Written by Dysautonomia SOS's President, Claire Martin
One of the goals of Dysautonomia SOS is to help patients find any underlying causes of their POTS, and encourage them (and their physician) to rule out any life threatening and dangerous potential causes of POTS. Here is the basic explanation of the "Find Your Cause" campaign:
Even though POTS is not fatal, it is absolutely necessary to attempt to find out what is causing your POTS. Not only to rule out the dangerous and potentially life threatening conditions, but to avoid the medication merry-go-round, and tailor treatment to the individual issues of the patient based on what the root cause of the POTS symptoms are.
As patients (and the caregivers that see how sick we can be on a day to day basis), we know how big of a deal POTS is. We know what a struggle daily life can be, how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.
So why does it seem that so many in the medical profession view POTS as mild, easily dealt with, and why is it so unheard of?
Here are some of the issues:
1. POTS is commonly misunderstood, by both patients and medical professionals. It is also relatively unknown, but it is not rare. All the major research journal articles cite POTS as being as prevalent as affecting 1 in 100 teenagers, and 500,00-1 million people in the USA. "Rare" is classified by the NIH as less than 200,000 people being affected. 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.
2. POTS is a spectrum. It ranges in severity. 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. They learn to cope, find treatment that lessens their symptoms, and some are reported to spontaneously recover. 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 are many teens and patients who "outgrow" POTS according to the major research centers, such as Vanderbilt University and The Mayo Clinic. There are no solid long term studies with numbers and data regarding this, so the percentages are unknown. Even if a person has "mild" POTS, it may get worse in the future, and if the cause is never found, treatment may be more difficult. A patient may have had an underlying condition that was unknown, and may be progressive. The sooner these progressive conditions are treated, in general, the better the outcome for the patient.
3. You are responsible (or your parent/caregiver is if you are a dependent) for your own health and advocating for your treatment. 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. Having a chronic illness is exhausting, 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 to your underlying cause, or at the least rule out the life threatening cardiac issues, and treatment is not working for you, consider getting a second (or third!) opinion.
4. You can get better, and most do! With an estimated number of POTS patients of between 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. There is hope. There are caring physicians out there. You can find support, starting here, and most likely treatment that will help you feel better. The current statistic used is 80% see symptoms abate within 2-5 years of diagnosis. That is a large percentage!
Learn more about finding your POTS cause HERE(coming soon!).
POTS: Finding Your Cause
