POTS (Postural Orthostatic Tachycardia Syndrome)

An overview of postural orthostatic tachycardia syndrome (a.k.a. POTS).

This video is part of Strong Medicine's Underappreciated Diseases series. It is meant for educational purposes only, and is not intended to direct the diagnosis or management of any specific patient. I do not claim any notable expertise in this specific disease, and unfortunately, I am unable to provide individualized medical advice in response to comments posted here.

#POTS #PosturalOrthostaticTachycardiaSyndrome #AutonomicDisorders

[hinatauzmaki]

I (22) just got diagnosed with POTS yesterday, this video helped me learn more about it thanks. I was getting upset when my doctors would think it was just my anxiety, I felt like no one was listening to me. After I changed my doctor one time, I was able to get the help I needed.

[autentyk]

This should have a million views.
Many doctors really do think they know it all.

[LaneySweet]

I am a 31 year old woman who is just realizing that I have POTS. These symptoms have been blown over by every doctor to the point where I just accepted them and mask through. Blacking out, feeling dizzy, becoming weak while having to balance yourself against an object or wall every time you stand is NOT normal. I have to sit on top of my counter when I cook because I can’t stand the entire time. I’ve been suffering for over a decade with this. I also have Raynauds.

[amberstails]

The annoyance of people thinking you are lazy for wanting to sit because you are young is infuriating. Life is pain.

Thanks for the video by the way, I have been searching for information on this for a while and I found your video. Thank you.

[iRallHeart]

After 24 years, I finally got my diagnosis!!! Thank you for doing this video, more doctors need to know about this condition instead of gaslighting patients

[MzGumby]

It's so difficult to exercise without feeling like you're going to faint. My resting HR will be 89 to 101. When I stand it can jump up to 120 to 140. Sometimes 160. Sometimes my HR will drop to 70, and I'll get extremely tired, and I pass out in my bed. I was diagnosed with tachycardia in my early twenties, and it sucks that medical staff will say it's just my anxiety. I wish healthcare workers weren't so dismissive when it comes to what a patient is experiencing. I always try to get a second opinion, because some doctors will lead you astray.

[bxrbiee.ellwvy]

I got diagnosed a week ago and I am 14. My resting heart rate is 90-120 and when I stand it spikes up to about 130-200. I always feel dizzy after getting up and when I feel better when sitting down no one beloved I was ill. My mum took me to hospital last week as it started getting serious and then we found out I had PoTS. I am thankful that it has finally been registered as an actual condition and people can get help now!

[nope-notme]

Great video!!! I love how descriptive it is. I've been having symptoms of POTS for 4 years and my doctors kept gaslighting me into thinking it was anxiety. I did my own research and persisted and just now finally got in to see a cardiologist to get a tilt table test. I hope one day they teach about this condition in medical schools and programs. Especially since it is becoming so common now.

[jaimemacintyre]

As someone who was just diagnosed after 27 years I love seeing these, I need to know what’s happening inside my body and most doctors haven’t been able to tell me. Thank you. 💖

[Aubreelbenson]

I (20) just got diagnosed with this today, after a few years now of dealing with it and going to many doctors for other illnesses and to find out what’s all wrong with me. But this helped a lot to listen and get better knowledge of it. It’s been a wild ride. ❤

[andresdelavega]

Everytime you mention "Strong Medicine" I immediately smile and feel proud of having a professor like you at anytime

[DandyBeingTandi]

I've had POTS for 28 years. And it is miserable. I get so sick of getting IV's, forcing salt and fluids, passing out weekly and headaches. Please listen to your patients! 💖

[jeffb.]

This underappreciated diseases series is pure gold!

[sarahdickson]

Thank you so much for this ACCURATE and informative video. As someone with pots I appreciate you spreading awareness!

[emilywilson]

I was only diagnosed with POTS because the hospital I was in wanted me to do sit/stand BP tests to check my BP nothing much happened to my BP but upon standing every single time my HR would rise 30-50bpm, I always told drs that I felt dizzy standing up and I could see weird stars in the shower and on really hot days but I continuously got iron tested and my iron was fine everytime, thank goodness for that sit/Stand test otherwise it would have gone unnoticed and undiagnosed. Now I know how to manage it I can live life a little better even though I’ve had a few fainting spells that have been pretty dangerous. I wish more people and more medical professionals knew about POTS

[whitneyg.]

I am a 31 year old mother of two that was diagnosed at the mayo with POTS over a year ago. I became sick with these symptoms two days after going on a high estrogen birth control pill. I am very disappointed with the lack of understanding the mayo has with what is causing this condition. As soon as I was stamped with the condition of POTS the mayo was DONE with me, they do not take anytime to try and figure out each individual cause. The biggest thing I have noticed since developing this condition is that it is happening mostly to women and often times after they start puberty or when they have a pregnancy and their hormones change. A lot of women had prolonged gut issues before developing pots. A lot women I talked to developed POTS after a vaccine, birth control, or virus. What is going on with their immune system? When I was at the mayo I was not very symptomatic until I had an internal ultrasound which caused two cysts to burst on my ovaries. I was then diagnosed as possible pcos. The next morning my heart was racing like crazy, I was nauseated, dizzy etc and they put me on the tilt table. I was diagnosed with pots by a faster heart rate but not by blood pressure shift. I asked for further testing to figure out the cause so that we could possibly treat the problem and fix me.
They did not care to further help me. They said no further testing necessary.

Since then I have been through a variety of testing with different medical doctors that I found locally and I found a functional medicine doctor. We discovered issues with methylation and some nutritional deficiencies, low ferritin (iron storage) high ige levels, intestinal metaplasia/leaky gut, and low hormones/low cortisol. I ended up with a hysterectomy because of uncontrolled heavy bleeding and since then my heart rate is more regulated. I could have avoided the hysterectomy if my issues had been found sooner and better controller. I still have the other symptoms but my Ige is so high we are looking into the cause and if I’m having some type of mast cell activation response to things that is causing the pots symptoms. I also am working with a functional neurologist that used to work at an institute in MN for treating pots patients by finding the root cause. We believe that my pots is being caused by the high ige levels, low cortisol, hormone/gut issues and are attempting to find the underlying cause to the high IGE levels now. Everything is connected within the body. If you cannot properly methylate you don’t detox like the average person. When the body becomes overtaxed it affects other parts in the body, gut, hormones, ability to absorb nutrients. I am still sick but am still fighting. Perhaps we need to get away from the textbook definition concerning what is normal or not. The ranges for hormones and ferritin and other nutritional levels are very broad. Every human is different. One level may be normal for one but not the other. The first year of being sick all of the medical doctors said my hormones were normal when the functional side said they were not. I had all of the symptoms of a hormone imbalance. Medical doctors are what are causing anxiety and ptsd in pots patients, not the symptoms, because most of them are constantly undermining you. The first year of my illness I was told that I had a panic disorder..even though I had no history of anxiety before and no reason to develop it. I was told my gut issues were mentally induced and there was nothing wrong..while I continued to have bleeding in my stools and severe stomach pain and bloating and passing out during my periods. When I went to the er the only thing they looked at was hemoglobin and since that was in range “everything looks normal” I was told I needed to see a psychiatric doctor and the mayo would find nothing..well I was diagnosed with pots and pcos at the mayo. The last endocrinologist I spoke with basically told me maybe the medical field just doesn’t understand my condition enough yet to help me..well then work with the functional medicine doctors! Learn from each other! The best doctors I have had were ones that were willing to work with the “quacks”
It’s very upsetting and no one deserves to live this way, be unheard, and end up worse because of trauma and ptsd.

The mayo pretends like they want to get you better but no one is actually following stories like mine they just send you home with no suggestions other than symptoms management abs living with this horrible condition.

If we can step outside of the box and work together better and not be laughed at when you have a suggestion from the functional medicine side that would be great. I know that I would be better a long time ago if I could just find a doctor that can think outside the box and textbook and be willing to work together with others ideas.

I am apart of groups where people recovered from pots by finding their underlying cause. What I have found out is that there are many different causes.
Ferritin deficiency
Candida overgrowth
Sibo
Hormone imbalances (treated by functional medicine doctors)
B12 deficiency that goes unnoticed because of mtfhr methylation disorder
Vitamin D deficiency
Heavy metal toxicity
Mold sickness
Mast cell activation syndrome
Parasite
Lymes disease that was false negative
Epstein Barr virus/weakened immune system
Adrenal or pituitary disorder
Injury to the neck or spine

Maybe this sounds laughable but these people have gotten better.

[Potent]

I am a grown man and I have been dealing with so many of these symptoms. I was treated for anxiety by one doctor, another wanted to treat me for heart related issues and yet all my test come back great. I am going to suggest this to my doctor as I am scheduled to have a Tilt-test.

[sundarrajan]

Best lecture on POTS.
THE first thing doctors should do is to suspect the diagnosis of POTS.
"A diagnosis never considered is never made."__WILLIAM OSLER. Thanks for the video.

[cornelbacauanu]

Great info for a less understood syndrome. Thank you for the effort. The Ddx and the treatment are better explained than the textbook.

[aontaistealai]

That was an insanely informative, concise, engaging presentation. Love it. Thank you!