A majority of EDS and HSD patients I know experience either mild or more severe Postural Orthostatic Tachycardia Syndrome (POTS), or some variation of this including “HyperPOTS“, Neurally Mediated Hypotension (NMH) and more. But likewise most MCAD patients I know end up exploring or being diagnosed with some variation on this theme also or find they should in time too.
But just what is dysautonomia? And didn’t POTS used to refer to telephone lines?? Ah, those were the good old days of IT support dear Jandroid, when we had Plain Old Telephone Systems! Oh how my worlds – and acronyms – have collided!
I have given short shrift to all of these topics so far on this blog because I got off lucky with a much milder “case” than most that I realized I could manage myself, knock wood. So I never even pursued the diagnosis beyond an EKG with my doctor in 2012. I was just too busy trying to literally stay fed and watered in early 2012 during my hEDS onset “storm” that by the time I figured out what was going on, I had already started to remedy it with supplements.
So I carried on with managing my hypermobile type EDS and my MCAS which was much more show stopping at least at the time. Yes, I consider myself very lucky! But that doesn’t’ mean I didn’t enjoy some trouble. And how…
Technically dysautonomia refers to dysfunction of your autonomic nervous system, which like it sounds, runs all the “automatic” operations we normally don’t have to think about, or shouldn’t. Things like breathing, digestion, heart rate, blood pressure and temperature regulation. Any or all of these can go out of whack, slow down or stop with dysautonomia, depending on the cause. (Hold that thought.)
At the height of my storm, I started experience varying bouts of tachycardia out of the blue. Thanks to my online support groups, I quickly realized what was going on and went to see my doctor about it. Of course, my heart behaved perfectly during my exam, just like how your car engine doesn’t make that funny noise for the mechanic right? So of course… I’m a crazy lady who just thinks she’s sick. Wrong!
I actually got stuck on my way out of the clinic, though I never told my doctor, because I realized it was going to be another wild goose chase and I just wanted to get home. I called a friend for help, and made it safely, ultimately, but I’ll spare you the details. I continued having mild tachycardia off and on until I had a friend help me fetch some Gatorade. I did this after remembering that they recommended this for my dad years before when he’d been passing out randomly and said he needed potassium. Sure enough: my tachycardia stopped instantly! Boom. I had one answer for myself anyway, along with just plain improved hydration.
I proceeded to make my own home-made “Gatorade” after that, and didn’t have any more tachycardia. I later found sufficient food sources that I could tolerate (I react to tomatoes and coconut, so yeah, those two easy solutions are out for me) in the form of carrot juice and molasses. (Not together!) Along with all the salt I can stand on my food and lots of filtered water otherwise, I’ve not had another bout since. Nota bene: I also was taking 500 mg/day of magnesium as well. (You’ll learn why this matters a bit later.)
But again, I’m a mild lucky case. Some of you will have been so bad that you got your POTS diagnosed first via a tilt table or other testing done by either a cardiologist, or a neurologist, if not both along the way. And some of you will have needed to take something stronger than potassium to manage yours, including various things like fluorinef and midodrine. (Talk to your doctors!) I’m so grateful I dodged this bullet.
However, I did not manage to dodge some cranial-cervical settling that messed with my breathing before all was said and done. Apparently my brain case had settled just enough on my head stalk that I was mildly squishing my brain stem and/or my occipital lobe (or both), and I would literally forget to breathe – in the day time! Like, all the time. I had to consciously remember. to. breathe! Crazy!
I also happen to have a retroflexed odontoid spotted by a chiropractor in an x-ray years ago, and don’t know if this may also play a role in my symptoms. Just tossing it on the steaming heap.
Again, I was still just so busy just trying to stay fed and watered and shut down both of my businesses and start applying for disability at this time that I couldn’t even manage to get this diagnosed. I figured it out when my colleague was diagnosed with central nervous system apnea aka “CNS Apnea”. Apparently some people end up with a pacemaker to help them remember to breathe if it gets bad enough! So how did I remedy this one you well ask?
Well, you may recall that my geneticist had recommended both Vitamin C and magnesium supplementation during my diagnostic visit of Feb 14th, 2012 when I asked about “best remedies”. (Not cures, mind you, I knew better.)
Well, again, it took me so long to even begin to address the problem that it had started to clear up on its own by the time I was getting around to it. Literally, my body and neck especially had apparently restrengthened enough from my religious supplementation regime that I was no longer having trouble breathing by about March of 2013.
What a relief! It just ever so gradually continued to improve, and I now no longer even think about breathing – most of the time, knock wood. But this can certainly be more show stopping for some of you, as it was for my colleague. I think she did end up with a pace maker before all was said and done.
I’m also lucky in that I can tolerate cheap OTC Vitamin C and magnesium and take loads of the stuff now much to my benefit. I’ve only continued to strengthen accordingly and now maintain the ability to walk albeit still with one Loftstrand crutch yet. (I went from walking to wheelchair in 3 weeks 5 years ago January 2012.) Many don’t tolerate almost any form of these two supplements, and have poor digestion, so struggle to re-strengthen as well as I did. And others of you have worse settling or instability in your necks that continues to mess with your minds – literally.
I see your posts on Facebook, they’re heart-breaking as you literally struggle to keep your good heads on your shoulders, sigh.
But dysautonomia is so much more than just POTS and CNS apnea. It can mess with your heart rate, sending it shooting sky high in almost no time, and keeping it there for indefinite periods, leaving you feeling breathless and anxious, like a motor racing out of its mounts. Alternately some will have such sudden and harsh BP drops that you literally pass out (experience syncope), or begin to (pre-syncope). Get up slowly you guys!
And in all cases stay as calm as possible, this too shall pass, I promise, even if it doesn’t feel like it just now.
But here’s the thing: the handful of people I’ve met who think they “just have POTS” and nothing else (or my favorite, fibromyalgia) have unfailingly turned out to show signs of at least hypermobility if not also MCAD of some kind as well upon further inspection and inquiry. Think about it: with rare exception, I really think POTS and many dysautonomia symptoms are the likely “love-child” of weak connective tissues all over the body lending to flaccid veins and weak valves which leads to blood pooling in our lower extremities. And comorbid MCAD lends to third-spacing and peeing out too much causing more hypovolemia (low blood volume), so between the two we’re just sort of doomed. Keep your fluids up everyone!
But plain water intake alone won’t do the trick. Most find the water just goes right through and doesn’t “stick” without a sufficient combination of additional electrolytes. Yet, and this was interesting to discover, even potassium won’t stick without sufficient magnesium! So guess what? I have one heck of a flock of guardian angels, since they first directed me to take Vitamin C and magnesium early on in 2012 post diagnosis, both of which served to strengthen my cardiovascular system. Then I intuited the potassium and fluids myself, and voila: my own remedy.
I know, not all are this lucky or mild, or will be. But you can get some definite help and hope for the condition with your doctor’s help beyond the above.
The last major area I see dysautonomia strike most is the digestive tract, in the form of dysmotility and gastroparesis (literally, stomach paralysis) in some. I have only the mildest case of same – I get full really quickly now and have for years. But my food is still moving through me well, thank God. I did have a little trouble swallowing at the height of my storm, and my elderly aunty is permanently on thickened liquids in her care home now too. Thankfully my swallowing improved again on its own just like my CCI above. Others will have more trouble swallowing for other reasons.
But I have literally seen some fellow patients die from gastroparesis, as their food is literally stuck in their systems, or nothing moves through, and they are unable to receive proper nutrition. Yes, this is thankfully rare, but very real. I think those of you with impinged vagus nerves suffer the most from this. (The vagus nerve enervates your GI tract among other things.)
Why I have such good vagal tone I’ll never know, but I don’t doubt my daily Reiki practice plays a role and helps some as did acupuncture previously. Along with just plain more good luck knock wood again. (Yes, I knock on a lot of wood all the time, trust me.) And again, an re-strengthened neck from the C and magnesium helping keep my brain stem and the rest of my neurology un-impinged (free, unsquished) and mostly happy.
Again, this is why I haven’t said much about the condition, because I’ve been blessedly spared from much of the worst of it all this time. Oh, sure, I freeze all the time, and swing wildly hot and cold on a dime, but that’s not generally show-stopping. Just highly annoying. (I wear three sweaters daily in winter.)
And this is just the tip of the iceberg of ways in which dysautonomia can affect people. I think it lends to more trouble with sensitivity to lights and sounds (I am very sensitive to both now), as well as how your pupils dilate. (Not always evenly, nor properly, even without taking any drugs.) Among many other things.
Again, there is a small but stubborn subset I meet in the support groups who insist they truly “just have dysautonomia” (usually POTS) and nothing else. But I’ve been hard pressed to find any in any of my support groups that isn’t secondary to some form of severe chronic illness like Lyme or EDS, and who truly don’t show signs of hypermobility at least if not also MCAD. My friend’s son Stryder is a rare exception, having just been diagnosed in September 2018 with a very rare form of familial dysautonomia that is not secondary to his as yet undiagnosed and extremely rare connective tissue disorder like “regular” POTS is. (I keep telling his mom he has “Stryder’s Syndrome”: he’s one of a kind so far.) He’s literally lacking complete enervation of his autonomic nervous system. That is, nerves to run his autonomic system at all.
I believe there is allegedly an autoimmune form of POTS or dysautonomia, and I won’t argue with this: heaven knows autoimmune disease can attack any part of the body so nothing surprises me there. But I believe you folks are the exception in the hypermobile communities I haunt. I still mildly suspect you of likely having part or all of what I call the Chronic Constellation and would love to know if you’re hypermobile or not. (Willing to bet some dark chocolate on it even.)
I often say “dogs don’t bark for no reason”, and neither do our bodies if you’ll allow me to mangle another phrase. (Om nom nom, I eat phrases for lunch, or my brain does at least, can you tell?) I really do think dysautonomia is more of a symptom cluster, or result of other things wrong in the body. I.e, it would be odd to experience in the absence of a clear biomechanical or pathological driver of some kind. But heaven knows some of you very black and white thinking types will insist on this just the same. (I’ve stopped arguing with you: you have literally steamrolled me to less than a crepe at times.)
But this is my blog, and that’s my theory and I’m stickin’ to it. It’s also late and I need to get to bed. It’s a very large topic, and very disabling alas. I hope I’ve at least shone a little light on why it can be so confusing to define: like much of what ails us, it’s a “syndrome” in its own right. Find my Dysautonomia Resources page here.