Hello lovely people,
I hope you’re having a delightful day and are, you know…
upright.
If you’re new here and wondering why there is a weirdly-1950s redhead girl lying on the
floor: hi, I’m Jessica and I have PoTS.
What on earth is that and how can you tell if you have it?
Well keep watching to find out!
PoTS symptoms can be frightening and uncomfortable so I wanted to make something to calmly discuss
symptoms you may not even realise mean something and hopefully make you feel better.
In this video I’ll be giving you a brief idea of the condition,
[ironically] Thanks Tilly!
In this video I’ll be giving you a brief idea of the condition, how it affects people,
signs that you might have it and where to go to get diagnosed.
If you’re completely new to this topic, I suggest watching my earlier video, which
I’m going to link in the description as well as in a card above.
If you enjoy lighthearted and amusing videos with an educational slant then make sure you’re
subscribed!
And remember to click the bell icon as that’s the best way to be notified of new content.
Much love to my notifications squad, I see you!
So, as I mentioned, about a year ago I made a video explaining what Postural Orthostatic
Tachycardia Syndrome is in detail and since then one of the most frequent questions I’ve
been asked is: “how do I know if I have it”...?
To which able bodied people may respond:
“Of course you know if you have it!”
[blows raspberries]
God I wish bodies worked that way!
Unfortunately sometimes it can be hard to judge these things… and that can be very
upsetting.
So whilst I can’t reply to every individual message and email about PoTS, I hope this
video can be of some comfort to you.
- you’re don’t great darling, don’t worry.
Even more confusing is that each case of PoTS is different.
You can develop PoTS suddenly or it can come on gradually over time.
Sometimes it can develop suddenly after a viral illness or traumatic event, or during
or after pregnancy.
In many cases, the cause of the problem with the nervous system in people with PoTS is
unknown.
- not helpful
The most common age range for PoTS is 13-50 and it occurs predominantly in women with
5 women for every 1 man being affected.
Teenagers who develop PoTS often find that it gradually disappears a few years later.
So yay!- I told you it’s going to be okay
Although if you develop it as a result of a separate condition that’s obviously going
to be a different story.
It’s commonly found in association with:
Poisoning!
Either through alcohol or certain metals.
Or inheriting a faulty gene that causes too much of the "fight or flight" hormone noradrenaline
to be produced
Joint hypermobility syndrome-
- hi, that’s me.
- an inherited condition that results in unusually flexible joints and abnormally elastic blood
vessels.
Other underlying conditions such as diabetes, amyloidosis, sarcoidosis, lupus, Sjogren’s
syndrome or cancer.
Aren't you just impressed I said that?
And our old friend Chronic Fatigue Syndrome.
If you have one of these things, then yes, this video is indeed the place for you.
But even if you don’t you may still have PoTS.
Postural orthostatic tachycardia syndrome is a condition that affects the blood flow
in your body.
People who have it note that our circulatory systems go wild at the merest invitation,
particularly when standing or sitting up (that’s what orthostatic means)
Primary symptoms of an orthostatic intolerance are lightheadedness, fainting, and an uncomfortable,
rapid increase in heartbeat.
I spent years trying to explain to various doctors that I could FEEL my heart beating
too fast and that it was sometimes so bad and painful I felt like I was about to have
a heart attack… to which I was told that all people sometimes suddenly become aware
of their heart beating but that it was normal and I was making too much of a big deal about it.
As if I somehow couldn’t tell my heart was faster then than at other times.
It’s MY heart.
It’s… in MY body.
I think I know what it feels like.
By why does it happen?
Well, normally when you sit up or stand, gravity pulls some of your blood down to your belly
area, hands and feet.
In response, your blood vessels quickly narrow and your heart rate increases slightly to
maintain blood flow to the heart and brain, and prevent your blood pressure dropping.
Amazingly, this is all done without needing to think about it by the autonomic nervous
system – the nervous system in charge of automatic body functions.
It’s the same thing that keeps you breathing without you having to consciously think ‘breathe’
every two seconds and then stops you from dying when you get really engrossed in the
Sims and forget.
When you have PoTS, the autonomic nervous system has affectively just been given the
latest Sims 4 Expansion Pack and has better things to do with its time.
There's a drop in blood supply to the heart and brain when you become upright and the
heart races to compensate for this.
For me though, POTs isn’t just about the motion of standing and the change in state.
It also hits me as a decrease in blood pressure over time.
So I’m fine for a little bit but then slowly feel the blood just draining away from my
head and ooohhh…
yep… there’s my face on the floor.
There are actually various forms of POTS so if you don’t have all of the signs I’m
about to list, that doesn’t mean you 100% don’t have it, you may just have a type
that doesn’t involve that and please remember that all cases are different.
I think it would be really helpful if people who have already been diagnosed list some
of their symptoms in the comments along with the ones they DON’T have.
It’s so important to me that our little community is able to come together, support
each other, make people feel less alone…
Now, signs of PoTs:
[holding a pot] Well that’s a sign right there!
[giggles]
I’m so sorry I couldn’t resist that terrible joke.
I’m ashamed of me too.
1.
The most common and ‘obvious’ symptom is dizziness, light-headedness or near fainting
when standing up.
But it can also occur with prolonged sitting and, as I said earlier, for me there is that
relation with just standing up for a long time.
2.
Approximately 30% of people with PoTS experience fainting or blackouts, also known as ‘syncope’.
I have a wonderful habit of picking things up from the floor, standing and then just
-whoomp- backwards we go!
3.
Palpitations.
The sensation of your heart...
[monster foot steps] Hi Tills!
The sensation of your heart pounding in your chest.
And no, it doesn’t feel like ‘just noticing your heart pumping’ it feels like ‘oh
my god I’m going to pass out and die if my heart doesn’t calm the hell down’!
I’m also going to throw chest pain in here.
4.
Approximately two thirds of those with PoTS have orthostatic headaches which means they
occur as a result of being upright and may be caused by reduced blood supply to the brain.
Most people with PoTS also have migraine type headaches.
[ironically] Yay!
You may also be like me and have such low blood pressure that your blood doesn’t go
anywhere unless you keep hydrated to a ridiculous degree.
People often comment:
“oh you have such good skin” to which I say, “Yes, I drink 8 litres
of water a day, dirt doesn’t have a chance, it’s just blasted out of my pores!”
- I don’t know how skincare works but… yep, sounds about right.
5.
Tiredness and weakness are both common symptoms although they’re terribly hard to quantify!
I feel they’re both things that only you yourself can know… it just isn’t possible
to grasp how it feels from the outside.
6.
Brain Fog!
I have a whole video about brain fog that explains what it is so click the link in the
card above to watch that, but in brief: it’s when your brain feels so clouded you can’t
properly bring thoughts together.
7.
Shakiness.
But not just any shakiness…
You know when you catch a bug or have a horrific hangover…?
That split second before you vomit, when you feel vulnerable like your whole body is an
open scab and you know you have absolutely no control over what is about to happen?
That’s the shakiness I’m talking about… except it lasts a lot longer!
8.
If you find yourself getting short of breath after just standing up or exerting yourself
slightly… this may be you.
If you know the feeling of your lips turning blue… this is probably you.
9.
Digestive problems.
Nausea is common.
Other symptoms include diarrhoea, constipation, bloating, abdominal pain and vomiting.
Many people with PoTS are told that they have irritable bowel syndrome.
10.
Excessive glare, blurred or tunnel vision.
You may also know well something called the black curtain.
That’s when you’re in the process of fainting or about to and a dark curtain descends over
your eyes.
You may notice that feeling hot, eating, strenuous exercise and periods make symptoms much worse.
Personally, I’m slayed monthly by my period.
It’s… ruddy awful.
and unnecessary.
If these all sound like you then yes, you may have PoTS but don’t worry, in many cases
it can be treated through either diet, medication and a little gentle exercise-
Cut out sugar NOW.
You will feel much better once your body adjusts to life without sugar.
Of course, if there is an underlying cause to your PoTS finding and treating this may
also lead to symptoms subsiding.
AND as I mentioned at the start, for many people the condition merely goes away!
Hello.
A quick side note before we talk about steps to get diagnosed:
Are you just part of this now?
You may be thinking
‘gosh, Jessica’ that list of symptoms sounds a lot like the symptoms
of this other medical problem that I have.
To which I can only say: same.
It can be very confusing when PoTS is a symptom of a condition you already have or else you
have a number of overlapping conditions.
How do you isolate which symptoms fall under the PoTS heading?
PoTS is classified as secondary if you have a condition that already affects your blood
pressure, blood volume or blood sugar.
For instance: diabetes, gastrointestinal disorders that are associated with low fluid intake
due to nausea or fluid loss through diarrhea and a range of autoimmune diseases.
Prolonged bed-rest or deconditioning can set off PoTS.
PoTS can also co-occur in all types of Ehlers-Danlos Syndrome, which is a hereditary connective
tissue disorder marked by loose hypermobile joints prone to subluxations and dislocations.
Let’s move on to the steps to get diagnosed:
Firstly, see your GP or primary care physician if you think you have PoTS but bear in mind
that they might not know what it actually is so it’s wise to print out a list of symptoms
from an official government site.
NHS England has a great one.
Pretty sure it still applies in other countries because that's how bodies work
It can be misdiagnosed as anxiety or panic attacks so make sure to be clear about your
mental state at the time when asked- particularly if you have PoTS like symptoms when feeling
a variety of ways but doing the same physical thing.
I once stood up and fainted just as a teacher happened to mention homework
-not that I even heard her
and boy was it
harder to then get help at school for anything except counselling… which I really didn’t need
Once you’ve talked to your GP they will likely refer you onwards to a specialist who
can run you through a series of tests.
Some of them weird.
A diagnosis of PoTS is made if your heart rate increases by over 30 beats per minute
after 10 minutes of standing or if it increases to more than 120 beats per minute.
I would advise getting hold of a fitbit or similar so you can check your own heart rate
before going to your GP as that’s just another piece of the puzzle to help an onwards referral.
You should then have a range of tests to confirm a diagnosis and rule out other conditions,
These include:
A tilt table test where your heart rate and blood pressure are measured while lying on
a bed, and the bed is then tilted into a more upright position.
OR the active stand test when your heart rate and blood pressure are measured after lying
down, immediately upon standing, and after 2, 5 and 10 minutes
A test of your heart's electrical activity, called an electrocardiogram or ECG.
Or finally a 24-hour ambulatory blood pressure and heart rate monitoring.
This is when the hospital gives you a small device attached to your belt that takes regular
readings while you're doing normal activities.
Again though, you could just get a FitBit...
I feel like that would save the hospital money too
Remember, no matter where you are on your journey to get diagnosed, you are valid and
you are not alone.
I hope this video has been able to help in some way and that if you’re new here you’ll
consider sticking around.
Please share this video with anyone you feel could benefit, even the ablebodied people
in your life who aren’t entirely sure what this PoTS thing is.
I’ll see you in my next video
[kiss]