POTS Misconceptions |  myths, vasovagal syncope, hypotension
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POTS Misconceptions | myths, vasovagal syncope, hypotension

October 14, 2019

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?

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  1. Izzy! I finally got my EDS diagnosis yesterday. I can now go to the specialists I need and say, “I have Ehlers-Danlos syndrome” without having to explain my entire life and myriad of odd issues. Great video as always.

  2. I've been trying to get a diagnosis for my orthostatic tachycardia for months now but the cardiology nurse practitioner won't believe that I have POTS because he doesn't think that it can relapse and remit. He also thinks it is anxiety, but I don't see how that is possible. What could I possibly be anxious about every time I sit or stand?
    I'm so tired of not being listened to because I have an anxiety diagnosis.

  3. Omg yes my PCP told me that POTS was controversial and kind of a “fru fru” diagnosis and I was like gurl come on 😂

  4. I feel so validated by your experiences and the videos you post. 😔🥺I have P.O.T.S. and it’s gotten progressively worse as I’ve gotten older.

  5. A cardiologist said that it was caused by overstimulation and that if I let my brain rest from TV, phone, internet, etc. that I would be healed. I also have a family member that that knows some one whose sister has POTS and was able to start are running routine and she cured herself. Umm… Do you not see the port sticking out of my chest for daily saline therapy?!?!? I have HyperPOTS and EDS. No amount of physical activity or lack of mental stimulation will cure me. I also get up way too fast. My doctor is always getting on to me at appts when I move from the chair to the table. Also my attorney for my disability application said that he seems to be getting more and more POTS patients and asked me if it was "an IT diagnosis" that people are seeking out. I did explain that the Dysautonomia community is working very hard to educate medical professionals about POTS and they may have caused the increase in POTS diagnoses. However, I have been tested many times and I 100% a real diagnosis of Hyper POTS as well as many other issues. So frustrating to always have to educated those that are supposed to be helping you get better. If they don't know how are they going to help. Sorry this is so long. This was just so relatable for me.

  6. I live in South Florida and I would like to confirm that summer is instant death for pots . The cold thing however is also quite true . Will we ever be a comfortable temperature ? Nope.

  7. Omg you're not dumb haha, it's just brain fog. I'm the same way. Looooove your videos. And I forget to stand up slowly too!! LOL

  8. I had a doctor INFORM me that I was deconditioned before even asking about my activity level simply because I am visibly over weight and I told him I have pots. I am active, I used to be more active before I got pots. Sometimes I really hate medical professionals.

  9. My POTS get worse in the summer due to heat, but my JHS gets worse in the winter.. at least that I’ve noticed. This year 2019 has been the worst for me for both of those.

  10. I can relate with everything you’re saying the docs, heat vs cold, and damnit why can’t I remember to stand up slow!!! 😂

  11. I've only fainted once with POTS and lost consciousness! When I first went to a cardiologist, I hadn't though, and he seemed to be annoyed I was there and said it wasn't really a problem, as I wasn't fainting!

  12. Do you find your POTS plays up when you stretch? I have slouched shoulders (which probably doesn't help) and find sitting up / stretching my back results in me going dizzy / losing vision / needing to brace myself etc. I don't yet have a POTS diagnosis, but it's very similar to what I feel when I stand up, too.

  13. Relate to all of these. I have GI issues so drinking the amount of fluid that would make my POTS happy then makes my stomach upset. But yet the doctors just tell me I am not drinking enough.🙄

  14. 0:33 Not me. Any location where you feel comfortable recording a video works for me.
    0:57 No, that's pot, not POTS. 🙂
    3:45 It's in the top left, as you look. Top right for us; your viewers.
    7:34 I take it you mean you don't care.
    15:20 You do know you can cut parts of your video out, right? 🙂

  15. 3:33 are you secretly from NZ? 😂
    No but for real, amazing video once again :')
    Edit: Also, so far, 0 dislikes. Hell yeah 😎

  16. YASS! THANK YOU for this video! I have POTS caused by my hEDS. I currently can’t stand because of it. I was told that my POTS couldn’t have been causing me to faint, instead it was “functional”. I was told by one male doctor that my POTS was caused by my “long beautiful legs”. I didn’t go back to him. It’s a debilitating illness. And all the time people are like “Well don’t worry, you’ll grow out of it “. I have had doctors(even POTS specialist) insist that my POTS must be caused by a virus or deconditioning. I always have to explain, while yes viruses can cause POTS, mine was caused by my hEDS. Also I was never told what type of POTS I had at diagnosis? How did you find out? Sorry for the long comment!

  17. I love your videos! You're so relatable and real and that's what I love! Still in search for my diagnosis. Ran into another dead end 2 days ago and it's made me want to give up. Your videos help me to keep pushing forward and find out a diagnosis, good or bad. And knowing there's other people out there who struggled help encourage me to not give up. I'm not sure if I have POTS or not but my symptoms are increasing. I fell over at work yesterday (so embarrassing) because I couldn't gain my balance and was so dizzy and disoriented. Just fell flat on my butt in front of everyone. Every single time I stand now I go into pre-syncope. Not sure what happened in June but everything kicked into high gear and I've been coming to another, what I call, a health crash. 🙁 I just want a freaking answer.
    Anyway. I know my comments are always long. I just feel it's a safe place here to share and be listened to.

  18. I was diagnosed with orthostatic hypotension over 20 years ago. I’ve fainted before, but mostly my blood pressure drops, my blood sugar drops, and my vision goes black momentarily. I also have vaso-vagal reactions and tend to scare doctors and nurses, lol. Lately, though, I’ve been having more POTS symptoms. I can no longer stand and sing without feeling faint / my heart pounding rapidly. I probably won’t bother pursuing a new diagnosis, because, frankly, I’m tired of seeing doctors, and it’s just not worth it. (I have diagnosed G-HSD, but I suspect I really have full on hEDS.) I’m in good shape, even though I’m in constant pain. I exercise (condition) daily in order to keep all my symptoms from worsening, so I highly doubt that, for me, deconditioning brings on POTS. For me, symptoms can be brought on by extra stress, what I have and haven’t eaten (I’m hypoglycemic), how much sleep I’ve gotten, temperature changes, weather, trauma and shock to my system, and who knows what else. I do keep very hydrated and add sea salt to my diet, and those things do help me. Sometimes, though, symptoms will get me anyway, no matter what I do. It is what it is!

  19. I HATE when doctors try to diminish the significance of YOUR pain and suffering because they don't believe POTS exists or aren't familiar with it! Also for me the winter is WAY worse for my POTS i have ended up in the hospital during winter because my symptoms got so much worse! I can relate with you 100 percent i would rather choose the summer, even though i feel terrible either way lol

  20. So grateful you touch on this subject. I have NCS (Neurocardiogenic syncope) had it from heat exhaustion back in 2017 and its been HELL! Oh my gosh. Luckily it has lessened to some degree but having drs think you are crazy was the worst thing ever. My blood pressure would be at 150, ten minutes later, 130, 39 minutes later at 119, and a stress test was all it took to confirm. Neurologist pinned it immediately to NCS so I was grateful for her. Just been on thermotabs since then :/ and praying it goes away soon. Ugh, Izzy do you ever feel like a dysautonomia flare up after a bowel movement ? (TMI im sorry but I do :/)

  21. The fainting one is so true!! When I asked my primary care to refer me for a tilt table test she said "okay, I guess I can refer you to cardiology, but usually the people I refer for that faint". And when I was doing intake paperwork before my TTT the paperwork said "the testing today is to figure out why you've been fainting". It made me so mad, like they only care about your symptoms if they're "bad enough". Ugh

  22. Question: Do you ever notice that stressful situations make your POTS worse? For example, when my son (age 8) had to have eye surgery, when I went back to recovery with him, and the nurses were trying to explain the after surgery process, I fainted on them. I scared them. LOL. They called my husband to come get me. It was so embarrassing.

  23. You're not dumb, it's just brain fog. I struggle with it too. It took me a full thirty seconds to remember what day it was for the fourth time in a couple minutes lol.

  24. Deconditioning causes POTS…hah! I was in the gym 5 days a week/2 hours each session, and had been exercising like that for YEARS when my POTS developed. I did general cardio, weight lifting, step aerobics, Zumba, Yoga, water aerobics, Pilates, Body Combat…pretty much every type of exercise possible I did. And prior to the gym I'd played basketball, soccer, and did Tae Kwon Do for years. That's a huge part of my depression/anger over having POTS. I took pristine care of my body ALWAYS and it failed me so drastically. I still don't understand how that's possible but over the years I've just come to accept it and have been bitter ever since lol.

  25. I got the deconditioning one (with an EDS diagnosis). My POTS came on suddenly actually and severely, literally over a period of a week I went from running my 5 miles a day and a figure skater to struggling to walk from class to class and unable to do stairs. I was 18, freshman year of college.

    EDIT: I am a MAJOR fainter, those first 3yrs I lived in TX and was fainting 5-8x per day easily and was on driving restrictions. Even with that severity my doctor refused any meds or treatments and said "salt and water". Now that I live in AZ and have a specific clinic for EDS and POTS (Center for Complex Neurology, EDS, and POTS; it is amazing). I am on IV treatments daily plus physical therapy and use a custom wheelchair to avoid walking. I am now fainting about 1-3x a week, sometimes none in a week! I am still very symptomatic but more managed and can have a life out of bed. I also have HORRID temperature regulation issues.

  26. I used to do gymnastics for a long time and I quit in sixth grade and I started having problems in eighth grade( I wasn’t inactive I do marching band) I think my doctor says that’s what causes my pots(along with stress🙄) so he won’t have to do other tests.

  27. Omg, stairs. Let me tell you about stairs. I have not been diagnosed with POTS so this may be unrelated, but I do expect some form of dysautonomia. I went on a field trip to our state capital building and climbed up 279 steps to the top of the dome and I thought I was going to fall to my death. My heart rate was all over the place, I was dizzy, and hot. I don't know how I made it. lol

  28. I like your college shirt. I'm a medical transcriptionist and I listen to doctors about 10 to 12 hours a day. Some of them can be such a pain in the ass. I know what you mean about that condescending attitude. Whenever I experience that with any doctor, I move on and never see them again. A doctor with that holier than thou attitude is not going to be helpful to me. Definitely avoid those doctors!

  29. The 1st cardiologist said POTS is uncommon & left it at that. The 2nd cardiologist I saw, a self proclaimed POTS specialist, took one look at the fact that I'm overweight, had never heard of Myalgic Encephalomyelitis aka CFS, nor my Mast Cell Activation Syndrome (my only 2 dx at the time, I now have ~20), he shoved deconditioning at me. So much went wrong in that appointment, & as soon as I get an official dx, I'm educating him. Because he also said I didn't have POTS because my blood pressure didn't drop on standing, & he ignored the fact my HR did increase by 15 bpm while I was leaning on something, & my bp increased greater than 20 ml on standing, which he should have said orthostatic hypertension, but blamed the illness he had never heard of.
    I need to be within the weight limit for the TTT, MECFS knocked me out of my active life & weight gain happened with med side effects. I'm almost there, lost 40lbs on my health centered diet. And still working towards it. I will educate him because I have an obligation to any other POTS patient he may have.
    My 3rd cardiologist is amazing & is super educated.

  30. Wait, what type of Dysautonomia causes the body temp dysregulation? I've been experiencing the same issues, this last winter was awful for me. My body temp drops if I go out, even mostly covered up. I have to super bundle up now.

  31. Can you do another video about what you eat in a day with GP? I also have GP, Endometriosis, bladder muscles that do not work and chronic pain! I love watching your videos because it doesn't make me seem alone.

  32. Aw Izzy I loved this video it was so relatable and I completely loved your analysis of the questions ❤️❤️😂

  33. The clothing/weather point is spot on for me too! I find it very hard to wear tight clothes (I also get hives bc I have dermatographia) too.

  34. I recently was in a research study for Eds/hsd and the link to pots. When I got the results back it showed I had 6/10 symptoms just on that day and an increased heart rate of 31bpm over the 10 mins of tilt test and the active stand that went back to my normal as soon as the tests stopped and I seated or laid down… I took it to a doctor and he said, and I quote, "well all of these look normal"… in what universe sir, IN WHAT UNIVERSE!?

    Another doctor asked me why I needed a pots diagnosis? I'm like why does someone need a cancer diagnosis? No I'm not kidding. I am not kidding at all. He also asked if I knew what the treatment was because he didnt.

    I wish I was joking…

  35. Even after all these years having it, I STILL forget to stand slowly! I can remember as a kid/teen my mom telling me to slowly stand up. Years before I was dx w eds, pots etc. yet, I was put on propananol back in my early 20s, but was never told why. I had to stop when I got preg the first time 18 years ago and just never went back on. Yet, my husband takes it for HIGH blood pressure.
    Eye floaters- so freaky, I get them almost daily.

  36. I find, the summer or heat – outside, or hot showers are so bad for me. But yes also overheating in winter can be bad too. And I also can not deal with the cold. Basically, I could relate to all your sane symptoms! Great video as always!

  37. You don’t sound dumb hun!!! Oh and as for backgrounds- I do like the funky gold patterned wall decor in your dining room I think it is.

  38. Good video! 😄

    I've noticed my period effects pots. Have you noticed a flare during your menstrual cycle?
    At the start I get very sweaty with ice cold hands and feet and an increase in anxiety and bloating. Then by the second day I'm very sick, throwing up, weak, with an increase in tachycardia and extremely sensitive to the temperature. Cold will make me tense and cause very painful head/neck/face/jaw/shoulder and the cold air breathing in feels painful, I'll end up throwing up but heat or stagnant air will make me feel motion sticky, air hungry, headaches and tachy (I'm diagnosed with a mix of migraine, tmjd, cluster, and neuralgia-though personally I believe it's all one thing bcuz wtf, hypermobile EDS, hypovolemic POTS, esophageal dysmotility and dysphagia) Pots seems to have worsened the older I get. I started sweating a ton and getting migraines when I first started my period at 12 and it's been downhill ever since.
    So I wonder if any other women have noticed pots or disability in general starting up when they first started their period?

    I need better doctors. No one will be proactive. Doctors look at me like they want me to tell them what to do. I'm so ready to give up on this life. My hormones have never been checked. Doctors tell me testing is pointless even gastrointestinal stuff when I cant even eat enough to sustain weight. I just dont understand why these doctors can just watch me die. I'm not being dramatic either. This shit is killing me. Very slowly and very painfully. My pcp hasn't even mentioned a nutritionist or blood test for malnutrition when I've gone from 125lbs to 100lbs at 5'7. He just keeps trying to sell me damn cbd oil.

    I'm sorry I had to vent. I'm on my period, cant eat or sleep due to pain and this bitch is losing it. I'm just not strong enough to advocate for myself, I'm traumatized tbh. And my mom is too busy and too tired from work to advocate for me. So I just feel lost and alone right now. I'm 28 with no achievements in life, living on $500 a month at my moms house, isolated with noother friends or family. Because I'm too fucking sick to socialise. O well. At least I can rant on YouTube I guess.

    I really hope no one read this far because holy shit I'm in pathetic mode. But if you did, thank you for your time and have a great day 😁😭

  39. Thank you Izzy as always! Are you aware of any EDS or POTS support groups? I’ve been trying to find something online or in person but haven’t had any luck. It’s been wonderful to find your channel and follow you for the last few months. You are helping me by learning how to better articulate our conditions and advocate for myself. It’s nice to know I’m not alone in dealing with these problems even though some days can feel like I’m totally alone. Thank you for your courage.

  40. There are inner ear issues that can cause similar issues. I have two family members with that going on. .. but it's two different inner ear problems.

  41. i get randomly dizzy and lose my vision. it happens sometimes when im standing or when i stand up. my freaind thinks i passed out twice tho but i dont know if i did or not can i tell you about it and see what you think ik your not a dr but it would be nice to have someone tell me if i could have idk i also think i have blood pooling in my legs causes sometimes my legs will get really tierd and my legs will turn read i have even had them turn a almost purple color a few times. my dr told me i could just be dehydrated but hey im not complaining hes getting me into a geneticist and believes i have eds so ill fight those other symptoms another time

  42. The thing is, inactivity doesn’t cause POTS. Extreme prolonged inactivity can mimic some symptoms of POTS, but it’s not the same!!!

  43. Thanks for posting this! I’ve been meaning to make a video myself but I haven’t gotten around to it. I got diagnosed a year and a half ago although I had been dealing with my ED, and POTS for so many years. All of the doctors in my area told me “oh you’ll be fine, you’ll grow out of it, eat more salt” so I haven’t gone back to any lol. Honestly it has gotten better enough for me to lightly work out every day or two but I still deal with a lot and no one in my family or any doctors around, really understand it. I’m hoping it goes away but anyway, I just appreciate you putting misconceptions out there because I was honestly really lost about some of it! 💕

  44. I started fainting when I was 10 years old. The doctors just thought it was low blood sugar (I don't have blood sugar issues). I had tons of other symptoms looking back, but I didn't connect the dots. I didn't go into full syncope again until I was 20. Now at 26 I have gone into full syncope several times in several different situations. Doctors don't want diagnose me with POTS, but I have just learned how to work through the symptoms and make choices that aren't directly triggering. I also just tell people to catch me if I say I'm not feeling well haha. Concussions from fainting is not my favourite thing!

  45. I started developing POTS at about age 10 I believe. I remember having to hang on to everything so I don’t fall. It was fun

  46. Controlling my body temp is the hardest part about POTS for me. I get cold so easily and struggle to stay warm yet once I get to a good temp, I also overheat easily. Never-ending struggle. I’m the girl you’ll find wearing hoodies in the summer because air-conditioning leaves me shivering and struggling to be at a comfortable temp 😂. It’s SOOOO hard to find a temperature that I can deal with. I’m either 🥶 or 🥵 lol

  47. I have Pots so bad I can barely function at school and my mom just tells me to exercise to make it better. It makes it worse, my moms in the medical field an she wants to say that I lying about my symptoms. Oh then if I have to hear the salt and water thing one more time I will cry.

  48. omg I never remember to stand up slowly! Although I did finally right after this video and still got a head rush with pounding. I was diagnosed with POTS 7 years ago and hEDS a couple weeks ago (and a bunch of other stuff as well). I'm glad I found your channel!

  49. Hmm what about getting up and feeling dizzy and getting purple vision, lightheadedness for like 7 to 8 seconds then completely fine, happens to me sometimes?

  50. Great video! I relate to these problems too from some doctors who aren't surprised that im not better after adding salt and drinking water, that it's lifelong. I once had a doctor who smirked at me and said that you're "always more likely to faint if you're around people" and try to blame mental health for dysautonomia, made me soooooo mad. I also have HSD.

  51. I was told I have vascovagal syncope but that's only when you faint I deal with this every day and I don't feel like I am going to pass out everyday like you are supposed to with VVS am not sure what I have but it's deffinetly not VVS and it might not be POTS but it's a clone of it or something I feel exactly the way POTS makes you feel I've done so much research on it and that's all I can come up with I could put my life on it but then I also have doubts because I can stand for long without my heart rate going up but I will still feel disgusting like pressure in my head and I will just feel like I need to sit down it's sort of the same feeling as being claustrophobic you just want to get away from the situation but no matter what I feel symptomatic lying sitting standing anything anywhere some days are worse than others but there's never a day I feel normal

  52. I was just diagnosed with POTS last week. I've had milder symptoms since I was a teenager (I'm 27 now), but got the flu last winter and majorly spiraled. I also work 40 hours a week on my feet, so definitely not de-conditioned.

  53. Watch to the end!!! I have temperature regulation problems too even overnight. I'll wake up 95.5°F In the morning and be 99.7°F by the afternoon. It's beyond horrible and I'm still not fully warmed up at ten am and I woke up at five. I live in Cali and it's only September! I love the end. Xxoo

  54. Hi Izzy, I have a question for you about POTS. I know that you said it is way more common to have Orthostatic Hypotension than it is to have POTS, but is that also true if you have EDS? What are the chances that the symptoms someone might experience would be from OH if they know they have EDS? Should someone with EDS push for more testing for POTS if their doctor had previously told them about a very similar disorder (like OH or Vasovagal syncope) knowing that the correlation between EDS and POTS is strong?

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