- Hello, lovely people,
and welcome to what may be
a rather intriguing video to watch
in that I'm not feeling in tip-top shape.
I may look all right,
due to the wonder that is makeup.
Also, you may hear some noises
because there's an eight-month-old baby in the room.
He does have a basket of toys,
but he's decided that
this is a conversational time right now.
This video has been made in partnership
with NHS Professionals
who place highly-skilled temporary workers
in NHS trust.
Dysautonomia, what fear?
What is that?
Let's talk, I, unfortunately,
can tell you from firsthand experience exactly what it is.
I wish I couldn't, but I can.
Obviously, please just bear in mind.
I am just one person who has experienced this
and everyone who suffers
from it has experiences in different ways.
Also I'm in no way, a medical professional.
I'm just sadly someone with a lot of life experience.
You may be hearing this term a lot
at the moment because it's been linked to long COVID.
Now this is people who have had COVID
and are really struggling to recover
and have been diagnosed with something very similar.
So I've had this my whole life because I have
a condition called,
postural orthostatic tachycardia syndrome.
I know, what a word.
So I'll tell you a little bit more about that later on.
But I get it because I have a connective tissue disorder
called Ehlers-Danlos Syndrome.
(baby screaming)
Exactly Rupert, exactly.
And that's what's getting me down today
'cause yesterday I stood in the cold
for a little bit, for a video
that's gonna be on my Instagram,
potentially by the time you see this video,
which oh my goodness, you're gonna love, I played football.
Yeah, me, I know.
And now all of my joints hurt.
Everything hurts, but I don't feel
like my organs can cope, but on with the video.
So what is dysautonomia?
Dysautonomia is a general term
for a group of disorders that share a common problem.
Autonomic nervous system that doesn't function as it should
which is kind of underplaying it, to be honest.
So the autonomic nervous system,
if you are a little bit confused,
understandable, is the part of the nervous system
that controls the involuntary body functions.
So these are the kind
of things your body does that you don't consciously control.
If you've ever seen
like James Bond in a movie control his heart rate.
Yeah, no, that's not,
someone in the comments are gonna be like, yes, you can.
That's an economic nervous function
because it's an involuntary thing.
Your body does it for you.
Your body breathes for you.
You don't have to consciously tell your body to breathe.
Your body controls your heart rate.
You don't have to tell it to do that.
Your blood pressure, not on you.
Digestion, do you eat food
and then specifically say to your body, digest it?
Skin temperature, your body does that for you.
Bladder function, your body tells you when to pee,
not the other way around.
And there are many,
many other functions that you just let your body do for you.
Unfortunately when the autonomic nervous doesn't work
the way it should,
it can then cause a whole host of problems.
As you can imagine, if your heart and blood pressure
aren't working the way that they should,
think about it now.
One of my main issues is that when I stand up,
my blood pressure should increase
in order to get my blood pumping
around my body, just to compensate for the change.
However, yeah, it doesn't do that.
It doesn't think these things through.
Breathing trouble, going up and downstairs.
Apparently my body doesn't think these things through.
So it doesn't change the amount that I need
to breathe when I'm going up and downstairs.
And I still breathe quite shallowly.
Dysautonomia happens when your nerves
in your autonomic nervous system don't communicate
as they should.
It just doesn't send the messages and receive the messages
or maybe the message isn't clear.
Do you then experience a variety
of symptoms and following medical conditions?
Some of the conditions caused by primary dysautonomia
include neurocardiogenic syncope,
NCS is the most common form of dysautonomia.
It could cause fainting spells that happen once
or twice in your lifetime or multiple times every day.
NCS is also called situational syncope
or vasal vagal syncope.
Then we've got my fave,
postural orthostatic tachycardia syndrome,
not my fave.
Totally kidding, don't need it.
This is a disorder which causes problems
with circulation and blood flow.
So POTS can cause your heart to beat too fast,
when you stand up.
It can lead to fainting,
chest pain, and shortness of breath.
It also gives me an irregular heartbeat
which I do not approve of and massive migraines,
because it sends my blood pressure through the roof.
Then we have familial dysautonomia.
So people inherit this type
of dysautonomia from their genetic relative.
It can cause decreased pain sensitivity,
back of eye tears, and trouble regulating body temperature.
It's more likely to Effect Jewish people
of Eastern European heritage.
So ask a lot of your Jewish heritage.
Then we have multiple system atrophy, MSA,
a life threatening form of dysautonomia,
multiple system atrophy develops in people
over 40 years old and can lead to heart rate issues,
low blood pressure, erectile dysfunction,
and a loss of bladder control,
and finally, pure autonomic failure.
People with this form of dysautonomia experience
a fallen blood pressure upon standing and have symptoms
including dizziness, fainting, visual problems,
chest pain, and tiredness.
Symptoms are sometimes relieved
by lying down or sitting.
So let's talk a little bit about NHS professionals.
Now as you know, I'm a huge, huge fan of the NHS.
Wouldn't be alive without them.
So it would be weird if I wasn't a fan
but I also have a lot
of people in my family who work with the NHS.
Now for my son, both aunts
and his uncle are doctors working in the NHS.
One of his grandfathers was a doctor in the NHS.
His grandmother was a nurse in the NHS.
Your great-grandfather was a surgeon in the NHS,
your great-grandmother was a nurse in the NHS,
and your mother is a dentist in the NHS.
So I'd love to give a special
thanks to NHS Professionals for partnering with me
on this video.
I've been in and out of hospital my whole life
and the NHS have been there for me in so many ways.
I am forever grateful to the healthcare system
we have in this country.
NHS Professionals is owned
by the Department of Health and social care
and they reinvest any supplement directly back
into the NHS.
NHS Professionals both help trust
by putting short term and long term temporary workers
in positions that they really need
and help medical professionals by avoiding burnout
by allowing them to work flexibly.
They give bank members the control
to book shifts the time that suits them
for a healthy work life balance
and provides the opportunity to earn paid annual leave.
So members can enjoy more free time.
NHS Professionals remain dedicated
to recognizing their member's contributions
and their desire to feel part of a community.
Campaigns strives to highlight NHS Professionals are there
for them at every stage of their journey and
to promote exciting new initiatives available
to their members.
Other aspects include giving early career
and student nurses access to shifts
in locations and initiatives like school hour shifts
and are flexible where people can split
or share shifts to fill gaps.
Who can get dysautonomia?
It's actually relatively com.
Worldwide it effects more than 70 million people
and it can be present at birth or appear gradually
or suddenly at any age.
Dysautonomia can be mild to serious in severity
and it effects women and men equally.
It can actually occur
as its own disorder without the presence of other diseases
which is called primary dysautonomia,
and can occur as a condition
of another disease called secondary dysautonomia,
which is my thing.
The main diseases in which secondary dysautonomia can occur
include diabetes, Parkinson's disease, MS,
Lupus, Crohn's disease, ulcerative colitis, celiac disease,
Ehlers-Danlos Syndrome, HIV, and Lyme disease.
And COVID, so let's talk symptoms.
Symptoms can vary from patient to patient, obviously,
and symptoms can be present for some of the time,
kind of go away, return for any time.
Basically you can get bad periods and good periods.
Because you're in a bad patch right now doesn't
necessarily mean it's gonna remain this way.
Symptoms can also be made much worse
by physical or emotional stress,
meaning that if you're perfectly calm,
they might not be there.
Then again, they might be.
Every single person has their own different body.
Some symptoms may be mild in some patients
and in others may interfere constantly with daily life.
A common symptom of dysautonomia is orthostatic intolerance,
which means that you can't stand up for long
without feeling faint or dizzy.
Other signs and symptoms of dysautonomia
you may experience include blood pressure,
breathing, digestion, heart rate,
kidney function, pupil dilation,
and constriction in the eyes.
You did not want me to say sexual function,
and body and skin temperature control.
Hi, I'm back.
I've had lunch.
There's no longer a baby in the room,
currently in more pain than I was before.
Sorry, if I'm slower.
You know, actually the worst thing, symptom wise,
that we haven't really talked about
is just the feeling of a loss of control.
I hate that, where you just kind of get a bit loopy.
How do I describe this?
So for instance, there I am, cleaning my teeth
in the bathroom and I have to get
from brushing my teeth at the sink to my bed.
Dun dun dun, it's all of, I don't know, six meters.
Can I do it though?
No, on a bad day, I cannot walk in a straight line.
Absolutely not, I can't even stand upright.
By the end of the day I'm all over the place.
Absolutely horrendous, I'm also,
for some reason, continually hitting
my head on the wall whilst brushing my teeth.
Brushing my teeth is an action that sends my head backwards.
Would I like to be able to brush my teeth without
smacking my head on a wall?
I really would.
So yes, the feeling of a loss of control
is probably a symptom that is the worst
but they don't write down.
Noise and light sensitivity,
much like when you have a migraine, any kind of noise,
light, those things are really gonna be throwing you
off because your body doesn't know how to deal
with in the way that it kind of normally would.
And then we've got obviously the shortness of breath,
chest pain, and discomfort, vertigo, temperature.
Ongoing tiredness, every single
medical condition has tiredness.
Fatigue is just a general symptom of everything.
Blood pressure effects a lot of things in your body
including, of course, your digestion.
Now, if your blood pressure's all wrong,
we're gonna get a lot
of issues when it comes to things like nausea and vomiting
because your body's going, what on earth?
What the frick, this is very wrong.
We need to get out of here ASAP, you're dying.
You're not, you're not.
Then of course we've got heart palpitations.
I would remember a doctor describing to me.
I was fine.
It was just that I could feel my heart beating.
And I was like, well,
that doesn't feel fine to me, generally I can't.
So make it stop.
And she was like, you want me to make your heart stop?
And I was like, sure, yeah.
If it stops this feeling, and she was like,
I don't think you mean that.
And I was like, no, I don't.
I feel like this is all over the place.
Brain fog, forgetfulness,
and the inability to focus.
It's me, it's me right now to be honest.
Fainting, loss of consciousness.
Or you might sweat more or less.
That was fun.
I had like a few years where I just didn't sweat,
it was a bit random.
I didn't sweat, at all.
It didn't matter where I went,
however hot it was in that country.
However hot it got here.
However much exercise I did, not a lot of exercise.
Let's be honest.
But yeah, didn't sweat.
Sleeping problems, migraines,
frequent headaches, dehydration, frequent urination.
And of course a major one, exercise intolerant,
which means that your heart rate doesn't adjust
to your change in activity level.
Remember when I was talking about going up and downstairs
and it takes my heart three flights to be like, oh,
that's what you're doing.
I get it.
By then I've got two flights of stairs in my house.
So let's get to the key point.
The actual important bits that you're really here for.
What helps?
So certain conditions and events can bring on the symptoms
of dysautonomia, basically this is stuff you shouldn't do.
I know I'm so sorry.
I have to write you a list of things not to do
If you have this.
It kind of sucks but also good to know.
Alcohol consumption, I don't drink alcohol.
So I drink a ridiculous amount of fluids,
how much fluid do I probably drink in a day?
I don't know, like four liters worth of liquid probably.
And if I don't, it's really bad.
Those with dysautonomia, it is much worse.
Stress makes it much worse.
I'm iffy on.
They say that tight clothing makes it much worse
but I find that tight clothing actually helps
but that's just me.
Might not be you, but there we go.
And then hot environments,
there need to be a good level of heat for me.
If it's too cold, then absolutely I'm set off.
If it's boiling hot, absolutely I'm set off,
but I do need to be warm.
Oh God, it hurts.
But what helps?
Well, sadly there is no cure for the condition
but there are things you can do to manage it.
So here are some things that help me, but I mean, again,
seek help from your GP or medical professional.
Obviously we've talked about fluid already.
If you're not a big water fan, then, you know
add in some zero sugar squash.
Another thing you can do is add extra salt into your diet.
So sometimes if I wake up in the morning
with a particularly bad attack, I just crave salty things.
Absolutely need a packet of crisps
which doesn't sound very appealing.
And to be honest, isn't that appealing at that time of day.
So if you have an extra three to five grams of salt per day
it sort of helps you keep a normal fluid volume
in your blood vessels, which in turn helps you
to maintain a normal blood pressure, fun fact.
Some people don't like having extra pillows in bed
but I find the more the merrier.
So if you sleep with your head raised slightly when in bed,
it then benefits your body.
Another trick for when you're lying in bed is,
often you will find that if you're getting
from a lying down to a sitting up to a standing position,
womp, you'll find you're on the floor.
The first thing that you should do is get your body moving.
So clench and release all
of your limbs, get them, ow, bloody elbow.
And that way it kind of helps to get your blood pumping,
your body moving, it regulates your blood pressure a bit
before you then sit up, before you stand up.
And you'll find that it's just much, much easier than that,
let's stand up and.
Other things that are important,
include eating a healthy diet,
yet make sure that you are having salt in it.
As I said, get plenty of sleep.
And keep your blood sugar within normal limits.
Oh, always listen to what your body is telling you it needs.
If it's telling you to take breaks
from work or school, it's telling you it needs to rest.
If it's telling you that it needs something sugary or salty
or to sit down or lie down
or to stick your feet up in the air, you do it.
Don't worry about any looks
that you may potentially get, who the hell cares.
And look after yourself.
Another tip that I found myself is don't take a shower.
Absolutely not, showers, terrible.
I mean, all of that blood is gonna pool at your feet.
There goes your head.
Again, she speaks from experience.
Instead, baths are the way, stepping into a hot bath.
Now that is also a recipe for disaster.
So what do you do?
You fill the bath slightly.
I'm gonna say three inches, with warmish water.
Then you get into the bath and then you continue to run it.
Now this will mean
that your body will be able to warm up with the water.
So you're not having too much of a shock.
You're welcome, it's a great tip.
No one can know for sure what your life will look like
living with dysautonomia.
Symptoms can vary from person
to person and the severity of the condition varies as well.
So just because you've been diagnosed with this doesn't mean
that your life is suddenly going to
be incredibly wildly awful, okay.
It's still your life and it's still going to be wonderful.
Because there are a lot of variables,
it's really important to find a healthcare provider
that you're comfortable with.
And who's knowledgeable in dysautonomia.
You may want to start a health diary
to kind of share with your doctor, but mainly just for you
so that you can get a handle on what's happening to you.
Because like I said, the worst symptom is just
that feeling of the loss of control
and knowing what triggers you, what sets things off,
knowing how to avoid them is the best thing.
It's good to recall things like symptoms,
events that possibly triggered your symptoms,
and how you're feeling emotionally.
A lot of what you're feeling may be physical
but it's really important
that we don't disregard the emotional changes
that are happening as well.
Thank you so much for watching.
I hope you've learned something,
whether that's learning about dysautonomia
because it's just something you're interested in
or learning more about yourself
and how to treat your own symptoms.
If you're a medical or non-medical clinical professional,
please consider learning more about a career within the NHS.
You can click the link in the description
to read more about NHS Professionals
and to sign up for shifts.
It's a great cause.
And please do let me know
if any of you sign up for NHS professionals
because I would love to hear from you.
Thank you so much again
and I will see you in my next video.
Bye.
(upbeat music)