Dysautonomia Resources
Dysautonomia is a large umbrella term encompassing a wide variety of issues in which our bodies fail to properly regulate what we think of as “automatic” systems: blood pressure, heart rate, temperature, digestion, breathing, more. Healthy folks don’t usually have to think about these things, they just go on about their lives. But folks with connective tissue disorders of all kinds (EDS, Loeys-Dietz, OI, Marfans, HSD, more) all seem to experience one or more forms of dysautonomia. And sometimes from more than one driver.
Although technically dysautonomia has several causes besides connective tissue diseases and disorders (including Mast Cell Activation Diseases and disorders), I personally consider the form called POTS in the Ehlers-Danlos Syndrome community to be the likely “love-child” of weak connective tissues and mad mast cell mediators running rampant in our systems. (POTS is a subset of dysautonomia to be clear. There are several others, see links below.)
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.
Then, impinged neurology (Chiari, CCI) and or incomplete ennervation (demyelinated nerves, incomplete nerves) can lend to additional trouble that does not act like POTS at all. (Sudden BP spikes or drops not driven by MCAS, also oxygen problems.) Some of the more rare types of EDS can lend to this – especially “classic like EDS”, a.k.a. “clEDS”. (Not the same as Classical EDS, cEDS, though it resembles it at first glance, whence its name.) I know some who feel very little/no pain, and thus injure more dangerously. But also can’t regulate their BP and oxygen properly either from this. It is often labeled “Familial Dysautonomia“* and can flare up after a bad viral illness in some.
* This does not mean you have POTS running in your family. it is a distinct, different form of dysautonomia involving incomplete or insufficient ennervation of the body. And, you can have both POTS and FD. I know someone who does.
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 mast cell 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)
- POTS Specialist Resources
- 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
- Managing POTS Through Exercise
- What’s to know about Dysautonomia?
- 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
- Autoimmunity in postural orthostatic tachycardia syndrome: Current understanding 2018 Vernino, Stiles
- Postural Tachycardia Syndrome is Not Caused by Deconditioning 2016 Blitshteyn, Fries
- Familial Dysautonomia, aka Riley-Day Syndrome – a rare inherited syndrome causing insufficient innervation of the body
When POTS isn’t POTS consider CSF Leaks:
- Lisa Jamieson’s story from 2014
- 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
Misc Related Articles
- Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment 2018 Weinstock, Brook, Myers et al
- Understanding POTS and its Autoimmune Connection – Dr. Blair Grubb via goop 2019
- Postural tachycardia syndrome and other forms of orthostatic intolerance in Ehlers-Danlos syndrome. 2018 Roma, Marden De Wandele et al
- Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders 2005 Shibao, Arzubiaga, Roberts II et al
- Postural orthostatic tachycardia syndrome and the possible role of mast cell activation 2018 Doherty, White UCSD
- Dysautonomia International Conference pt III: The Autoimmunity Revolution in POTS 2018 Cort Johnson
- Postural Orthostatic Tachycardia Syndrome: Prevalence, Pathophysiology and Management 2018 Zadourian, A et al
- Cardiovascular autonomic dysfunction in Ehlers-Danlos Syndrome hypermobility type – Hakim, Callaghan, Wandele et al 2017
- Angiotensin II Type I Autoreceptor Antibodies in Postural Orthostatic Tachycardia Syndrome – 2018 Yu, Li, Murphy et al
- 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
- Video: Norepinephrine in health & disease – Dr. David Goldstein via Dysautonomia International 2015
- POTS and Dysautonomia: Sleeping with the Enemy Part I – Dr. Sanjay Gupta York Cardiology 2017
- Principles of Autonomic Medicine by Dr. David Goldstein 2015 (free eBook)
- SaltStick Vitassium Capsules – help with hydration for POTS patients (They come in Chews also – look around their website for those too.)
- Find Dr. David S Goldstein’s free PDF of his large book on Autonomic Medicine under the Publications tab on that page under the link.
Videos
- Orthostatic Intolerance in EDS/HSD – 2018 Rowe, Peter, MD
- Norepinephrine in health & disease – Dr. David Goldstein via Dysautonomia International 2015
Last updated August 19, 2024
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