A NORTH Yorkshire woman has spoken about how she was “bed-bound” during the pandemic after coming down with a condition which one doctor says has links to long-Covid.
Dr Sanjay Gupta, said that many who have contracted long-covid could have a lesser known condition called POTS.
The Northern Echo spoke to people suffering from POTS in the North East to see how the health condition affected them.
POTS stands for Postural Tachycardia Syndrome and can be a life altering and debilitating health condition resulting in shooting heart rates while doing the most basic day to day activities.
Mr Sanjay, a consultant cariologist at York Hospital, stressed that we are currently at the “threshold” of discovering this condition and many doctors until now “thought their patients were mad.”
Speaking to one of the sufferers of POTS in the North East she said that many doctors she approached “didn’t even know it existed.”
Mr Gupta revealed that long-covid is “probably the same thing” as POTS which should shine a new light on the disease, bringing hope to many who have suffered from POTS and never been “taken seriously.”
Mr Gupta explained that due to its links, much of the treatment being developed for long-covid could also be used to treat POTS.
He said: “What people don’t realise is this is a real condition and people do get better with treatment and the sooner people start establishing that firstly, there is help available for this condition.
“But also the fact that maybe you have long Covid and you won’t get given treatments for long-Covid, which have not been sanctioned yet.
“But it is the same condition as this, then, you could potentially access other treatments that are making POTS patience a lot better, but also could make long-Covid patience a lot better.
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“So there’s a very current contemporary theme to this and literally, people’s lives are changing now.
He added: “I think that if we can draw attention to it, then not only will POTS patience within the region benefit but there may be lots of long Covid patience who will start understanding that there are doctors out there who are genuinely interested in getting these patience better.
“All the guidelines recognise it as a disorder, but there isn’t much space for it in the guidelines so everyone knows POTS is a disorder now, in the medical world and cardiology world, they realise this is a thing.”
Lisa Murray, from Scarborough in North Yorkshire, said POTS has affected her life “significantly” and day to day activities can be a big challenge for her.
Ms Murray was once a very active and “fit” person and worked full-time for 20 years until she became “very ill” in October 2018 with her POTS reaching its worst point during the pandemic in 2020.
The last two years have been bad, but lockdown didn’t really affect us because I was lockdown in the house anyway because of my POTS, it was that bad.
She said: "For three months in 2020, I was bed-bound because the moment you change position your heart can go up to about 150, and if I tried to stand it would go up to 180.
“Before October 2018, I was a fit normal human being, used to do everything, used to go out for really long walks, and all that came to an end.”
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Lisa said getting up in the morning can be one of the biggest struggles of the day and it takes her up to an hour to fully get up.
She added: “Mornings are always the worst because with POTS as you’re laid down, your blood moves down and your kidneys work overtime and expel all the liquid you’ve consumed over the day.
“On the morning when you got to sit up my heart rate goes through the roof. For me it takes about an hour to sit up and luckily I have a pillow lift so I sleep quite propped up which has helped greatly.
“Before I can even think of getting up I need to drink a litre of fluid, to help raise the blood volume in the body.
“That allows me to sit up and put my legs over the edge of the bed, and then I have to wait for a bit and then I can get up and clean my teeth and all that.
“But simple tasks like cleaning your teeth or washing my face I have to do sat down, because I can’t stand up too long.”
Ms Murray has acquired various aids to try and help carry out day to day tasks as well as just getting around.
She said: “Once you’re virtually up, things have to be minimised so I need to have aids to do things like showering, because you can’t stand up that long.
“When it comes to washing my hair, I have to wash it at the kitchen sink because the kitchen sink is higher because if you put your arms above your heart that induces tachycarida.
“So washing and standard hygiene is pretty affected, and when it comes to preparing meals I have a perching stool in the kitchen that I’ve modified to allow me to put my feet up otherwise blood will pool at your feet.”
“I’m fortunate that a lot of people with POTS do actually faint with it when they stand up, but I’m managing at the moment to sit down as soon as I feel dizzy.
“As far as going out, I’ve only recently been able to go out and even then it’s not very far.
“I have one of those old lady trollies with a seat and I’m trying to build up stamina, so I’m starting to take small walks round my village.”
Ms Murray talked about the difficult time she went through trying to get a diagnosis for the condition, saying that in the end she diagnosed herself.
She said: “I went through three doctors before I got one that actually listened to me.
“At first they told me it was stress-related and to go and meditate, so to appease them I started to do meditation and it didn’t make any difference.
“Another GP gave me an inhaler and said it was asthma which just made things worse.
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“I started looking into it myself, from the symptoms I had POTS came up and the only thing that gave it away was the increase in heart rate.
“luckily the third GP suggested it was POTS and the only reason she knew was because she’d diagnosed two other people with it and the other doctors I had spoken to didn’t even know about it.”
With the news that long-Covid could shine a new light on the condition, Ms Murray said she was “hopeful” but does not think it will make a big difference.
She added: “It’s difficult really, there’s not a great deal of research for people with POTS, and as awful as this sounds, Covid has been a blessing because a lot of people have developed long-covid and one of the symptoms of long-covid is POTS.
“I hope that Covid will shine a new light on it, a lot of doctors dismiss it and don’t believe that it exists, and the only way to get a diagnosis is to be strapped to a table and tilted.
“I’d really hope that they actually do something about POTS and they do further research into it but the sceptic in me doesn’t think it’ll make any difference.
She concluded: “When I got my diagnosis there was a lot of anger, because I’d had to diagnose myself, but there was also a sense of loss, because the life that I had had gone, and it’s trying to do what I can now to get some sort of normality back to my life.
“I really hope I can see some more improvements with my POTS next year because I think I’m at a plateau, and I think I need more help, but where I’m going to get that from I don’t know.”
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Keely Potts from Bishop Auckland, is another person living in the North East suffering from the lesser-known condition.
She said suffered for many years with bad heart palpitations, and now her main symptom was sometimes “excruciating” chest pain.
Ms Potts added: “The amount of times I’ve had to go to A&E because I’ve wondered if it was POTS or something else.
Everyday is different, some days I’m okay and some days it feels like my heart is going to pound out of my chest.
“Lifestyle changes have helped the most, it started after I had a traumatic miscarriage, so with my hormones and everything that was a big trigger for me.
“Now I have them under control, it does seem to be a lot better, but diet plays a massive role, so making sure I have plenty of salt and plenty of fluid.
“I try to drink about three-litres of fluid a day, the times I’ve been in hospital is when I’ve let my fluids slip and so I’ve been dehydrated.
She agreed that she hopes Covid will bring more research into POTS.
She said: “I’m hoping that Covid will bring some more research to POTS, I’m definitely hoping so.
“I think it’s fantastic that Dr Sanjay is pushing it to be honest, he’s an incredible doctor and I think he’s put so many POTS patient’s minds at risk as well.”
Jasmine Rahman, originally from London, said her POTS became very bad during her time at Durham University.
Ms Rahman said she, among others, was really active in secondary school but started collapsing on the Hockey field.
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During her time at Durham University in 2010 she said she broke her arm after collapsing and falling down some stairs.
She said: “That’s when they started doing some more investigations, because it’s not normal to be collapsing as often as I was.
“They then realised the issue was potentially something else.
“When I was in London, because that’s where my parents were based at the time, I collapsed on the tube, and I ended up at St Thomas’s hospital.
“I couldn’t stand up without collapsing and they put me on a tilt table test, one of the main tests for POTS, and then figured out that was what was causing all of my collapses.”
Ms Rahman revealed that medication had helped her condition a lot as well as lifestyle changes.
She added: “It’s got to the point where I’ve had head injuries, I’ve broken my writs a couple of times, because they’re quite severe and serious collapses that I have.
“I’m now in a place where I’m able to manage day to day, I take longer to get through my postgrad studies, but I just finished law school and that took me a bit longer because I had to have the pacemaker surgery and took time off from study.
“I try and live as normal a life as I can, it’s all about managing your health, managing your energy and trying different medications out.
Ms Rahman was also hopeful that Covid would reveal more about the condition and having more understanding about it “is definitely a good thing.”
She said: “My viewpoint on it is that cardiologists locally need to be more aware so they can treat people locally, because you can’t send everyone to London.
“There are definitely some people who need to be seen by specialists, but a lot of the treatment can be done on a local level.
“The links between long Covid might mean that there is more pressure on services, and that’s definitely how it has felt so far.
“The other challenge is that because POTS goes alongside other medical conditions, and all of these medical conditions are process of elimination conditions, I think that naturally makes certain Doctors quite sceptical about diagnosis.
Because it’s not a black and white medical condition, it requires more digging which takes time and when you have a long waiting list the cardiologist point of view is that they don’t have the time when they have patience who need heart surgery or a heart transplant.
Ms Rahman concluded by saying: “Something I would say to people who may be suffering from POTS is that medicine doesn’t cure it just eases symptoms.
“The acceptance that you’re not the same as your previous self takes a lot of time for people.”
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Sammy Jones who lives in a small village called Banks in Lincolnshire but travels to see Dr Gupta in York said the condition had “severely” affected her over the last few years and she is now a wheelchair user as a result.
According to Ms Jones, POTS has affected a lot of different systems so much that she didn’t “really know where to start.”
She said: “Diagnosis was very daunting, because so many people brushed it off and didn’t know what they were dealing with.
“I was at a local cardiac hospital and went through testing and did a load of scans as well and different things, they couldn’t understand how my heart was going so quick.
“In the end I found Dr Gupta on social media and managed to get a referral from my GP as he was the only person who I could see who had experience in POTS.
“He’s been an absolute angel honestly and he always leaves a smile on my face, and with him I managed to get my diagnosis within a matter of months and then he started me on medication.
Ms Jones said it would be said if it would take long-covid and people becoming “really ill” to get more research into POTS.
She added: “I do think it will shine a new line on it, they just need to research it and get more people in to study it.
“At the minute, I go to A&E and they write it down and I have to spell it out for them, and I they don’t really understand what it is.
I think as soon as it’s more widely researched and understood there’ll be more people diagnosed with it as well.
Ms Jones runs her own Instagram called “sammysdysautonomiajourney” where she shares her POTS progress and her lifestyle with others.
She said although sharing her journey was “a bit scary” she loves doing what she does and talking to like minded people.
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She said: “Having my life on social media is a bit scary, I never really thought it would end up like this and I was just using it to talk to people who understood it.
“I really enjoy it and I love doing what I do and I love sharing, I get a lot of messages from people asking about things they can do to help.
“I think the longer you have something you learn your own little ways of helping POTS and it might just help someone else too.
“When I first got diagnosed I didn’t know anyone, so it’s nice to be a small part of that, be part of giving a tip to others to help get through it.
She concluded with: “The medication Dr Sanjay has put me on has definitely made a difference, I still have the symptoms and I do still faint, but I’m also in a very different place that I was in three years ago, so there’s always that.”
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