POTS Diagnostic Criteria Test | Three Types of POTS
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- Опубликовано: 11 авг 2019
- Think you have POTS or awaiting a POTS diagnosis? In this video I explain the the diagnostic criteria for POTS as well as the three different types (hyperadrenergic, hypovolemic, and neuropathic POTS). POTS stands for Postural Orthostatic Tachycardia Syndrome. Many different underlying conditions can cause POTS, though it can also stand on its own. My cause is hypermobile Ehlers-Danlos syndrome.
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#pots #posturalorthostatictachyardiasyndrome #tachycardia 
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I just did this & I had the same results as you….. II made an appointment with my doctor just before watching this. Idk what my results mean right now, but I’m DEFINITELY suspicious. 🤔
I tested myself again today and it was my most drastic yet!
laying down: 58
standing up: 152
almost 100 bpm increase
and yet I'm still not diagnosed because my doctor thinks I'm too young (I'm 14) to be sick
Update: it’s been like 2 years since I wrote this comment and thank you to everyone who’s replied, I’ve been diagnosed with pots since June of 2020 this was just before we had an insurance switch that allowed me to see a specialist :)
I’m 13 and I have Eds, scoliosis, kyphosis and many more. My doctor does not want to test me either bc I’m too young and he’s scared bc my anxiety is really bad. But I’m sure I have pots my resting hr is 88 and standing is 145. And stone times I pass out. But I think we should not give up finding a diagnosis if you know something is wrong with your body.
@@balazsluca637 I'm in the process of being diagnosed with EDS but my doctor (not my cardiologist) isn't sure whether it's classical or hypermobile and due to corona I can't get tested. I also have scoliosis + other conditions and I absolutely agree that we shouldn't give up. Sorry to hear you are in a similar situation with getting a diagnosis It can be tough. Thanks for your comment :)
Old lady here -- 69, and my doctors refuse to even consider things I've dealt with all my life (like this) because if I actually had anything causing these symptoms, it supposedly would have been caught when I was a child! I hope you have much better luck.
Karla York I’m sorry to hear that- It’s so frustrating that some doctors won’t believe you no matter what your age. Luckily last month I switched cardiologists because of insurance and she listened to me and I finally got diagnosed with POTS. I hope you can also find out what’s going on and get some answers :)
@@parkerm2546 Thanks, Kaylee. I'm glad you found a good doctor.
laying down: 80
standing up: 140
My doctors over the years: "Nah, that's normal. Stand up more slowly.... oh and everyone's tired. You wait till you get to be my age, then you really feel tired."
Luckily I finally did find someone to take me seriously in the last few months, but I am always terrified to go to the doctor because I feel like death and am in desperate need of help but in the past no one has taken me seriously. I have other serious issues too, I'm very ill. But I have a block in following up because I don't trust doctors anymore.
💗Jesus loves you so much!💗 don’t worry😊
Hm. A test I can actually pass.
😂
😂im in love with this comment
Me with my mental health questions😭😂
Lol 😂
Eeeeeeyyyy
Had the tilt table test recently and I "failed it". I put parentheses around failed because the tech was writing down the vitals. I have videos and wore a heart monitor for 7 days and it picked up my Tachycardia very high. 171 beats per min. Im tired of medical gaslighting. The hospital i had the test done in was extremely cold. My issues exasperate when I'm hot or doing every day things such as making food or getting dressed from taking a shower. Im at my wits end!
Thank you for this video!
I am so sorry to hear that! I am scared this will happen to me as well, despite dozens of tests Ive run at home and recordings Ive taken of my bpm jumping from 58-78 range to the 115-140 range.
I stand up too fast all the time forgetting I have POTS and have to sit down quickly before the room goes black.
7⁷UK 7 Loki
Same
@@gurgurgur I promise god can’t fix my heart
@@belajibben6047 Does pots leads to heart failure ? Plz reply 😭
@@belajibben6047 My heart rate is 115 while standing up is this a sign of pots?
Wow. You explained that so much better than any doctor ever has. I actually understand it so much better than I ever have understood POTs. Thanks!
wow so glad to hear that!
Wow you are amazing
@@IzzyKDNA wow you are smoking
@@IzzyKDNAu feel low energy sym please answer
Story time: I think my doctor diagnosed me with POTS back in France. I did not speak a lot of French, we were communicating in English, he took my pressure while sitting, then while standing, and then told me to eat more salt. So...yeah, I think I have it.
I still remember the first time I completely passed out, woke up on the floor, and thought- huh- is this normal? I was eleven years old. I didn't get officially diagnosed with EDS, Chiari, POTS, et cetera until I was almost 30... such an under-studied area of medicine. Advocate for yourself! Thankfully, I have a great PCP who has learned along the way with me! Along with a whole care team. Gentle hugs and prayers to anyone living this life. Manage your spoons! Thanks for sharing your story and info!
I’ve been struggling with shortness of breath and feeling like I’m having a heart attack for over a year, I’ve had chronic joint pain for 6 years. When I went to the hospital they ran an ECG while I was lying down and it was normal, did a CT and it was normal. They called it anxiety.
I haven’t felt like I can breathe at times out of no where for so long. Only relieved when lying down. Your videos helped me advocate to my doctor and she thinks I have POTS. Your videos helped me discover my hyper-mobility *I always thought it was coupled with flexibility* and have given me a lead to what was happening. Thank you.
This is how I feel... I went looking for help because I can't take the shortness of breath anymore but when I lay down it feels a little better.
I have THE SAME issues... I was diagnosed Dec 2021. I've been miserable.. but doing alot of research and trying to find support & remedies.
@@ogchicoo how are you feeling now?
When I was diagnosed I was told I was “borderline” pots. After watching this and tracking my own heart rate I realize I was tested incorrectly multiple times. The first time I was tested it was almost correct and that’s when I was put on medication. The second time the whole process took four minutes and I was told “we don’t treat cases this mild” after being incorrectly tested. Still salty about it.
I like that you used "salty" haha ;) Sorry about this, it sucks when doctors mess up
Kayla Cote Doctors Thanks! Stay salty! 🧂
Lucky.... I wanna be salty to 😭🤣
I was finally told I have “dysautonomia like disorder” when I clearly have POTs! Drs are so frustrating! I was told I had panic attacks for years only to find out it was dysautonomia. Salt helps a lot. Stay salty friends ♥️
I have had similar issues
I filmed a video of my heart rate for a year and uploaded it RUclips. I actually got diagnosed with POTS this month cause I had footage to show my doctor so he would send me to a specialist.
Thanks for this Izzy. It means I can talk to my GP about this without them putting things down to my “age” (I’m 55).....
Megan I was 50 when I was diagnosed. It had never occurred to me that I was hypermobile as I didn’t have many unstable joints, so it came as a bit of a shock!
I’m 34 but my passing out started 12 years ago. I’m just finally now trying to switch doctors and find out if I possibly have POTS. Oddly I found out recently a lot of symptoms I have that I thought were all separate things are in the list of POTS symptoms.
Im 31 and they say its all in my head. That im fine. 😑
Theyre like oh youre 31 you dont have heart problems. Ive heard the age thing too many times.
As a fellow POTS patient the tilt table test was the worst thing I have ever done. This is very informative.
What is the treatment for pots
Does pots leads to heart failure?
@@unnikrishnanpillai4499 there’s no cure for POTs only medications to help manage it and it all depends on the person cause POTS is like a collection of other auto nervous system issues. In terms of heart failure that is also dependent on person to person and the severity. Life style, diet, medications, etc etc. there’s not one correct or specific answer
@@unnikrishnanpillai4499 for a healthy person no it does not lead to heart failure
I have to have one next week, I'm so scared! So it IS as bad as it looks? 🥺
I'm a school nurse and have a student with EDS, POTS and MCAS- your videos are great in helping me and her teachers understand all thats going on with her. Your showing your heart rate resting vs standing was very powerful. Thanks.
I am sooo grateful for this video. I’m 49 and crying that I have gone my whole life with shame about my level of fitness. Inability to manage my nervous system despite being a psychotherapist who helps others with PTSD and managing nervous system regulation. I hike and do yoga and walk and always feel like I am trudging through each movement compared to my exercise group. You are a gift. So much gratitude for you time and generosity in sharing. ❤
Weirdly, I got diagnosed with POTS at Boston Children's Hospital and didn't get a tilt table test. Weird because it's a very large, very experienced hospital so I don't know why they wouldn't have a tilt table. Either way, I got diagnosed and responded really well to treatment.
When I moved care to an adult hospital, I started having new symptoms (different to the ones I had before). I finally got a tilt table test and got diagnosed with neurally mediated syncope.
The last few years I've considered myself in remission. But I still have lowish blood pressure and fast heart rate.
Thanks! I got a pulse oximeter to monitor during the pandemic, and I started noticing weird stuff. I've always felt pretty gross but no doctor has looked into it because it's always written off as my panic disorder (hello, I know what the difference feels like). Finally I now have a doctor who actually listened and immediately put me on a heart monitor for 48 hours. I just turned it in and have to wait, but this is basically ticking a lot of boxes for me. Laying down I can get my heart rate down in the 70s, but standing up, even slowly and gently, my heart rate IMMEDIATELY goes up over 140.
I have an anxiety disorder as well. It’s so frustrating when doctors write off your symptoms as anxiety when you know it’s not.
@@allyson2382 Same and doctors are constantly writting everything off as my anxeity.
I've been having symptoms and my mother is the one that thinks it's just my panic disorder! As if we couldn't tell if it's different so no blood test or anything for me
@@allyson2382 I'm actually scared of getting this, because I show signs of what is probably OCD (albeit i can't access a doctor), and also showing weird symptoms that dont seem to be FROM the OCD itself (livedo reticularis, sometimes hands get red and spotty and oddly tingly in fingertips, keep getting dizzy getting up which at first happened only getting up from laying down, but it starts happening whenever i get up now)
@@allyson2382 sameeeeeee
I have it when I stand up, I can see what appears to be a blood vessel in my vision that seems to pulsate with my heart beat.
I get that, too. And often I can hear it in my ears, too.
All Drs SHOULD BE LIKE THIS woman. clear advice that makes sense !!!!!!!!!!!!!!!!!!
Actually this really was helpful for me because I am suspecting pots. Thankyou for sharing!
so glad it could be helpful!
Did a test 60 laying 160 standing TOTALLY HEALTHY-DOCTOR
I have pots and orthostatic hypertension here are my symptoms and results from doing this test. It’s super long but if your willing to read go ahead:
-whenever I stand up from sitting/ lying down/ or especially in the morning when I first wake up I get dizzy, faint, blood rushes down to my feet, blanking out (my favorite way to explain is like when you are outside on a very sunny day and you go into a dim lite, pretty dark room where your eyes have to adjust, everything gets black as my eyes try to adjust, seeing spots or fuzzy/ blurred vision, reminds me of visual snow, sometimes my head hurts, legs will sometimes give out or weaken, heart beats faster and sometimes you can hear it in your ears.
-when standing in one spot for long periods (30- or more min) of time my legs will itch super bad, tingle sensation, they will turn from pale white, to a hot pink to purple, feel really hot to the touch, and I will get goosebumps, sometimes I get a cold sweat where I feel nauseous and icky, then I have to fit down and try to recover, one time I had a situation, now mind I have no idea if these symptoms are together or if they relate to one another however, I did get very nauseous everything felt like it was spinning, tilting when walking, swaying back and forth, unbalanced, feeling of being pulled to one direction, sweating, nauseating, ear ringing, collapsing, faint feeling, cold sweat, wobbling legs and loose limbs, if I don’t get enough sleep these symptoms do tend to have a worse effect but they never got as bad as that one since that day. Although many of the symptoms were the same they never got that bad. It was kind of a one time thing. That’s kinda just the extent of what it could be.
-I’m always thirsty but even when I drink the proper amount these things still happen
-I had it before I had an eating disorder called anorexia but very very rare/ almost never and it wasn’t a real problem at all, sometimes when I ran to much in the heat and got to exhausted, but it has gotten way worse after and during is when I started noticing it going on, now to the point where it happens almost every time I stand up (you know with few exemptions, meaning when I sit down for a couple min. And get back up to do something) rapid moments like those don’t always cause something it’s just happening more often.
-another kind of way I could describe it is when you wake up first thing in the morning, you know you stand up and then you go to yawn and stretch with your knees locked. It’s the same feeling just a little more prolonged and a little more intense.
-sometimes this happens once I stand up, and other times it happens after I walk a little ways.
-sometimes I will get up and walk a little before these symptoms occur
-high energy activities such as pe or just not drinking “enough water” do not help and make it worse, they may even contribute to the symptoms
-eyes hurt frequently
-when my legs tingle and turn red once I start moving it goes away
-period makes it worse
-lying down I get sea sick with slight headache when I usually don’t get them
-blurred vision I’ve notice my vision has gotten way worse
-weird sharp pains in my chest, very quick DONT last that long and go away pretty easily
-light headedness
-when I lay down on my side it feel dizzy as well as pressure around my head mainly on the sides but could occur as a squeezing pressure from the front and back of my head
-sometimes it comes in multiple waves, can knock me down, hear my heartbeat coming out of my chest and in my ears, pounding hard
-longer I’ve been lying down, the worse it is
-hot weather makes it SOOO much worse
-shaky at times
-sleep deprivation makes it way worse
Bottom of my feet will turn completely white, yellow color and be very cold to the touch. I can’t feel anything when there like this there just there. If I take a hot shower to warm them up it feels like sand paper and it hurts until blood pumps back
-showering, sometimes I’ll feel dizzy
-drifting in and out of waves and slight consciousness
-often run out of breath and have to take a deep breath to get more oxygen and often feels like there is weight on my chest
Results:
resting heart rate for 10 min was 83 bpm
Immediate Jump in heart rate first standing up was 128 bpm
After standing for 10 min. The highest it got was 192
(I hope this helps anyone out there confused. Remember everyone is different and types of POTS can differ from person to person)
How you feel now??same problem with mee
I've had POTS for several years. This explained better than all my doctors combined. I didnt know there was 3 types of POTS.
I'm 53 and was tested for POTS some year's back, even had the Tilt table performed which results were great. I've been to roughly 5 different cardiologists from 92-97, 3 of them diagnosed me with Mitra Valve Prolapse, than the last two confirmed I didn't have it due to better imaging technology that came out in later year's. I was diagnosed with Hypothyroidism in 96, had a partial Thyrectomy, in 92 a complete hysterectomy. My heart rate for past 3 years was sitting around 107 bpm, would get lightheaded at standing, terrible anxiety, blood pressure would increase. Last month went to ER Clinic couldn't tolerate it. No findings at ER, however since it was a clinic it would take 3-4 days to receive TSH- Thyroid panel. Something told me I felt my symptoms were due to possibly my TSH had moved into hyperthyroidism, regular doctor conducted the panel and sure enough it had moved to hyper. Although a couple months ago when I had TSH checked it was in normal range and was still getting increased heart rate but I've surmised that although someone can be in normal range that normal could still be symptomatic for them. Since decreasing my Thyroid meds my heart rate has gotten better. My point is, a thyroid condition can mimic POTS, and as you stated a Autoimmune Disease can be a cause to POTS. I recall bad around 1997, I went through a period of having low blood pressure upon laying down and heart rate would be increased, I had lots of fatigue as well. It's a very complex medical situation. Sorry for the long post but wanted to share some of my story in hopes it may help someone as to get their Thyroid levels checked as well and get check for Autoimmune Disease. It's the motor of the body and presents all sorts of symptoms, ( beyond the common symptoms most often made aware of, even pre-menopause and menopause). I really enjoyed your wonderful articulation of POTS, you have a brilliant mind and very empathetic and I thank you. I'd wish I had known the information you shared back when I first thought I had it, which I may still, tricky stuff. You're an amazing asset, much appreciated. Thank you. I wish you all the best of health.
Thanks for sharing, how did you get well?
You have given me way more information than the specialist who diagnosed me. Thank you x
Thank you for these videos. My 16 year old niece just was diagnosed with EDS and Pots and we wanted to understand what it was that she had.
I was just diagnosed yesterday. It makes so much sense now.
I had a tilt table test and it was by far one of the worst things I’ve ever gone through. I felt like I was going to puke for 10 minutes before just passing out. The 10 minutes felt like 10 years though. I couldn’t do much for the rest of the day either.
Same exact thing happened to me. The cardiologist said that was a “normal” reaction & said I definitely didn’t have POTS. I’ve been fighting for a diagnosis for 6 years & its beyond frustrating
This was actually much more helpful and educating than my cardiologist! Thank you!
I every type of POTS that you spoke about and EDs3 it's been a hard life. So thank you so much for these videos. I'm 48 and still going through hell.
Mine is weird! One cardiac looks as my tilt table says I don’t have pots, another says I do...but we most assuredly know I have orthostatic hypertension. But mine is picky...some days I will sit down a few, get up and my head pounds, goes numb, I loose my legs and my HR goes up..but now I’m on a med to keep my heart rate low. I’m odd because everyday is a new reaction. More like hyperadrenal...
I know I was diagnosed with inappropriate sinus tachycardia but they thought Lupus was attacking my autonomic NS, but now we know it is EDS/Dysautonomia. My heart and body is just super sensitive to everything...I’m just so confused! Has anyone had their cervical/neck mess up, or their collar bones? I can’t even think right now to write....
I love reading from someone else with Orthostatic hypertension! It’s so hard to find information on it
@@BiggestBisonLover moming with Migraine lives with it. It's made things complicated for her as well. Her channel is very informitive though.
Absolutely! I’m right there with you! 👀
Yes. I definitely have POTS, but it took a holistic, functional osteopath to tell me it was POTS. Described 3 ER visits after fainting to regular MDs. POTS was never mentioned. I have a cervical curve problem from a whiplash injury long ago. Look at YT videos by Dr Hauser. He explains in depth how cervical vertebrae problems affect the vagus nerve. It turns out vagus nerve malfunction causes a multitude of health issues. Now I’m looking for a good chiropractor. I’ll add a link to that website in another comment.
@@carolcrumley4597 i wish I could find more info besides just the one guy repeatedly talking about this. The one guy who offers treatment for what he is connecting in the videos. It makes sense to me but I need more science and data and studies.
I have had neck issues for a LONG time, I’m hypermobile but not hEDS criteria. I have often felt the neck problems related to my POTS symptoms, because I get the god forsaken coat hanger pain and it intensifies around my cervical spine with my POTS symptoms.
Many doctors, no clues.. just now finally putting the pieces together on my own and seeking informed care after a decade of suffering.
So much technical knowledge 😮 and adding in the best treatment options is very helpful. I didn’t even know there were types!
In my experience, the tilt table test is one tilt up and one tilt down. It sounds scary but it’s controlled and they walk you through the whole thing. Totally worth it to get a diagnosis and treatment.
my cardiologist brought up POTS after my tilt-table, which i had kind of expected and done some cursory research beforehand, but he described it as kind of a nebulous diagnosis (which i think is a fair description.) your description of the different types of pots was really helpful and was never really clear to me, a lot of lines would blur and i would have a hard time explaining to other people in turn........ thank you so much for this video!! i love clear and thorough information :)
Amazing video Izzy!🦓💛
Thank you for explaining so well!!!!!! It's very helpful
Thanks for this explanation. I have EDS and havd been waiting 4.5 years to see a POTS specialist. I have been really struggling with hyperadrenergic POTS and knowing this information is helpful.
You are AMAZING Izzy! So positive! Such a bright smile!
Thank you for adding to the world by contributing your understanding as a patient and member of the hEDS community. 🙏🏻❤️😀
I found your videos through Jaquie's videos, god bless her. I just had port surgery for saline hydration therapy. Sometimes, I do have a blood pressure drop when I stand up, but I also have vasovagal syncope. You both are part of my inspiration to start my own channel. It's so helpful to see so other patients share their journey!
I think it’s interesting that POTS is related to EDS! I have hEDS as my current diagnosis but am going to see a geneticist next month! (Hoping it’s hypermobile or a lower risk form of EDS). What’s interesting is that 2 years ago my brother had a dysautonomia (or however it’s spelled) episode and I experience POTS symptoms pretty frequently.. I’m hoping with a solid diagnosis I can receive closure and A REASON for why I have weird things always going on with my body😂 your videos are super helpful and I love that you aren’t complaining or wanting attention for having this illness but instead are raising awareness and providing some education about the conditions! You’re awesome!
Yes!!!! Thank you so much for showing your blood pressure. I have tried googling if my change in bp is normal, but i haven’t found a real answer. My bp is pretty much exactly what yours is when sitting and standing, except that my systolic drops a bit more when I stand. It’s nice to see that I’m definitely not alone with this issue.
Thank you for sharing This was very helpful
This was so helpful. My diastolic rises and systolic is inconsistent. Sometimes it's less than 10 pts in difference. It kinda freaks me out, I've tried to find answers, and I can't. I've been suspicious of hyper POTS, so I was so glad you mentioned the increase in diastolic with hyper POTS. After several months of waiting, I'm finally getting my TTT next week. I've asked them to test me for the hyperadrenergic symptoms, but they've been so vague about everything, I really don't know what to expect.
I'm interested to know how you've learned so much. It's all so overwhelming.
Great video. Thanks for sharing. I have Hereditary Alpha Tryptasemia and polycythemia. Recently been having heart arrhythmias and dizziness. Time to get tested for POTS.
wow! the links to other vids in the description made me subscribe. bless u
I too have EDS...Type 3 (ELHERS-DANLOS Syndrome Hypermobility) and POTS due to EDS. I appreciate your video!
omg you are a genius .I just realised I have a third one I always thought I had anxiety I told my cardiologist he said it's all due to my anxiety. but this makes so much since my blood pressure lying down is 110 73 and it goes to 126 to 89 when I get up with a 50 beats rise.
This is SO interesting. I was just diagnosed as having HEDS at age 48. When I was a teenager, when standing, even just for a few minutes, my feet and lower legs would turn completely purple. I had a habit of marching in place because it would get so bad and they would feel so weird and tingly and swollen. My parents used to point it out to me when I would stand washing the dishes, for example. It was just "normal" to me. Hearing what you said now, about the "stretchy blood vessels", and how things tend to improve as one ages, it makes so much sense. It still happens, but not nearly like when I was 16! Thank you for this information when it is so difficult to find elsewhere!
You are amazing! Thank you so much for your help.
THANK YOU for this video. I was confused because I have every POTS symptom but my heart rate shoots up but my dialastolic blood pressure was going up. I was so confused why that was happpening but the specific types makes sense. I also was told pots gets better as you get older but it has gotten worse so that was also confusing but knowing that specific type gets worse makes me feel better to know i'm not crazy. I have been in so much pain for so long and I was so confused, thank you
This is such an informative video, beyond helpful! Thank you!
so glad to hear it!
I love how informative your videos are Izzy. :)
Even though I was diagnosed with POTS 8 years ago, doctors gaslight me till this day.
While I do have anxiety on top (due to other life things) its obviously not what my chronic illnesses are + i know the difference!!
Its just crazy to feel like im only just now learning more about the illnesses I've had for so long!!
So grateful for everything you share.
Thanks for the video! I had a tilt test done two months ago and passed out on the table. My bp dropped to nearly zero and my cardiologist said it was probably vasovagal syncope. I’ve been taking my bp throughout the day now and really relate to pots and EDS symptoms. I took midodrine for a month but my symptoms were not improved and I was actually having an adverse reaction. I’m on atenolol now but still not seeing much improvement
Thanks for explaining it so well. I needed to understand this for a friend and now I feel like I do, great job!
You're a good friend doing your due diligence and look ups online. Some people go at it alone or their 'friends' could care less about it lol! Stay safe stay healthy 🤙
getting tested tomorrow...super nervous. thanks for the video!
So much more helpful than most doctors thanks. I get lightheaded and out of breath every time I stand up without tachycardia so idk…
Thank you so much for this. Im still a teenager and my doctor suspects that I have POTS but he said I still need to go through testing to make sure. I was really afarid of what type of testing it would be because he dident say. Now that I know what type of tests I will have to go through I feel a lot less anxious.
I usually have to lay in bed for a while after waking up because if I get out of bed right away I'll feel extremely dizzy and nauseated. Then when I do get up I need to take it easy and often need to stand for a minute or so to collect myself. I have many of the other symptoms of POTS. This came on the last couple of years and has been extremely confusing. Some days I have to spend hours laying down before I feel ok. It's really hard to explain to people why I can't get out of bed and when friends ask "What did you do today" I often just lie or say something vague like "Not too much"... My mom got me on these amino acids and I found they do help a lot. I take them to be able to function during the day. Except they are over $50 a bottle which lasts a month so I only take half the daily dose and take the other half only if I REALLY need to. I do my best to tolerate my symptoms as best as I can without help.
May I ask what supplements you have taken that worked for you? God bless you. JoJo
Do you have migraines?
I'm sitting here sobbing. The doctors told me I was crazy because I told them my blood pressure shoots up to 2:30 over 180 when I stand up. They saw it happen but they said I just need to take blood pressure medication. Which, did nothing. I also think I have vEDS, So I'm terrified that my blood pressure shooting up that high is going to cause an aneurysm. I get my results this Monday morning from my connective tissue panel. THANK YOU SO MUCH for this video. Hyperadrenergic POTS describes what happens to me. Finally! I think you just gave me the answer after a decade of searching!!!!!!😭😭😭😭💕💕💕💕
I have EDS and POTS. I love what you are doing and giving everyone information and knowledge. Letting others know they are not alone. My resting heart rate stays around 100 All the time. The lowest it has been in 9 years was 94. I'm actually having surgery tomorrow. For chronic sinusitis (I know totally different ) but, going under anesthesia with EDS and everything else, I'm having pre-surgery anxiety. Thank you again I am now a new friend 🌹
Your explanation is excellent! no one can do it better in my opinion. I'm testing myself and the increase in hb is exactly 30, consistently. no change in blood pressure. you said don't diagnose yourself, but it fits..
Wowowow this was really helpful to understand. I’ve been on Midodrine for a couple years and it used to keep my heart rate down but now my heart rate is high all the time with big jumps up from sitting to standing and I didn’t know it was meant to control blood pressure more than heart rate.
This was so well explained & informative! And thanks for mentioning my video at the end 😊
Also wanted to add that midodrine can still be a really good option for people with POTS who don’t have orthostatic hypotension, but just generally have low blood pressure which isn’t affected by standing (or may even rise slightly on standing)! Especially if you don’t stand or walk much, it can definitely also be helpful in those cases!
TOTALLY TRUE!!
Thank you so so much for explaining at 5:05 about Orthostatic hypotension and POTS, I 100% believe I have both now, I’ve been diagnosed with Orthostatic Hypotension about 2 years ago and I’ve been on Midodrine but every time I stand up my heart rate shoots up in between 110-125 even tho the midodrine helps to not have my blood pressure go down. I see my cardiologist tomorrow morning so I will be mentioning POTS to him
Tested myself
Lying: 71
Standing up: 123
I think I found out why I can’t exercise
I found a girl who was a contortionist and burlesque dancer who had EDS, and now I follow probably every EDS channel ever.
Thank you for the informational video! (I realize I am a few years late to when this was posted, but I've been looking into POTS recently.) I feel like something is wrong and am experiencing many if not all POTS symptoms, but my parents are convinced I'm lying (now I feel like I'm faking it). I'll continue to do research. Thank you again for this resource!
I bought a pulse monitor because of this video and the first time I tried this I “passed.” Very good to have this information for when I eventually see a doctor about my hypermobility. Thanks for this, Izzy, you’re the best
this video is years old so i doubt you'll see this comment but thank you for this video! i don't mean to dump here, but. i've been passing out and a whole lot of issues and hospitalizations and nobody knows what's going on with me and this video (which came on my tik tok? if i'm not wrong) i came here to look for info. i'll be sure to talk to my doctor about this because this really hits home. thank you so much for this video. it's super informative and it gave me so much clarity. i have an appointment soon and this gave me a lot of comfort.
Did anyone here start getting this after stopping blood pressure medication like beta blockers?
Laying down :65bpm
Stands up: 120bpm ( with 1 min of standing)
Lays back down: 51bpm
Stands up for longer than 15mins and I get woozy and light headedness.
Yes i did
Yes! Has it gone away for you yet?
@@sophiebramley9595 Yes, it's gone now. Took about 5 months to feel normal again. I took propranolol for anxiety and after stopping them I began having nasty withdrawal symptoms including Pots.
Thank you so much for this good news!!! I stopped in September and still have symptoms. It is improving but very slowly. So glad this went for you - fingers crossed the same for me. I took propranolol for anxiety too! Never again, worst drug ever
@@wisdombright9821 sorry i didn’t tag you, see reply above
Thank you so much! I believe that my daughter has some type of dysautonomia but I’m having a hard time being referred to a specialist. Drs just keep telling her that it’s psychological because she doesn’t faint every time she stands up or it happens several minutes after standing. You give me hope that there are Doctors who understand. Her heart rate drops to the 50’s and then shoots up to about 117 after that she has syncope. Thank you for sharing this info that not all POTS are exactly the same. Most drs don’t seem to know this
Honestly very helpful
I love your channel :)
In someone who has just orthostatic hypotension, would their heart rate jump as much as someone with POTS? My heart rate laying or sitting tends to be between 85 and 100 (lower earlier in the day and rising as the day progresses) but when I stand or take a hot shower it can shoot between 130 and 150. I plan on asking for a tilt table test (or a simulated one) when I get to a point of being able to access healthcare, which hopefully will be by the New Year, along with beginning to further look into my hypermobility-related pain with medical doctors.
So far the only professional input I've gotten is from chiropractors and sports-medicine massage therapists (I tend to be able to access that kind of care more easily because their prices are consistent, there's no surprise procedures so even without health insurance I can plan for the cost ahead of time, and the work they do on me relieves pain even temporarily so it feels productive to me, and they can see/feel everything I'm talking about as far as joints being out of place or muscles spasming so I never feel dismissed or invalidated by them). My massage therapist once joked, "You're always falling apart, aren't you? What you need is a live-in chiropractor and massage therapist to work on you around the clock and keep you together." My chiros and massage therapist have said that one of my biggest problems is hypermobile joints and my muscles being tense and spasmatic from doing so much work to hold them in place and was instructed to avoid fully or hyper-extending my joints and doing things like yoga).
The first time I had my back adjusted I felt so wonderful and the next day I was back in agonizing pain. The chiropractor said that my tense muscles pulled my spine back into the wrong place again. I've been dealing with pains, stomach issues, breathing problems, and general weakness my whole life (the arm getting tired quickly when raising your hand issue is soo relatable). The last few days I've been icing my shoulders, back, and sometimes my ribs constantly. Oh, my ribs! One time my massage therapist and I were hanging out (we share a social circle) and I got hit with a sudden, sharp, consistent pain in my side. He checked my ribs and told me I had a couple out of place. I've kind of learned to just wait until they slip back into place or sometimes if I breathe and expand my abdomen just right I'll feel it slip back in. Last week my shoulder just gave out on me - my collarbone on that side was angled downwards and the best I could do was consciously use the muscle between my spine and shoulder blade to hold my shoulder in kind of the right place. It was exhausting.
Sorry, long comment! I just resonate so much with many of your experiences. I hope I can find doctors who take me seriously! (Do you think letters from my massage therapist and chiropractor discussing my hypermobility with xrays from my chiropractor would be helpful in being taken seriously by doctors?)
I am the 1,000th like! I have had an EDS diagnosis for about 2 years now, and I just found this phenomenal physical therapist who isn't just an expert, he HAS it. His whole FAMILY has it! So I went from knowing nothing and having no one who could first hand tell me what my future could look like. Now I have about a dozen people worth of information through him and he's helping me figure out what things I could have attached to the EDS, POTs potentially being one of them. Thank you for all the super useful information!!!!
Has anyone found any good support groups for either of those types of conditions?
Wow I have Sjogrens and Rheumatoid arthritis and fibromyalgia. And my heart rate sky rockets when I get up to 140 BPM and sometimes even higher and I pass out or get extremely lightheaded. I have to see cardiologist kinda nervous but this video helped a lot !
Thanks for the video. No EDS, but 9 weeks ago I had a hiatal hernia repair and a Nissen Fundoplication stomach wrap surgery to stop acid reflux. I'm noticing I'm more susceptible to dehydration. A bunch of nights in a row I notice my pulse takes off despite being on beta blockers and I feel fatigued.
Well done 💜
Oh my God I have the stuff since I was a teenager everything I stand up or walk I feel so dizzy shaking blurred vision thank you for the information
thank you for the info
Incredibly well explained. Looking into this condition as I’m into my third year of Long Covid and all the disruption to my heart rate and blood pressure.
Oi I'm 2 yrs in, I'm also thinking along these lines........ Doc put me on desprin 300mg/day and In 2 days I lost that pain in the middle of chest that was there for months!!
Another great video Izzy! Actually I learned something today from your video... 🤔I have no idea which kind of POTs I have ( must be hypovalemic since I get saline infusion) I’ll have to ask at my next appt. it’s a good thing to know!
Xo💜
I've been trying to get my mum to get me to a doctor about pots (I'm 13) and she let me do the stand and sit so I layed down and stood up like you describe, and I went from 83bpm to 138bpm and my blood pressure dropped, and she said she'll look into it is thanks for this video so I can convince her to get me to a doctor :)
I just want you to know I appreciate all the videos you make because this one helped me finally reach my POTS diagnosis by providing my own data over a period of time to my doctor. You’re the best!!!
Me: I’m probably just being dramatic My heartrate: 80->127 ... def getting tested and encouraging my mom to do the same. She has extra chairs around the house for bracing herself when she gets dizzy from standing up too fast
Thanks for sharing
I haven't been diagnosed yet, but my symptoms have been worsening over past 6-7 years (after 35). I have had anxiety dx for 20 yrs. Just did my standing vs lay down BPM... 115 vs 70. Definitely something I can now explore with my doctor. Thank you 💜
So? What told ur doc?
How are you now?
Pls reply🙏
Very informative video 👍
I wanted to thank you for making this video! It made it very easy for me to test myself at home. My bpm went from 60 to 130! I will be talking to my doctor Monday
Your regular bpm sounds low- How old are you? 😅 My lowest was 60< But thats a big difference!
Mines 60 to 150
YeP. I have a Service Dog that helps me with managing and alerting to it.
Stairs and any time going up and down them, trying to move and rotate body as your moving after getting up and having or had a mild to severe episode, the more I move the worse it gets or pushes me into another episode.
I believe mine is the hyper type, I finally got a decent primary and she's just started ordering my labwork, but after that I'm requesting a tilt test.
I seem to be slightly under the needed for diagnosis. I have CFS which is a common comorbidity. One of the first symptoms I had was the dizziness when I stand or sit up.
Very comprehensive overview because I often find it difficult to explain. This vlog should be shared with everyone including doctors. Do you ever end up in ER with your POTS?
Your explanation is fantastic. Thank you - I've been doing the NASA Tilt test - I'm only symptomatic of POTS in the morning, is this quite common?
New subscriber here thank you for the very informative video! Stay safe stay healthy 🤙
just wanted to say I got your sweatshirt in the mail today and it's awesome!
omg I'm so glad to hear!
I've got POTS/Dysautonomia at 37 years old. Had 3 ER visits starting in December 2019. Healthy, fit, muscular and not overweight male. I do have sleep apnea (64 apneas/hour), but I've been under BiPap treatment for 2 months and it doesn't appear to be related to that. My numbers are down to 1 event per hour. Went to a gastroenterologist and had a swollen stomach lining for known reason. Rapid heartbeat and blood pressure going up and down. I don't get that big of a change in heart rate from lying down to standing, though. My blood pressure does go up and down. Some nights at 4am it can be like 155/125 blood pressure and then a couple of hours later be 118/75. When standing during the day, it is usually more so 105/70. When I mowed the lawn for 10 minutes at moderate speed, my heart rate hit about 160-170. Resting heart rate 5 minuets afterwards (while sitting) was 150. I've seen an endocrinologist. No thyroid issues. Sleep doc says it isn't his field. Primary care doc says Dysautonomia/POTS. I don't faint, I just get dizzy, brain fog and toss and turn a ridiculous amount of times all night. I definitely don't have EDS because I'm not very flexible. Got a tilt table test coming up next month and also a visit to an electrophysiologist and a sleep neurologist. My arms/legs move an inch or two during sleep and no movement disorders were detected during 3 in-lab sleep studies. Can't focus enough to drive and 24/7 malaise for no known reason. I only feel decent when lying down. Sleep is not restorative.
This video was so helpful to me! I recently got diagnosed with POTS. I’m not sure if it’s 100% accurate so I’m still going to other doctors. My heart rate and my bloops pressure both increase. I was told to drink 2 liters of water an take salt tablets. But one of my symptoms is a lot of headaches, which might be from the hypertension. And drinking water can increase blood pressure so I’m not sure if it’s the best treatment. If my doctor can specify I have hyperadrenergic POTS maybe I can get a treatment plan that will finally relieve my headaches❤️
87 to 132. Yikes. I can't believe I'm only first trying this today when I've had a pulse oximeter and suspected POTS for years (with doctors never offering to test, naturally). I think I'm going to be much pushier about the test, now. I'm also nauseated and absolutely exhausted after standing for that long. I probably should have sat down as soon as I started to feel lightheaded, but that was less than a minute in and I wanted to track the whole time...
I definitely know something is up, but this gave me something to go to my doctor with - thank you! Resting was 90 - went up to 121 within a minute of staging - dropped back to 85 as soon as a laid down.
What was your outcome. I have appointment soon. Mine is usually around 85. Stand up and it goes to 125 ish.
Thank you so much for the videos. Super super informative. I hope this finds you well. If you ever get a moment, just wanted to hear any thoughts on my wifes poor man tilt table results. Not asking any diagnosis, just thoughts and opinions.
Lying down
BP 129 - 78 - Pulse 59
Stand up
3 minutes - BP 138- 97 - Pulse 95
5 minutes - BP 111- 86 - Pulse 109
10 minutes - BP 112 - 83 - Pulse 127
Based on her results, in making a guess. Id say she has both. They said if pulse goes up and not much change in BP, its Pots. If the BP drops and pulse goes up then thats Orthostatic Hypotension. But the confusing part is they say the symptoms of Orthostatic only lasts a few minutes. Her symptoms have lasted 3 months. It looks like at the 10 minute mark her diastolic starting to get closer to normal but her pulse continued to rise.
Any feedback is appreciated.
thanks