Thread by @drclairetaylor

Patient to cardiologist:
‘I’d like to discuss POTS’❤️‍🩹
Cardiologist
‘No,there is FAR TOO MUCH POTS around right now. DO NOT google it. There is no treatment anyway’❌
Patient🤨

Oh my word
There is a lot of POTS around due to COVID wrecking autonomic systems
There IS treatment✅

This is my absolute pet hate.
POTS has went from rare to common.
Due to Covid. 🦠
It is extremely disabling.
It makes people exercise intolerant.
It gives people cognitive symptoms due to reduced blood flow to the BRAIN🧠
This person has to work lying down
Why can’t they ask?

It’s 2024. It’s time we realised patients often know what’s wrong with them.
There is google.
But also this platform. Facebook.
Patient support groups. Access to journal articles.
We should not tell people off for researching their own symptoms.

If they are right about the diagnosis empower them.
That’s fantastic they have taken control of their own Health.
If the diagnosis isn’t correct explain why (Nicely)

But when it comes to POTS most patients know more than doctors actually.
How ironic in this case the doctor is clearly frustrated at how many people have POTs. Join the dots. 🦠
And there are very few services.
None in Scotland

If someone has long Covid and their heart races when they stand up or do anything,there is a very good chance it’s POTS.
There is treatment,and although it may mean trying a few different meds to get the right one, it’s worth it.

POTS is essentially blood in the wrong place. On standing up the body has to move blood from the chest cavity to the brain. Instead it’s in the lower half of the body. Feet often go purple which can be alarming, but is just a sign of the abnormal physiology.

As the blood is not getting to the brain as normal, the brain is smart and tells the heart to beat faster to get the blood moving. ❤️‍🔥
There is release of adrenaline and cortisol. These are not always nice and can make people feel shaky and anxious. 🫨

The body will keep doing
This as long as the blood flow to the brain is lower then it should be.
People can feel dizzy, but not always. More often it’s feeling sick, fatigue,fuzzy head, sweaty, leg weakness and heart racing

In extreme circumstances, the brain will make
People faint to restore the blood flow to the brain. It’s smart. 😎It’s like a cut out switch. Everything that happens in POTS is from the body trying to protect the brain.

Around 40% of long Covid patient have POTS.
Many ME/CFS patients have POTS
EDS patients can have POTS
Some people just have POTS
40% of 2 million with LC is 800,000 people. Plus all of the above.
At least 1 million people have POTS in the Uk. 1.5% of the population.

How does that compare to other diseases?
COPD- 1.2 million 🫁
Multiple sclerosis- 150,000
Asthma 5.4 million
High blood pressure 14 million
Stroke survivors 1.3 million

So, it’s pretty prevalent.
Yet- no one wants to speak about it. 🤷🏻‍♀️
In Scotland there is no POTS pathway on the NHS.
Now people are being told by doctors not to even mention their disabling potential pots because too many people have it?? 🧐

If the number of people with long Covid doubles to 4 million ( I’m sure it will)
Best estimate of POTS will be 1.6 million.
If prevalence was even slightly higher at 50% that would be 2 million.
Plus all the patients who have POTS separate to long Covid.
Millions.

And we have no services❌
No training in how to diagnose or treat it ❌
Patients can’t even get doctors to test for it as they seemingly don’t want to talk about it❌
It’s a real condition-why would the autonomic system dysfunctioning not be of interest?It’s pretty important!🫀

We have a disease that many doctors don’t believe is real, that is affecting over 1 million people
As the doctor says- there’s a lot of PoTS around.
Can we at least try to help people?
For more info visit website. They have info for patients and medics.pots.Uk

For anyone wondering what PoTS is- it’s not something you cook with. It’s postural orthostatic tachycardia syndrome. Heart rate increases on standing is a very basic description. It’s a multi system illness& sometimes people need to use a wheelchair for mobility

Covid can infect or
Inflame the vagus nerve. It can damage the nerve fibres that respond to signals. It can damage the blood vessels so they no longer constrict on standing. It can cause the immune system
To attack the body.

The notion that a virus that can wreck an autonomic system is mild is a major mistake. It would be like turning your car on and all the warning lights flashing that the electrics are broken. You wouldn’t be able to drive it 🚗

Can you imagine your career being an athlete and getting POTS? You would struggle
to exercise.
It’s already happened.



espn.co.uk/football/story…
washingtonpost.com/health/2024/04…

More



my.clevelandclinic.org/patient-storie…
chronicallysalty.com/2019/03/03/ath…

A reminder that children can also get PoTS

uhhospitals.org/blog/articles/…

We are in another surge of a mutated Covid- each mutated version seems to be more immune evasive than the last (meaning it’s harder for your immune system to recognise it as Covid)

I urge anyone who relies on being able to stand up for work or sports- please try to
avoid Covid

You don’t always have to follow the crowd- the crowd is often wrong. 😑
As the old saying goes- if everyone was jumping off a cliff and told you to do it, would you?⛰️
Protect yourself. No one else will.

No one will pick up the pieces of your broken life.
You may be told not to talk
About your POTS symptoms because either the doctor has heard too much about it recently, or they don’t believe in it
The cavalry isn’t coming if you get sick.
Anyone can get long Covid and PoTS/end