POTS - Getting Diagnosed with Dysautonomia

how good do i look welcome to my channel or welcome back um if you are new which many of you might be my name is megan i'm a mom of two i was a registered nurse um before having kids and then i worked in health education and holistic education and uh we attempted to homeschool so that's what you often find here um but after many years i finally got a formal diagnosis two days ago um i just got out of the hospital how do i look um a postural orthostatic tachycardia syndrome they are still looking at some underlying issues and lots of doctors appointments coming up um one of the reasons that i was the main reason that i became a nurse was in my early 20s i had a a series of really severe autoimmune attacks where i had ongoing inflammation and joint pain my hair fell out um they were never really able to pinpoint a cause i sort of figured out that um a lot of inflammation was coming from my environment i was working in makeup and special effects at the time i used a lot of products um on people and on myself and um i got rid of everything crappy in my food and quit working with products and and kind of went all natural and that helped my inflammation and it stopped a lot of the pain by you know 90 of the pain over you know four or five years of cutting everything out but um since i was six i have been a fame turf i think um and i've been told my whole life that i i just faint i faint when i stand for too long i also don't sweat at all um when i work out so i overheat very easily um in the sun if it's over 75 or any kind of kind of high intensity workout i'm out and that has that's never gotten better but i'm very very good at being careful and kind of knowing my limits now over the last few years my limits have shrunk from you know being able to stand for 10 or 15 minutes 20 minutes if it was cold um i can do that but now a couple minutes two minutes one minute um before i get dizzy and lightheaded and palpitations not everybody with pots faints but i faint so i i do actually lose consciousness lose consciousness and hit the ground in fact when i left nursing when i officially left nursing after my daughters were born i wanted to stay home and really focus more on education but i i attempted to work prn just like occasional kind of hospital gigs now i had always worked inpatient where i could sit specifically because i knew i needed to sit i passed out several times in nursing school even while taking precautions so i knew that that wasn't something that that was going to be sustainable but i figured working at a less intense hospital setting once in a while would be okay i made it 25 minutes into my first day and i woke up in a wheelchair having blacked out and throwing up in the middle of the hallway they didn't like me after that so i did not i did not work after that that was about five years four years ago four and a half years ago gosh i don't know what year it is covets really covet actually has been the reason that it has taken me so long to be diagnosed i had a really bad flare about three years ago and um was in the emergency room they suggested that i see a cardiologist because the doctor on call said this looks like pots i had never even heard of pots even after you know even after nursing school i've been i'd been a nurse for five years i had done cardiology a cardiology rotation um never heard of it so i did some research and i had a lot of the symptoms and when i when i say a lot i mean actually i had all of them pretty much and um it was it was a little weird i went to my primary care physician at the time who completely dismissed that said you just had your second baby you're dehydrated and exhausted you're this is not that and then about a month late she ordered an echocardiogram she said your heart looks fine um about a month later we we moved across the country to where we live now and it took about four months to get our insurance and that was december or we got i think we got our insurance in november of 2020 or 20 2019. so 2020 hits and then clovid started so we only had our insurance for a few months um we were looking for a primary care doctor that would take our crappy insurance and wasn't i was never able to even get in to see somebody here before covet hit then it just never happened and frankly i was doing really well because i no longer had to go to the grocery store which um had been a huge problem for me before i mean you know probably one out of four times that i went to the grocery store the weight um there was more than one person in front of me in line and then i would have to ban my and abandon my cart and leave and come back at another time because i started feeling sick and i knew i was going to pass out and i didn't want to lay on the floor in the middle of the grocery store like a weirdo which i have done before i've also fainted in a grocery store and that is no fun so with kovid we got everything delivered my kids didn't have to go anywhere we live in a 900 square foot house or apartment in student housing my husband's in grad school we don't even have stairs here like it was actually kind of nice um but now it is summer and it is a billion freaking degrees this summer if you're watching this anytime this video goes up you might know that it's a really hot summer and i'm not functioning anymore so i passed out about two weeks ago now two weeks ago and typically if when you pass out um [Music] you put your legs up in here i get really you know i get an ice bath or put ice on me to cool myself down drink a bunch of water and i feel better in a couple of hours maybe a day um you know i'm fine i'm all better back to baseline not this time so a couple years ago um my best friend gave me an apple watch for my birthday which i never wear because again i never leave my house because coved um and i don't i'm not really a tech person like this is as techie as i get with y'all um not a big fan so it just isn't something that i wore much um so i put this on i started checking my pulse and then i knew i was in trouble i was going from 58 or 60 lying down to 155 160 brushing my teeth just in a matter of 90 seconds and i was starting to get super exhausted um i was out of breath and after about nine days i started having bad chest pain every time it would get high and then i took a shower which i should have known better and then i got stuck in the hundred and sixties and i was in a lot of pain so i put my kids to bed um and i went to the emergency room oh i went to emergency room number one because emergency room number one went you're having chest pain okay honey i was like i'm not having a heart attack i'm just saying that it hurts because it's been going so fast and they were like okay yes it's fast um but okay and then they i did eventually see a doctor four hours later and the doctor said oh this looks like pots and i was like yeah i've heard that before but life and children and i i moved and i wasn't able to get seen she was like yeah that's not great um you should you need to see a cardiologist we'll get you sorted out and they were like but you have kids and i mean you look fine um so we'll get it sorted out later and so she gave me a referral to a cardiologist and sent me home that was it i mean like they did they did a stat ekg and blood work and they were like bye so i went home and i was on bed rest for two days until monday morning when i called the cardiologist who said we don't take your insurance sorry i can't see you so i still had i didn't have a pcp here so i called everybody in the state uh found someone they couldn't see me for a few weeks um and i i was like okay um what do i do told them what was going on um got a nurse nurses probably because i am a nurse um and the nurse was like oh hell no why didn't they admit you what the hell and i was like i know but like i guess i'm fine and she's like you're not fine this is not fine so that was a bad day i was not feeling good i was too out of breath really to talk on the phone and she was like you you have to go back to the hospital so we called my mother-in-law to fly here to watch my children because of course this is happening when my husband is in a very important residency for his graduation and he only has three weeks left and if he doesn't finish this he doesn't graduate in december we would really like to be done with grad school so my mother-in-law flew in that day and which was really hard for me because i don't ask for help well forever just it's not my thing uh and i said i really am nervous about going back to the emergency room since the other one [Music] didn't really do anything even though i'm really not feeling well you know and so the doctor was like we'll come here and if you know we can just get you into a cardiologist we'll do that so they got me an emergency appointment walked into the the pcb office and the doctor was like are you kidding go to the hospital okay sorry um so i went to the back went to a hospital i went to a different hospital that hospital took my vitals saw my pulse saw my pulse change sitting to standing and just took me right to the back put me on a heart monitor the heart monitor started going off when i stood up to get my blood pressure cuff on and um then they had me with a cardiologist within a couple of hours i got an echocard another echocardiogram an ekg chest x-rays a bunch of labs they squeezed in a liter of saline in like an hour uh if you know anything about ivs it was pretty quick um and the cardiologist came down and was like oh yeah you got pots and i i knew that but if you have pots or think that you have pots you will know that it doesn't matter how perfectly your symptoms match how crappy you feel there is just part of you that feels like it is it can't really be that it can't really be something there must like i am somehow manifesting this i've been told my whole life that i just faint or that i'm having panic attacks even though i don't hyperventilate um that you know i'm just stressed or something and the doctor was like oh no like this is pots he's like now there may be other things you may have svt you may have ah like i don't see any afib i don't see any other things but we're still gonna look um he's like there's a couple of other you know wonky things with my blood work that he was like could be normal could be something um i do still have some markers for some autoimmune stuff even though there's nothing definitive right now so we are looking at all the things and i've got this beauty i'll flash you ready for two days there is nothing in the world that itches more than this just so you know this tape sucks like ugh i also have had thank god my mother-in-law's here because like my three and a half year old is just like what is that i want to play with that um so this comes off finally tonight is just 48 hours and i get to rip this tape off of me i've had a lot of episodes symptoms um i am far less symptomatic than i was in the hospital they gave me some ads and a whole lot of ivs i got two bags of ivs but i have been pretty symptomatic so every time i'm out of breath or have bad palpitations skip a beat um get dizzy i write it down and write what i was doing and i get to drink i'm supposed to drink two and a half of these a day and i'm attempting to figure out how to eat five to seven thousand milligrams of salt a day which is what they want me to start with and i'm just doing my my polls i tend to wear this mostly during the day and then when it gives me a crazy number i check it with this because i never believe that my heart rate is really going that fast even though it feels that fast um but i do like to check because i'm weird like that and i'm a nurse and i oh i got my beautiful my mom sent me pretty compression stockings so i have my pretty compression stockings and now the big thing will be to rest enough so that my when my mother-in-law leaves i will hopefully not be super symptomatic with my uh with my girls at home i only have uh i think just over two weeks left of my husband's um final um sorry brain frog this is a it's a pots thing i swear um residency only two weeks of two two weeks after residency before he is done he'll have him um several weeks off and then he has a very light uh fall schedule where he won't be out of the house very much uh before he graduates so that is really good um i have several doctors appointments between now and then anyways and hopefully we will get well-managed palpitations if you have questions or comments i can't even imagine how uh flighty this video probably is or looks because i'm still a bit messy but i just i hope it's helpful to see a video of somebody who's more in the moment which is what we are here with dysautonomia um but i'm happy to answer any questions or anything and hopefully i will have more information good content for you in the future regarding this this kind of a thing if you have symptoms if you feel sick if you feel like you aren't being heard get a second opinion or a third opinion or a fourth opinion because i've i've been hospitalized for fainting a dozen times half dozen times i mean i've been in the emergency room for this three times you know recently um but it just took one it took one place to say i know what this is we're just gonna test you you know we're gonna look at you and once they did my orthostatic singing sitting or lane sitting standing they were like oh yeah um i didn't have to do a tilt table test by the way if you were wondering because the um cardiologist came down and did a bunch of other stuff and i'd had um my orthostatics were so were so evident he said that he didn't really feel the need to make me faint since a tilt table test is not actually does not only indicate pots so i appreciated that he didn't make me faint i'm fine with that i'm not worried about that at all so any other questions comments stories until next time bye guys

Channel: Going Crunchy Not Crazy

Views: 103

Rating: 5 out of 5

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Id: WQV1MCCL-RU

Length: 18min 14sec (1094 seconds)

Published: Tue Aug 03 2021