Lorna Nicholson, UK Chair for support and awareness charity PoTS UK, tells us more about this debilitating, yet little known condition, and shares some top tips for those affected by PoTS.
What is PoTS?
Postural tachycardia syndrome (PoTS) is due to an abnormality in the functioning of the autonomic (involuntary) nervous system on upright posture. Symptoms commonly include fatigue, dizziness or near fainting, and palpitations/rapid heart rates. Approximately 50% of patients actually faint. Those affected tend to be women aged 15-50 years old, however, men are affected too. It is thought that PoTS may affect 0.2% of the population, but the true incidence is unknown.
PoTS can be an awfully debilitating illness, and a number of those who are severely affected are house, or even, bed bound. Many are unable to work and struggle with daily functioning. Thankfully, symptoms can be helped by medication and lifestyle changes; nevertheless, despite improvement, many people continue to have symptoms for years or even for their entire lifetime.
PoTS and Pain
Approximately 50% and possibly more of people with PoTS also have Joint Hypermobility Syndrome (JHS) (also known as Ehlers-Danlos -hypermobility type). Particularly for this group of PoTS patients, pain can be significant due to laxity of joint ligaments. Those with PoTS, and without JHS, can also experience body pain.
Many PoTS UK patients report that the weather affects their symptoms: joints tend to ache more in damp and cold weather, and symptoms of PoTS can worsen with heat.
Tips for managing PoTS
Key tips for managing PoTS include:
– Make sure you seek appropriate medical advice early on.
– Ensure you always have adequate water and salt intake.
– Identify your triggers and avoid them where possible such as certain medications, heat, standing still for too long.
– For those who faint, sit or lie down as soon as you feel faint and raise your legs in the air.
– Take regular exercise.
Who are PoTS UK?
PoTS UK started 10 years ago with a Facebook group run by individuals with the condition to help support each other. From here we identified the need to provide an evidence-based website to support those affected and to help raise awareness of the condition. The charity is run by four trustees, all of whom have a medical background and either have PoTS or have family members who are affected.
PoTS UK is working on raising awareness amongst medical professionals by writing articles for academic medical journals, and speaking at conferences and in webinars. We are currently coordinating the development of national guidelines for supporting the best management of PoTS.
PoTS UK offer patient support via email, run a Facebook page for people with PoTS and their carers, and support patient meetings, where people with PoTS can meet face-to-face and share their experiences.
Further information about PoTS and the charity can be found on our website http://www.potsuk.org
You can hear first hand what it’s like to live with PoTS, and other debilitating conditions, by reading Cloudy participant Zoe’s story.
Pots blog Lorna Nicholson, UK Chair for support and awareness charity PoTS UK, tells us more about this debilitating, yet little known condition, and shares some top tips for those affected by
Read Our Patient Stories
Some of our members have shared their experience of PoTS. Stories describe how their PoTs began and the road to a diagnosis. Sharing your story helps others to find the best way forward when confronted with the difficulties that PoTS presents.
If you would like to share your story with us please get in touch .
Never stop trying to do everything in your individual power to move forward.
Yes, things have changed but I still wake up happy and grateful daily for everything I have.
All of us have a light within вЂ“ and sometimes it takes the darkness to pull it out.
Everyday may not be good but there is something good in every day.
The future is as bright as you believe it will be.
IвЂ™m positive about my future. IвЂ™m learning patience and building my future with my POTS gift.
40 Doctors, hundreds of appointments and tests, being told ‘it’s all in your head’ and a misdiagnosis of Chronic Fatigue Syndrome. I fina.
“PoTS isn’t a burden, it’s a key. Use it to open the door to things that you want to achieve”
Hi, my name is Katherine and I have PoTS. I first started experiencing symptoms (fatigue, tachycardia, dizzy spells and nausea etc.) in J.
Emily – I wonвЂ™t let PoTS stop me anymore
Hi, my name is Emily. IвЂ™m currently a college student studying English Literature, Sociology and Geography with the hope to go on to un.
Zoe is under the care of Stowe her Medical Detection Dog who keeps her safe 24/7 and alerts her to a PoTS episode before she is symptomat.
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Glandular fever, Chronic Fatigue Syndrome and PoTS – A ParentвЂ™s Perspective
Ellie: Even though it may seem dark there is always light.
Hi my name is Ellie and IвЂ™m a nursing student at Surrey University. I have been diagnosed with PoTS for almost four years now and it is.
Jess: DonвЂ™t give up youвЂ™ll get there in the end!
Hello my name is jess IвЂ™m 23, I first started with pots symptoms around 12/13 feeling constantly tired my mum even said I could have fe.
Molly: My journey with PoTS
Hi, IвЂ™m Molly; IвЂ™m 20 and have had PoTS since I was 14. The last six years have been quite a journey; the strangest thing is getting.
George: Never let your POTS stop you from achieving your goals
My name is George, I am 21 and currently a student at Loughborough University. It all started when I contracted glandular fever in 2013. .
Laura: Living life to the full in spite of chronic illness
I can live my life with this condition and make it a good life, full of great times- the stuff of wonderful memories, so when I’m old in .
Phoebe: The chance of choice
Phoebe here currently sat in Rio De Janrio counting my lucky stars. I’m four months into travelling while managing being in remission fr.
I guess I have always been the outdoors type, if I’m outside I’m a happy guy! Five years ago a few of my best friends were doing a ski se.
Maria: A little bit of hope at the end of a very hot week!
I’ve been wanting to post something on this page for a while. This to me is a deeply personal post but I hope it helps someone who is str.
Flora: Raising awareness about the connection between PoTS and poor sleep/UARS. My Personal Story of Recovery
My name is Flora, I am a 32 year old PhD Student and I would like to share my personal story of how I recovered from PoTS/OI, as I believ.
Becky: What doesn’t kill you makes you stronger.. literally!
My name is Becky Lambert and IвЂ™m currently studying at The University of Leeds. Growing up I was always very active and agile; gymnasti.
Laura: How Exercise Has Helped Me
My name is Laura Maple; I am 22 years old and am currently a third year biomedical science student studying at The University of Sheffiel.
It all began in October time of 2014, I was studying for my diploma in Computer Networking & Architecture. I had always been fit and wel.
Aaron: My Experience with PoTS
Late 2012, when I was 11 years old, I started getting a series of reoccurring migraines, which would last a short period of time. I thou.
Emma: A day in the life of a PoTS mummy
Imagine struggling to get out of bed every morning, like you have a terrible hangover, you just donвЂ™t want to open your eyes, but you h.
Ellie: The Start of a New Beginning
My PoTS story all began with me having a Tonsillectomy. Unfortunately, my recovery didnвЂ™t go smoothly, and found myself back in hospita.
Jenna: ItвЂ™s just a bad day вЂ“ not a bad life!
My Name is Jenna Robinson, I am 25 from a small village near Omagh in Co Tyrone. Within the past year and a half I have been diagnosed wi.
Stefania: “Stars can’t shine without darkness”
It was a Thursday morning in November and I got up to get ready for school. I began to feel unusually tired, dizzy but in a way I’ve neve.
Molly: Let PoTS empower you, not overpower you
I wanted to share with you my story of PoTS, to inspire any suffers out there that endurance, courage and bravery are the key to a health.
Zoe: Acceptance is the hardest part and until you learn to accept, you’ll never move forward with your life.
March 2014 my life changed forever. A full time working mum, with two teenagers, two dogs, a wonderful husband and life. My life was live.
Laura: Every day may not be good. but look for something good in every day
Up until April 2015, I lived a pretty normal life. I have suffered with chronic headaches for the last 18 months and have had high blood.
Helen: Cycles for charity with PoTS
My PoTS story started in July 2012, 6 weeks after getting married. My heart was constantly racing and I felt so tired.
Madeline Dyer: PoTS won’t stop me being a writer!
From a young age, I always had some strange symptoms–symptoms that doctors could never provide an answer for, and symptoms that many bel.
Becky: If it wasn’t for the darkness we wouldn’t see the stars
I am 23 years old initially was diagnosed with low blood pressure and syncope in 2012, and this year my diagnosis was changed to PoTS as .
Christy: It took an admission essay for a teaching course to make me realise how far I have actually come with PoTS.
In hind sight most people wouldn’t change what they have experienced throughout their lives. Some people argue life experiences make a pe.
Joanna: The only way is up!!
My name is Josey, I am 21 years old and have suffered with PoTS since the age of 13. I am finally in a place in my life where I am able t.
Mary: It can only go up from here !
I am 18 years old and have been fully diagnosed with PoTS for a year now. When I was first diagnosed I did so much research into it and o.
Chris: The DMX DJ
Where do I start. I used to be so active, working on the funfair, working in my local nightclub as the lighting technician and warm up .
Danielle: Coping with Pregnancy
Hi I am Danielle I am 23 years old and had good health until I started collapsing at the age of 20 were I was diagnosed with PoTS and Ina.
Abbie: Invisible Friends
My name is Abbie, I am almost 24 years old and I would like to share my story with you all. I was a relatively well child but did suffer .
Abigail: Fundraises for PoTS UK
Everyone’s story of PoTS is completely different and mine is no different to that. I just woke up one day, 21st May 2013, tried to get ou.
Lucy: Making Progress
I was an active 47-year-old mother of three teenagers, working as a university professor and playing regular competitive tennis when I fe.
Kristina: Incorrect diagnosis of PoTS
I am Kristina, I am 28 years old and this is my story of my struggle with PoTS. Going from my highest to my lowest within the space of a .
I expect my story begins like most. I was 23. I was working as a nurse in a job I loved, surrounded by great friends and family. Life was.
Johnny: PoTS has changed my life but not over taken it.
Hi, my name’s Johnny, I’m 26 and I’m from Hertfordshire. I wanted to share my story purely to share it with others who also have been af.
Jenny: Growing up with PoTS
Hi everyone, I’m Jenny from Newcastle & I’m 21. If my story helps just one of you, it’ll be worth sharing. My story began aged 13 when I.
I suffer from Anti-Phospholipid Syndrome and Idiopathic Chronic Pancreatitis, but this didn’t explain my symptoms. I had been investigate.
Clare: Adjusting daily life with PoTS
I was diagnosed with PoTS and Ehlers-Danlos syndrome (EDS) roughly two years ago now. Like many of the stories on this website, I too ha.
Jennifer: The Prom
The thought of the prom excited me as well as chilled me to the bone. I loved getting dressed up, putting on my make-up and doing my hair.
Home schooling with PoTS and EDS
I have learnt to look at the world as a huge classroom and adapt my thinking to the fact that a building does not define the word “educat.
Lauren: Piecing the jigsaw together – EDS and PoTS
As a child I was always accident prone, would often complain of joint pain and had severe asthma also. My mum tried to convince doctors t.
Kathryn: From Car Crash to PoTS – My Journey
My name is Kathryn Marshall; I am a 38 year old nurse from Swansea South Wales. I am married to Chris and have 3 children, Chloe 9yrs, H.
Laura: From psychogenic seizures to PoTS
Throughout my teenage years I was prone to syncope but it was put down to my age. In September 2011, I became very unwell and spent a few.
Sadie: Life does get better
My name is Sadie, I am now 19 years old and have suffered with PoTS for six years. How it all started was when I was up the city shopping.
Caroline: PoTS a decade on
As everyone with POTS will know, there is no easy cure and I think that I may need to try a variety of treatment methods to find what wor.
Sam: I won’t let it stop me!
Getting the POTS diagnosis was a huge relief, just being taken seriously made a huge difference. Pregnancy and breastfeeding were incred.
Lizzie: Teenager with PoTS
My name is Lizzie, I’m sixteen years old and this is my story. I’ve had POTS for quite a while now, about four years, but it’s only been.
Michael: Living with a potsy
As the partner of a POTS sufferer you have to accept that it will impact on all areas of your life. No matter how normal your partner loo.
Amy: Mother of two
I started suffering from POTS symptoms around the age of 14. I always felt tired, out of breath and seemed extremely unfit when it came t.
I would like to share my story of POTS. This is the first time I have ever sat and written down my story so perhaps this is to help me as.
Catherine: Fainting doesn’t have to get you down
My name is Catherine, I am 24 and I live in Surrey with my partner. Until April 2010, I lived a perfectly normal life, and enjoyed my job.
Christina: Developing PoTS during pregnancy and my new life
I developed PoTS within pregnancy of my youngest child. I went from being fairly active and fit, to barely being able to climb the stair.
Lorna: Ski Instructing with PoTS
Sounds crazy. I know it is, but its great fun and I refuse to let POTS get in the way of my fun. It’s a struggle, but worth it. Sounds.
Liam: My Short Diagnosis Novel
After Education, I set up my own business as a self-employed photographer back in 2007 and have been working as an outdoor photographer s.
In July 2008 I started to feel very strange. Not the kind of strange that I was getting a cold, but something I couldn’t explain. It was .
Providing information and support about postural orthostatic tachycardia syndrome (PoTS) for sufferers, medical professionals, family, and friends – aiming to raise awareness.