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.
Weβre 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 Iβm 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, Iβm 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...
Help us create our PoTS Awareness Day videos π₯
Weβre looking for people from the PoTS community to send us short videos and/or photos to feature in our Awareness Month social media videos.
You donβt need to be confident on camera and you donβt need to edit anything, just ...film or take your photos and send them to us.
PoTS UK Volunteer Ellen will do the editing!
Sheβll put the videos together and send the finished version back to you to look at and choose whether youβre happy for us to use it.
Weβre looking for contributions for:
π 3 things I wish people knew about PoTS.
Share something you wish people understood about living with PoTS.
π What I wish Iβd known when I was diagnosed.
Share something you know now that you wish youβd known then.
π Why awareness matters.
Show us why raising awareness of PoTS is so important.
π PoTS Myths VS Facts.
Help us bust common myths and share the facts.
Please check anything factual against the PoTS UK website.
π This is what PoTS looks like.
Show us a short snippet of your day, from struggling with daily activities to living a more active life.
πΉ These videos need to be filmed HORIZONTALLY.
π I can do thisβ¦ BUT this is what you donβt see.
Show us what goes on behind the scenes, preparing for an event, pacing, resting, hydration, medication, or recovering afterwards.
π My PoTS Positives.
Share something positive that has come from your PoTS journey, a hobby, friendship, new career, achievement or something youβve discovered about yourself.
You can film yourself, film something related to what youβre talking about, or send photos with a voiceover/written explanation.
Your contribution doesnβt have to be perfect. We want real experiences from real people in the PoTS community.
If youβd like to take part please email π±π²π»πΆππ²@π½πΌππππΈ.πΌπΏπ΄ by Monday 7th September, for further information.
Thank you for helping us show the reality of living with PoTS and why awareness matters.
#RaisingAwarenessOfPoTS #PoTSSymptoms #LivingWithPoTS #WhatPoTSLooksLike #PoTS
PoTS UK Online Peer Support Groups β 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:
ποΈ Tuesday 1 September | 1pm
β Afternoon ...Session β open to all
ποΈ Tuesday 1 September | 7pm
π Newly Diagnosed / Awaiting Diagnosis
ποΈ Wednesday 2 September | 7pm
π¬ Open to all over 18
Our peer support groups are a chance to share experiences, meet others and feel less alone. Theyβre informal, friendly and run by volunteers with lived experience of PoTS.
π Find out more and register: https://www.potsuk.org/pots-uk-online-peer-support-groups/
Weβd love to see you there!
#PoTS #PosturalTaxhycardiaSyndrome #NewlyDiagnosedWithPoTS #PoTSSupport #PeerSupport
A quick guide for uni prep with PoTS π
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:
π ...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.
Weβve put together a varied ...programme covering topics we hope will be helpful and relevant to the PoTS community, including:
βͺοΈNavigating Healthcare & Advocating for Yourself
βͺοΈPoTS & Employment
βͺοΈNewly Diagnosed: What I Wish Iβd Known
βͺοΈPoTS & University
βͺοΈUpcoming Research into PoTS & Hope for Future Management
βͺοΈPoTS & Nutrition/Hydration Strategies
Each webinar will last around 30β45 minutes, with an opportunity to ask questions at the end.
These sessions are based on our volunteersβ 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.
π
Webinars take place throughout October, with further sessions potentially being added closer to the month.
π Find out more and register for the webinars:
https://www.potsuk.org/real-experiences-real-conversations-pots-webinars-this-awareness-month/
π We hope youβll be able to join us for these supportive and informative conversations!
#PoTSExperiences #PoTSWebinars #PoTSAwarenessMonth #PoTS #PosturalTachycardiaSyndrome
A quick guide to uni prep with PoTS π
In this video Katie @thechronicillnesshub shares about accommodation, medication and telling people.
You can learn more about managing PoTS on the PoTS UK website:
π https://www.potsuk.org/managingpots/
#PoTS ...#ManagingPoTS #UniversityAndPoTS #Accommodation #TellingPeople
π A PLACE HAS BECOME AVAILABLE! πββοΈ
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 isnβt 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 π
Fancy taking on the challenge for PoTS UK?
π§ Email denise@potsuk.org with your contact details if youβd like to run for us.
One amazing challenge. One chance to make a difference. π
#GreatSouth10 #PoTSUK #RaisingAwarenessOfPoTS #Fundraising #RunningForPoTSUK
A quick guide for uni prep with PoTS π
Thank you Katie @thechronicillnesshub for sharing her tips on attending university with PoTS. Today she shares about DSA (Disabled Students Allowance) and Learning Support.
Sheβll 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:
π https://www.potsuk.org/managingpots/attending-university-with-pots/
#PoTS #ManagingPoTS #UniversityWithPoTS #DSA #LearningSupport
Shop Update π
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 π
Could you help PoTS UK for just Β£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.
π Become a ...regular donor via https://www.justgiving.com/charity/potsuk
#DonateToPoTSUK #RegularGiving #SupportingThoseWithPoTS
