Controlling my body temp is the hardest part about POTS for me. I get cold so easily and struggle to stay warm yet once I get to a good temp, I also overheat easily. Never-ending struggle. I’m the girl you’ll find wearing hoodies in the summer because air-conditioning leaves me shivering and struggling to be at a comfortable temp 😂. It’s SOOOO hard to find a temperature that I can deal with. I’m either 🥶 or 🥵 lol
Izzy! I finally got my EDS diagnosis yesterday. I can now go to the specialists I need and say, “I have Ehlers-Danlos syndrome” without having to explain my entire life and myriad of odd issues. Great video as always.
Also yes :/ stairs make me literally ill. My heart beats so strong that i can see the pulse in my eyes. Do you have mitral valve prolapse by the way? I was just diagnosed with that and I’m wondering if it can go hand in hand with dysautonomia.
Oh my gosh! I'm waiting on a specialist appt for diagnosis and I'm so looking forward to being able to say "I have hEDS" (or HSD, and/or POTS/MCAS depending on what diagnoses I end up with), rather than "okay, so there's the patellofemoral pain, and the exercise fatigue, and the TMD, and the postural issues, and the random allergies, and the dermatitis, and the gastric ulcers ...". I imagine I'll still have to do a lot of explaining, but it's easier for me to e.g. answer specific questions rather than figure out what's relevant to include in my ~opening statement~
It IS an amazingly validating feeling to finally get the dx! And be able to say to all the specialists!!! It’s been a year for me, and I did go thru some weird “grieving” :dealing with it issues, finally having a label- it was just weird/emotional, but very freeing ultimately.
Deconditioning causes POTS...hah! I was in the gym 5 days a week/2 hours each session, and had been exercising like that for YEARS when my POTS developed. I did general cardio, weight lifting, step aerobics, Zumba, Yoga, water aerobics, Pilates, Body Combat...pretty much every type of exercise possible I did. And prior to the gym I'd played basketball, soccer, and did Tae Kwon Do for years. That's a huge part of my depression/anger over having POTS. I took pristine care of my body ALWAYS and it failed me so drastically. I still don't understand how that's possible but over the years I've just come to accept it and have been bitter ever since lol.
Ashley of Naath I find that when I try to do too much physical activity my symptoms worsen. I feel like I’m going well and then I get to a point where I just deflate (like someone has popped a balloon) and I can’t continue. I am gradually learning to go slow and do less - this helps my energy levels and my breathing in general. Frustrating when the med professionals come at this problem with such a one dimensional approach and don’t listen the real expert in the room (the patient) 😻
Same here!! I have just developed it now and i have been going for walks min of twice a week and then also home workouts and bikes rides. And now i have it 🤦🏻♀️
The fainting one is so true!! When I asked my primary care to refer me for a tilt table test she said "okay, I guess I can refer you to cardiology, but usually the people I refer for that faint". And when I was doing intake paperwork before my TTT the paperwork said "the testing today is to figure out why you've been fainting". It made me so mad, like they only care about your symptoms if they're "bad enough". Ugh
Yah. I want to go to a doctor cause I share symptoms with pots (not saying I have it just a possibility) but my mom keeps saying I should wait it out and see. I’m like mom I’ve felt like this for two years what do you expect to happen. Just cause I don’t pass out doesn’t mean I don’t feel like I am about to every time I stand
Only about 30-60% of people with pots have ever fainted, but most doctors think that if you don’t faint it’s not worth diagnosing or treatment, it’s very annoying.
I've only fainted once with POTS and lost consciousness! When I first went to a cardiologist, I hadn't though, and he seemed to be annoyed I was there and said it wasn't really a problem, as I wasn't fainting!
Carefree Critters I work as a medical scribe in a cardiology clinic and it makes me never want to see a cardiologist for POTS. I’ve had them admit to me that they don’t know much about it and it’s so complicated. And one doctor was fairly dismissive of a patient who thought they had POTS.
My first cardiologist looked at me and said no you don’t have POTS and then I saw an RN at a different hospital she diagnosed me and is way better then all the doctors that I have seen she specializes in POTS and is great. Doctors have just been a disappointment to me lately
I got an official POTs diagnosis yesterday!! my cardiologist is one of the few doctors who actually did testing *After* initial tests came back normal and i'm super grateful he did, and i'm also super grateful for this video, cause I have no clue what's up lol
I had a doctor INFORM me that I was deconditioned before even asking about my activity level simply because I am visibly over weight and I told him I have pots. I am active, I used to be more active before I got pots. Sometimes I really hate medical professionals.
I've had a doctor dismiss my exercise fatigue as being caused by weight (despite me saying it didn't seem to be related to my weight). He got a bit of a shock when I said that I'd just lost 25kgs over the year and feel no different 🤦♂️ (unfortunately he took that as a cue to start on me getting better sleep - I mentioned sleep hygiene and he responded "sleep hygiene, huh, that's a new one for me, I'll have to look into that").
Summer O i had a doctor in the emergency room send me to be observed in psych. After 3 hours I was sent home and came back in a cab and went to urgent care. They took blood and came back and the doc said in 35 years he has never had to admit anyone to the hospital. I had had a mild heart attack due to my MCAS. They were worried about me having another one. And they were shocked there was no actual damage to my heart. I’m always told how “ unique” my situation is. It’s been 54 yrs and I’m tired of being unique and being sent to psych and then I am admitted or need another surgery
I have to sit when I shower. My symptoms get worse bc I'm pregnant and ill be slomped in the shower. Takes me 40 minutes to wash my hair and all. It sucks so bad😫
Mine is getting worse as well. I am 35 and A couple days ago, I had an attack so bad I literally thought I was having a heart attack and dying. My 15 year old daughter called 911. It was awful.
My POTS get worse in the summer due to heat, but my JHS gets worse in the winter.. at least that I’ve noticed. This year 2019 has been the worst for me for both of those.
You're not dumb, it's just brain fog. I struggle with it too. It took me a full thirty seconds to remember what day it was for the fourth time in a couple minutes lol.
Relate to all of these. I have GI issues so drinking the amount of fluid that would make my POTS happy then makes my stomach upset. But yet the doctors just tell me I am not drinking enough.🙄
DITTO!!! It's actually interesting to me, and I wonder if anyone else can relate, because I can drink coke just fine (I know it's not the healthiest habit, but it makes me feel less queezy and stuff when I'm feeling awful so I drink coke)... But if I drink the same amount of water at the same speed or slower, it makes my tummy so upset! And I need the water, not the coke, though at least if I drink some sips of coke along with drinking the water, it's easier to handle the water But the water does help the pots significantly, if I manage to drink enough, which most days... I just don't, honestly.
peacebieberlove my daughter has the same problem with the Dr to say drink and even the school nurse and counselor at school said something to her about it. She has 2 IV s in one day she was still not feeling well, do it wasn’t dehydration.
Yeah, I have a lot of gut issues, and honestly we have discovered my absorption is awful in my entire digestive tract. To maintain normal Vit D levels, well just below mid normal, I have to take 10,000 IU a day, which is what is dosed for a reg deficient person as a weekly pill dose, but I have to take it daily.
I don't think you're weird or dumb! I'm an RN, which is actually of very little help to me at this point, and you're totally knowledgeable. I'm legit learning a lot from you. I'm not properly diagnosed at this point with anything, but I have my suspicions on several things, and hopefully I can get the medical community to pay attention and help me before something really awful happens. Ok, see? I ramble too. I love your rambling and your personality. Thank you for being real and genuine. Also: you have a GREAT smile!!! 🙃 I obviously have a lot of catching up to do, since I just found you! 😁
I live in South Florida and I would like to confirm that summer is instant death for pots . The cold thing however is also quite true . Will we ever be a comfortable temperature ? Nope.
another thing that frustrates me about the whole “inactivity causes pots” is that... well... sometimes people are sick or disabled or whatever their case may be, and they can’t help it. I HATE when people say that to me. It makes me feel so bad about myself, but the thing is I can’t get up and work out or move around even if I wanted to or felt like it. It sucks!!!
I have eds and I get POTS symptoms when I get cold, stay laying or seated for long periods of time due to circulation, after a blood test or any type of needle that goes into my skin, panic attacks, injury, getting sick, eating too much sugar, caffeine, standing too quickly, over exercising and emotional distress
I've been trying to get a diagnosis for my orthostatic tachycardia for months now but the cardiology nurse practitioner won't believe that I have POTS because he doesn't think that it can relapse and remit. He also thinks it is anxiety, but I don't see how that is possible. What could I possibly be anxious about every time I sit or stand? I'm so tired of not being listened to because I have an anxiety diagnosis.
And, this is even after my daughter was diagnosed with hEDS and presyncope (we have similar issues, but I am not hypermobile). Also, on the standing up slower. I never do, even though I know I'm supposed to! I never remember!
I hate it when just because you have problems with anxiety in the past everything is not because you are anxious or depressed and things are not looked at properly
I hate this so much. I have a couple of anxiety diagnoses and more specifically a conversion disorder so NO MATTER WHAT everything I talk to my doctor about is just passed of as anxiety.
Oh my gosh Izzy, you SO need to be a pathologist! With your passion for medical answers, & your desire to help some of the most strong, ill, yet vulnerable people! I mean you research so much, you seem to have the natural desire (as I do too) to FIND legitimate answers!! And that what we NEED. I totally understand if you would rather direct your talent and knowledge elsewhere (meaning in another career), but I'm 37 and I wish that when I was your age I had acted upon my passions & used my scientific & medical knowledge, & my intuition to save or improve lives. It's a regret I now have. But, at your age I did not want to spend a decade in college, LOL. And a decade flies by so fast that now I wish I had! I am 37 now...OH the things I have learned! I see so much of my younger self in you...💚
I just want to add that some people with POTS experience sitting intolerance too. I have pretty bad POTS and in addition to not being able to stand more than a couple min without fainting I also cannot sit for more than about 45min most days without fainting, and never more than 1hr of sitting. This is with MANY different medications/treatments involved to try to help. I guess I’m not a typical presentation but I wanted to bring attention to it.
I HATE when doctors try to diminish the significance of YOUR pain and suffering because they don't believe POTS exists or aren't familiar with it! Also for me the winter is WAY worse for my POTS i have ended up in the hospital during winter because my symptoms got so much worse! I can relate with you 100 percent i would rather choose the summer, even though i feel terrible either way lol
I live in AZ as well, I find my uncontrolled POTS a huge problem in the 6 months of summer, this year with COVID-19 and the long days in triple degree temps , iam in bed 75% of most days , I also admit my treated depression from all this chronic suffering is getting worse. My wish to all of us who suffer is just to be patient and trust research to find bio markers , fine tuned medicine and nails this disease for good. And us to experience lots of days of boundless energy.
Wow, the thing about overheating when wearing winter clothing, but cold if not wearing them - I had a teacher in primary school (long before I was diagnosed) that I tried to communicate this to who totally didn't understand and just told me to put my jumper back on. She was so dismissive when I was feeling so unwell. There's been many situations like this, but this one sticks out in my memory.
I'm 57 yrs old. Not diagnosed until 53 w/ hEDS and MCAS. However, 1st procedure at age 7 was w/ the bladder. Had knee issues at age 9. I SO understand your frustration w/ ignorant dr's who says damaging words to us. It's more important to their ego to respond w/ non sense than to say " I dont know". Ive had many yrs of the most stupid explanations for my symptoms. You nailed it for me how heat causes my central nervous system to go rogue! I understood the video and I'm glad you posted it.
I was just diagnosed with POTS last week. I've had milder symptoms since I was a teenager (I'm 27 now), but got the flu last winter and majorly spiraled. I also work 40 hours a week on my feet, so definitely not de-conditioned.
yeah, honestly if a doctor says that, they clearly aren't very knowledgeable about it. I'm NOT someone who is particularly into alternative medicine and if things aren't proven, I'm very skeptical. but when things ARE proven and have clear diagnostic criteria and actually drastically impact peoples' lives,.....clearly it's real
For me I'm undiagnosed but based on my pulse measurements and having nearly all symptoms I'm getting tested. I've had it where I'm completely aware of my surroundings but am unable to move or speak. I went to a neurologist about this and after many eeg tests they diagnosed me with psychogentic non epileptic seizures. They just thought me crashing was prettymuchin my head. (when I would stand or know I was about to stand i would get lightheaded, intense fatigue, dizzy and felt like someone was siphoning my energy and consciousness) the the therapy helped and I have gotten better (not that many of those spells anymore). I recently told my Dr and nurses at a really good drs office my symptoms and they're referring me to a cardiologist.
I love your videos! You're so relatable and real and that's what I love! Still in search for my diagnosis. Ran into another dead end 2 days ago and it's made me want to give up. Your videos help me to keep pushing forward and find out a diagnosis, good or bad. And knowing there's other people out there who struggled help encourage me to not give up. I'm not sure if I have POTS or not but my symptoms are increasing. I fell over at work yesterday (so embarrassing) because I couldn't gain my balance and was so dizzy and disoriented. Just fell flat on my butt in front of everyone. Every single time I stand now I go into pre-syncope. Not sure what happened in June but everything kicked into high gear and I've been coming to another, what I call, a health crash. :( I just want a freaking answer. Anyway. I know my comments are always long. I just feel it's a safe place here to share and be listened to.
It is most definitely a safe place here to share whatever you want! I know how it feels to run into ANOTHER dead end when searching for answers. Hang in there because there are times when you'll make great strides in improving your health, just as there are these slow times when it feels like there are no answers or treatments
I was a dancer and gymnast when I became symptomatic. But when I was a kid (my fainting started around the age of 8), POTS wasn’t really a known thing and my doctor certainly didn’t know what it was. I have never officially been diagnosed - my cardiologist believes I have/had POTS but I have not been symptomatic since my first pregnancy (for that I am thankful) and it’s hard to diagnose after “growing out of it”
omg I never remember to stand up slowly! Although I did finally right after this video and still got a head rush with pounding. I was diagnosed with POTS 7 years ago and hEDS a couple weeks ago (and a bunch of other stuff as well). I'm glad I found your channel!
I know this was 3 years ago, but, Izzy, I totally agree with you that this is one of your best videos! A family member has these symptoms, and you just explained that they are NOT made up, or overdramatic. POTS should be understood and taken seriously. Thank you!
The 1st cardiologist said POTS is uncommon & left it at that. The 2nd cardiologist I saw, a self proclaimed POTS specialist, took one look at the fact that I'm overweight, had never heard of Myalgic Encephalomyelitis aka CFS, nor my Mast Cell Activation Syndrome (my only 2 dx at the time, I now have ~20), he shoved deconditioning at me. So much went wrong in that appointment, & as soon as I get an official dx, I'm educating him. Because he also said I didn't have POTS because my blood pressure didn't drop on standing, & he ignored the fact my HR did increase by 15 bpm while I was leaning on something, & my bp increased greater than 20 ml on standing, which he should have said orthostatic hypertension, but blamed the illness he had never heard of. I need to be within the weight limit for the TTT, MECFS knocked me out of my active life & weight gain happened with med side effects. I'm almost there, lost 40lbs on my health centered diet. And still working towards it. I will educate him because I have an obligation to any other POTS patient he may have. My 3rd cardiologist is amazing & is super educated.
I got the deconditioning one (with an EDS diagnosis). My POTS came on suddenly actually and severely, literally over a period of a week I went from running my 5 miles a day and a figure skater to struggling to walk from class to class and unable to do stairs. I was 18, freshman year of college. EDIT: I am a MAJOR fainter, those first 3yrs I lived in TX and was fainting 5-8x per day easily and was on driving restrictions. Even with that severity my doctor refused any meds or treatments and said "salt and water". Now that I live in AZ and have a specific clinic for EDS and POTS (Center for Complex Neurology, EDS, and POTS; it is amazing). I am on IV treatments daily plus physical therapy and use a custom wheelchair to avoid walking. I am now fainting about 1-3x a week, sometimes none in a week! I am still very symptomatic but more managed and can have a life out of bed. I also have HORRID temperature regulation issues.
Wow I’m in Mesa Az. I don’t drive. I am currently seeing Dr. Nemechek in Buckeye Arizona. He has a natural approach I’ve been trying I was doing better but I seem to have recurrent relapses and they seem to be always after an emotional concussion
Izzy...girl I need to be your friend!! Lol you're SO funny and personable and literally say and react to things the same way I would🙈. I was diagnosed with Dsyautonomia but think I may have POTS. I'm 26 years old, recently married, and have two kitties that I'm obsessed with. My husband and I believe I had covid back in March and have since developed Dsyautonomia. My PCP thought this was all anxiety. Finally have a cardiologist on board and he's so great! Since recently being diagnosed, I've been trying to educate myself as much as possible as well as start to adjust my lifestyle as I was very active before all this. SUCH a big pill to swallow. Your videos though have helped me SO much. I just wanted to say THANK YOU for being such an advocate and sharing not only your story, but just who you are to the world. Never thought I'd enjoy watching videos about POTS so much!😂💙
YASS! THANK YOU for this video! I have POTS caused by my hEDS. I currently can’t stand because of it. I was told that my POTS couldn’t have been causing me to faint, instead it was “functional”. I was told by one male doctor that my POTS was caused by my “long beautiful legs”. I didn’t go back to him. It’s a debilitating illness. And all the time people are like “Well don’t worry, you’ll grow out of it “. I have had doctors(even POTS specialist) insist that my POTS must be caused by a virus or deconditioning. I always have to explain, while yes viruses can cause POTS, mine was caused by my hEDS. Also I was never told what type of POTS I had at diagnosis? How did you find out? Sorry for the long comment!
Some dr. diagnose the different types and some don’t. It depends on each doctor if they even recognize the different types, which makes it confusing and weird.
I find, the summer or heat - outside, or hot showers are so bad for me. But yes also overheating in winter can be bad too. And I also can not deal with the cold. Basically, I could relate to all your sane symptoms! Great video as always!
I love this video so much! I'm 19 and I was diagnosed with POTS 9 years ago. This makes me feel so much better hearing I'm not the only one (obviously). Thank you so so much for making these videos!
My seizures is what caused POTS for me and my god it's no joke. I'm struggling with it so badly still but this information that you post is incredibly helpful and it makes me feel like I'm not alone. Thank you for making this content.
I do the same thing all the time with my dysautonomia (standing up too fast, almost always). I keep telling my husband that you would think after the million and tenth time, I would remember to get up slowly, but I never do. Mine is orthostatic hypotension, though, at least that's what the doc says without tilt table testing me. I have only lost consciousness twice. The vision always goes first for me, too. I have gastroparesis, too, and joint hypermobility and dislocations, but not EDS. I can still relate to so many of your videos. I have Raynaud's, too, so the cold is not my friend either, especially the mildly cold because I always bundle up sufficiently and have my gloves handy when it's really cold, but I usually end up with blue hands on the mildly cold or rainy fall days when I don't think to dress properly. My dysautonomia seems to be worse in heat, and the shower is always difficult for me. Thanks for all the informative videos. They've been a great help since my diagnosis of gastroparesis several years ago.
I love how honest you are! Lol! Never be embarrassed when you speak the truth. You have a beautiful spirit. Thank you for sharing your story. I just started fainting and am starting to go through the process of getting tested. Right now. Thank you for your advice. I will heed your words. Many blessings amd prayer for better health. 😇
Izzy, thanks! I have Lupus and I was diagnosed with Orthostatic Hypotension, but I started experiencing heart rate fluctuations and severe fatigue when going upstairs. My new rheumatologist thinks it might be POTS and is sending me to a new cardiologist. I have found your videos so helpful and everything you say sounds like me! One question--do you get really bad leg pain as you go up the stairs? By the way, I'm 44 and started experiencing these symptoms when I was 19. They've gotten worse with time. I'm also a professional Flamenco Dancer, so you're totally right about those two myths! Thanks again! ❤️
I didn’t know what POTS was until I started watching your channel. Eye opening! I fainted once when I was in High school from getting up too fast. I’ve always had trouble regulating body temp. When I’m sick and have a fever, my body will shake and teeth will shiver uncontrollably! Also when I work out I’m always sweating like crazy and then after I cool down I get FREEZING cold. Ugh it’s so annoying!
thank you so much for this video. i have to keep pausing watching it because i'm so emotional because FINALLY it feels like someone is understanding what i'm going through. i finally got a diagnosis of POTS last month after struggling with it two years and i have had many of these misconceptions said at me by family, friends, and even doctors. it's such an invalidating feeling when nobody understands what is wrong with you and just says, eat salt, drink water etc. it feels so so good to hear your experience and know it's not just me. i have just found your channel but i am really excited to go through and watch some more of your videos. thank you thank you so much !!!!!!!
about the one that "inactivity caused your pots" is so frustrating because i've had my parents tell me that KNOWING i worked out every day for years, then cut it down to 5 days a week for other (mental this time) health reasons. and now that my symptoms are getting worse i just can't work out some days. so my parents are like "you're not working out as much that's why you're symptomatic" ...WHY do you think i STOPPED working out as much???
I've just found your channel and it's so helpful. I've been diagnosed with POTs and EDS for a few years now. Just hearing someone feel the same way I do is really helpful. Like struggling a flight of stairs but starting medication made that possible, yet I become super breathless and my heart goes nuts when I climb more stairs. I walk on average 4000-6000 steps a day so it's not due to inactivity and I'm not overweight. Even on meds, I have some bad days and missing a tablet can be devastating to my energy levels. I hate summer too - I get more symptoms and get really cold easily and it's hard to heat up, but I prefer winter over summer. Thanks for sharing this with people. :)
Thank you for this video. I totally get the feeling of sounding dumb. And I want to say, that seeing your video, and seeing you have word challenges was extremely validating for me. I have a doctorate degree and have spent a lot of time around really smart people, so my challenges with words and memory make me feel pretty bad about myself. I know that I am smart, but I can sound so dumb, and I'm rather self conscious about it. So, thank you for being yourself, for being real and for letting us see the struggles.
Great video! I relate to these problems too from some doctors who aren't surprised that im not better after adding salt and drinking water, that it's lifelong. I once had a doctor who smirked at me and said that you're "always more likely to faint if you're around people" and try to blame mental health for dysautonomia, made me soooooo mad. I also have HSD.
I agree with you. I didn't even come down with P.O.T.S. until I was 55 years old. I was the oldest patient my cardiologist had (not now). I was very active.
I was diagnosed with POTS mid last year, caused my my long Covid/covid infection from a year ago. When I was doing the 10 minute stand test in the cardiologist clinic I felt like I was going to faint and the nurses helped me to lie down. I can’t remember if I lost my vision but I did become very sweaty. Then 2 days ago at home I felt like I was going to faint and I slowly started to get on the floor, but before I could I lost my vision and suddenly collapsed onto the floor. I didn’t become unconscious and I could still hear but I was suddenly very weak and felt dizzy for a while afterwards. (I’m currently wearing a 48 hour holter organised by my cardiologist - I’m a little disappointed that the collapse happened one day before the holter was put on so they can’t see what my heart was doing at the time.) It was the first time I’ve experienced anything like that and I was searching for POTS videos to see if others have also experienced this. It sounds like presyncope, so thank you for helping me put a name to it.
Question: Do you ever notice that stressful situations make your POTS worse? For example, when my son (age 8) had to have eye surgery, when I went back to recovery with him, and the nurses were trying to explain the after surgery process, I fainted on them. I scared them. LOL. They called my husband to come get me. It was so embarrassing.
hmmm I actually don't think so! I could understand why, though, because anxiety increases your heart rate and put that together with POTS and it's NOT fun!
Just discovered your channel and it is pure gold 🪙🪙🪙🪙. This is helping me prepare for my cardiologist appointment so that I feel educated enough to advocate for myself. Thank you for being a badass.
Hi Izzy, This was really helpful. Just got diagnosed a few days ago (2 years with "undiagnosed fainting spells") and still getting my head around this. Thank you for this video.
You are so strong girl. I myself am a chronic pain patient. I can only see the last two weeks in your page. I was wondering if there's anywhere else I can see since you started documenting? You are such a strong person. God bless you Izzy
Watch to the end!!! I have temperature regulation problems too even overnight. I'll wake up 95.5°F In the morning and be 99.7°F by the afternoon. It's beyond horrible and I'm still not fully warmed up at ten am and I woke up at five. I live in Cali and it's only September! I love the end. Xxoo
Can you do another video about what you eat in a day with GP? I also have GP, Endometriosis, bladder muscles that do not work and chronic pain! I love watching your videos because it doesn't make me seem alone.
@@IzzyKDNA No worries then!! I still love watching your videos that revolve around GP and other chronic illness! And, thank you so much for responding, it made my day! I just had some 7th surgery a couple days back, so a little joy is nice lol!
I’m unofficially diagnosed in the process of being tested to be officially diagnosed. Mine is caused by too much trauma. Basically. Too much adrenaline & my autonomic nervous system shorted out. At one point. I was very active. *Running* 2+ miles a day + cardio. Now I can’t get to the other side of the house without being symptomatic. 🙄
Thankyou for the video. Royal Brisbane said I don't have POTS or Dysautonomia even thought I had 2 dystonia autonomic seizures and because I didn't faint during their tests? I do!! Because and how can I not with blood pressure of 93/53 and can't sign for 5 minutes without falling asleep? Can't see how I wouldn't having Hypermobile Ehlers Danlos Syndrome and when my POTS plays up it's like falling off a 10 storey building at free fall, hot cold, pale white face and about to throw up all while I am sitting. Love the bit about stairs, 20 yrs ago in my 20's I always struggled walking up a set without constantly stopping. But wait! I don't have HEDS only Benign Hypermobility Syndrome but my son has a 9/9 score and been dx Hypermobile Ehlers Danlos Syndrome. I had only a 8/9 score? Whattha!
I love this video!!!!! I've had pots for years and I even learned some stuff from your video!!!! I love how you talked about how some people assume inactivity cause POTS because I was a figure skater before I got POTS and was skating almost every weekday and I had to stop because of POTS! Such a great video! Thanks for making it!!!♡♡♡
My Cardiologist thinks I Have Vasovagal syncope but I have more symptoms of pots than I do of vasovagal syncope. I currently have a loop recorder in my chest atm and find out on the 16th what is actually "wrong" with me. fingers crossed I finally get some answers. your videos are great and I have watched heaps of them, thank you for being so informative :D
So I sort of have an update. Going to see a different cardiologist as mine didn't care about my super low bp. He said its nothing. Also doesn't want to see me for another year. Went and seen my doctor today we tested my blood pressure sitting then standing and my blood pressure dropped alot but my oxygen went up heaps more (doc is concerned) fingers crossed this cardiologist doesn't just tell me its nothing. I'm sick of feeling like I am about to faint every time I stand up. :( fingers crossed.
I get so frustrated when I stand up too fast I fall and lose my vision and hearing but I'm so conscious so I can't really tell anyone that I passed out.
Thanks for sharing your experiences! Helps a lot as I can relate to them and especially since many doctors think "you know it's a controversial diagnosis".....
I have vasovagal syncope & when I have an episode, I never feel it coming, I mean all of a sudden I’m getting off the ground.It doesn’t happen very often but when it does, I usually get hurt. My cardiologist told me I cannot drive anymore because one time I was driving & drove into my neighbors mailbox. It was pretty scary.
I developed POTS as a teen and passed out fairly frequently. Now i mostly just experience pre syncope, though i do still occasionally pass out and, in summer especially, will have episodes of just being symptomatic all day long and just needing to lay down.
I feel like my Dr. doesn't believe me. My symptoms started last year after Covid. Gastroparisis and POTS. I feel like I'm on a stuck merry go round. I'm being tested finally because I am making them test me. Because if you guys my symptoms are more manageable because I'm taking salt tabs and b1 and wearing compression stockings. Now I'm worried my symptoms won't be bad enough for the test. It's so sad I'm here suffering. I need a new Dr.
I hate the inactivity excuse. My POTS came rather suddenly, but I was on my school’s track team, and my local dive team, and doing horseback riding. I definitely wasn’t inactive...
Hi Izzy, my daughter was diagnosed with POTS in the spring of this year. I found your channel from the review video you did for the Embr Wave Bracelet on Dysautonomia International’s FB page. My family has realized that the winter is worse on her but we have linked together that when the barometric pressure drops (we live in Colorado) she passes out more and feels terrible. I was just wondering if you might have heard anything about this? She’s 16, so we don’t get great explanations from her about how she feels so I also wonder if she’s just to cold. I bought her the Embr Wave bracelet and she’s had it a couple of days and LOVES it!! I hope this helps her even if it’s just a little bit! Thank you for sharing your life with a chronic illness especially POTS since it IS so very controversial with doctors!!
I recently got pots and I’m super curious how you build up the the confidence or idk the word but I’m scared to go out and hang out with people because I’m scared that everything will switch I have awful side effects that make me see tunnel vision and zone out and it’s giving me such bad anxiety that I’m scared to sleep at night because I’ve been sick for 2 months so if you have any suggestions or anything please comment just subscribed ❤️ thanks for posting this it helped a lot
Even after all these years having it, I STILL forget to stand slowly! I can remember as a kid/teen my mom telling me to slowly stand up. Years before I was dx w eds, pots etc. yet, I was put on propananol back in my early 20s, but was never told why. I had to stop when I got preg the first time 18 years ago and just never went back on. Yet, my husband takes it for HIGH blood pressure. Eye floaters- so freaky, I get them almost daily.
Thank you Izzy as always! Are you aware of any EDS or POTS support groups? I’ve been trying to find something online or in person but haven’t had any luck. It’s been wonderful to find your channel and follow you for the last few months. You are helping me by learning how to better articulate our conditions and advocate for myself. It’s nice to know I’m not alone in dealing with these problems even though some days can feel like I’m totally alone. Thank you for your courage.
I just went to a specialist about many things including symptoms of pots and they said just about everything EXCEPT “you have pots”. Like i explained how all my symptoms line up, they explained what my body is doing (quite literally described pots) and then said drink more water and sent me off. Oh how i love going to the doctor 🙄
I used to faint, still experience presyncope and know to lean against stuff when dizzy, don't ignore it, make sure to eat lots of salt and change something when it's to crowded or hot or humid. I haven't fainted in a few years. Doesn't mean I grew out of it. I learned to deal with it since it's supposed to be 'normal'.
I was diagnosed with vasovagal syncope when I was like 7, but I'm positive it's POTS, I brought it up to my doctor and she said that they can't diagnose me with pots unless they rule everything out and tells me to exerciseand drink water (things I do extreme everyday because I'm in color guard which is very active) and my condition is getting worse, like my heart rate gets to 217 bpm and no one, not even my parents will take me seriously and expect me to function as a non sick person so I suffer as a 17 y/o chronically ill kid without any kind of treatment 👍🏼
So grateful you touch on this subject. I have NCS (Neurocardiogenic syncope) had it from heat exhaustion back in 2017 and its been HELL! Oh my gosh. Luckily it has lessened to some degree but having drs think you are crazy was the worst thing ever. My blood pressure would be at 150, ten minutes later, 130, 39 minutes later at 119, and a stress test was all it took to confirm. Neurologist pinned it immediately to NCS so I was grateful for her. Just been on thermotabs since then :/ and praying it goes away soon. Ugh, Izzy do you ever feel like a dysautonomia flare up after a bowel movement ? (TMI im sorry but I do :/)
About your last question, I personally don't, but I've had a bunch of people ask me that SAME EXACT question, so I assume that there's definitely something to that!
I was a really fit healthy person. i was running stairs (30 set of 15 steps) everyday. I went to a workout class and i passed out. When i came too i had all the symptoms of pots. it took 2 years from that point to be diagnosed and so many appointments and doctors. i have had so many doctors tell me it due to me not exercising and that i did it to myself. i am starting a cardiac rehab program feb 21st. i am really hoping it works but i dont think it will
ok i love the parts of your videos where you ramble a bit, i relate so much and i feel like i sound dumb at precisely the moments where it's important that i Not sound dumb lmao it's very relatable is what i'm saying and lowkey i feel like thats the adhd talking bc when i talk to other people with adhd we loosen up whatever filter we might have that keeps us restrained from getting sidetracked and talking around things and it's actually one of my favorite things in life :) i hope this doesnt sound mean lmao i'm just trying to say i relate to the way you end a lot of videos and i really appreciate that you keep that in :)
I started with it in my teens. Was told by the gp then to eat a sweet if it happened again. Have had periods of it since then and im in my 40's. Went to the gp before xmas and they thought id had a stroke. I didnt. But got evidence that my bp plummets in an episode. Still waiting for a different referral
You are so adorable and funny! And clearly, you're not dumb. You're just saying it as it is. And thank you for all the interesting information! :-) Big hugs from an EDS-zebra in freeeezing cold Norway!
I was weight training and in the best health and condition of my life when my POTS started causing issues along with my Prinzmetal angina spasms. I hate when doctors try to flip it. Yes, it goes hand in hand now, but it didn't start that way, I was conditioned well.
Do you still attend WashU? My 17yo daughter has POTS and gastroparesis, and we live in a StL suburb. I think speaking with someone like you over a cup of tea would be so helpful.
Who stands up too fast while talking about their dysautonomia *everyone raises hands*
Controlling my body temp is the hardest part about POTS for me. I get cold so easily and struggle to stay warm yet once I get to a good temp, I also overheat easily. Never-ending struggle. I’m the girl you’ll find wearing hoodies in the summer because air-conditioning leaves me shivering and struggling to be at a comfortable temp 😂. It’s SOOOO hard to find a temperature that I can deal with. I’m either 🥶 or 🥵 lol
🎶 You’re hot then you’re cold. You’re yes & you’re no. You’re in & you’re out. You’re up & you’re down. 🎶 IDK why this popped into my head. 🤷🏼♀️🤣
@@silverlining1973 lol this. yes
I’m happy I’m not the only one
Is this a symptom of POTS? I am struggling with this and I faint when I stand up for too long or it's too hot but it's like not long at all
This is so true I always were vests and it going on, off, on, off😂
It angers me when doctors say POTS is caused by inactivity, too ... If anything my inactivity is caused BY my POTS ahhhh!!
I’m at the beginning of this convo with my cardiologist. He blew me off for 2 years. Finally getting a table test and stress test. Finally!!!!
@@HighReeve1982 I'm so glad to hear that!! Good luck!!!!
@@Hansen23900 thank you for this suggestion! I'll check out his channel now :D
Yasssss
Izzy! I finally got my EDS diagnosis yesterday. I can now go to the specialists I need and say, “I have Ehlers-Danlos syndrome” without having to explain my entire life and myriad of odd issues. Great video as always.
Also yes :/ stairs make me literally ill. My heart beats so strong that i can see the pulse in my eyes. Do you have mitral valve prolapse by the way? I was just diagnosed with that and I’m wondering if it can go hand in hand with dysautonomia.
It's nice to finally sum everything up into one sentence!!! and im so glad you have answers!
@@pinkieskeelo it goes hand in hand with EDS! i haven't heard about a connection between dysautomo and MVP. and i don't have it!
Oh my gosh! I'm waiting on a specialist appt for diagnosis and I'm so looking forward to being able to say "I have hEDS" (or HSD, and/or POTS/MCAS depending on what diagnoses I end up with), rather than "okay, so there's the patellofemoral pain, and the exercise fatigue, and the TMD, and the postural issues, and the random allergies, and the dermatitis, and the gastric ulcers ...".
I imagine I'll still have to do a lot of explaining, but it's easier for me to e.g. answer specific questions rather than figure out what's relevant to include in my ~opening statement~
It IS an amazingly validating feeling to finally get the dx! And be able to say to all the specialists!!! It’s been a year for me, and I did go thru some weird “grieving” :dealing with it issues, finally having a label- it was just weird/emotional, but very freeing ultimately.
Pots stands for postural orthostatic tachycardia syndromes- NOT weed. Haha I love it.
People always assume its weed tho 😭😂🤣 I get it all the time bahaha
Lord I got that one before and lmao w h a t
Told someone I was a Potsie a couple times... they DEFINITELY took it the wrong way
Loved that
Told a paramedic this and he was like "you did DRUGS?!" Jesus H...
Deconditioning causes POTS...hah! I was in the gym 5 days a week/2 hours each session, and had been exercising like that for YEARS when my POTS developed. I did general cardio, weight lifting, step aerobics, Zumba, Yoga, water aerobics, Pilates, Body Combat...pretty much every type of exercise possible I did. And prior to the gym I'd played basketball, soccer, and did Tae Kwon Do for years. That's a huge part of my depression/anger over having POTS. I took pristine care of my body ALWAYS and it failed me so drastically. I still don't understand how that's possible but over the years I've just come to accept it and have been bitter ever since lol.
Ashley of Naath I find that when I try to do too much physical activity my symptoms worsen. I feel like I’m going well and then I get to a point where I just deflate (like someone has popped a balloon) and I can’t continue. I am gradually learning to go slow and do less - this helps my energy levels and my breathing in general. Frustrating when the med professionals come at this problem with such a one dimensional approach and don’t listen the real expert in the room (the patient) 😻
So frustrating! 😡😡😡😡😡
Same here!! I have just developed it now and i have been going for walks min of twice a week and then also home workouts and bikes rides. And now i have it 🤦🏻♀️
RETWEET
YES!
The fainting one is so true!! When I asked my primary care to refer me for a tilt table test she said "okay, I guess I can refer you to cardiology, but usually the people I refer for that faint". And when I was doing intake paperwork before my TTT the paperwork said "the testing today is to figure out why you've been fainting". It made me so mad, like they only care about your symptoms if they're "bad enough". Ugh
SO TRUE!!!! sometimes they only care if they consider it bad enough.....
Yah. I want to go to a doctor cause I share symptoms with pots (not saying I have it just a possibility) but my mom keeps saying I should wait it out and see. I’m like mom I’ve felt like this for two years what do you expect to happen. Just cause I don’t pass out doesn’t mean I don’t feel like I am about to every time I stand
In my chronic pain crying spells, "How bad do I have to get before someone helps me" is often mumbled...
Only about 30-60% of people with pots have ever fainted, but most doctors think that if you don’t faint it’s not worth diagnosing or treatment, it’s very annoying.
I've only fainted once with POTS and lost consciousness! When I first went to a cardiologist, I hadn't though, and he seemed to be annoyed I was there and said it wasn't really a problem, as I wasn't fainting!
Carefree Critters I work as a medical scribe in a cardiology clinic and it makes me never want to see a cardiologist for POTS. I’ve had them admit to me that they don’t know much about it and it’s so complicated. And one doctor was fairly dismissive of a patient who thought they had POTS.
My first cardiologist looked at me and said no you don’t have POTS and then I saw an RN at a different hospital she diagnosed me and is way better then all the doctors that I have seen she specializes in POTS and is great. Doctors have just been a disappointment to me lately
I got an official POTs diagnosis yesterday!! my cardiologist is one of the few doctors who actually did testing *After* initial tests came back normal and i'm super grateful he did, and i'm also super grateful for this video, cause I have no clue what's up lol
I had a doctor INFORM me that I was deconditioned before even asking about my activity level simply because I am visibly over weight and I told him I have pots. I am active, I used to be more active before I got pots. Sometimes I really hate medical professionals.
I've had a doctor dismiss my exercise fatigue as being caused by weight (despite me saying it didn't seem to be related to my weight). He got a bit of a shock when I said that I'd just lost 25kgs over the year and feel no different 🤦♂️ (unfortunately he took that as a cue to start on me getting better sleep - I mentioned sleep hygiene and he responded "sleep hygiene, huh, that's a new one for me, I'll have to look into that").
same to both of yall's experiences, this stuff has to stop, it's dangerous
Summer O i had a doctor in the emergency room send me to be observed in psych. After 3 hours I was sent home and came back in a cab and went to urgent care. They took blood and came back and the doc said in 35 years he has never had to admit anyone to the hospital. I had had a mild heart attack due to my MCAS. They were worried about me having another one. And they were shocked there was no actual damage to my heart. I’m always told how “ unique” my situation is. It’s been 54 yrs and I’m tired of being unique and being sent to psych and then I am admitted or need another surgery
showers are the WORST for me, ill get exhausted just standing anywhere
I have a chair that I use in the shower that helps a bit especially if I need to be in there for longer if I’m washing my hair or something
My heart rate went up to 178 in the shower today 🤦🏻♀️
I have to sit when I shower. My symptoms get worse bc I'm pregnant and ill be slomped in the shower. Takes me 40 minutes to wash my hair and all. It sucks so bad😫
could you make a video about the different types of dysautonomia?
interesting video idea! I'll look into it! It might be a VERY complicated video, though hahahahah
I feel so validated by your experiences and the videos you post. 😔🥺I have P.O.T.S. and it’s gotten progressively worse as I’ve gotten older.
WOW I can't express how much that means to me
Onebeautifulheart me too 🤚
Take care dear..wishing you well🤗
Mine is getting worse as well. I am 35 and A couple days ago, I had an attack so bad I literally thought I was having a heart attack and dying. My 15 year old daughter called 911. It was awful.
My POTS get worse in the summer due to heat, but my JHS gets worse in the winter.. at least that I’ve noticed. This year 2019 has been the worst for me for both of those.
You're not dumb, it's just brain fog. I struggle with it too. It took me a full thirty seconds to remember what day it was for the fourth time in a couple minutes lol.
Been there 😂
Relate to all of these. I have GI issues so drinking the amount of fluid that would make my POTS happy then makes my stomach upset. But yet the doctors just tell me I am not drinking enough.🙄
DITTO!!!
It's actually interesting to me, and I wonder if anyone else can relate, because I can drink coke just fine (I know it's not the healthiest habit, but it makes me feel less queezy and stuff when I'm feeling awful so I drink coke)... But if I drink the same amount of water at the same speed or slower, it makes my tummy so upset!
And I need the water, not the coke, though at least if I drink some sips of coke along with drinking the water, it's easier to handle the water
But the water does help the pots significantly, if I manage to drink enough, which most days... I just don't, honestly.
peacebieberlove my daughter has the same problem with the Dr to say drink and even the school nurse and counselor at school said something to her about it. She has 2 IV s in one day she was still not feeling well, do it wasn’t dehydration.
Yes, drinking as much water as recommend, makes me vomit, aaand when I vomit, I pass out. Also the soda conundrum for me too.
Yeah, I have a lot of gut issues, and honestly we have discovered my absorption is awful in my entire digestive tract. To maintain normal Vit D levels, well just below mid normal, I have to take 10,000 IU a day, which is what is dosed for a reg deficient person as a weekly pill dose, but I have to take it daily.
Which has made it so I have to have a port, there's not really another option for me.
Omg you're not dumb haha, it's just brain fog. I'm the same way. Looooove your videos. And I forget to stand up slowly too!! LOL
I don't think you're weird or dumb! I'm an RN, which is actually of very little help to me at this point, and you're totally knowledgeable. I'm legit learning a lot from you. I'm not properly diagnosed at this point with anything, but I have my suspicions on several things, and hopefully I can get the medical community to pay attention and help me before something really awful happens.
Ok, see? I ramble too. I love your rambling and your personality. Thank you for being real and genuine. Also: you have a GREAT smile!!! 🙃
I obviously have a lot of catching up to do, since I just found you! 😁
Thank you so much!!
I live in South Florida and I would like to confirm that summer is instant death for pots . The cold thing however is also quite true . Will we ever be a comfortable temperature ? Nope.
hahahah there's no comfortable temp!
natty k im in miami and its the woooorst :(
Moved to Colorado from Boca for this very reason! Only to find being cold hurts just as much lol jokes on me
another thing that frustrates me about the whole “inactivity causes pots” is that... well... sometimes people are sick or disabled or whatever their case may be, and they can’t help it. I HATE when people say that to me. It makes me feel so bad about myself, but the thing is I can’t get up and work out or move around even if I wanted to or felt like it. It sucks!!!
I have eds and I get POTS symptoms when I get cold, stay laying or seated for long periods of time due to circulation, after a blood test or any type of needle that goes into my skin, panic attacks, injury, getting sick, eating too much sugar, caffeine, standing too quickly, over exercising and emotional distress
I've been trying to get a diagnosis for my orthostatic tachycardia for months now but the cardiology nurse practitioner won't believe that I have POTS because he doesn't think that it can relapse and remit. He also thinks it is anxiety, but I don't see how that is possible. What could I possibly be anxious about every time I sit or stand?
I'm so tired of not being listened to because I have an anxiety diagnosis.
And, this is even after my daughter was diagnosed with hEDS and presyncope (we have similar issues, but I am not hypermobile).
Also, on the standing up slower. I never do, even though I know I'm supposed to! I never remember!
My doctor also told me it's probably just anxiety. It's so annoying. Last time I checked, standing up doesn't cause me to be anxious.
I hate it when just because you have problems with anxiety in the past everything is not because you are anxious or depressed and things are not looked at properly
I hate this so much. I have a couple of anxiety diagnoses and more specifically a conversion disorder so NO MATTER WHAT everything I talk to my doctor about is just passed of as anxiety.
Seriously. Over the years I’ve been told a migraine, POTS, a shoulder injury, and gallstones were “anxiety.” It really messes with you tbh
thank you for another helpful video I have POTS caused by EDS so all your videos apply to me so well
Oh my gosh Izzy, you SO need to be a pathologist! With your passion for medical answers, & your desire to help some of the most strong, ill, yet vulnerable people! I mean you research so much, you seem to have the natural desire (as I do too) to FIND legitimate answers!! And that what we NEED. I totally understand if you would rather direct your talent and knowledge elsewhere (meaning in another career), but I'm 37 and I wish that when I was your age I had acted upon my passions & used my scientific & medical knowledge, & my intuition to save or improve lives. It's a regret I now have. But, at your age I did not want to spend a decade in college, LOL. And a decade flies by so fast that now I wish I had! I am 37 now...OH the things I have learned! I see so much of my younger self in you...💚
Peyton W I love your profile pic 😻
I just want to add that some people with POTS experience sitting intolerance too. I have pretty bad POTS and in addition to not being able to stand more than a couple min without fainting I also cannot sit for more than about 45min most days without fainting, and never more than 1hr of sitting. This is with MANY different medications/treatments involved to try to help. I guess I’m not a typical presentation but I wanted to bring attention to it.
I HATE when doctors try to diminish the significance of YOUR pain and suffering because they don't believe POTS exists or aren't familiar with it! Also for me the winter is WAY worse for my POTS i have ended up in the hospital during winter because my symptoms got so much worse! I can relate with you 100 percent i would rather choose the summer, even though i feel terrible either way lol
Allison Kitts I live in Az and my pots is way better in the winter... the summers put me right in bed for 6 months.
Debb Vaughn wow that’s hard 😞 I can’t stand extremes in temperature and tend to do better in Spring and Fall (called Autumn here in Australia 🇦🇺 🍂)
Wtf SUMMER IS HELL,I would rather live in Siberia than spend a week in hot weather
@@ronesss33 Australian summers are horrifying
I live in AZ as well, I find my uncontrolled POTS a huge problem in the 6 months of summer, this year with COVID-19 and the long days in triple degree temps , iam in bed 75% of most days , I also admit my treated depression from all this chronic suffering is getting worse. My wish to all of us who suffer is just to be patient and trust research to find bio markers , fine tuned medicine and nails this disease for good. And us to experience lots of days of boundless energy.
Wow, the thing about overheating when wearing winter clothing, but cold if not wearing them - I had a teacher in primary school (long before I was diagnosed) that I tried to communicate this to who totally didn't understand and just told me to put my jumper back on. She was so dismissive when I was feeling so unwell. There's been many situations like this, but this one sticks out in my memory.
I'm 57 yrs old. Not diagnosed until 53 w/ hEDS and MCAS. However, 1st procedure at age 7 was w/ the bladder. Had knee issues at age 9. I SO understand your frustration w/ ignorant dr's who says damaging words to us. It's more important to their ego to respond w/ non sense than to say " I dont know". Ive had many yrs of the most stupid explanations for my symptoms. You nailed it for me how heat causes my central nervous system to go rogue! I understood the video and I'm glad you posted it.
I was just diagnosed with POTS last week. I've had milder symptoms since I was a teenager (I'm 27 now), but got the flu last winter and majorly spiraled. I also work 40 hours a week on my feet, so definitely not de-conditioned.
Omg yes my PCP told me that POTS was controversial and kind of a “fru fru” diagnosis and I was like gurl come on 😂
yeah, honestly if a doctor says that, they clearly aren't very knowledgeable about it. I'm NOT someone who is particularly into alternative medicine and if things aren't proven, I'm very skeptical. but when things ARE proven and have clear diagnostic criteria and actually drastically impact peoples' lives,.....clearly it's real
Fru fru??? LOL!! I knew it...jk; that's so ridiculous that it's hilarious though!! Sad, yet funny. I only laugh to cope! 🤣🤣🤣🤣🤣
My PCP said that my POTS got worse after my diagnosis because "The more you think about it, the worse it will be."
Lila B literally same
It took me 20 plus years and many different doctors to realize I had it. Finding the right doctor is huge.
For me I'm undiagnosed but based on my pulse measurements and having nearly all symptoms I'm getting tested. I've had it where I'm completely aware of my surroundings but am unable to move or speak. I went to a neurologist about this and after many eeg tests they diagnosed me with psychogentic non epileptic seizures. They just thought me crashing was prettymuchin my head. (when I would stand or know I was about to stand i would get lightheaded, intense fatigue, dizzy and felt like someone was siphoning my energy and consciousness) the the therapy helped and I have gotten better (not that many of those spells anymore). I recently told my Dr and nurses at a really good drs office my symptoms and they're referring me to a cardiologist.
I love your videos! You're so relatable and real and that's what I love! Still in search for my diagnosis. Ran into another dead end 2 days ago and it's made me want to give up. Your videos help me to keep pushing forward and find out a diagnosis, good or bad. And knowing there's other people out there who struggled help encourage me to not give up. I'm not sure if I have POTS or not but my symptoms are increasing. I fell over at work yesterday (so embarrassing) because I couldn't gain my balance and was so dizzy and disoriented. Just fell flat on my butt in front of everyone. Every single time I stand now I go into pre-syncope. Not sure what happened in June but everything kicked into high gear and I've been coming to another, what I call, a health crash. :( I just want a freaking answer.
Anyway. I know my comments are always long. I just feel it's a safe place here to share and be listened to.
It is most definitely a safe place here to share whatever you want! I know how it feels to run into ANOTHER dead end when searching for answers. Hang in there because there are times when you'll make great strides in improving your health, just as there are these slow times when it feels like there are no answers or treatments
I can relate with everything you’re saying the docs, heat vs cold, and damnit why can’t I remember to stand up slow!!! 😂
I literally jump up forgetting that I have POTS then blackout and then I remember oh crap I have POTS
I was a dancer and gymnast when I became symptomatic. But when I was a kid (my fainting started around the age of 8), POTS wasn’t really a known thing and my doctor certainly didn’t know what it was.
I have never officially been diagnosed - my cardiologist believes I have/had POTS but I have not been symptomatic since my first pregnancy (for that I am thankful) and it’s hard to diagnose after “growing out of it”
omg I never remember to stand up slowly! Although I did finally right after this video and still got a head rush with pounding. I was diagnosed with POTS 7 years ago and hEDS a couple weeks ago (and a bunch of other stuff as well). I'm glad I found your channel!
I know this was 3 years ago, but, Izzy, I totally agree with you that this is one of your best videos! A family member has these symptoms, and you just explained that they are NOT made up, or overdramatic. POTS should be understood and taken seriously. Thank you!
The 1st cardiologist said POTS is uncommon & left it at that. The 2nd cardiologist I saw, a self proclaimed POTS specialist, took one look at the fact that I'm overweight, had never heard of Myalgic Encephalomyelitis aka CFS, nor my Mast Cell Activation Syndrome (my only 2 dx at the time, I now have ~20), he shoved deconditioning at me. So much went wrong in that appointment, & as soon as I get an official dx, I'm educating him. Because he also said I didn't have POTS because my blood pressure didn't drop on standing, & he ignored the fact my HR did increase by 15 bpm while I was leaning on something, & my bp increased greater than 20 ml on standing, which he should have said orthostatic hypertension, but blamed the illness he had never heard of.
I need to be within the weight limit for the TTT, MECFS knocked me out of my active life & weight gain happened with med side effects. I'm almost there, lost 40lbs on my health centered diet. And still working towards it. I will educate him because I have an obligation to any other POTS patient he may have.
My 3rd cardiologist is amazing & is super educated.
I got the deconditioning one (with an EDS diagnosis). My POTS came on suddenly actually and severely, literally over a period of a week I went from running my 5 miles a day and a figure skater to struggling to walk from class to class and unable to do stairs. I was 18, freshman year of college.
EDIT: I am a MAJOR fainter, those first 3yrs I lived in TX and was fainting 5-8x per day easily and was on driving restrictions. Even with that severity my doctor refused any meds or treatments and said "salt and water". Now that I live in AZ and have a specific clinic for EDS and POTS (Center for Complex Neurology, EDS, and POTS; it is amazing). I am on IV treatments daily plus physical therapy and use a custom wheelchair to avoid walking. I am now fainting about 1-3x a week, sometimes none in a week! I am still very symptomatic but more managed and can have a life out of bed. I also have HORRID temperature regulation issues.
Wow I’m in Mesa Az. I don’t drive. I am currently seeing Dr. Nemechek in Buckeye Arizona. He has a natural approach I’ve been trying I was doing better but I seem to have recurrent relapses and they seem to be always after an emotional concussion
Izzy...girl I need to be your friend!! Lol you're SO funny and personable and literally say and react to things the same way I would🙈. I was diagnosed with Dsyautonomia but think I may have POTS. I'm 26 years old, recently married, and have two kitties that I'm obsessed with. My husband and I believe I had covid back in March and have since developed Dsyautonomia. My PCP thought this was all anxiety. Finally have a cardiologist on board and he's so great! Since recently being diagnosed, I've been trying to educate myself as much as possible as well as start to adjust my lifestyle as I was very active before all this. SUCH a big pill to swallow. Your videos though have helped me SO much. I just wanted to say THANK YOU for being such an advocate and sharing not only your story, but just who you are to the world. Never thought I'd enjoy watching videos about POTS so much!😂💙
YASS! THANK YOU for this video! I have POTS caused by my hEDS. I currently can’t stand because of it. I was told that my POTS couldn’t have been causing me to faint, instead it was “functional”. I was told by one male doctor that my POTS was caused by my “long beautiful legs”. I didn’t go back to him. It’s a debilitating illness. And all the time people are like “Well don’t worry, you’ll grow out of it “. I have had doctors(even POTS specialist) insist that my POTS must be caused by a virus or deconditioning. I always have to explain, while yes viruses can cause POTS, mine was caused by my hEDS. Also I was never told what type of POTS I had at diagnosis? How did you find out? Sorry for the long comment!
Some dr. diagnose the different types and some don’t. It depends on each doctor if they even recognize the different types, which makes it confusing and weird.
I find, the summer or heat - outside, or hot showers are so bad for me. But yes also overheating in winter can be bad too. And I also can not deal with the cold. Basically, I could relate to all your sane symptoms! Great video as always!
I love this video so much! I'm 19 and I was diagnosed with POTS 9 years ago. This makes me feel so much better hearing I'm not the only one (obviously). Thank you so so much for making these videos!
hey joy! how did you go for diagnosis?
My seizures is what caused POTS for me and my god it's no joke. I'm struggling with it so badly still but this information that you post is incredibly helpful and it makes me feel like I'm not alone. Thank you for making this content.
I do the same thing all the time with my dysautonomia (standing up too fast, almost always). I keep telling my husband that you would think after the million and tenth time, I would remember to get up slowly, but I never do. Mine is orthostatic hypotension, though, at least that's what the doc says without tilt table testing me. I have only lost consciousness twice. The vision always goes first for me, too. I have gastroparesis, too, and joint hypermobility and dislocations, but not EDS. I can still relate to so many of your videos. I have Raynaud's, too, so the cold is not my friend either, especially the mildly cold because I always bundle up sufficiently and have my gloves handy when it's really cold, but I usually end up with blue hands on the mildly cold or rainy fall days when I don't think to dress properly. My dysautonomia seems to be worse in heat, and the shower is always difficult for me. Thanks for all the informative videos. They've been a great help since my diagnosis of gastroparesis several years ago.
I love how honest you are! Lol! Never be embarrassed when you speak the truth. You have a beautiful spirit. Thank you for sharing your story. I just started fainting and am starting to go through the process of getting tested. Right now. Thank you for your advice. I will heed your words. Many blessings amd prayer for better health. 😇
Izzy, thanks! I have Lupus and I was diagnosed with Orthostatic Hypotension, but I started experiencing heart rate fluctuations and severe fatigue when going upstairs. My new rheumatologist thinks it might be POTS and is sending me to a new cardiologist. I have found your videos so helpful and everything you say sounds like me! One question--do you get really bad leg pain as you go up the stairs?
By the way, I'm 44 and started experiencing these symptoms when I was 19. They've gotten worse with time. I'm also a professional Flamenco Dancer, so you're totally right about those two myths! Thanks again! ❤️
I didn’t know what POTS was until I started watching your channel. Eye opening! I fainted once when I was in High school from getting up too fast. I’ve always had trouble regulating body temp. When I’m sick and have a fever, my body will shake and teeth will shiver uncontrollably! Also when I work out I’m always sweating like crazy and then after I cool down I get FREEZING cold. Ugh it’s so annoying!
thank you so much for this video. i have to keep pausing watching it because i'm so emotional because FINALLY it feels like someone is understanding what i'm going through. i finally got a diagnosis of POTS last month after struggling with it two years and i have had many of these misconceptions said at me by family, friends, and even doctors. it's such an invalidating feeling when nobody understands what is wrong with you and just says, eat salt, drink water etc. it feels so so good to hear your experience and know it's not just me. i have just found your channel but i am really excited to go through and watch some more of your videos.
thank you thank you so much !!!!!!!
about the one that "inactivity caused your pots" is so frustrating because i've had my parents tell me that KNOWING i worked out every day for years, then cut it down to 5 days a week for other (mental this time) health reasons. and now that my symptoms are getting worse i just can't work out some days. so my parents are like "you're not working out as much that's why you're symptomatic" ...WHY do you think i STOPPED working out as much???
I've just found your channel and it's so helpful. I've been diagnosed with POTs and EDS for a few years now. Just hearing someone feel the same way I do is really helpful. Like struggling a flight of stairs but starting medication made that possible, yet I become super breathless and my heart goes nuts when I climb more stairs. I walk on average 4000-6000 steps a day so it's not due to inactivity and I'm not overweight. Even on meds, I have some bad days and missing a tablet can be devastating to my energy levels.
I hate summer too - I get more symptoms and get really cold easily and it's hard to heat up, but I prefer winter over summer.
Thanks for sharing this with people. :)
Thank you for this video. I totally get the feeling of sounding dumb. And I want to say, that seeing your video, and seeing you have word challenges was extremely validating for me. I have a doctorate degree and have spent a lot of time around really smart people, so my challenges with words and memory make me feel pretty bad about myself. I know that I am smart, but I can sound so dumb, and I'm rather self conscious about it. So, thank you for being yourself, for being real and for letting us see the struggles.
Yess thank you, I was so looking forward to this one!! This series is amazing for awareness, loving it!
SO glad you are liking this series!!!!!
Great video! I relate to these problems too from some doctors who aren't surprised that im not better after adding salt and drinking water, that it's lifelong. I once had a doctor who smirked at me and said that you're "always more likely to faint if you're around people" and try to blame mental health for dysautonomia, made me soooooo mad. I also have HSD.
My daughter was a track athlete and weight lifter who had been exercising almost every day for a long time when she got POTS.
I agree with you. I didn't even come down with P.O.T.S. until I was 55 years old. I was the oldest patient my cardiologist had (not now).
I was very active.
I’m 54 and it started when I was 41! Crazy symptoms misdiagnosed for years! No disabled unable to drive or leave the house
I was diagnosed with POTS mid last year, caused my my long Covid/covid infection from a year ago. When I was doing the 10 minute stand test in the cardiologist clinic I felt like I was going to faint and the nurses helped me to lie down. I can’t remember if I lost my vision but I did become very sweaty. Then 2 days ago at home I felt like I was going to faint and I slowly started to get on the floor, but before I could I lost my vision and suddenly collapsed onto the floor. I didn’t become unconscious and I could still hear but I was suddenly very weak and felt dizzy for a while afterwards. (I’m currently wearing a 48 hour holter organised by my cardiologist - I’m a little disappointed that the collapse happened one day before the holter was put on so they can’t see what my heart was doing at the time.) It was the first time I’ve experienced anything like that and I was searching for POTS videos to see if others have also experienced this. It sounds like presyncope, so thank you for helping me put a name to it.
Question: Do you ever notice that stressful situations make your POTS worse? For example, when my son (age 8) had to have eye surgery, when I went back to recovery with him, and the nurses were trying to explain the after surgery process, I fainted on them. I scared them. LOL. They called my husband to come get me. It was so embarrassing.
hmmm I actually don't think so! I could understand why, though, because anxiety increases your heart rate and put that together with POTS and it's NOT fun!
don't have pots and not a doctor but i believe stress can make everything worse
Just discovered your channel and it is pure gold 🪙🪙🪙🪙. This is helping me prepare for my cardiologist appointment so that I feel educated enough to advocate for myself. Thank you for being a badass.
I’m so glad that I found this video!! I have POTS and it sucks. At the moment, I’m lying down with my feet up. I can’t wait to see more videos!!
Just like my adult son...you teach me so much..that helps him.
She's not dumb, she just sounds dumb! You are awesome!
Hi Izzy,
This was really helpful. Just got diagnosed a few days ago (2 years with "undiagnosed fainting spells") and still getting my head around this. Thank you for this video.
You are so strong girl. I myself am a chronic pain patient. I can only see the last two weeks in your page. I was wondering if there's anywhere else I can see since you started documenting? You are such a strong person. God bless you Izzy
Those comments about standing up too fast is such a mood lol
Watch to the end!!! I have temperature regulation problems too even overnight. I'll wake up 95.5°F In the morning and be 99.7°F by the afternoon. It's beyond horrible and I'm still not fully warmed up at ten am and I woke up at five. I live in Cali and it's only September! I love the end. Xxoo
According to my doctor if I don’t faint then I don’t have POTs. Gotta love some doctors!
I have POTS and I faint 15-20 times a day. I’ve learned to live with it and I’m adapting more and more each day!
Can you do another video about what you eat in a day with GP? I also have GP, Endometriosis, bladder muscles that do not work and chronic pain! I love watching your videos because it doesn't make me seem alone.
im so glad my videos can make you feel supported!!!!
@@IzzyKDNA No worries then!! I still love watching your videos that revolve around GP and other chronic illness! And, thank you so much for responding, it made my day! I just had some 7th surgery a couple days back, so a little joy is nice lol!
I’m unofficially diagnosed in the process of being tested to be officially diagnosed. Mine is caused by too much trauma. Basically. Too much adrenaline & my autonomic nervous system shorted out. At one point. I was very active. *Running* 2+ miles a day + cardio. Now I can’t get to the other side of the house without being symptomatic. 🙄
Thankyou for the video. Royal Brisbane said I don't have POTS or Dysautonomia even thought I had 2 dystonia autonomic seizures and because I didn't faint during their tests?
I do!! Because and how can I not with blood pressure of 93/53 and can't sign for 5 minutes without falling asleep? Can't see how I wouldn't having Hypermobile Ehlers Danlos Syndrome and when my POTS plays up it's like falling off a 10 storey building at free fall, hot cold, pale white face and about to throw up all while I am sitting.
Love the bit about stairs, 20 yrs ago in my 20's I always struggled walking up a set without constantly stopping.
But wait! I don't have HEDS only Benign Hypermobility Syndrome but my son has a 9/9 score and been dx Hypermobile Ehlers Danlos Syndrome. I had only a 8/9 score? Whattha!
I love this video!!!!! I've had pots for years and I even learned some stuff from your video!!!! I love how you talked about how some people assume inactivity cause POTS because I was a figure skater before I got POTS and was skating almost every weekday and I had to stop because of POTS! Such a great video! Thanks for making it!!!♡♡♡
I know exactly what you mean about the temperature and clothes. You explained it in a pretty perfect way. lol
Thanks for just being yourself.Nothing dumb said.Keep recording.I have POTS also.Your real life experiences are helpful.Thanks again.
My Cardiologist thinks I Have Vasovagal syncope but I have more symptoms of pots than I do of vasovagal syncope. I currently have a loop recorder in my chest atm and find out on the 16th what is actually "wrong" with me. fingers crossed I finally get some answers.
your videos are great and I have watched heaps of them, thank you for being so informative :D
good luck!!!
@@IzzyKDNA Thank you, fingers crossed it doesn't require more surgery... 🤞🏻
So I sort of have an update. Going to see a different cardiologist as mine didn't care about my super low bp. He said its nothing. Also doesn't want to see me for another year.
Went and seen my doctor today we tested my blood pressure sitting then standing and my blood pressure dropped alot but my oxygen went up heaps more (doc is concerned) fingers crossed this cardiologist doesn't just tell me its nothing. I'm sick of feeling like I am about to faint every time I stand up. :( fingers crossed.
Looking back, I have probably had hPOTS for nearly 20 years.
I WISH I could "grow out of it".
I get so frustrated when I stand up too fast I fall and lose my vision and hearing but I'm so conscious so I can't really tell anyone that I passed out.
Thanks for sharing your experiences! Helps a lot as I can relate to them and especially since many doctors think "you know it's a controversial diagnosis".....
I have vasovagal syncope & when I have an episode, I never feel it coming, I mean all of a sudden I’m getting off the ground.It doesn’t happen very often but when it does, I usually get hurt. My cardiologist told me I cannot drive anymore because one time I was driving & drove into my neighbors mailbox. It was pretty scary.
I developed POTS as a teen and passed out fairly frequently. Now i mostly just experience pre syncope, though i do still occasionally pass out and, in summer especially, will have episodes of just being symptomatic all day long and just needing to lay down.
I get to a point where i almost pass out. I see spots and its like static and i cant see. Im going to go get tested for pots this month.
There are inner ear issues that can cause similar issues. I have two family members with that going on. .. but it's two different inner ear problems.
I feel like my Dr. doesn't believe me. My symptoms started last year after Covid. Gastroparisis and POTS. I feel like I'm on a stuck merry go round. I'm being tested finally because I am making them test me. Because if you guys my symptoms are more manageable because I'm taking salt tabs and b1 and wearing compression stockings. Now I'm worried my symptoms won't be bad enough for the test. It's so sad I'm here suffering. I need a new Dr.
I hate the inactivity excuse. My POTS came rather suddenly, but I was on my school’s track team, and my local dive team, and doing horseback riding. I definitely wasn’t inactive...
Hi Izzy, my daughter was diagnosed with POTS in the spring of this year. I found your channel from the review video you did for the Embr Wave Bracelet on Dysautonomia International’s FB page. My family has realized that the winter is worse on her but we have linked together that when the barometric pressure drops (we live in Colorado) she passes out more and feels terrible. I was just wondering if you might have heard anything about this? She’s 16, so we don’t get great explanations from her about how she feels so I also wonder if she’s just to cold. I bought her the Embr Wave bracelet and she’s had it a couple of days and LOVES it!! I hope this helps her even if it’s just a little bit! Thank you for sharing your life with a chronic illness especially POTS since it IS so very controversial with doctors!!
yeah i've definitely heard that some people get worse when the barometric pressure drops! for me, it affects my joints more than my dysautonomia
I recently got pots and I’m super curious how you build up the the confidence or idk the word but I’m scared to go out and hang out with people because I’m scared that everything will switch I have awful side effects that make me see tunnel vision and zone out and it’s giving me such bad anxiety that I’m scared to sleep at night because I’ve been sick for 2 months so if you have any suggestions or anything please comment just subscribed ❤️ thanks for posting this it helped a lot
Even after all these years having it, I STILL forget to stand slowly! I can remember as a kid/teen my mom telling me to slowly stand up. Years before I was dx w eds, pots etc. yet, I was put on propananol back in my early 20s, but was never told why. I had to stop when I got preg the first time 18 years ago and just never went back on. Yet, my husband takes it for HIGH blood pressure.
Eye floaters- so freaky, I get them almost daily.
Thank you Izzy as always! Are you aware of any EDS or POTS support groups? I’ve been trying to find something online or in person but haven’t had any luck. It’s been wonderful to find your channel and follow you for the last few months. You are helping me by learning how to better articulate our conditions and advocate for myself. It’s nice to know I’m not alone in dealing with these problems even though some days can feel like I’m totally alone. Thank you for your courage.
I just went to a specialist about many things including symptoms of pots and they said just about everything EXCEPT “you have pots”. Like i explained how all my symptoms line up, they explained what my body is doing (quite literally described pots) and then said drink more water and sent me off. Oh how i love going to the doctor 🙄
Exactly! Almost all of the ppl I know who have POTS were extremely active and athletic before
I used to faint, still experience presyncope and know to lean against stuff when dizzy, don't ignore it, make sure to eat lots of salt and change something when it's to crowded or hot or humid. I haven't fainted in a few years. Doesn't mean I grew out of it. I learned to deal with it since it's supposed to be 'normal'.
I was diagnosed with vasovagal syncope when I was like 7, but I'm positive it's POTS, I brought it up to my doctor and she said that they can't diagnose me with pots unless they rule everything out and tells me to exerciseand drink water (things I do extreme everyday because I'm in color guard which is very active) and my condition is getting worse, like my heart rate gets to 217 bpm and no one, not even my parents will take me seriously and expect me to function as a non sick person so I suffer as a 17 y/o chronically ill kid without any kind of treatment 👍🏼
So grateful you touch on this subject. I have NCS (Neurocardiogenic syncope) had it from heat exhaustion back in 2017 and its been HELL! Oh my gosh. Luckily it has lessened to some degree but having drs think you are crazy was the worst thing ever. My blood pressure would be at 150, ten minutes later, 130, 39 minutes later at 119, and a stress test was all it took to confirm. Neurologist pinned it immediately to NCS so I was grateful for her. Just been on thermotabs since then :/ and praying it goes away soon. Ugh, Izzy do you ever feel like a dysautonomia flare up after a bowel movement ? (TMI im sorry but I do :/)
About your last question, I personally don't, but I've had a bunch of people ask me that SAME EXACT question, so I assume that there's definitely something to that!
I was a really fit healthy person. i was running stairs (30 set of 15 steps) everyday. I went to a workout class and i passed out. When i came too i had all the symptoms of pots. it took 2 years from that point to be diagnosed and so many appointments and doctors. i have had so many doctors tell me it due to me not exercising and that i did it to myself. i am starting a cardiac rehab program feb 21st. i am really hoping it works but i dont think it will
*Giggle* I so relate to keeping on forgetting to stand up slowly! :-) Thanks.
Mine developed when I was doing gymnastic three times a week. It only got worse when I was doing XC in high school.
ok i love the parts of your videos where you ramble a bit, i relate so much and i feel like i sound dumb at precisely the moments where it's important that i Not sound dumb lmao it's very relatable is what i'm saying and lowkey i feel like thats the adhd talking bc when i talk to other people with adhd we loosen up whatever filter we might have that keeps us restrained from getting sidetracked and talking around things and it's actually one of my favorite things in life :) i hope this doesnt sound mean lmao i'm just trying to say i relate to the way you end a lot of videos and i really appreciate that you keep that in :)
I started with it in my teens. Was told by the gp then to eat a sweet if it happened again. Have had periods of it since then and im in my 40's. Went to the gp before xmas and they thought id had a stroke. I didnt. But got evidence that my bp plummets in an episode. Still waiting for a different referral
You are so adorable and funny! And clearly, you're not dumb. You're just saying it as it is. And thank you for all the interesting information! :-) Big hugs from an EDS-zebra in freeeezing cold Norway!
I was weight training and in the best health and condition of my life when my POTS started causing issues along with my Prinzmetal angina spasms. I hate when doctors try to flip it. Yes, it goes hand in hand now, but it didn't start that way, I was conditioned well.
Do you still attend WashU? My 17yo daughter has POTS and gastroparesis, and we live in a StL suburb. I think speaking with someone like you over a cup of tea would be so helpful.