I'm glad that you mentioned about Jacquie? I do have a question as well. I have tried some different things like Pedialyte and Liquid IV? Even now they say they have a flavor you can't taste the flavor and it seems like it is hard to drink but I can drink something like Crystal Light faster and in bigger quantities? Is there something that is like these that will do the same thing but really is much better tasting and much easier? When I am taking things like Liquid IV, I have noticed that I sort of start to get a feeling of getting sick to my stomach? Thank You for your video.
Hi I’m 12 I have pots too and this has helped me I don’t like have pots I have to go out of class sometimes because my heart was 145 and my school sent me home “because I was her liability but my school complained about me missing school for other reasons I had to reset and drink a Gatorade and then I was perfectly fine
I have a service dog for POTS. She alerts when my heart rate gets too high so I can lay down, from there she will perform deep pressure therapy to help raise blood pressure and prevent blood pooling
@@chelseakatie02 most of it is natural which is rare, but to develop the natural alert, I use scent training by swabbing my cheek with a cotton swab when my hr is normal, and another when my heart rate is high and to various training games with the swabs. It’s taken about a year of training with this for my Service dog to be consistent with alerts. And for the pressure therapy, I just tell her to lay down on my legs or what I que her as “pressure”
I have a POTS service dog...POTS service dogs alerts to high HR before you realize your going to faint. They preform deep pressure therapy to regulate HR and try to get you to be awake and stay awake from a faint by licking your face. They can also guide you to a safe space to faint or sit down. They also retrieve items that have been dropped so you don’t have to bend down to raise your HR. And they can also protect you during fainting from hitting your head. That’s some of the tasks my service dog does!
I used to want a service dog but idk if one would help me. I pass out pretty much every single time i sit up/stand up and then after standing for 10-20 minutes ill start having larger attacks
@@jessicamariepena9841 The process is different for everyone. But here is how I got my SD (P.S I also have other medical disabilities as well) After getting diagnosed with many life-changing illnesses I needed to find a solution as I had been struggling for many years. I talked with many doctors and couldn’t find a solution that worked very well but always had a service dog in mind in the back of my head. But I knew how much work, money, time, and complications (in public) there would be so a SD was a last resort. After trying many things I was still unable to go to the grocery store without feeling like passing out and my dexcom would tell my 30 minutes after my sugar dropped that I was low, so I was already experiencing bad symptoms when I was notified. During this time I already owned 4 dogs, all GSDs. I talked with a doctor, therapist, family, friends, other SDs teams with my conditions, and people with my conditions without a SD ( btw if you don’t already know SD= service dog). And as a collective decision we thought I could give it a try (I am also a professional dog trainer) I figured that I could try a SD and if a SD didn’t work for me, he washed, or any other reason I could keep him as a pet. So I didn’t have to worry about raising my best friend up then rehoming him because I couldn’t take care of him or something. I ended up buying a Black GSD from a breeder. I picked a breeder for health, temperament, and structure reasons (so I could do mobility). I thought about what breed would fulfill my needs, a GSD was great for me because of the following: I need a large dog for mobility, I need a dog with a good nose to be able to alert to HR and blood sugar, I needed a dog that smart and be able to learn quickly and be persistent and many more reasons. So I then owner trained that dog for 2.5 years and a SD has changed my life for good. Through the process I was judged my many people, lost a lot of fake friends, felt invalid, discriminated against, and throughout dog training it was always 2 steps forward and 1 large step back.Example: Now I am alerted 40 minutes before my blood sugar drops so I don’t get bad symptoms. If you can’t raise and train a puppy because of your disabilities or think you won’t be able to do it. You can also get a program dog that is already 2-3 years old and fully trained for you. Sorry if I didn’t explain it that well. If you have any more questions feel free to ask :) Just know a SD is a big commitment and you will have access issues, people distracting your SD, and you will have to be educated on your laws so if and when the police is called or a manager you can explain how what there doing is illegal and what your doing is legal. That kind of the process I went through in a nut shell
Same! Mine is in training for alerting me to my pots episodes! Hes already fully trained as a psychiatric service dog, as well as trained in response tasks for my pots, for example dpt and item retrieval 😊❤️ service dogs are the best!
Well, I have to sit because my heart rate goes up, then I have to stand to go but when I stand up my heart rate goes up again really fast and I have blackouts... like.. dear heart, what do you want me to do? Lol
It took me 6 years to get diagnosed and mine just gets worse and worse. For some reason my store got rid of all its benches a while back and I was looking for a clear space to die at Walmart and i straight up had a heavy person on an electric cart trying to boss me around and almost ran me over bc shes disabled and has right of way and i needed move. I try not to make a scene and just slomp over bc i can stay standing during my milder attacks(like a runner catching their breath) but dang with how rude people are I really should just flop on the floor. I shouldnt have to cater to other people when im blind and air hungry🥴
@@moondancer7993 what heals pots: Fruit juice with vitamin C (Papaya and oranges) and always put seal salt in it.You need at least 10g of sea salt per day. Sunflower Seeds ( Vitamin B1&B5 , magnesium zinc and iron) Fish with omega 3 ( salmon , sardines) Alkaline water
I love the girl on the floor one 😂😂 Before I got my wheelchair I had so many people ask why I’m sitting in a weird place and I’m just like sorry, I’m trying not to faint 😂😂
not looking like a great idea considering he still hasnt adequately found a way to make up for attending a huge party during lockdown while telling everyone else to stay home
I have relatively mild POTS and extreme reactions to medications so I can only get by on drinking lots of water. Every morning I take four to five salt tablets and that is all I can do to manage it. It is always awkward when I have to explain to a new manager why I need a chair at the register when other employees aren't allowed that or explaining to a professor why I was too out of it to follow the last half of class and need their notes or a recording.
When I was younger I was in a youth organization that had a registered nurse on hand all the time and boy she was amazing for me. She was always telling to to "Sit before you fall" pretty sure they kept me because I helped the recruits learn their history and rank structure. I was apparently the "smart sick kid" lol. I barely passed the physical lol.
6:50 oh my goshhh one of my most public sitting down in random places was in a maths lecture. I was too dizzy to sit in a chair so I was just chilling on the floor with my legs up on the chair in front of me trying to take notes. My friends were so nonchalant but afterwards I got a lot of questions from my teachers lol. Edit: also do you guys get the problem where sometimes you just have to sit down, not because your dizzy but because your legs just nope out? It happened to me in my piano lesson the other day when my teacher asked me to get up so he could show me something. So I guess there’s really two reasons I have to randomly sit down in places ahaha
Once got out of the truck in a parking lot after a hilly drive and had to just lay flat before passing out. I had salt and was laying as flat as i could in my truck but nothing helped. I was so miserable. But what's hilarious is a woman looked at me like i was insane and my husband comes from the drivers side hands me a pillow, looks at the woman staring and shrugs saying, "she has a tendency to throw tantrums. We've learned to ignore her." The look on the woman's face was priceless
I once had to lay on the floor during my science test and had to try to take the test on side, also I do have to sit or lay down sometimes because my legs just give out but sometimes it’s my whole body so I’ll collapse like I’m passing out but I’m still conscious and just can’t move.
I've been sick for about three years now and really scared about if I need to go to events or school when the pandemic is over. I had a few exams before and it was really difficult so I could not sit in class for very long and have no idea how to manage that. It makes me happy to hear it can be done. Though not happy you have to deal with this challenge like me.
My dog isn't a service dog but she warns me when i have a fainting spell coming, if I am sitting, she pins me so i don't get up and fall, if i am standing she lays at my feet. She also will prevent my head from hitting the floor and checks for my breathing (yes i have had spells where i wasn't breathing). She then gets attention of whoever is near by. She was never trained but has always been by my side since she was 4 weeks. She just know my health.
A fellow Izzy with POTS! Hello! Thanks for making this video, it helped me learn a lot more about POTS and some of the different ways people deal with it. I didn’t realize how many different options there were.
I use a walker in public so I always have a place to sit. Best decision I've made. It was hard at first but gave me back the freedom and confidence POTS took from me. Us Potsies have to live our life best we can and not let it keep us down (literally)!
My McDonalds cut back the salt on the fries and just started giving packets. I guess they got a complaint or something lol it used to be more like fry flavoured salt.
I’ve recently been diagnosed with hEDS just this past year. Sooo many pieces of my health puzzle are starting to come together. I haven’t been tested for POTS yet, but I do have a small history of fainting; during a haircut, at the hospital while standing visiting my friend who had just had her baby and then I ended up in the er and they wheeled me back to finish visiting her lol 🤦🏻♀️. There’s have been many many times while out shopping that I get dizzy spells and I crouch down on the floor for a few minutes. You’ve taught me so much thank you Izzy!
I am diagnosed with multiple chronic illnesses including EDS, POTS, MCAS, migraines, gastroparesis, hashimoto's, narcolepsy and hypoglycemia with hypoinsulinemia and insulin resistance. I do have a multipurpose service dog who alerts to high HR before I'm symptomatic enough to pass out from POTS, alerts to low blood sugar before I'm symptomatic enough to pass out from hypoglycemia, alerts to my body slowing down and my breathing changes before I have a narcolepsy attack, does mobility assistance, medication & item retrievals, presses elevator & handicapped door buttons and so much more!! He absolutely makes it so that I can be out in public much more safely. I also have a port and get 2 liters of lactated ringers every single day.
Anybody get palpitations when standing? Ended up getting POTS after having COVID. Legit didn’t know about this disease till after COVID. There needs to be more awareness out there.
I agree, it took years for my diagnosis. First I was told I was dehydrated but when I kept complaining my family dr told my mom i was attention seaking then I was diagnosed with anxiety. Finally saw another dr who refered me to a specialist who told me to drink more friggen water and after like a month of repeatedly going back i had the tilt table test and was diagnosed. Im going on like 11 years of this crap and i wish more people knew bc we need more compassion and deserve faster diagnosis rates.
i haven’t been diagnosed with POTS, but after i had covid in sept i developed POTS symptoms and my quality of life is non existent now. can’t even get my mail or get groceries without getting dizzy or having palpitations
I have palpitations post covid when standing or doing physical things. My heart rate use to go from 60 to a130 and I’d get dizzy. I saw a cardiologist and he said it wasn’t pots, my blood pressure dropped. The heart racing finally ended after a few months, but I’m almost 7 months post covid and still have palpitations and random dizziness. My cardiologist said I had post viral syndrome. I have a lot of nerve issues post covid. Burning in my hands and feet, numbing, tingling.
I have POTS and EDS im 14 and have had it since i was 12 and your videos are amazing they make me always laugh and smile when i have a severe episode!!
just a psa for other potsies, i work in fast food and you don’t have to buy anything to ask for salt packets :) like u can always just go up to the counter/window and ask for salt and if they say no/make u pay tell them it’s a medical emergency. technically you don’t even have to say that
Could you do an updated one of these please? I loved this one 💖 I have POTS too and it’s nice to see how other people are affected and deal with it so you can actually feel normal and know your not alone 💖xxxx
I have a service dog for medical and psychiatric purposes and she helps me alert to lay down and does DPT to help with my POTS. She also tells me when I need to take my meds for it too.
While I haven't been diagnosed, I'm pretty sure I do have POTS. For the past 5 years, I've been having fainting or near fainting spells and my very first one was during a pep rally at my school smack dab in the middle of the national anthem. It progressed to me having a spell almost every day at school to the point where they called the ambulance and gave me the option to go to the hospital or to just go home. I had SO MANY people telling me that I was just faking it and that I just did it for attention. It eventually got to a point where depression was a thing for me and I was eating in the nurse's office during lunch. I was allowed to have a friend with me and the teachers made sure that I got to the office safely. In my junior year, it got so bad that they kicked me out for being a liability to the school and almost wouldn't let me return. My senior year, I was probably under more stress than most other students as not only was I trying to graduate, but I was also catching up on all junior classes as a senior on top of trying to manage my symptoms. I graduated class of '17 like I was supposed to and I just got back from a friend's house. I did almost have a spell multiple times and had to lay down because of it. He made sure I was going to be okay without fully understanding how best to help me and honestly, I'm glad that, despite being in a game with many other players, he tried his best to keep an eye on me. I'm also glad I have an amazing fiance and mom who make sure I'm safe, too. My mom has been by my side ever since the symptoms showed up in my sophomore year of high school. I've been with my fiance off and on for five years and he helps me when no one else can. Sorry for the long comment, I just had to get this off my chest.
Thanks for reuploading. A support system is SO important to be able to learn how to function. What do you do when you pass the hEDS criteria but your doc says it’s too rare and tells you you have HSD? (My parents have EDS signs but are undiagnosed and live in another country)
@@Babygirlriver sorry I don't know if you got diagnosed or not yet but a clear difference between the two is that with vasovagal syncope your heart rate drastically drops but with pots it's elevated 30-40 extra beats per minute during an episode (mine goes up to 40) so you can actually download a heart rate scanner and test yourself and then take that to the doctor
Just got out of the hospital from sepsis from my central line infection. I do 3 liters of fluid (started w saline now its LR) a day just to function. This is like my 8th line infection but none of the meds have helped or the side effects were too much. pots is scary. Eds is scary. Drs who understand are lifesavers. But when they don't its so hard. Fun video! Just what I needed tonight
Yea the risk of infection far outweighs the symptoms from dehydration. You just have to be diligent and drink the fluids. I would know. I have pots. No port here!! Not worth it and kinda silly to risk sepsis when you can drink.
I have a service dog and it is helpful to keep people from hurting themselves when they pass out because the dog can alert them to severe changes in blood pressure or heart rate. Dogs can also be helpful when people with POTS are dizzy (which happens to me a lot) because they can assist with mobility. Service dogs can also do deep pressure therapy to help bring the blood pressure back up because for me, my heart goes up and my blood pressure goes down when I stand up sometimes.
I do yoga weekly and most of the time I'm ok with it but certain positions where I'm a bit upside-down makes me feel slightly nauseous. I also notice if I move my head too fast, like in Cat and Cow, it causes it too so i do it super slow.. sometimes Downward Facing Dog bothers me, sometimes not. But I only do simple type of yoga poses...I wouldn't even know how to do a handstand or a headstand! Some days I feel slightly dizzy when I get up in the morning. Maybe it's linked to if I'm eating hidden gluten (as I have celiac). Yesterday at the supermarket I saw a sticker on packages of raw salmon that said the fish was processed on shared equipment with other major allergens, including wheat! It's a major problem if raw seafood and meat can be cross contaminated with gluten! And not all of the packages had the sticker on them either.
So, for me, all of the poses where I am upside down help my symptoms, but mountain pose and all of the standing up poses make me worse. I have hEDS and neuropathic pain too. Expected to have CCI/AAI but need further testing.. Yoga has been a lifesaver for me. Have done daily practice for a year and getting strong. It has taken me so much commitment and strength training to do the more difficult poses. I do headstands with no pressure on my head but on my forearms. I use a wall to support me while I get the hand of things. I did daily handstands and so much upper strength training for like 9 months before attempted a headstand.. I don't know why they are called headstands when you aren't supposed to put pressure on your head! I also can't eat wheat and propranolol has helped me a lot.
I’m in the process of getting a puppy to train as a medical alert service dog for pots. Dogs can smell the change in blood pressure before it happens, and can let you know that your heart rate is going up before you feel it. Service dogs can be trained for a task called deep pressure therapy, where they lay on your legs or chest and the pressure helps to push the blood back up to your brain and heart to prevent fainting. They also are trained to do DPT if you faint unexpectedly and it helps to bring you out of it faster. They can also perform tasks like picking things up off the ground to prevent leaning over, getting meds, water, or salty snacks. They’re also there to make you feel more protected when you’re having an fainting episode in public. I’m so excited and I highly recommended learning them, they’re truly amazing. If you want some RUclips videos Momming With Migraine has some amazing ones
@@sarad205 I think they meant just like feeling protected or safe by knowing that your dog has your medical situation under control and will be near or on you rather than just laying there unconscious without any kind of safety net, not like actual aggressive protection work
There are just some people who faint so often or when they do it can be dangerous. Some of them need meds afterwards and the doggo can grab it for them. I've thought about getting one for just in case situations. I've never fainted but I'm come close so many times that I feel like one of these times I don't get as lucky. My episodes have also been giving me less warnings. If you only need it while at home, an emotional support animal may be able to be trained to do some of these things aswell without as much cost. It takes a really particular dog to become one though if you want them to be reliable
I just had a rheumatology appt for the first time and went in knowing I was hypermobile and in pain and that we were gonna talk about that, and I went home with the news that I have pots and I was like oh THATS what that feeling is???
I was at church today and I said a prayer for you and everyone else who has EDS. I am taught to love my neighbors as I would love myself. That’s what us Lutherans believe.
I uploaded a few pots and chronic illness related tiktoks a few months ago, but I had to uninstall the app bc it was taking up too much space and making my phone crash :( it sucks, I actually really enjoyed making them, but I can't afford to get a new phone just for an app
I didn’t know we could get service dogs. I can’t do the extra salt thing, because I also have chronic kidney disease and I have to have a low sodium diet, so I get dizzy pretty often
Love the one with the girl laying on the floor 💀 That was me the other day volunteering. Scared the daylights out of another volunteer because I had to stumble to a wall and sit down and she was struggling to get my attention. I felt so bad about scaring her afterwards hahaha
My MFM during my 4th mostly neglected high risk pregnancy told me just to go get a large fry from McDonald’s every day🙃 I puke 24/7. No fry of piece of salt was making it past my esophagus thanks to constantly vomiting lol. There needs to be a HUGE change in the medical field. Everyone, ALL of the specialists, has failed me.
wait, can some one explain to me why being upside down would trigger a flare/faint? would not it help as all the blood would be going to your brain for a change? *Is tempted to attempt a hand stand to see but remembers we must not uses our selves for POTS since.*
Personally, the being upside down itself wouldn't be the issue, but coming out of it would be. Positional changes are a huge problem and going from upside down to upright would be a worse version of standing up. I also have problems with leaning over to pick something off the ground for this reason.
I honestly dont know the science of it but being upside down cause POTS attacks for me. I also cant ride roller coasters anymore bc im in absolute pain and blacked out the whole ride, which is sad bc I love rollar coasters😖
OMGGGG yess. The exercising does help me so much a doctor forced me to stop hooping and I got so much more sick I was fainting like once a day I never do anymore it’s so rare
I have found my people. My bf hates that I eat so much salt bc he hates salt lol it was a daily argument at one point but he understands and just started making me food with extra salt separately from his. I do not know anyone else with my condition and the many times I've been hospitalized they didn't even know what it was either.
Also i use to get nervous to stop in the middle of places but my bf would dang near put me on the floor bc he didnt want me to pass out lol my mom is super overbearing too but im glad i have support.
I hate that I have to eat so much salt, whenever I complain about it to my family they are always saying how so many people would love for their doctor to tell them to eat more salt.
I really want that tick tockers profile to follow as well! You should link them if you're sharing them. Unless I have brain fog and just can't find it lol
I was diagnosed with tachycardia this year, my mom and grandma have it and when I work out my heart rate gets to 209 😭 it does it all the time ima about to go to a stress test on my heart
I wish my boyfriend/ baby daddy would be as caring as that girls in the video. Mine always pressures me to push my limits even when I don't feel good. I know I need to push some but when I really don't feel good he still pressures me. He is mad too because since March 2019 after our son was born was when I got POTS. I have been bedbound since and the Drs can't figure out what to do to help me sit up or stand w/o passing out. He is mad because he said it shouldn't take this long and he feels I am not really trying to get better. I feel so alone though, I live with my mom and grandma and younger sisters too, but no one gets it. My gmom and one of my sisters throws it in my face that I can't get up and help my son all the time, and no one else understands how much it hurts that they do things without me as his firsts. The people who have a good support system are sooo lucky. From the outside people tell me how lucky I am to have my family helping me but no one understands that it comes with a price and it's really breaking me apart. I didn't have POTS before my son so this is all new to all of us I get that but I feel like I have no one to talk to about it. I even went to standford hospital in California and they couldn't help me. I've tried different meds and changing my diet nothing is helping. I dont know what else to do. I don't want to live my life from a bed for the rest of my life and miss out on everything. I keep praying but it's so hard to see the light. I don't know how others can do this. I wouldn't even wish this on my enemies. It's too much. Sorry I vented...I think I just needed to get it off my chest. I enjoyed watching you video though. I would like to see some more pots tic tok reacting videos from you.
I'm so sorry you are going through such a difficult time. All you can do is continue communicating and seeking help. It's a confusing time for all of you and it sounds like your family is in denial. You have no reason to feel shame or guilt. I'm sure you are grieving those moments you aren't able to have with your child and I hope your family can become sensitive to your situation. I'm sure everything's about the baby so you're kinda on the back burner but seriously keep searching for help. That's not right you are experiencing such a prolonged illness after pregnancy. Have you had an echocardiogram?
Destiny Mignogna yeah that’s a really hard situation, I’m sorry you have to deal with this. I agree with Poppy, but if I might add something: why not try and show your family members some videos like Izzy’s? Or there are some really good info graphics and comics with information on social media! Perhaps even some of the comments from other people in the community? I understand it might not be feasible, but showing that it’s not made up, and it’s not just you might help your SO and family understand and give you the support you need to recover. Stress certainly doesn’t help either so is there someone you can reach out to? A medical professional would be ideal so you can vent in a healthy environment and maybe identify some triggers which make it worse? I hope things get better for you, and you can manage your symptoms ❤️ hugs to you
My cardiologist and my POTS physical therapist said the main thing you want to avoid is staying in bed. It will make you intolerant to being upright and lead to deconditioning which makes everything worse. I find this to be true for myself and my kids (we all have dysautonomia and EDS) so even if I feel like I can't do it that day, I still get out of bed even if it's to sit on the couch. The Levine protocol for POTS was really starting to ease my symptoms until I had to have surgery which reversed all of my progress and now I'm starting over. It's difficult because I thought I was going to be much further along by now in managing my symptoms, but at least now I know what to do to get back to where I was.
My sister has NCS. She has a pit she adopted (fully grown when she got her) and she trained her for pressure (laying on her) and just being there for the anxiety as she comes to. She adopted a pit husky pup after and trained him to do the same things, as well as helping her stand up. She'll put her arms around his neck, he'll tense up his body and then she's able to pull herself off the ground. He's got other tasks he's learning, but those are the main ones right now.
I got my POTS diagnose some days ago. Before the tilt table test the doctor just said, well, all i tell is absolutely normal and happens to all of us. After the test she said i have got a POTS curve out of the medical textbook. Her advice: Drink lots of fluid, take salt and do some sports. Due to the fact that i have got Neurogenic Bladder and ME, and Interstitial Cystitis, and Sprue, and perhaps Diabetes Insipidus - that advice was not helpful at all. By the way, you helped me a lot with one of your videos, i tested myself at home and went to a neurologist with my suspicion.
I’ve recently been diagnosed with hEDS just this past year. Sooo many pieces of my health puzzle are starting to come together. I haven’t been tested for POTS yet, but I do have a small history of fainting; during a haircut, at the hospital while standing visiting my friend who had just had her baby and then I ended up in the er and they wheeled me back to finish visiting her lol 🤦🏻♀️. There’s have been many many times while out shopping that I get dizzy spells and I crouch down on the floor for a few minutes.
My 26 year old has POTS/ Orthostatic hypertension they have him on meds to bring his BP up.. hes now a type1 diabetic he sufferes with migraines daily where he losses his sight then gets pain in the top right side of his head ( I get the same migraines and pain in the same spot) hes had 13 little tumors in his head they removed 1 behind his right eye and put mesh to replace the schull they took out ... hes on like 15 different meds . I hate when he blacks out because he's 6'9" tall and when he goes out he goes down very hard .. hes gone for the IV where he had to lay in the dark for hours .. all his drs won't let him drive or work .. and he's been fighting for disability but he's been denied drs dont understand how he can't get it..
Also you really don't have to buy anything to get packets of salt. You can go through the drive through. Ask for a water and salt. Say you are another person has a medical issue where you pass out. Most people are going to understand and do it immediately. McDonald's also doesn't charge for salt. If you go in, how would they know you arnt a customer who go to go and forgot to get it. Don't worry about needing to buy anything. Even going to a local deli. Gas stations may even have some! Goodluck guys!
Searching for POTS videos was a good idea for me- A few days ago my mom realized I might have POTS due to me starting to black out after getting up especially when I'm not hydrated, and lately it's been happening a lot and I just so happen to be a person who has no sense of time and doesn't check the time ift3n to see how long it's been since I last drank water. Sometimes it'll be just like some dizziness sometimes it's slightly dark vision but from time to time it's almost completely black. No fainting so far but this could definitely be POTS
Can pots make you dizzy while just standing up/ sitting down minding your business or is it only when standing? Sorry I'm new to this condition and I'm really eager to learn more! Sorry to anyone who suffers you're so strong!
@@Mollyy8716 In case you’re still interested: I get presyncope when seated upright for extended periods. Standing is definitely a more obvious/frequent trigger, though.
I had to stop yoga because id get dizzy. I’d pass out because of working out and get dizzy while doing most things . My doctor gave me medication but I never saw a neurologist because of this.
Take sea moss non gmo's it has 92 minerals your body needs make sure you do your own research before taking, add pink Himalayan salt to water and lemon juice. Shouldn't be able to taste it if you do that means to much. Hope this helps someone. It has also helped me manage my pots, ❤
I have had two service dogs for HBP, fainting, fibromyalgia, anxiety and migraines. They alerted, they could pull wheelchairs, pick up or hold things for me, hit the door opener when we went to malls etc, find an exit and lead me to it, lay down over me if I did faint, DPT... I had so much more independence! But, someone gave my first one food soaked in antifreeze and she died on the way through the vet door. My second one is still alive and only works from home now (I guess SD to trained ESA), because he ran into so many pets and mean people in stores that grabbed him, threatened to hit him, dogs jumping out of carts to bite him (even a monkey once), that he got too worried about working in stores anymore and that wasn't fair to him to make him suck it up and work anyway. So he and I are always at home together. I basically only go out if my kids need me to or if I am at the doctors again. I miss going to more places to see things and not worry about what could happen or if someone can take time from their day to come with me. I can't afford another dog to raise and train, and honestly, I don't think I could take any more emotional toll either. 💔
You can do Yoga without stretching especially an EDSer. Things that were stretches for other people were often strength poses for me. Avoid Yin Yoga and holding poses too long. Power Yoga and Flow were great for me when I still had the endurance and strength. Important to not follow blindly and know that there are poses that need to be skipped or modified.
I have seen side effects of POTS, and one of those things is seizures. Have you ever had any problems that? My mom had Tachycardia but hers was called PAT.
I add this comment under many POTS videos' as I found few things that worked for me and reversed(not cured yet) the progress of my POTS , so I hope they can do it for you too.. I am a guy with POTS, a rare bird I know and it took a while to get diagnosed, but once I was the most help I was given was a handful of medication. Before my diagnose I was, as most of you, mistaken for having anxiety. A busy doctor prescribed me Xanax and let me go. That thing works, but it comes at a HUGE price so I took it twice and did not anymore. Since the other pills did help some, but not enough, I went on and did a internet research on substances like Xanax, benzos in general, and why the positive effect on POTS. It turns out the answer is simple - neurotransmitters. We lack some, our immune system is causing problems with some attacking specific receptors like ACH2 one. Knowing this then I went and did a research on what non addictive, no side effect substance can do similar thing as the benzos as they were not an option and for my surprise found one. Found a German study on special Lavender extract, did try it and it did miracles for me! In US it is sold as CalmAid lavender. I take one in the morning and sometimes one before bed. Recently I am not taking it on regular basis anymore as I don't need it much. No side effects, no withdrawal symptoms, only lavender burps. Usually taking it on empty stomach, Gave me my life back and allowed me to start exercising. On exercising - very important for POTS, and almost impossible for us! But there is a work around for that too - start swimming! When in water you don't get the orthostatic effects from gravity. Actually standing in upright in water will increase the blood volume your hearth can work with and will make exercising easy. Exercising will on its turn increase you blood volume and hearth strength, that will make standing easy. It does not happen overnight, but in few weeks you will feel the benefits. I hope all of you find this helpful.
My parents think I have this because I told them a few days ago that I get dizzy after standing up after sitting down and because if I stand up for a bit too long, I start getting abdominal pain and feel breathless (there are many other things, but these are just the most prominent), but I don’t ever feel faint fro, it, it’s never that severe so I doubt I have this, so I’ve been watching a lot of videos to make sure. The reason I’m kinda worried is because Ive been restricting my diet an awful lot (I know I shouldn’t do this I’m trying to stop), and apparently you can develop this from an eating disorder (more stuff to it than restricting diet of course, can’t be bothered to explain)
I don't know if you've had this checked out or not and I'm not trying to "diagnose" you, I just thought I'd mention this cause of personal experience. What it also could be is Autonomic Dysfunction, it's very similar to POTS cause it's kinda like a spectrum and POTS is at the very top end of the spectrum. I was diagnosed with this and was told that it could eventually develop fully into POTS if I don't try to help counteract the symptoms. Again in no way am I trying to diagnose you, I just thought I'd mention it cause your situation sounds very similar to mine pre-diagnosis, except I did feel faint and have vision blackouts.
Hehehehe loved the one where people around you are used to your issues 🙈🤣 i get looked at when i get hemiplegic migraines ppl be like are you having a stroke like nooo jist a migraine 😅😅
I suspect that I have hEDS. Idk about POTS, but I do know my heart races and I’ll need to sit until my heart calms down. Recently, I was at an event with my fiancé and I had to sit and then lie down. People thought I was drunk ☹️
I can not to upside down. Have never been able too. Other kids in the playground would happily hang upside down, while my head would feel like it was about to pop from the blood rushing in
@@IzzyKDNA The question is, is it the POTS or the hypermobility 🤔. I can only assume its due to the hypermobility because that came first for me. POTS set in during puberty
Hey, I’ve heard that having anemia can contribute to pots or even cause it. I’ve also heard that and cast can cause pots. Can you talk a little bit about anemia and MCAS potentially causing pots
I have POTS don’t know how many times I’ve passed out hurt myself ect. I have to have IV fluids a lot , my doctor has tried beta blockers , compression socks everything. I have been told to drink more fluids and eat more salt. But my doctor have given me vitamins , Gatorade etc. I was wrongly diagnosed multiple times before they did the tilted table test and diagnosed with pots.
I have a fairly rare (at least for my provider team) mess of Autonomic Nervous System Dysfunction. My brainstem is the problem. In short, if it's controlled by the brainstem then it's fucked up. My sleep patterns are screwed up. My blood pressure runs sky high and is so bad that it has caused minor kidney and liver damage and fairly moderate glaucoma. My heart rate on an average day if listened with a stethoscope sounds like a weird disco dance tune. My stomach empties either too slow or fast (typically slow). Same with my intestinal tract unless I am wearing my corset (no I don't understand how a corset regulates my gastro tract i.e. stomach to the rear end). And I have central pain syndrome and CRPS too.....
One question now that I feel the POTS community is here... Is it still POTS if it happens while going on stairs and after a certain time standing or walking? Or doing exercise?
I have a friend that has all the symptoms and she always gets migraines and has to get her blood drawn and her bitch of a brother keeps making fun of her and tells her she’s faking and even the doctors say she’s not he always calls her “potty” and she’s even passed out before so I’m trying to learn as much as possible to help as much as I can
I went to the hospital for the first time dealing with pots and they told me that I needed to drink 6 bottles of Gatorade and 3 tablespoons of salt a day and that my eds was connected somehow but I'm only 11 so I am not sure how
I came down with Pots after surgery last June. If I take too much salt, it makes me sick. I'm 67 years old. Does the betablockers Propanaol stop working after 1 year? That's what I'm taking now. I lost all my hair. Exercise brings my symptoms back. What stops the dizziness?
I went to a cardiologist recently to get tested for POTS and after a quick sitting to standing test, they ruled it out, but the other day I went to my PT (I have hEDS) and she noticed that I was out of breath and sweating very hard after a super short walk, so she took my heart rate and did some tests on me and then told me she's nearly positive that I do have POTS because my heart rate went from 92 to 150 when I stood and went back down when I laid down again and I have a lot of the symptoms. I'm very confused. Does anyone have any Idea what is going on or has this happened to someone else?
You most likely do have it most cardiologist's don't believe in POTS that's why it's varry hard for people to get it diagnosed a lot of doctors just say it's anxiety when it's not
@@mikaelathompson mine doesn't either n I'm gonna be doing tests but my doctor and neurologist said I have POTS & diagnosed me with it 👀 I'm kinda nervous about my cardiologist cuz she's trying to prove it's not POTS 🤦 like, I trust two ppl way more than ONE person
I'm glad that you mentioned about Jacquie? I do have a question as well. I have tried some different things like Pedialyte and Liquid IV? Even now they say they have a flavor you can't taste the flavor and it seems like it is hard to drink but I can drink something like Crystal Light faster and in bigger quantities? Is there something that is like these that will do the same thing but really is much better tasting and much easier? When I am taking things like Liquid IV, I have noticed that I sort of start to get a feeling of getting sick to my stomach? Thank You for your video.
Hi, this is a very late reply. But you might want to try Vitalyte! I too have a sensitive stomach to those kinds of drink mixes and Vitalyte has never upset me!
Reuploaded it! I accidentally uploaded the first one with too low of quality. Sorry!
I'm glad that you mentioned about Jacquie? I do have a question as well. I have tried some different things like Pedialyte and Liquid IV? Even now they say they have a flavor you can't taste the flavor and it seems like it is hard to drink but I can drink something like Crystal Light faster and in bigger quantities? Is there something that is like these that will do the same thing but really is much better tasting and much easier? When I am taking things like Liquid IV, I have noticed that I sort of start to get a feeling of getting sick to my stomach?
Thank You for your video.
Hi I’m 12 I have pots too and this has helped me I don’t like have pots I have to go out of class sometimes because my heart was 145 and my school sent me home “because I was her liability but my school complained about me missing school for other reasons I had to reset and drink a Gatorade and then I was perfectly fine
I have a service dog for POTS. She alerts when my heart rate gets too high so I can lay down, from there she will perform deep pressure therapy to help raise blood pressure and prevent blood pooling
How do you train a dog to do this?!
@@chelseakatie02 most of it is natural which is rare, but to develop the natural alert, I use scent training by swabbing my cheek with a cotton swab when my hr is normal, and another when my heart rate is high and to various training games with the swabs. It’s taken about a year of training with this for my Service dog to be consistent with alerts. And for the pressure therapy, I just tell her to lay down on my legs or what I que her as “pressure”
Dogs are so amazing! I’m so happy you have a companion to care for you unconditionally
Your dog = a good grrrl.
SAME! This is what my boy does as well! Also picking things up so I don’t bend over so I don’t pass out!
I have a POTS service dog...POTS service dogs alerts to high HR before you realize your going to faint. They preform deep pressure therapy to regulate HR and try to get you to be awake and stay awake from a faint by licking your face. They can also guide you to a safe space to faint or sit down. They also retrieve items that have been dropped so you don’t have to bend down to raise your HR. And they can also protect you during fainting from hitting your head. That’s some of the tasks my service dog does!
I used to want a service dog but idk if one would help me. I pass out pretty much every single time i sit up/stand up and then after standing for 10-20 minutes ill start having larger attacks
Dogs are amazing 🥰
What’s the process for getting a service dog?
@@jessicamariepena9841 The process is different for everyone. But here is how I got my SD (P.S I also have other medical disabilities as well) After getting diagnosed with many life-changing illnesses I needed to find a solution as I had been struggling for many years. I talked with many doctors and couldn’t find a solution that worked very well but always had a service dog in mind in the back of my head. But I knew how much work, money, time, and complications (in public) there would be so a SD was a last resort. After trying many things I was still unable to go to the grocery store without feeling like passing out and my dexcom would tell my 30 minutes after my sugar dropped that I was low, so I was already experiencing bad symptoms when I was notified. During this time I already owned 4 dogs, all GSDs. I talked with a doctor, therapist, family, friends, other SDs teams with my conditions, and people with my conditions without a SD ( btw if you don’t already know SD= service dog). And as a collective decision we thought I could give it a try (I am also a professional dog trainer) I figured that I could try a SD and if a SD didn’t work for me, he washed, or any other reason I could keep him as a pet. So I didn’t have to worry about raising my best friend up then rehoming him because I couldn’t take care of him or something. I ended up buying a Black GSD from a breeder. I picked a breeder for health, temperament, and structure reasons (so I could do mobility). I thought about what breed would fulfill my needs, a GSD was great for me because of the following: I need a large dog for mobility, I need a dog with a good nose to be able to alert to HR and blood sugar, I needed a dog that smart and be able to learn quickly and be persistent and many more reasons. So I then owner trained that dog for 2.5 years and a SD has changed my life for good. Through the process I was judged my many people, lost a lot of fake friends, felt invalid, discriminated against, and throughout dog training it was always 2 steps forward and 1 large step back.Example: Now I am alerted 40 minutes before my blood sugar drops so I don’t get bad symptoms. If you can’t raise and train a puppy because of your disabilities or think you won’t be able to do it. You can also get a program dog that is already 2-3 years old and fully trained for you. Sorry if I didn’t explain it that well. If you have any more questions feel free to ask :) Just know a SD is a big commitment and you will have access issues, people distracting your SD, and you will have to be educated on your laws so if and when the police is called or a manager you can explain how what there doing is illegal and what your doing is legal. That kind of the process I went through in a nut shell
Same! Mine is in training for alerting me to my pots episodes! Hes already fully trained as a psychiatric service dog, as well as trained in response tasks for my pots, for example dpt and item retrieval 😊❤️ service dogs are the best!
Laying on the floor is second nature. Today ai had to lay in the middle of walmart because i was lightheaded. And it was so busy
Well, I have to sit because my heart rate goes up, then I have to stand to go but when I stand up my heart rate goes up again really fast and I have blackouts... like.. dear heart, what do you want me to do? Lol
@@blues1589 i had pots for 1 year im good now babyyyyyyyyyyyyyyyyyyyyy
It took me 6 years to get diagnosed and mine just gets worse and worse. For some reason my store got rid of all its benches a while back and I was looking for a clear space to die at Walmart and i straight up had a heavy person on an electric cart trying to boss me around and almost ran me over bc shes disabled and has right of way and i needed move. I try not to make a scene and just slomp over bc i can stay standing during my milder attacks(like a runner catching their breath) but dang with how rude people are I really should just flop on the floor. I shouldnt have to cater to other people when im blind and air hungry🥴
@@moondancer7993 what heals pots:
Fruit juice with vitamin C (Papaya and oranges) and always put seal salt in it.You need at least 10g of sea salt per day.
Sunflower Seeds ( Vitamin B1&B5 , magnesium zinc and iron)
Fish with omega 3 ( salmon , sardines)
Alkaline water
@@ffdss6951 i am going to try all your recommendations. Thank you for sharing this! I am going through it 😭😭😭
I love the girl on the floor one 😂😂 Before I got my wheelchair I had so many people ask why I’m sitting in a weird place and I’m just like sorry, I’m trying not to faint 😂😂
Yes you were correct! My Port is for IV fluids :)
Would you ever do a collab with doctor mike and maybe talk about EDS or POTS with him. I would love it.
Omg yesss please
PLEASE
Please especially after his mini eds segment the other month
YUUUUUUSSS DOCTOR MIIIIKKKEE
not looking like a great idea considering he still hasnt adequately found a way to make up for attending a huge party during lockdown while telling everyone else to stay home
I have relatively mild POTS and extreme reactions to medications so I can only get by on drinking lots of water. Every morning I take four to five salt tablets and that is all I can do to manage it. It is always awkward when I have to explain to a new manager why I need a chair at the register when other employees aren't allowed that or explaining to a professor why I was too out of it to follow the last half of class and need their notes or a recording.
When I was younger I was in a youth organization that had a registered nurse on hand all the time and boy she was amazing for me. She was always telling to to "Sit before you fall" pretty sure they kept me because I helped the recruits learn their history and rank structure. I was apparently the "smart sick kid" lol. I barely passed the physical lol.
6:50 oh my goshhh one of my most public sitting down in random places was in a maths lecture. I was too dizzy to sit in a chair so I was just chilling on the floor with my legs up on the chair in front of me trying to take notes. My friends were so nonchalant but afterwards I got a lot of questions from my teachers lol.
Edit: also do you guys get the problem where sometimes you just have to sit down, not because your dizzy but because your legs just nope out? It happened to me in my piano lesson the other day when my teacher asked me to get up so he could show me something.
So I guess there’s really two reasons I have to randomly sit down in places ahaha
Once got out of the truck in a parking lot after a hilly drive and had to just lay flat before passing out. I had salt and was laying as flat as i could in my truck but nothing helped. I was so miserable.
But what's hilarious is a woman looked at me like i was insane and my husband comes from the drivers side hands me a pillow, looks at the woman staring and shrugs saying, "she has a tendency to throw tantrums. We've learned to ignore her." The look on the woman's face was priceless
I once had to lay on the floor during my science test and had to try to take the test on side, also I do have to sit or lay down sometimes because my legs just give out but sometimes it’s my whole body so I’ll collapse like I’m passing out but I’m still conscious and just can’t move.
I've been sick for about three years now and really scared about if I need to go to events or school when the pandemic is over. I had a few exams before and it was really difficult so I could not sit in class for very long and have no idea how to manage that. It makes me happy to hear it can be done. Though not happy you have to deal with this challenge like me.
Omg thank you for including my video!!! You’re too kind!! Just subscribed- so into your content :)
My dog isn't a service dog but she warns me when i have a fainting spell coming, if I am sitting, she pins me so i don't get up and fall, if i am standing she lays at my feet. She also will prevent my head from hitting the floor and checks for my breathing (yes i have had spells where i wasn't breathing). She then gets attention of whoever is near by. She was never trained but has always been by my side since she was 4 weeks. She just know my health.
A fellow Izzy with POTS! Hello! Thanks for making this video, it helped me learn a lot more about POTS and some of the different ways people deal with it. I didn’t realize how many different options there were.
Watching this video after my very first ER trip for pots. Yay for iv saline
ugh im so sorry you had to go to the ER
@@IzzyKDNA Thanks :) I’m just lucky they had really great staff
Oof I just got back from the er for it too
The quality is so much better on this one verses the first!
When I was 12 I got my first heavy symptoms of POTS and salt was a struggle, I always needed so much haha
I use a walker in public so I always have a place to sit. Best decision I've made. It was hard at first but gave me back the freedom and confidence POTS took from me. Us Potsies have to live our life best we can and not let it keep us down (literally)!
Today I was chilling on the floor next to my table with like 5 open chairs. Sometimes you just have to get even lower haha
Don't need to order something just to get packets of salt at McDonald's. The fries alone have 15 packets of salt on them lol. Just need fries
My McDonalds cut back the salt on the fries and just started giving packets. I guess they got a complaint or something lol it used to be more like fry flavoured salt.
@@maggiethedruid9010 lol they have so much salt on them where I live their almost not edible. But no one bothers speaking up so it just stays the same
Get a large fry! You'll thank us later.
I’ve recently been diagnosed with hEDS just this past year. Sooo many pieces of my health puzzle are starting to come together. I haven’t been tested for POTS yet, but I do have a small history of fainting; during a haircut, at the hospital while standing visiting my friend who had just had her baby and then I ended up in the er and they wheeled me back to finish visiting her lol 🤦🏻♀️. There’s have been many many times while out shopping that I get dizzy spells and I crouch down on the floor for a few minutes. You’ve taught me so much thank you Izzy!
I am diagnosed with multiple chronic illnesses including EDS, POTS, MCAS, migraines, gastroparesis, hashimoto's, narcolepsy and hypoglycemia with hypoinsulinemia and insulin resistance.
I do have a multipurpose service dog who alerts to high HR before I'm symptomatic enough to pass out from POTS, alerts to low blood sugar before I'm symptomatic enough to pass out from hypoglycemia, alerts to my body slowing down and my breathing changes before I have a narcolepsy attack, does mobility assistance, medication & item retrievals, presses elevator & handicapped door buttons and so much more!! He absolutely makes it so that I can be out in public much more safely.
I also have a port and get 2 liters of lactated ringers every single day.
Anybody get palpitations when standing? Ended up getting POTS after having COVID. Legit didn’t know about this disease till after COVID. There needs to be more awareness out there.
I agree, it took years for my diagnosis. First I was told I was dehydrated but when I kept complaining my family dr told my mom i was attention seaking then I was diagnosed with anxiety. Finally saw another dr who refered me to a specialist who told me to drink more friggen water and after like a month of repeatedly going back i had the tilt table test and was diagnosed. Im going on like 11 years of this crap and i wish more people knew bc we need more compassion and deserve faster diagnosis rates.
i haven’t been diagnosed with POTS, but after i had covid in sept i developed POTS symptoms and my quality of life is non existent now. can’t even get my mail or get groceries without getting dizzy or having palpitations
I have palpitations post covid when standing or doing physical things. My heart rate use to go from 60 to a130 and I’d get dizzy. I saw a cardiologist and he said it wasn’t pots, my blood pressure dropped. The heart racing finally ended after a few months, but I’m almost 7 months post covid and still have palpitations and random dizziness. My cardiologist said I had post viral syndrome.
I have a lot of nerve issues post covid. Burning in my hands and feet, numbing, tingling.
I have POTS and EDS im 14 and have had it since i was 12 and your videos are amazing they make me always laugh and smile when i have a severe episode!!
just a psa for other potsies, i work in fast food and you don’t have to buy anything to ask for salt packets :) like u can always just go up to the counter/window and ask for salt and if they say no/make u pay tell them it’s a medical emergency. technically you don’t even have to say that
Could you do an updated one of these please? I loved this one 💖 I have POTS too and it’s nice to see how other people are affected and deal with it so you can actually feel normal and know your not alone 💖xxxx
I have a service dog for medical and psychiatric purposes and she helps me alert to lay down and does DPT to help with my POTS. She also tells me when I need to take my meds for it too.
While I haven't been diagnosed, I'm pretty sure I do have POTS. For the past 5 years, I've been having fainting or near fainting spells and my very first one was during a pep rally at my school smack dab in the middle of the national anthem. It progressed to me having a spell almost every day at school to the point where they called the ambulance and gave me the option to go to the hospital or to just go home. I had SO MANY people telling me that I was just faking it and that I just did it for attention. It eventually got to a point where depression was a thing for me and I was eating in the nurse's office during lunch. I was allowed to have a friend with me and the teachers made sure that I got to the office safely. In my junior year, it got so bad that they kicked me out for being a liability to the school and almost wouldn't let me return. My senior year, I was probably under more stress than most other students as not only was I trying to graduate, but I was also catching up on all junior classes as a senior on top of trying to manage my symptoms. I graduated class of '17 like I was supposed to and I just got back from a friend's house. I did almost have a spell multiple times and had to lay down because of it. He made sure I was going to be okay without fully understanding how best to help me and honestly, I'm glad that, despite being in a game with many other players, he tried his best to keep an eye on me. I'm also glad I have an amazing fiance and mom who make sure I'm safe, too. My mom has been by my side ever since the symptoms showed up in my sophomore year of high school. I've been with my fiance off and on for five years and he helps me when no one else can. Sorry for the long comment, I just had to get this off my chest.
Hey I just got diagnosed with pots go to the Cardiologis and ask for a tilt table test
It’s common for it to show up after puberty or even after a viral illness or can just get worse if you had at your whole life
Thank you so much for sharing and Happy Thanksgiving.
Your theme music at the end makes me happy :)
Thanks for reuploading. A support system is SO important to be able to learn how to function.
What do you do when you pass the hEDS criteria but your doc says it’s too rare and tells you you have HSD? (My parents have EDS signs but are undiagnosed and live in another country)
I haven’t been diagnosed with POTS but I have fainting or near fainting spells and let me tell you I have had to lay on the ground all over the place
do you think you have vasol vagal sorry idk how to spell it haha cuz that’s what i have
@@allielittere6261 I’m not sure. My doctor said it may have to do with vagus nerves or something like that.
@@Babygirlriver sorry I don't know if you got diagnosed or not yet but a clear difference between the two is that with vasovagal syncope your heart rate drastically drops but with pots it's elevated 30-40 extra beats per minute during an episode (mine goes up to 40) so you can actually download a heart rate scanner and test yourself and then take that to the doctor
@@angelanicole887 I haven’t been diagnosed yet but I’m definitely going to try that out checking my heart rate
Just got out of the hospital from sepsis from my central line infection. I do 3 liters of fluid (started w saline now its LR) a day just to function. This is like my 8th line infection but none of the meds have helped or the side effects were too much. pots is scary. Eds is scary. Drs who understand are lifesavers. But when they don't its so hard. Fun video! Just what I needed tonight
Yea the risk of infection far outweighs the symptoms from dehydration. You just have to be diligent and drink the fluids. I would know. I have pots. No port here!! Not worth it and kinda silly to risk sepsis when you can drink.
lmaooo i do that thumbs up after fainting all the time
I've done the thumbs-up from the ground, more times than I can remember!
I have a service dog and it is helpful to keep people from hurting themselves when they pass out because the dog can alert them to severe changes in blood pressure or heart rate. Dogs can also be helpful when people with POTS are dizzy (which happens to me a lot) because they can assist with mobility. Service dogs can also do deep pressure therapy to help bring the blood pressure back up because for me, my heart goes up and my blood pressure goes down when I stand up sometimes.
As someone who recently got diagnosed with pots your account really helps ❤
Hey could you tell me are you younger? And did you take the covid yaccine
React to GP tictoks
I do yoga weekly and most of the time I'm ok with it but certain positions where I'm a bit upside-down makes me feel slightly nauseous. I also notice if I move my head too fast, like in Cat and Cow, it causes it too so i do it super slow.. sometimes Downward Facing Dog bothers me, sometimes not. But I only do simple type of yoga poses...I wouldn't even know how to do a handstand or a headstand!
Some days I feel slightly dizzy when I get up in the morning. Maybe it's linked to if I'm eating hidden gluten (as I have celiac). Yesterday at the supermarket I saw a sticker on packages of raw salmon that said the fish was processed on shared equipment with other major allergens, including wheat! It's a major problem if raw seafood and meat can be cross contaminated with gluten! And not all of the packages had the sticker on them either.
So, for me, all of the poses where I am upside down help my symptoms, but mountain pose and all of the standing up poses make me worse. I have hEDS and neuropathic pain too. Expected to have CCI/AAI but need further testing.. Yoga has been a lifesaver for me. Have done daily practice for a year and getting strong. It has taken me so much commitment and strength training to do the more difficult poses. I do headstands with no pressure on my head but on my forearms. I use a wall to support me while I get the hand of things. I did daily handstands and so much upper strength training for like 9 months before attempted a headstand.. I don't know why they are called headstands when you aren't supposed to put pressure on your head! I also can't eat wheat and propranolol has helped me a lot.
Welcome to the salt team 🎉
I’m in the process of getting a puppy to train as a medical alert service dog for pots. Dogs can smell the change in blood pressure before it happens, and can let you know that your heart rate is going up before you feel it. Service dogs can be trained for a task called deep pressure therapy, where they lay on your legs or chest and the pressure helps to push the blood back up to your brain and heart to prevent fainting. They also are trained to do DPT if you faint unexpectedly and it helps to bring you out of it faster. They can also perform tasks like picking things up off the ground to prevent leaning over, getting meds, water, or salty snacks. They’re also there to make you feel more protected when you’re having an fainting episode in public. I’m so excited and I highly recommended learning them, they’re truly amazing. If you want some RUclips videos Momming With Migraine has some amazing ones
Service dogs can’t be trained for protection per federal law...
Omg that sounds so cool!!! I’ll definitely look into getting one when I’m older
@@sarad205 I think they meant just like feeling protected or safe by knowing that your dog has your medical situation under control and will be near or on you rather than just laying there unconscious without any kind of safety net, not like actual aggressive protection work
There are just some people who faint so often or when they do it can be dangerous. Some of them need meds afterwards and the doggo can grab it for them. I've thought about getting one for just in case situations. I've never fainted but I'm come close so many times that I feel like one of these times I don't get as lucky. My episodes have also been giving me less warnings. If you only need it while at home, an emotional support animal may be able to be trained to do some of these things aswell without as much cost. It takes a really particular dog to become one though if you want them to be reliable
I just had a rheumatology appt for the first time and went in knowing I was hypermobile and in pain and that we were gonna talk about that, and I went home with the news that I have pots and I was like oh THATS what that feeling is???
I was at church today and I said a prayer for you and everyone else who has EDS. I am taught to love my neighbors as I would love myself. That’s what us Lutherans believe.
Oh I love starship!
Service dogs can also help ease you to the ground as you are losing consciousness and even slightly buffer your fall.
I uploaded a few pots and chronic illness related tiktoks a few months ago, but I had to uninstall the app bc it was taking up too much space and making my phone crash :( it sucks, I actually really enjoyed making them, but I can't afford to get a new phone just for an app
I really miss Jackie 😢 I love rewatching her videos
I love these videos! You should make it a series💕
Hheheheh I think I will!
Thanks for sharing
I didn’t know we could get service dogs. I can’t do the extra salt thing, because I also have chronic kidney disease and I have to have a low sodium diet, so I get dizzy pretty often
Love the one with the girl laying on the floor 💀 That was me the other day volunteering. Scared the daylights out of another volunteer because I had to stumble to a wall and sit down and she was struggling to get my attention. I felt so bad about scaring her afterwards hahaha
My MFM during my 4th mostly neglected high risk pregnancy told me just to go get a large fry from McDonald’s every day🙃 I puke 24/7. No fry of piece of salt was making it past my esophagus thanks to constantly vomiting lol. There needs to be a HUGE change in the medical field. Everyone, ALL of the specialists, has failed me.
Me reading comments during ad and the intro: ah so if I do actually have POTS I might need a service dog in the future, got it xd
wait, can some one explain to me why being upside down would trigger a flare/faint? would not it help as all the blood would be going to your brain for a change? *Is tempted to attempt a hand stand to see but remembers we must not uses our selves for POTS since.*
For me, being upside down helps me so much!!! I have POTS, hEDS, and neuropathic pain. Maybe CCI/AAI. I'm getting stronger.
Personally, the being upside down itself wouldn't be the issue, but coming out of it would be. Positional changes are a huge problem and going from upside down to upright would be a worse version of standing up. I also have problems with leaning over to pick something off the ground for this reason.
@@mithril3966 Aaaah yes this makes sence!
I honestly dont know the science of it but being upside down cause POTS attacks for me. I also cant ride roller coasters anymore bc im in absolute pain and blacked out the whole ride, which is sad bc I love rollar coasters😖
It’s the getting back up and having it all drop even more dramatically
OMGGGG yess. The exercising does help me so much a doctor forced me to stop hooping and I got so much more sick I was fainting like once a day I never do anymore it’s so rare
I have found my people. My bf hates that I eat so much salt bc he hates salt lol it was a daily argument at one point but he understands and just started making me food with extra salt separately from his. I do not know anyone else with my condition and the many times I've been hospitalized they didn't even know what it was either.
Also i use to get nervous to stop in the middle of places but my bf would dang near put me on the floor bc he didnt want me to pass out lol my mom is super overbearing too but im glad i have support.
I hate that I have to eat so much salt, whenever I complain about it to my family they are always saying how so many people would love for their doctor to tell them to eat more salt.
Love your vibes 😍
Love your videos. I have POTS and EDS as well as Fibromyalgia. Its great to watch your videos
I really want that tick tockers profile to follow as well! You should link them if you're sharing them. Unless I have brain fog and just can't find it lol
I was diagnosed with tachycardia this year, my mom and grandma have it and when I work out my heart rate gets to 209 😭 it does it all the time ima about to go to a stress test on my heart
I wish my boyfriend/ baby daddy would be as caring as that girls in the video. Mine always pressures me to push my limits even when I don't feel good. I know I need to push some but when I really don't feel good he still pressures me. He is mad too because since March 2019 after our son was born was when I got POTS. I have been bedbound since and the Drs can't figure out what to do to help me sit up or stand w/o passing out. He is mad because he said it shouldn't take this long and he feels I am not really trying to get better. I feel so alone though, I live with my mom and grandma and younger sisters too, but no one gets it. My gmom and one of my sisters throws it in my face that I can't get up and help my son all the time, and no one else understands how much it hurts that they do things without me as his firsts. The people who have a good support system are sooo lucky. From the outside people tell me how lucky I am to have my family helping me but no one understands that it comes with a price and it's really breaking me apart. I didn't have POTS before my son so this is all new to all of us I get that but I feel like I have no one to talk to about it. I even went to standford hospital in California and they couldn't help me. I've tried different meds and changing my diet nothing is helping. I dont know what else to do. I don't want to live my life from a bed for the rest of my life and miss out on everything. I keep praying but it's so hard to see the light. I don't know how others can do this. I wouldn't even wish this on my enemies. It's too much. Sorry I vented...I think I just needed to get it off my chest. I enjoyed watching you video though. I would like to see some more pots tic tok reacting videos from you.
I'm so sorry you are going through such a difficult time. All you can do is continue communicating and seeking help. It's a confusing time for all of you and it sounds like your family is in denial. You have no reason to feel shame or guilt. I'm sure you are grieving those moments you aren't able to have with your child and I hope your family can become sensitive to your situation. I'm sure everything's about the baby so you're kinda on the back burner but seriously keep searching for help. That's not right you are experiencing such a prolonged illness after pregnancy.
Have you had an echocardiogram?
Destiny Mignogna yeah that’s a really hard situation, I’m sorry you have to deal with this.
I agree with Poppy, but if I might add something: why not try and show your family members some videos like Izzy’s? Or there are some really good info graphics and comics with information on social media! Perhaps even some of the comments from other people in the community? I understand it might not be feasible, but showing that it’s not made up, and it’s not just you might help your SO and family understand and give you the support you need to recover.
Stress certainly doesn’t help either so is there someone you can reach out to? A medical professional would be ideal so you can vent in a healthy environment and maybe identify some triggers which make it worse?
I hope things get better for you, and you can manage your symptoms ❤️ hugs to you
@@MsRebel Thank you I appreciate it. Also yes I had one but it came back all good.
@@hannahwilkinson1085 thank you that is a good idea I can try to show them some more videos maybe they will understand more.
My cardiologist and my POTS physical therapist said the main thing you want to avoid is staying in bed. It will make you intolerant to being upright and lead to deconditioning which makes everything worse. I find this to be true for myself and my kids (we all have dysautonomia and EDS) so even if I feel like I can't do it that day, I still get out of bed even if it's to sit on the couch. The Levine protocol for POTS was really starting to ease my symptoms until I had to have surgery which reversed all of my progress and now I'm starting over. It's difficult because I thought I was going to be much further along by now in managing my symptoms, but at least now I know what to do to get back to where I was.
Who ever has these feelings when driving?
My sister has NCS. She has a pit she adopted (fully grown when she got her) and she trained her for pressure (laying on her) and just being there for the anxiety as she comes to. She adopted a pit husky pup after and trained him to do the same things, as well as helping her stand up. She'll put her arms around his neck, he'll tense up his body and then she's able to pull herself off the ground. He's got other tasks he's learning, but those are the main ones right now.
I was diagnosed on Thursday and your channel has been a godsend 😭🤍 subscribed 😭🤍
I loved this! Funny and cool.
I got my POTS diagnose some days ago. Before the tilt table test the doctor just said, well, all i tell is absolutely normal and happens to all of us. After the test she said i have got a POTS curve out of the medical textbook. Her advice: Drink lots of fluid, take salt and do some sports.
Due to the fact that i have got Neurogenic Bladder and ME, and Interstitial Cystitis, and Sprue, and perhaps Diabetes Insipidus - that advice was not helpful at all.
By the way, you helped me a lot with one of your videos, i tested myself at home and went to a neurologist with my suspicion.
I’ve recently been diagnosed with hEDS just this past year. Sooo many pieces of my health puzzle are starting to come together. I haven’t been tested for POTS yet, but I do have a small history of fainting; during a haircut, at the hospital while standing visiting my friend who had just had her baby and then I ended up in the er and they wheeled me back to finish visiting her lol 🤦🏻♀️. There’s have been many many times while out shopping that I get dizzy spells and I crouch down on the floor for a few minutes.
My 26 year old has POTS/ Orthostatic hypertension they have him on meds to bring his BP up.. hes now a type1 diabetic he sufferes with migraines daily where he losses his sight then gets pain in the top right side of his head ( I get the same migraines and pain in the same spot) hes had 13 little tumors in his head they removed 1 behind his right eye and put mesh to replace the schull they took out ... hes on like 15 different meds . I hate when he blacks out because he's 6'9" tall and when he goes out he goes down very hard .. hes gone for the IV where he had to lay in the dark for hours .. all his drs won't let him drive or work .. and he's been fighting for disability but he's been denied drs dont understand how he can't get it..
Also you really don't have to buy anything to get packets of salt. You can go through the drive through. Ask for a water and salt. Say you are another person has a medical issue where you pass out. Most people are going to understand and do it immediately. McDonald's also doesn't charge for salt. If you go in, how would they know you arnt a customer who go to go and forgot to get it. Don't worry about needing to buy anything. Even going to a local deli. Gas stations may even have some! Goodluck guys!
Searching for POTS videos was a good idea for me- A few days ago my mom realized I might have POTS due to me starting to black out after getting up especially when I'm not hydrated, and lately it's been happening a lot and I just so happen to be a person who has no sense of time and doesn't check the time ift3n to see how long it's been since I last drank water. Sometimes it'll be just like some dizziness sometimes it's slightly dark vision but from time to time it's almost completely black. No fainting so far but this could definitely be POTS
Hey please respond asap, did you take the covid yaccine? Im doing research
@Polycubism yes, i did take it??
Can pots make you dizzy while just standing up/ sitting down minding your business or is it only when standing?
Sorry I'm new to this condition and I'm really eager to learn more!
Sorry to anyone who suffers you're so strong!
Yeah it definitely can. But almost always my worst dizziness is from that postural change!
@@IzzyKDNA ahh okay thank you so much! 🧡
@shade oh wow really? You’re a true fighter for pushing through that, I love gaining knowledge about POTS so thank you for sharing your experience :)
@@Mollyy8716 In case you’re still interested: I get presyncope when seated upright for extended periods. Standing is definitely a more obvious/frequent trigger, though.
The girl with a port is on youtube @Hailes life through a lense
I believe it may not be spelled correctly
I had to sit in the middle of the hall way at my job and everyone kept asking if i was ok it was funny
I had to stop yoga because id get dizzy. I’d pass out because of working out and get dizzy while doing most things . My doctor gave me medication but I never saw a neurologist because of this.
Take sea moss non gmo's it has 92 minerals your body needs make sure you do your own research before taking, add pink Himalayan salt to water and lemon juice. Shouldn't be able to taste it if you do that means to much. Hope this helps someone. It has also helped me manage my pots, ❤
I have had two service dogs for HBP, fainting, fibromyalgia, anxiety and migraines. They alerted, they could pull wheelchairs, pick up or hold things for me, hit the door opener when we went to malls etc, find an exit and lead me to it, lay down over me if I did faint, DPT... I had so much more independence! But, someone gave my first one food soaked in antifreeze and she died on the way through the vet door. My second one is still alive and only works from home now (I guess SD to trained ESA), because he ran into so many pets and mean people in stores that grabbed him, threatened to hit him, dogs jumping out of carts to bite him (even a monkey once), that he got too worried about working in stores anymore and that wasn't fair to him to make him suck it up and work anyway. So he and I are always at home together. I basically only go out if my kids need me to or if I am at the doctors again. I miss going to more places to see things and not worry about what could happen or if someone can take time from their day to come with me. I can't afford another dog to raise and train, and honestly, I don't think I could take any more emotional toll either. 💔
You can do Yoga without stretching especially an EDSer. Things that were stretches for other people were often strength poses for me. Avoid Yin Yoga and holding poses too long. Power Yoga and Flow were great for me when I still had the endurance and strength. Important to not follow blindly and know that there are poses that need to be skipped or modified.
I have seen side effects of POTS, and one of those things is seizures. Have you ever had any problems that? My mom had Tachycardia but hers was called PAT.
I add this comment under many POTS videos' as I found few things that worked for me and reversed(not cured yet) the progress of my POTS , so I hope they can do it for you too..
I am a guy with POTS, a rare bird I know and it took a while to get diagnosed, but once I was the most help I was given was a handful of medication. Before my diagnose I was, as most of you, mistaken for having anxiety. A busy doctor prescribed me Xanax and let me go. That thing works, but it comes at a HUGE price so I took it twice and did not anymore. Since the other pills did help some, but not enough, I went on and did a internet research on substances like Xanax, benzos in general, and why the positive effect on POTS. It turns out the answer is simple - neurotransmitters. We lack some, our immune system is causing problems with some attacking specific receptors like ACH2 one. Knowing this then I went and did a research on what non addictive, no side effect substance can do similar thing as the benzos as they were not an option and for my surprise found one. Found a German study on special Lavender extract, did try it and it did miracles for me! In US it is sold as CalmAid lavender. I take one in the morning and sometimes one before bed. Recently I am not taking it on regular basis anymore as I don't need it much. No side effects, no withdrawal symptoms, only lavender burps. Usually taking it on empty stomach, Gave me my life back and allowed me to start exercising. On exercising - very important for POTS, and almost impossible for us! But there is a work around for that too - start swimming! When in water you don't get the orthostatic effects from gravity. Actually standing in upright in water will increase the blood volume your hearth can work with and will make exercising easy. Exercising will on its turn increase you blood volume and hearth strength, that will make standing easy. It does not happen overnight, but in few weeks you will feel the benefits.
I hope all of you find this helpful.
My parents think I have this because I told them a few days ago that I get dizzy after standing up after sitting down and because if I stand up for a bit too long, I start getting abdominal pain and feel breathless (there are many other things, but these are just the most prominent), but I don’t ever feel faint fro, it, it’s never that severe so I doubt I have this, so I’ve been watching a lot of videos to make sure. The reason I’m kinda worried is because Ive been restricting my diet an awful lot (I know I shouldn’t do this I’m trying to stop), and apparently you can develop this from an eating disorder (more stuff to it than restricting diet of course, can’t be bothered to explain)
I don't know if you've had this checked out or not and I'm not trying to "diagnose" you, I just thought I'd mention this cause of personal experience. What it also could be is Autonomic Dysfunction, it's very similar to POTS cause it's kinda like a spectrum and POTS is at the very top end of the spectrum. I was diagnosed with this and was told that it could eventually develop fully into POTS if I don't try to help counteract the symptoms. Again in no way am I trying to diagnose you, I just thought I'd mention it cause your situation sounds very similar to mine pre-diagnosis, except I did feel faint and have vision blackouts.
Hehehehe loved the one where people around you are used to your issues 🙈🤣 i get looked at when i get hemiplegic migraines ppl be like are you having a stroke like nooo jist a migraine 😅😅
I suspect that I have hEDS. Idk about POTS, but I do know my heart races and I’ll need to sit until my heart calms down. Recently, I was at an event with my fiancé and I had to sit and then lie down. People thought I was drunk ☹️
Port makes it sound like she's a bad ass cyborg. 😎 (she is in my book lol)
Izzy please try Over the Counter 100mcg Vitamin B1, it made a huge difference for me.
I can not to upside down. Have never been able too. Other kids in the playground would happily hang upside down, while my head would feel like it was about to pop from the blood rushing in
Totally!!!!
@@IzzyKDNA The question is, is it the POTS or the hypermobility 🤔. I can only assume its due to the hypermobility because that came first for me. POTS set in during puberty
Hey, I’ve heard that having anemia can contribute to pots or even cause it. I’ve also heard that and cast can cause pots. Can you talk a little bit about anemia and MCAS potentially causing pots
You have any knowledge about research on steam cell therapy or jene therapy can help in dysautonomia or pots patient
I have POTS don’t know how many times I’ve passed out hurt myself ect. I have to have IV fluids a lot , my doctor has tried beta blockers , compression socks everything. I have been told to drink more fluids and eat more salt. But my doctor have given me vitamins , Gatorade etc. I was wrongly diagnosed multiple times before they did the tilted table test and diagnosed with pots.
How is this different from orthostatic hypotension from standing up too fast?
People: why do you love fast food fries they're so salty....
Me with POTS: 👀 chronic illness
I have a fairly rare (at least for my provider team) mess of Autonomic Nervous System Dysfunction. My brainstem is the problem. In short, if it's controlled by the brainstem then it's fucked up. My sleep patterns are screwed up. My blood pressure runs sky high and is so bad that it has caused minor kidney and liver damage and fairly moderate glaucoma. My heart rate on an average day if listened with a stethoscope sounds like a weird disco dance tune. My stomach empties either too slow or fast (typically slow). Same with my intestinal tract unless I am wearing my corset (no I don't understand how a corset regulates my gastro tract i.e. stomach to the rear end). And I have central pain syndrome and CRPS too.....
The dogs can help by laying on them and helping the blood pressure
One question now that I feel the POTS community is here... Is it still POTS if it happens while going on stairs and after a certain time standing or walking? Or doing exercise?
Yes. I have those issues with it 🌻
I have a friend that has all the symptoms and she always gets migraines and has to get her blood drawn and her bitch of a brother keeps making fun of her and tells her she’s faking and even the doctors say she’s not he always calls her “potty” and she’s even passed out before so I’m trying to learn as much as possible to help as much as I can
TEAM SALT!
I went to the hospital for the first time dealing with pots and they told me that I needed to drink 6 bottles of Gatorade and 3 tablespoons of salt a day and that my eds was connected somehow but I'm only 11 so I am not sure how
I came down with Pots after surgery last June. If I take too much salt, it makes me sick. I'm 67 years old. Does the betablockers Propanaol stop working after 1 year? That's what I'm taking now. I lost all my hair. Exercise brings my symptoms back. What stops the dizziness?
I havent diagnosed three differenf heart rate doesnt have go up. I no have pots heart rate doesnt go.up. Started along time symptoms match it.
I went to a cardiologist recently to get tested for POTS and after a quick sitting to standing test, they ruled it out, but the other day I went to my PT (I have hEDS) and she noticed that I was out of breath and sweating very hard after a super short walk, so she took my heart rate and did some tests on me and then told me she's nearly positive that I do have POTS because my heart rate went from 92 to 150 when I stood and went back down when I laid down again and I have a lot of the symptoms. I'm very confused. Does anyone have any Idea what is going on or has this happened to someone else?
You most likely do have it most cardiologist's don't believe in POTS that's why it's varry hard for people to get it diagnosed a lot of doctors just say it's anxiety when it's not
@@mikaelathompson mine doesn't either n I'm gonna be doing tests but my doctor and neurologist said I have POTS & diagnosed me with it 👀 I'm kinda nervous about my cardiologist cuz she's trying to prove it's not POTS 🤦 like, I trust two ppl way more than ONE person
@@mylife-23 ya alot of doctors like to try and prove their patients don't have something even though they do
I'm glad that you mentioned about Jacquie? I do have a question as well. I have tried some different things like Pedialyte and Liquid IV? Even now they say they have a flavor you can't taste the flavor and it seems like it is hard to drink but I can drink something like Crystal Light faster and in bigger quantities? Is there something that is like these that will do the same thing but really is much better tasting and much easier? When I am taking things like Liquid IV, I have noticed that I sort of start to get a feeling of getting sick to my stomach?
Thank You for your video.
Hi, this is a very late reply. But you might want to try Vitalyte! I too have a sensitive stomach to those kinds of drink mixes and Vitalyte has never upset me!