Sunday, November 20, 2016

Fainting Isn't Always POTS!

So this will likely be a controversial post since I know a huge number of people in both Lyme and dysautonomia communities have been diagnosed with POTS.........

POTS stands for postural orthostatic tachycardia syndrome. By definition, it is a rise in heart rate of 30 bpm or a sustained heart rate of 120+ upon standing. It can cause a multitude of symptoms, including fainting; however, it's a benign condition. The need for treatment is to improve symptoms, not as a lifesaving measure. There is a TON of advocacy, fundraising and research going on specifically for POTS. It has definitely claimed the spotlight in the dysautonomia realm. One of the main advocacy associations for dysautonomia focuses almost exclusively on POTS. With limited advocacy efforts for other causes of fainting, including other disorders that fall under the dysautonomia umbrella term, many patients are unaware that there could be other more sinister causes behind their fainting episodes.

A few years ago I was diagnosed with POTS. I met criteria. Unfortunately, having that benign explanation/diagnosis on my chart led to a delay in diagnosing and treating another serious condition with similar symptoms that required a pacemaker: heart block. The physical symptoms are very similar to POTS, but since I had already demonstrated on ECG that I had tachycardia, it was difficult to get doctors to believe that I was sporadically changing to the opposite problem; severe bradycardia. Eventually they listened...............after I went into cardiac arrest. 

You may very well have POTS, and yes it is benign, but having POTS does not make you immune to developing other conditions and arrhythmia's. It's of vital importance to not settle on a diagnosis too easily when fainting is involved. Make sure before you attribute fainting to POTS (or Lyme), that you have caught your episodes on an ECG. You may need to request a 30 day heart monitor or an implanted loop recorder to do so. Also, do not assume that just treating Lyme is going to resolve everything when it comes to heart symptoms. I know we as Lyme patients are treated horribly by mainstream doctors, but when it comes to heart symptoms, a LLMD is not a specialist and should not be advising or attempting to treat those types of symptoms. Any responsible LLMD will immediately refer a patient with heart symptoms to a cardiologist or electrophysiologist. The latter is a better choice for people whom do not have structural heart disorders (most Lyme and dysautonomia patients fall into that category). Also, remember, you are not going to a cardiologist to treat Lyme or to discuss Lyme. Let your LLMD do that, and let your EP take care of their specialty.........your heart.

I routinely see posts of people who have fainted with warning signs of other disorders saying things like "my POTS is flaring today" (and their heart rate is in the 30's) or "I had that and it will go away with Lyme treatment." These types of statements always scare me. Fainting is nothing to mess around with. Depending on the underlying cause, it can be benign or life threatening, infrequent or constant. If you haven't caught a fainting episode on an ECG, don't assume it's JUST POTS or JUST LYME. There are many other things that could be going on. You could be having vtach, vfib, severe bradycardia, heart block, hypotension, etc.

Some warning signs that your fainting is not just POTS or Lyme are the following:

No warning symptoms in advance (more likely to be heart rhythm related).
Fainting while lying down
Low heart rate
Skipped or irregular feeling heartbeat
Severely low BP mid-episode
Confusion upon awakening
Falling

Please educate yourself about some of the other causes of fainting and POTS-like symptoms. It may just save your life!!

Heart Block
Sudden Cardiac Arrest
Neurocardiogenic Syncope
Orthostatic Hypotension 
Ventricular Tachycardia