Although technically dysautonomia has several causes besides connective tissue diseases and disorders (including Mast Cell Activation Diseases and disorders), I personally consider POTS in the Ehlers-Danlos Syndrome community to be the “love-child” of weak connective tissues and mad mast cell mediators running rampant in our systems.
Both of these conditions lend much too readily to hypovolemia (low blood volume) from a variety of reasons: stretchy bladders making us pee out more than we take in, impinged nerves and tethered cord lending to incontinence, MCAD reactions adding to frequent urination (and increased bladder volume), MCAD causing vaso-dilation and third-spacing thus lowering blood volume further, to name a few. I.e, we “leak” easily in many ways.
Toss in weak valves and flaccid veins thanks to weak connective tissues, and it’s just not a surprise to find POTS so highly comorbid in our community. Not 1:1 (1 to 1) no, but definitely some form of dysautonomia at the very least. Also, your condition can vary, flaring and easing up from a variety of causes including stress, trauma, viral (or other) serious illness, MCAD, and hormone changes especially in women. (Progesterone makes you more lax, and both estrogen and progesterone are MCD triggers it turns out alas.) Toss in highly comorbid (but technically unrelated) auto-immune disease (and possible causes) and POTS just is no longer a surprise any more.
Please know some will have a Hyperadrenergic variant that requires special treatment different from the “regular” variety. And, technically and apparently some people can actually just have POTS and other forms of dysautonomia in the absence of a connective tissue disorder, though I’ve yet to meet any. Just allowing for this possibility and understanding.
And like all of our issues, it is also quite tricky to diagnose, and yet another “heavy lift” as doctors have only been told about the grossest signs of the rarest types, and will often dismiss milder cases as “just anxiety” or depression or hypochondria. You may end up seeing either a cardiologist, or a neurologist, or both along the way. Please trust your gut and body and continue playing gently but firmly squeaky wheel if you suspect the condition. You deserve the improved quality of life to be had from proper treatment for this very disabling condition. And there is help and hope for it, but like everything we enjoy, think “marathon” not sprint.
Here are some resources to help learn more:
POTS and Dysautonomia Resources
- Standing Up to POTS
- Dysautonomia International
- Dysautonomia Support Network
- Dysautonomia Youth Network of America (DynaInc, formerly DynaKids.org)
- Hyperadrenergic POTS (HyperPOTS)
- Dysautonomia Youth Network of America (DYNA Inc.)
- Dysautonomia Information Network (DINET)
- Dysautonomia, POTS, Ehlers-Danlos and Joint Hypermobility – Ross Hauser, MD
- Recognizing Postural Orthostatic Tachycardia Syndrome JAAPA 2016
- The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? Dr. Ian Carroll, Stanford 2016 [NB not all POTS may actually be POTS – JG]
- Ehlers-Danlos, POTS and a headache cured – via American Academy of Pain Medicine
- Simple Way to Assess Orthostatic Intolerance (via NASA) (another “poor man’s tilt table test” of sorts)
- Cardiac responses to exercise distinguish postural orthostatic tachycardia variants 2016, Pianosi, Schroeder et al
Misc related articles
- Cardiovascular autonomic dysfunction in Ehlers-Danlos Syndrome hypermobility type – Hakim, Callaghan, Wandele et al 2017
- Hemodynamic profile and heart rate variability in hyperadrenergic versus non-hyperadrenergic postural orthostatic tachycardia syndrome – Journal of Clinical Neurophysiology 2015 Luka Crnošija, Magdalena Krbot Skorić et al
- Fainting Disorder Mechanism Identified – March 2017 Neuroscience News
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