FIND YOUR POTS CAUSE

**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:

WRONG!

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: ___________________________________________________________________________

• Original Article, With starting list of possible POTS causes
• What is POTS?  Really, What Is It???
• Fainting, The Final Frontier (and Neurally Mediated Syncope)
• MCAD and Mastocytosis (The Wide World of Mast Cells) 
• FIND YOUR POTS CAUSE: Mitochondrial Disease 101 (Guest Post by Hannah!)