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Hey guys, It's Mahala.
Welcome to my channel where I like to talk about living life with my New Normal and Chronic Illness.
Today is September 28th.
So you know what that means right?
It's almost October!
And why is that exciting?
Not just for Halloween or hoodies and sweatshirts and campfires and nice weather.
But also because October is Dyautonomia Awareness Month.
So, I wanted to make a video to talk a little bit about what Dysautonomia is and how it
impacts my life.
To start with, Dysautonomia is a malfunction of the Autonomic Nervous System.
So basically, the Autonomic Nervous System controls things like breathing, heart rate,
blood pressure, body temperature, digestion, and so on.
It can pretty much affect almost every major organ in your body.
Dysautonomia is a blanket term.
There are several other conditions that fall under it.
So some of the types of Dysautonomia include Postural Orthostatic Tachycardia Syndrome,
Neurocardiogenic Syncope, Inappropriate Sinus Tachycardia, Pure Autonomic Failure,
and the list goes on.
Those are just some of them.
For the purpose of this video though, I wanted to focus on POTS and Dysautonomia as a whole
because that's where my experience lies.
So, what is POTS?
POTS is Postural Orthostatic Tachycardia Syndrome, like I said.
And it is one of the more common forms of Dysautonomia.
So POTS is characterized by an increase of 30 beats or more upon standing.
Within 10 minutes of standing.
And basically what happens, if you're a normal healthy person, when you stand up, your heart
rate will increase ever so slightly to help circulate the blood.
When it comes to people who have POTS, when they stand up, the blood pools in their ankles
and their lower body.
And their heart has to beat several times harder in order to compensate.
Basically, the heart and the brain are not getting enough blood when you stand up,
because it all rushes down to your lower body.
And that causes pre-syncope or even syncope episodes.
Where people will actually faint or almost faint.
So when I stand, what typically happens is that within a few seconds, like a minute or
two tops, my heart rate will jump 60 beats per minute.
And I will have blood pooling in my legs that is visible after a few minutes or so.
And when I stand up, I temporarily loose my vision.
And that's part of the whole pre-syncope thing.
It's almost like I can feel like the blood draining from my head and the vision is the
first thing that goes, when it's not getting enough blood.
So, my vision goes black.
I usually get sweaty.
I'm one that excessively sweats.
Some people don't sweat at all.
And it's almost like your hearing changes.
Like everything is muffled or like underwater sounding.
My face usually turns red, especially if it's like a really bad episode.
You can see, you can see me like flush.
And sometimes I absolutely have to like collapse right away or I will loose consciousness.
Lucky for me, I pretty much have like a few second warning that I need to sit down.
Some people, it happens so fast, they just completely drop.
They can't just like . . . I only have a few seconds so it's not like I can go find a seat
over here.
You know, walk four feet, like no.
It's like . . . Sometime's I couch dive.
Like I'll stand up, and then I'll be like, " Oh no, Oh no."
And I'll dive right back down to the couch.
Because there's really like no time.
You just have to hit the floor or your going to go out.
And, the reason you faint, is because that's your body's mechanism to try to get that blood
pumped back up to your upper body.
So it just kind of makes you pass out, so it can get up . . . get circulated again.
So that's kind of what happens when you have POTS.
And other symptoms of POTS include, like I already mentioned, tachycardia, the blood
pooling, low blood pressure . . . Not always low blood pressure, some people have high
blood pressure.
Um.
Weird things with your pulse pressure.
Which is the difference between the top and bottom numbers of your blood pressure.
I've seen mine as low as 8 and it's supposed to be 40.
Body temperature issues.
Like I'll run a fever for no reason, dizziness, lightheadedness, fainting, digestive issues
. . . I don't remember if I already said "brain fog," which is funny.
But I also have brain fog from a Brain Injury.
So there's that.
And, kind of like secondary symptoms of like anxiety and depression and not knowing what
your body is gonna do and not being able to plan around it causes those symptoms.
Fatigue is another symptom.
Because you have to think, our hearts are beating like super fast like they're running
a marathon when you're just sitting there or standing there.
Takes up a lot of energy.
So that's the main ones.
I feel like I'm forgetting important ones.
So how does POTS impact me on a daily basis?
Well.
For one, the fatigue as I already mentioned because it feels like I'm always running a
marathon when I'm not doing anything.
Two, is like I never know when I'm just gonna collapse.
You would think that you would get used to being careful when you stand up.
I don't know if it's the Brain Injury that makes me forget, but I forget.
I'll get like two steps away and boom.
There are times, when I can't stand at all.
Like I've had episodes, for lack of better words, where I just cannot get up.
So, in those situations, I have to like chug the water, like take some pills . . . Because
I'm on pills to regulate my blood pressure and stuff.
Increase salt.
And usually within an hour of chugging, salting, and doing all those things, I can stand up again.
But that's not good when you're like oh I have to be at class, but your just like hanging
out on the couch not thinking about it, you go to stand up, realize you can't stand.
So you sit back down and you try again.
Nope, back to the ground.
So you try again and you keep collapsing.
And those situations aren't great.
So, it takes some time to recover.
And then it's exhausting after doing that.
The other way it impacts me, is just standing in one place.
Like as soon as I'm up for like three minutes at a time, I'm already thinking about where
can I sit.
Where's a chair.
I need a chair.
Someone give me a chair.
That's what I'm thinking.
The other issue I have is walking up steps is the worst.
I like rarely get all the way up these steps in one go.
I'll get half way, and then I'll be like, my heart . . . Oh, palpitations.
That's another symptom.
My heart will just be pounding, like it's like it's beating me up from the inside.
Like there's a mosh pit in my chest, is what it feels like.
And I start sweating and getting dizzy.
And I usually have to like crawl the rest of the way up.
No joke.
I crawl up the steps probably every day.
And then I have to sit down right away.
That's also like difficult when your getting ready.
I always sit to get ready.
But, even like standing to brush my teeth this morning, I nearly passed out
and had to sit down.
Um showering.
Hello, that is like the worst.
Another symptom I forgot, which is an obvious one for me, is heat intolerance because I
am super duper duper heat intolerant.
So being in the shower with all that warm water really causes you to get close to fainting.
And of course I have a lot of stomach issues and even more so lately that we're trying
to figure out.
So, where I cant even, haven't been able to keep food down lately, a lot of acid reflux
and belching and stomach pains and vomiting . . .
I've lost 10 pounds in like two weeks time.
and that's some of the fun.
It also affects me, by being really out of breath, like I am now.
Even talking, sends my heart rate super high and I'm frequently out of breath.
Um, that's one of the worst symptoms for me.
Even when I'm driving . . . I have no air conditioning.
So I will be like dry heaving in the car and so nauseous trying to breathe, this summer.
It was horrible.
And sometimes I can't drive at all because I don't trust that I'm not going to pass out.
Especially, if I'm like having an episode or if it's really hot out.
And having to, you know, do all the things to try to manage it.
And not knowing . . . Not ever knowing what one day will bring.
So, I'm usually always sweating, always hot.
I keep my house really cold and Nick freezes.
You know, it's hard to walk because dizzy all the time and lightheaded.
And I have a lot of weakness.
And I also have this unexplained leg pain.
So putting all that together, it makes walking really difficult.
The brain fog of course affects me when I can't figure out how to use the microwave
or when I'm trying to take a shower and I can't remember like where the shampoo goes,
and what's what, and did I already wash my hair?
I still have issues with that.
So those are the main examples of how it affects me on a daily basis.
I just can't walk anywhere very far like without assistance.
I use my cane for short distances.
Anything that's more than like a block, I need a rollator.
And you know if it's like several blocks.
I mean I don't know for sure.
I haven't tested it.
But it gets to the point where I can't walk that far and I need a wheelchair.
And you never know what your going to get.
And one day is like horrible and the next day's not.
Not to mention, it's also really distracting when you're dealing with all this tachycardia
and you're trying to concentrate on stuff and you're heart is just like racing like
crazy and it's hard to breathe and your sweating.
Like, it's super hard to concentrate.
So anyway, that's how it affects me on a daily basis.
And now you're probably wondering, what causes dysautonomia.
Well.
And POTS.
It's a syndrome and there are a lot of different things that can contribute to or that cause it.
For me, we're still not 100% sure.
Because I feel like I've always had some autonomic dysfunction.
I remember having these issues when I was younger.
Not to nearly this extent, obviously.
But I could not keep up with other people.
It could be caused by a Brain Injury.
It could be caused by any sort of physical trauma, surgery.
It can be caused by other conditions.
Like there are a lot of conditions where it goes hand in hand with them.
It just stems from a lot of places, which makes it confusing.
Dysautonomia is a chronic illness and there's no cure for it.
There's only treatment options to help.
And some of those treatments include things I've already discussed like increased water intake.
Like I drink two to three liters of water a day.
And salt intake.
I take salt tablets and try to eat a lot of sodium and salt in my food.
Other treatments. . .
Physical Therapy is typically recommended and can help.
And certain medications.
The two I'm on is Midodine, I think is how it's pronounced, and Propranolol or something like that.
So I'm on both of those.
Things have been going a lot better, since I'm on them.
Especially, with the tachycardia, but I still, of course, have the condition.
Instead of my resting heart rate being in like the 90s to 100s, like sometimes my resting . . .
I'd be laying flat at 130, at times.
But I would still, no matter where I'm at, I always jump at least 30 if not more beats.
So, even though my heart rate is lower now, I still have that outrageous jump
like 50 beats, when I stand.
Um, but it's a lot better than starting at 130 and then jumping 30 to 60 beats per minute.
That is, that's high.
That feels horrible.
Other times, it can be treated with IV saline.
Some people swear by it as being like the only thing that makes them feel better.
I haven't got experience that, so I really don't know.
That is kind of all about POTS and Dysautonomia.
And if any of you guys have any questions, I'd love to answer them or try or point you
in directions to things.
And also, if you're the Dayton area, Dayton Ohio, there is an event coming up in Springfield Ohio.
And it's put on by Standing Up to POTS and it is a 5k walk.
But of course you can use your wheelchair, I'm using my wheelchair.
Be pretty cool if you guys came out to that.
I'd love to meet you and it's a great cause.
It's supporting research and supporting funding to try to find a cure and find new treatments.
It'll be fun and I'm excited.
That is October 7th.
I don't think I said that.
And I will post the link to that event and information and that webpage and stuff down
below this video.
And share this video and help spread awareness for what Dysautonomia is.
You would be surprised by how little the medical community knows about Dysautonomia and POTS.
So let's raise awareness and keep fighting.
Keep pushing for the things we need.
It's a daily battle, but you guys can do it.
If you like this video, be sure to give it a thumbs up and subscribe for more.
And thanks for watching!
I'll see you guys next time.
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