**This is an ongoing project.  I will be adding posts with links to information on the conditions associated with and that can cause POTS. 

Why finding your POTS cause is important:

Many of us hear by our doctors that POTS is "no big deal." 

Or they just plain have no clue what it is.  

Or, "you just have POTS."

Why do they think this?  Why don't they know what it is?  If an estimated million people have it, and even more have dysautonomia in some form, why don't they know?

As  patients (and hopefully the caregivers that see how sick we can be on a day to day basis), we know how big of a deal it is.  We know what a struggle POTS is, and how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.   So why is this the view by so many in the medical profession, and why is it so unheard of?   I have been contemplating and compiling this list for a while now, and in light of the people we have lost recently in the POTS community, I thought this may be useful for those of us trying to find the cause of our POTS.  Also to explore why it is a big deal, even if POTS per say will not kill you, and why, in my opinion, it is absolutely necessary to find out what is causing your POTS.  Not only to rule out the really dangerous stuff, but to avoid the medication merry-go-round, as I like to call it.     

Here are some of the issues:

1. POTS is very misunderstood, by both patients and medical professionals.  It is also relatively unknown, but it is not rare.  There is a major identity crisis going on with POTS, and it can be confusing and ever changing, with developing definitions that vary from doctor to doctor.  The advances made in the autonomic studies field over the last decade are pretty extensive and amazing, and frankly pretty hard to keep up with.  From a review of the medical journal literature, it seems there is a lot of misunderstanding and even disagreement on what exactly POTS is, what causes it, and the many theories and proposed subtypes of POTS.

How that information is passed on to the medical profession as a whole (or is not passed on, as many have not even heard of it) I am not yet aware of.  Is it being taught in medical school and courses that doctors take to renew/update their licenses?  We sure don't see any brochures in doctors offices, like you do with many other conditions.  I'm assuming only doctors in the field that these journal articles are being published in are reading them regularly, so that narrows the audience quite a bit. Autonomic journals, neurology journals, and cardiology journals.  And an occasional pediatric journal. That's not a lot.  So when a patient goes to the ER or to their primary care MD or Internist, they are most likely not reading these regularly, and may not have heard of POTS, or are basing their knowledge on a limited review of literature.

2. POTS is a spectrum.  I hear many people online express their disbelief that there are people actively living with POTS.   The reality is that there are many, many people with POTS who lead fairly normal lives, or have waxing and waning symptoms that come and go.  This does not mean it is easy to live with, or that it can not be disabling, or is "no big deal".  There are an estimated 25% of people with POTS that live with the same quality of life as those with COPD and congestive heart failure.  There have even been recent deaths of very young people with POTS in the online community.  All of them had conditions beyond POTS, and died of those complications, not from POTS per say, as POTS is a collection of symptoms - not a disease.  But POTS is a warning sign that something is wrong - there is always something causing POTS, and I firmly believe that YOU HAVE TO FIND OUT YOUR CAUSE.

Even if you have mild POTS, it may get worse in the future (like me!), and if you never found the cause, treatment will be more difficult (like me!), or you may have had an underlying condition that you did not know of (like me!).  If a doctor or family member, or anyone for that matter, tries to blow off your POTS as no big deal, I'm including information in this post on why it is, and feel free to print it, cut and paste, or do whatever with it to get started figuring out what else it going on with your health that is causing your POTS - it is free for patients to  use as you see fit (organizations, contact me if you want to use anything on here).

That's me again, I swear!
3.  You are responsible (or your parent is if you are a dependent) for your own health and advocating for your treatment.  I really do know how hard this is, after a decade of chasing down doctors.  Sometimes we may have to steer our doctors in the right direction, and have do our own research when finding what is causing our POTS.  You must take responsibility for your own treatment and care, or find an advocate who will for you if you are too sick, or just plain worn out.  It is OK to be worn out, this is an exhausting disease, and many of us have to fight through basic daily activities that others take for granted.  It can be overwhelming to have to keep fighting and fighting, especially when you know something is wrong and no one is listening.  But you have to keep fighting.  If a doctor refuses to help you dig deeper to better tailor your treatment - FIRE THEM.  They are not God, and they do not all have your best interest at heart.  Most do.  But do not let yourself be brushed off when you know something is wrong. You are a paying customer, and have to be your own advocate (parents of POTSies included!).  Have I said be your own advocate enough?  

4. You can get better, and most do.  When I was feeling well, I was not online in support groups - I was out living.  I found the support groups depressing, or felt guilty that others were so sick an I was able to drive my boat around and enjoy taking my son to playgroups and the park.  There ARE many POTSies with mild cases that they grow out of, or - like me - the symptoms come and go.  With an estimated number of POTSies of 500,000 - 1 million, the support groups would be A LOT bigger if everyone was as sick as those of us online actively seeking support.   Most people with POTS do get better (whatever that means), and see their symptoms abate to some degree.   I'm hoping the researchers start publishing studies with more statistics regarding the POTS population dynamics, recovery (or not) rates, and what conditions co-exist and cause POTS.  The statistics are tough, because how many are misdiagnosed or undiagnosed?   Point being, POTS is heterogeneous (mixed), we are all affected to a different degree, and many other issues complicating their health as well.  But many people (an estimated 80%) see symptoms abate.

Here are links to posts about the various topics relating to finding your cause and understanding POTS and other conditions: ___________________________________________________________________________


  1. I was recently diagnosed with pots but my bp and heart rate will elevate sometimes with just change in position ecspecially at night i would like to talk to anyone else who this its new to me and i have sooooo many symptoms its frustrating to me and my family and my doctors bc they are so uneducated i almost separated from my husband bc he kept saying it was in my head

  2. i need help with my dr. trying to understand this,,,i failed a tilt table test a few yrs. ago. . an my blood pressure is unstable again . same as then. i cant get my dr. to do anything for me. i asked him to repeat test. . they r thinking i am just having anxiety in which i am NOW... cause they are not listening to me.. movement takes my brain longer to get the message of what position i am in an my heart races over 100 an i get headache with standing up i am shaky ect. dizzy off balance ... sweats. not right... how can i get my dr. to listen to me...

  3. I was recently diagnosed with POTS. Was a college athlete playing basketball- 2 years out of college still involed in basketball and volleyball leagues. Broke my ankle and developed a blood clot- was bed ridden for a week- then rushed to the hospital for what they thought was a PE.. then they came to the conclusion I had POTS. It is very frustrating to go from being a college athlete being healthy or so i thought to now feeling like I am having a heart attack everytime I stand up to go to the bathroom.. I am praying I will get back to my active self who works out everyday from either medicine or from it going away..

  4. I’m not big on posting things on the internet, but am making an exception today.

    Last fall I was walking 4 miles every morning, working part time, going to school part time and a full time single mother of three awesome kids. Everything was going really well! On October 18th, 2012, I donated blood at a blood drive on my college campus. This was the first time I’ve ever donated and I was 36 years old. Immediately following the donation I became very ill. Less than a week later I was admitted to the hospital. After three days of tests, I was very fortunate to have a neurologist come see me who has a few other patients with POTS. He gave me the preliminary diagnosis. The description of symptoms were dead on!

    I resisted taking the tilt table test at first, but in February my symptoms intensified again. I was struggling to function. In March I had the test done. It confirmed the POTS diagnosis. One surprisingly troubling symptom of POTS has been the depression it brings. I have had many adversities in my life, but have never needed antidepressants. I take lots of vitamins and I exercise and that has always been enough to help keep me healthy physically and mentally. Until now. The POTS creates such an overwhelming depression I gave in when the doctor suggested that Zoloft might help with the symptoms. It seems to be helping. It keeps my mental state closer to where it normally would be and allows me to recognize and decide how to manage the other symptoms. Sometimes a Mt. Dew (for the caffeine) will take care of things and other times I just have to lie down. Being able to recognize that though, keeps me from getting so out of hand with the POTS that I can’t function at all. It has made a difference for me.

    My question is this… I did read a single line about trauma or blood loss causing POTS, but can not find anything further to substantiate that’s how mine started. I know, my family knows and close friends know, too. It was definitely the blood donation. Does anyone else have a similar experience or know any further documentation that supports POTS being caused by blood loss or donation?

    Thank you!

  5. About three months ago in June, I had anaphylactic allergic reaction. Days after that, I was rushed to the hospital several times due to difficulty breathing, chest pains, stomach pains, dizziness, the whole lot. Doctors assumed I had GERD (acid reflux.) So, they put me on a variety of pills to get rid of all of those problems. I was basically bedridden for about three months. Eventually, my heart started racing every time I stood up.

    Doctors ran a variety of tests on me and now think I have POTS. They told me to consume a lot of salt and stay hydrated. So far, from doing those things, my symptoms have improved immensely. I still have my bad days, but they aren't as bad as before. We don't know the underlying cause, but they think it's an effect from the anaphylatic reaction.

    I completed my first week of high school with minimal problems. I hope that soon all of the problems will be gone. This is melodramatic, but it has in a way ruined my life. I can't run anymore, before I used to run 3-5 days a week. My friends want me to go out with them, but I never feel up to it. I'm always tired. I'm depressed from the way I've been living. My POTS doesn't seem as bad as some cases, which I am so grateful for. I hope it continues to improve and I grow out of it quickly. I wish more doctors were educated on POTS.

    Good luck to all of you suffering from POTS. I can't wait to get back to my life. I can't wait until we all can get back to our lives and live normally.