>\n Visit www.potsuk.org for information and support.<\/p>\n![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2022\/08\/newspress-collage-19655879-1661867697701.jpg\")
<\/picture>'NO CURE' <\/span><\/p>\nMy allergy to gravity makes me faint 10 times a day – I spend 23 hours in bed<\/h3>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/08\/newspress-collage-23383305-1691441290732.jpg\")
<\/picture>FIGHTING BACK <\/span><\/p>\nI'm 28 & I've been in SIX comas -now I've made a huge breakthrough<\/h3>\n
Most read in Health<\/h2>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/girl-drunk-wine-sits-writes-858367332.jpg\")
<\/picture>PIE-EYED PHONE <\/span><\/p>\nIncredible Smartphone app can tell if you\u2019re drunk with almost 100% accuracy<\/h3>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/Aaaron-James-comp.jpg\")
<\/picture>MIRACLE <\/span><\/p>\nMan who lost his face to 7,200-volt electric shock gets world’s 1st eye transplant<\/h3>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/07\/NINTCHDBPICT000833863214-1.jpg\")
<\/picture>FOOD FOR THOUGHT <\/span><\/p>\nCutting daily calories by just 12% could add years to your life<\/h3>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/10\/doctor-viewing-brain-scans-possible-832381909-1.jpg\")
<\/picture>FUZZY HEAD <\/span><\/p>\nScientists discover alarming time it takes brain to repair from alcohol damage<\/h3>\n
Read More on The Sun<\/h2>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/RR-IMCELEB-LINEUP_09_NOV_v2_COMP.jpg\")
<\/picture>GET THEM IN <\/span><\/p>\nI'm A Celeb official line-up as Nigel Farage and Britney's sis head into jungle<\/h3>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/newspress-collage-24679877-1699522661229.jpg\")
<\/picture>CLOSING TIME<\/span><\/p>\nMajor DIY homeware chain to shut store doors permanently before Christmas<\/h3>\n
What is Postural Tachycardia Syndrome (PoTS)? <\/h3>\n
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/f830f380-9f1a-4189-8f38-2f93ca8b81d4.jpg\")
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/6243bd54-046b-4057-860e-6c9655799d24.jpg\")
![](\"https:\/\/www.thesun.co.uk\/wp-content\/uploads\/2023\/11\/1f1e3543-ba1c-4c31-be9a-db11578cfcc7.jpg\")