Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity.
PoTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down).
Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headaches, and are associated with a persistent increase in heart rate from the lying to upright position.
We’re here to offer help & support
Some of our members have shared their experience of PoTS. Their stories describe how their PoTs began and their road to a diagnosis, and we hope that sharing them will help others to find the best way forward when confronted with the difficulties that PoTS presents.
My name is Lexi, I am 14 years old and I live in the UK. I was officially diagnosed with PoTS a month ago, but looking back, I realise I have been...
My name is Phoebe, and I’m 25 years old. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) in March 2026 after three years of...
I’d like to share that I’m so proud of what my daughter, Rachel from North Uist in the Outer Hebrides, has achieved. 23 year old Rachel...
My name is Jaime, I’m 29 years old from Atlantic Canada. May 18th, 2022 is the day I got COVID, and the day my life changed. Before this, I worked...
PoTS UK Online Peer Support Groups – W/C 31st August
Looking for a safe, supportive space to connect with others who understand life with PoTS?
Join one of our volunteer-led online peer support groups this week:
🗓️ Tuesday 1 September | 1pm
☕ Afternoon ...Session – open to all
🗓️ Tuesday 1 September | 7pm
💜 Newly Diagnosed / Awaiting Diagnosis
🗓️ Wednesday 2 September | 7pm
💬 Open to all over 18
Our peer support groups are a chance to share experiences, meet others and feel less alone. They’re informal, friendly and run by volunteers with lived experience of PoTS.
👉 Find out more and register: https://www.potsuk.org/pots-uk-online-peer-support-groups/
We’d love to see you there!
#PoTS #PosturalTaxhycardiaSyndrome #NewlyDiagnosedWithPoTS #PoTSSupport #PeerSupport
A quick guide for uni prep with PoTS 💜
In this video Katie @thechronicillnesshub shares about Freshers Week and preparing for a flare.
You can find further information about managing PoTS and Education on the PoTS UK website:
🔗 ...https://www.potsuk.org/managingpots/attending-university-with-pots/
#PoTS #ManagingPoTS #UniversityWithPoTS #DSA #LearningSupport
Real Experiences, Real Conversations: PoTS Webinars this Awareness Month
Throughout October, Dysautonomia Awareness Month, our wonderful PoTS UK volunteers will be hosting a series of webinars sharing their own experiences of living with PoTS.
We’ve put together a varied ...programme covering topics we hope will be helpful and relevant to the PoTS community, including:
▪️Navigating Healthcare & Advocating for Yourself
▪️PoTS & Employment
▪️Newly Diagnosed: What I Wish I’d Known
▪️PoTS & University
▪️Upcoming Research into PoTS & Hope for Future Management
▪️PoTS & Nutrition/Hydration Strategies
Each webinar will last around 30–45 minutes, with an opportunity to ask questions at the end.
These sessions are based on our volunteers’ personal experiences and will not include medical advice. PoTS affects everyone differently, so please speak to your own healthcare professional about any concerns relating to your symptoms or treatment.
📅 Webinars take place throughout October, with further sessions potentially being added closer to the month.
👉 Find out more and register for the webinars:
https://www.potsuk.org/real-experiences-real-conversations-pots-webinars-this-awareness-month/
💜 We hope you’ll be able to join us for these supportive and informative conversations!
#PoTSExperiences #PoTSWebinars #PoTSAwarenessMonth #PoTS #PosturalTachycardiaSyndrome
A quick guide to uni prep with PoTS 💜
In this video Katie @thechronicillnesshub shares about accommodation, medication and telling people.
You can learn more about managing PoTS on the PoTS UK website:
🔗 https://www.potsuk.org/managingpots/
#PoTS ...#ManagingPoTS #UniversityAndPoTS #Accommodation #TellingPeople
🏃 A PLACE HAS BECOME AVAILABLE! 🏃♀️
Due to unforeseen circumstances, we now have 2 places available for the Great South 10 Mile Run on Sunday, 18 October 2026, in Southsea, Portsmouth.
We know 8 weeks isn’t long to prepare, but this is a fantastic opportunity to ...take on the iconic flat 10-mile course, with stunning coastal views and historic landmarks including HMS Victory - all while raising awareness and supporting PoTS UK 💜
Fancy taking on the challenge for PoTS UK?
📧 Email denise@potsuk.org with your contact details if you’d like to run for us.
One amazing challenge. One chance to make a difference. 💜
#GreatSouth10 #PoTSUK #RaisingAwarenessOfPoTS #Fundraising #RunningForPoTSUK
A quick guide for uni prep with PoTS 💜
Thank you Katie @thechronicillnesshub for sharing her tips on attending university with PoTS. Today she shares about DSA (Disabled Students Allowance) and Learning Support.
She’ll also be sharing more in upcoming videos about :
- ...Accommodation
- Medication
- Telling others
- Freshers Week
- Preparing for a flare
You can find further information about managing PoTS and Education on the PoTS UK website:
🔗 https://www.potsuk.org/managingpots/attending-university-with-pots/
#PoTS #ManagingPoTS #UniversityWithPoTS #DSA #LearningSupport
Shop Update 🛒
Due to staff annual leave, orders placed through our shop from now will be posted on Tuesday 1st September.
Thank you for your patience and understanding 💜
Could you help PoTS UK for just £2.50 a month?
A small regular donation can help us continue providing support, information, education and awareness for people living with PoTS.
Every donation, big or small, makes a difference. Together, we can do more.
👉 Become a ...regular donor via https://www.justgiving.com/charity/potsuk
#DonateToPoTSUK #RegularGiving #SupportingThoseWithPoTS
Have you used our PoTS Passport?
The PoTS Passport was developed to help people with PoTS communicate important information about their condition, symptoms and individual needs to healthcare professionals. It can be useful for GP appointments, hospital stays, outpatient appointments, ...dental treatment and other healthcare settings.
If you’ve used the PoTS Passport, we’d really love to hear from you!
We’re meeting in mid-September to review the Passport, and your feedback will be incredibly helpful in deciding what works well, what could be improved and whether anything is missing.
📣 Have you used it? Tell us about your experience!
👉 Complete our short feedback survey: https://www.surveymonkey.com/r/9PD7YXJ
📄 Haven’t seen the PoTS Passport yet? You can find out more and download it here: https://www.potsuk.org/managingpots/pots-passport/
Your experience could help us make the Passport as useful as possible for the PoTS community. Thank you for helping us improve it!
#LivingWithPoTS #PatientVoice #PatientSafety #HealthcareAwareness #PoTSPassport
