Astronauts though a lot of them develop POTS when they come back from space Deconditioning or a period of inactivity caused your POTS Hey guys, so this is kind of a new background I haven’t used it and I didn’t realize I haven’t used it before but whatever I kind of like having my desk in the background. So maybe you’ll see this more Um, do you guys have a favorite location that I film? I know that’s like a such a random question But like if there’s somewhere that I feel like you guys like really like just like let me know because I can just film in that location So today we’re talking about POTS
misconceptions Really fast, POTS stands for postural orthostatic tachycardia syndrome, NOT weed, and it is a type of dysautonomia. So just like a little background in case you didn’t know but if you you’re watching this video you probably know what it is. So, let’s begin. First misconception Everyone with POTS faints. So that’s false Most people with POTS go into presyncope or they might go into full syncope and syncope stands for fainting. For me personally, I go into presyncope I lose my vision, I – a lot of times I’ll fall to the ground, but I remain conscious So if you’re talking to me, like I’m not – I can remember it I mean, I’m probably not gonna continue my conversation because I don’t feel so great But I mean, I know what you’re saying and I will recall it. Um, some people don’t get as close to fainting Um, ever or they only do sometimes. Sometimes people don’t fall at all. They just don’t feel good. Some people faint 20 times a day. It’s kind of weird because somebody who like doesn’t have as much of an increase in heart rate for example, as somebody else Um, they might faint and the other person might not, even though the other person’s heart rate increases more A lot of it is just dependent on how your body reacts to the change in heartbeat Next, POTS only makes you symptomatic every single time you change your position to standing Also false. POTS can like really affect a lot of different things for me, while standing is a huge part of it particularly changing my position to get up is when I feel symptomatic I mean, I feel symptomatic when I’m walking I feel symptomatic when I’m just standing, taking a shower. Heat is a huge trigger for me Even if I’m just sitting down, like recently I was in my wheelchair and somebody was pushing me I was not even wheeling myself and I was feeling so symptomatic. It’s just dysautonomia. Sometimes your body decides to cooperate other times it decides not to. And while I do have more than one form of dysautonomia my POTS is my main form of dysautonomia and it’s really where my symptoms stem from. Um yeah, but like a lot of people find heat a huge trigger, walking, stairs. Oh my goodness before I started taking medications for POTS, I mean, I struggled to walk one flight of stairs I really did and while I have other issues with my joints that might make it complicated for me to walk stairs like It was really the POTS that stopped me. And now if I’m medicated I can walk a flight of stairs walking two flights, I’m gonna need to stop and every single day is different, but Um, It’s it’s – it’s still going to be difficult, you know? You will grow out of POTS This is a huge misconception that a lot of doctors have. Yes, some people grow out of POTS or it improves I don’t want to say that does not happen. It totally does. but a lot of it really just depends on what type of POTS you have and it’s not always important to know what type of POTS you have I made another video talking about the different types of POTS so I will link it in one of these two corners I never know what corner it is But for example neuropathic/partial dysautonomic POTS, dysautonomic POTS will make you Well, you’re more likely to grow out of that type than the type that I have hypovolemic POTS or hyperadrenergic POTS. Those types are less likely, you’re less likely to grow out of them so it’s really dependent on the person and the cause and I think it’s a huge misconception to say that you’re gonna grow out of it that it’s just a teenage illness because, while a lot of people develop it in their teenage years a lot of people are not gonna grow out of it and I think it’s important to treat somebody with this properly and not just say hang in there and eat a lot of salt, it’ll be over soon. In a couple years you’ll be better because that’s not always the truth But also I do want to say that some people will grow out of POTS or get better with their POTS at least as they age and if you have my type If you have EDS that causes your pots your collagen can stiffen as you age and it might get a little bit better or it might get a lot a bit better or it might not it’s just that not everybody gets better This is also – there are like two huge misconceptions between doctors and I even had this one doctor like say this to me kind of rudely and it sort of hurt my feelings basically, the thing is that Deconditioning or a period of inactivity caused your POTS. (exasperated sigh) This one’s a toughy because inactivity did not cause my POTS. My POTS is caused by my Ehlers-Danlos Syndrome and it was progressive. It didn’t suddenly start There are a lot of causes. A lot of people get a certain virus like, you know, there’s a bunch of different types You know you get sick and it causes your POTS. You have an autoimmune disease that causes your POTS EDS. So many different things I’m – Diabetes – like I don’t even know all of them. There are so many causes of POTS but inactivity Isn’t like really the cause I mean somebody is maybe – can develop it from that I don’t – it just like – It pisses me off. Like, it puts blame on the person and also some people are so freaking active like – like I know people who are dancers, cheerleaders, like soccer players who develop – like great great athletes who developed POTS and had to stop doing what they were doing they were exercising every single day before this and their POTS just got so bad So it’s not due to inactivity and a lot of doctors are like well even if they had a cold and they were down for seven days and I’m like Come on, like that’s – your body knows how to deal with that like not that many doctors believe this I don’t mean to say that like, this is like generally believed but like it is something that doctors think about it’s like deconditioning of the heart and the body and honestly, like I can understand that the idea of where it comes from because your body is – stops, you know knowing how to regulate its blood It’s like your blood and stuff but a short period of inactivity Which is what a lot of doctors claim is not going to cause your POTS and I think it’s a horrible misconception If you look at astronauts though a lot of them develop POTS when they come back from space because their bodies get used to the limited gravity and so their bodies are not used to having blood being kind of pushed down by gravity to their feet as strongly as it does on earth and then you come back here and it’s like gravity is much stronger and your body’s like, “what?” So they kind of develop a temporary POTS. that makes sense But being inactive for a couple weeks is not going to cause your POTS And I hate that this one doctor told me that. I hate it. Every single doctor I’ve ever seen has been Great, you know, or at least fine with my POTS. You know what I mean? And this one guy just like pissed me off. He was like you know that POTS is controversial right? and I’m like, I don’t give a shit if it’s controversial – excuse my language I have POTS. Like can we move on and I’m just telling you my medical history so I can get to the reason I’m in this appointment like he was trying to like – and he said to me he was like I’m not going to tell you what my opinion is I’m like, okay clearly I know what your opinion is if you’re telling me this and you’re speaking to me like that like I didn’t diagnose my POTS, like my doctor did and also like Oh- like it just like- ugh- like oh like oh, you’re pissing me off so much just like chill out. There’s a lot of medical controversy in so many different areas You don’t need to pick this to pick on like and you don’t need to do it to your patient who has a diagnosis of this and it’s not my choice to have this diagnosis I mean like I chose to search out a diagnosis cause I felt horrible, but whatever. Um Sorry spent a long time in that one. It just pissed me off! Everybody who gets dizzy when they stand has POTS. This is an easy one. No, there are a couple different things, first It’s normal to sometimes get dizzy when you stand up I mean, it shouldn’t be happening to every time you stand up or a large percent of the time that you stand up But sometimes you stand up too fast and it happens, you know, it is normal for your blood pressure to drop very very slightly when you stand up and sometimes maybe your body messes up and it drops a little bit more than it’s supposed to clearly I’m having a floater in my eye or like a feather just did a little zigzag and I think it was a – I think it was an eye floater Okay, I don’t like that that happens it freaks me out [whispers] don’t be freaked out it’s fine Okay move on, um What was I even talking about? Oh, yeah so it’s totally normal sometimes but it shouldn’t be happening a lot and there are other things too that cause dizziness and similar symptoms like Orthostatic hypotension and I’m sure there are other things too that I just don’t know about You know? So it’s not always POTS. That’s not always the answer. Sometimes you’re normal Sometimes you’re not and it’s just not POTS Um, and actually, by the way, it’s way more common to have orthostatic hypotension than it is to have POTS So with these symptoms, it’s more likely that you’ll have orthostatic hypotension. And so it’s really good Like, you know if your doctor tests you for both of them because you might not have POTS but you might have that, you know? Um, POTS can be managed solely by salt and water We all know, not usually I mean, it’s a good thing to start off with but the reasons that this is problematic are Every time you drink water, it’s not always going to go into your bloodstream. Sometimes you pee it out automatically, you know and Basically, like if you’re going to be drinking that much water it might hurt your stomach and people who have POTS, a lot of the times have actual issues with their digestive systems because You have something wrong with your nerves kind of you know, like um, so a lot of people have things such as gastroparesis I’m using that as an example because that’s what I have um and I can’t – well I’ve had now because I’m a lot better but like Even now if I can’t drink that much water, like it it will hurt my stomach a lot and I will feel sick That’s just the way it is. So I can’t drink enough To the point where my body will really use that to increase my blood volume and it’s also just not going to pass through into my bloodstream all that fluid It just doesn’t work that way Also like with salt I mean, yeah, it’s helpful for some people but some people get really swollen from it and it just not enough. Sometimes people need to take a lot of salt For me, salt works like for like a good like a good portion of the night If I don’t want to take my midodrine, ’cause it’s too late and I’m not supposed to Like, salt will take care of it. Like it’s not gonna do the same as a midodrine because midodrine really is good at increasing your blood pressure But like I’ll totally notice an increase. I mean, I’ll increase I’ll totally notice improvement. Uh-oh, my camera is about to die Can we finish the last one? We can’t I have to change my battery. Ahh! What’s funny is that Even when I’m filming a video about my POTS I still forget to stand up slowly and not experience symptoms. Like I just popped up right there and I’m like You know? Like – like how much more of a reminder do you need Izzy? Last one That made me dizzy too Winter is better than summer for people with POTS Okay. This one’s not a full myth. This one’s like a potential myth So the reason I call this one a potential myth is the summer can be really hard on POTS patients Like it really can be and it is harder on me in so many ways It increases my heart rate. It’s hot like I I’m walking and I feel so POTS-y But I’m gonna say two reasons as to why that might not be true One of the worst things for me is not actually what the outside temperature is But how I feel on the parts that are covered by my clothing and how its influenced by the outside temperature So in a summer, yeah I’m really hot wherever I’m wearing clothing also where I’m not wearing clothing but in the wintertime I’m wearing like really really heavy coats and jackets and coats and jackets are the same thing And the pants and boots and things like that and I get overheated even though the rest of my body might be cold in some ways like I’m – I’m overheating and I like feel like I’m like suffocating and you might say well Isabel Why don’t you just take off your layers and it’s – now I get to the second point People with POTS a lot of the times have general disautonomia or another type of disautonomia I do not do well in the cold I really don’t do well in the cold Um, and actually more so I don’t do well, when it’s so mildly chilly or even just like a normal temperature in the room Like I get so freaking cold and this is something that a lot of POTS patients will experience if they have disautonomia Now, not everybody with POTS has other types of disautonomia as well and they might not experience this Um, but a lot of people do and so that can make winter even harder but if I’m not wearing all these jackets and things like and like boots I will not be able to get to where I need to go and it’s so weird because when I was younger I mean I didn’t have the type of disautonomia I do now. Like, it didn’t really bother me I mean I did in some ways but so – but not – not with the cold. Like, I didn’t care Like, I just – you know, it’s uncomfortable to be cold, whatever but as I’ve gotten older and honestly it’s really been the last year or two that it’s gotten worse with the cold really the last year, like it’s been like the worst year ever but the cold I’m really struggling to regulate my body heat – my body temperature, um, when it’s cold So, I need to wear all those layers and then when it feels like I’m suffocating and I literally feel sick Like I need to take something off. It’s horrible Like so in my opinion like what I’d rather be walking in really hot temperature That – and have that affect my POTS or would I rather be walking all bundled up so I don’t like die Not actually, I’m being so dramatic So I don’t feel really really cold and then feel also horribly suffocated and struggle struggling to breathe in the winter. Clearly I’d rather choose the summer like it’s so much better so – and I know some people will relate and some people will not and so that’s why I’m saying this last one isn’t a full myth, you know it’s not even half a myth It’s like a quarter of a myth. Maybe maybe it’s a fifth no, I lied. Maybe it’s like I can’t think of another fraction… A third! Wow! I’m not dumb. I come on YouTube and I sound so dumb. Like I really do I hope some of you are like she’s not dumb. She just sounds dumb because that one’s accurate Okay, I’m gonna go now I think I’ve embarrassed myself enough in this video and have said some really strange things, in very strange ways and I’m still gonna post this video I’ve just gotten more comfortable on here. You guys will just like see the real me Okay if you don’t know me, you’re like this girl’s so annoying. Okay? Bye guys. I freaking did it again. Like why could I not just stand up slower? What is wrong with me?