As you’ve probably guessed by now, we can celebrate one or the other of our comorbities just about every month, including our main awareness month of May – which is also for Fibromyalgia awareness. (September was both Chronic Pain and Chiari Malformation Awareness Month – both very common in the EDS community). Well October is for one of our biggest comorbidities, Dystautonomia Awareness, which includes all the variations on a theme of fluctuating blood pressure (spikes and drops, syncope & pre-syncope) you can think of, including the best known Postural Orthostatic Tachycardia Syndrome or POTS, and Neurally Mediated Hypotension or NMH, among others. Roughly, dysautonomia is the dysregulation of your autonomic (think “automatic”,
it sounds) nervous system, the part of your system that keeps you breathing and your heart beating etc. during the night when you’re unconcious, and usually also during the day when you’re not thinking about it. Alas, we sometimes have to think about it!
Okay, I’m back after a seriously bad virus, and since getting to attend the free webinar October 9, 2014 sponsored by the EDNF and Dysautonomia International, 8 pm EDT (5 pm PDT). For those who missed it, you can hear the audio and see the slides here now. I’m actually glad I was too sick to post more prior to it, as it promptly answered several burning questions I’d had all along since discovering these comorbid conditions in 2012. Especially whether someone can experience more than one “type” or variation on the theme of POTS, and whether you always had to pass out or not (you don’t, even if many do.) Though people will tend to fall into one or another “camp” (low BP with pre-syncope or syncope vs hyperadrenergic), Dr. Raj seemd to indicate it’s not always so cut and dried, which matches my experience.
Further, it is not defined as just people with drops in blood pressure that induce tachycardia (fast heart beat/flutter), but POTS patients will always show a significant increase in heart rate (heart beat “speed”) of greater than 30 beats per minute in adults (40 in children under 18) within 10 minutes of becoming upright (standing), especially from a supine (lying) position. Some will have tachycardia even without a drop in blood pressure. And blood pressure can vary both between patients, and in the same patient. (Mine sure does, though I tend to run low on average and really low on rare occasions now, I can an do occasionally spike quite high under stress.) The hyperadrenergic folks tend to spike a high heart rate which then stays high more than others. This may be due to issues with clearing norepinephrine in our bodies.
There is no single cause of POTS either. It seems to be the outcome of a multitude of genetic and environmental factors resulting in this dysregulation of the cardiac system with plenty of attendant issues. (Lightheadedness, nausea, poor sleep, more). Like EDS and MCAD, it is also as indvidual as fingerprints albeit with some common themes. As I’ve said elsewhere, we put the “syn” in “syndrome”, and some of our syndromes (EDS) have syndromes of their own! And remember, POTS is just one subset of the larger realm of Dysautonomia, which can include poor temperature regulation, GI dysmotility (slow – or super fast – stomach emptying, early satiety, gastroparesis are all common), poor breathing regulation and much more. Raynaud’s is common – causing fingers and toes to go red, white and/or blue (sometimes all three in that order) in cold temperatures. I really cannot do this condition justice in a mere blog post, so I urge all to follow the links I’ve given to learn much more and join one or more support groups for same. Some will see a cardiologist, others may see a neurologist, and some may see both in the course of getting diagnosed and treated. Some benefit from beta blockers, although some of us may experience serious crashes from same. (I did). Always listen to your body, no matter how adamantly someone else tells you what “should” work. Every body is literally different.
I’ll close by saying that I believe all forms of dysautonomia are common in our EDS support groups, including Hyperadrenergic POTS and all are exacerbated by Mast Cell Activation Disorders or MCAD of any kind, whether Mastocytosis or the newly recognized MCAS. (Reactions can cause sudden BP drops and lend to low blood volume from 3rd spacing and angioedema from leaky vessels – abdominal swelling anyone?). I hope this has helped you to recognize some of these issues in yourself or someone you know. Like Ehlers-Danlos Syndrome itself, it is also poorly recognized and rarely diagnosed. But patients can regain significant quality of life with proper treatment for their variation.