POTS Diagnostic Criteria Test | Three Types of POTS

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.

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:
MORE INFO ABOUT POTS:
MORE INFO ABOUT GASTROPARESIS:
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:

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#pots #posturalorthostatictachyardiasyndrome #tachycardia

[IzzyKDNA]

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[monicaross]

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.

[parkerm]

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 :)

[MK-agirlwhosmissunderstood]

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!

[cristinaalvarez]

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.

[AGMaples]

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!

[belajibben]

I stand up too fast all the time forgetting I have POTS and have to sit down quickly before the room goes black.

[waterywanderer]

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.

[jamesbendle]

All Drs SHOULD BE LIKE THIS woman. clear advice that makes sense

[sherriknight-cloud]

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.

[RoseVampireGirl]

As a fellow POTS patient the tilt table test was the worst thing I have ever done. This is very informative.

[chasingrainbowschannel]

Really well done video! Drs easily dismiss pots and gp's dont seem to know much about it. I tested my daughter for this and took video of doing so since her doctor dismissed the idea. I came in with proof and "asked" for a referral to an Electrophysiologist. It is horrible how doctors can gaslight their pateients and leave them feeling crazy and so ill. I have orthostatic hypotension and it may be secondary as i think i also have Parkinson’s disease. Ive gone through years of doctors making me feel crazy...i did not handle it well when they did that to my daughter. No one should have to be treated badly by a doctor. They should be trusted and safe people, especially when sharing pain and suffering. Hope everyone watching finds a good doctor!❤❤❤❤❤

[penelopepolinsneemeyer]

Thanks for this Izzy. It means I can talk to my GP about this without them putting things down to my “age” (I’m

[immortalvelociraptor]

I filmed a video of my heart rate for a year and uploaded it YouTube. I actually got diagnosed with POTS this month cause I had footage to show my doctor so he would send me to a specialist.

[hquinn]

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. ❤

[summero]

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.

[DeltaNorington]

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.

[TLynch-pfek]

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!

[zbcrazy]

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.

[MultiKswift]

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.