Living with Dysautonomia

wiredpuma5 said:Thank you so much for the info.

My tachycardia eases up when I'm lying down (75-85 bpm, maybe hitting a low of 65 at night), but as soon as I stand up—boom—my pulse jumps to 95-110. It stays like that all day while I'm sitting or standing. When I'm moving around (like walking), my heart rate is elevated, but I don't feel it nearly as much. My blood pressure is low. It can hit 100/48, and once I stand up, it goes to about 100/75. So, based on everything, I think it’s less about my heart and more about my brain.

It would have been a lot more helpful if you had actually answered the questions asked, because they were phrased quite precisely and concisely. It's like asking someone if it's raining, and they respond by saying the streets are wet and it's cloudy. But whatever, no big deal.

Based strictly on what was just written, POTS still seems possible, though it's looking less and less likely. It's more probable that the sympathetic and para- (does anyone remember that Pokémon?) -sympathetic nervous systems just can't reach an agreement on who's in charge. While your vagus nerve (the parasympathetic side) crashes your blood pressure and keeps it low, the sympathetic system kicks in due to that low pressure (which drops even further once you stand up). The carotid sinus gets stimulated, cranking up the heart rate to ensure blood flow. Even if the pulse technically crosses that magic threshold of 100 bpm—meaning it technically falls under the definition of tachycardia—110 bpm isn't massive. However, if there are accompanying symptoms that point toward POTS, then yes, it’s significant.

The brain is actually even less to blame in all this than the heart. The autonomic nervous system originates in the medulla oblongata, and then—at least regarding the sympathetic side—it continues through various ganglia distributed throughout the neck, chest, and abdomen. There are some along the spine, too.

Anyway, go ahead and get that TTT (tilt table test, I just looked up the exact English term again) done. Depending on the results, we might actually have some answers, especially if it comes back positive, since it has high specificity (around 80-90%). Its sensitivity is a bit lower, though (60-75%), so a negative test doesn't completely rule out POTS. All in all, you're a little bit smarter now than you were four hours ago, and best of all, none of this cost you a single cent. Or any other currency, for that matter.

My brother follows the TTT protocol, though I'm honestly not sure if he should seek a recommendation from a neurologist or a cardiologist first.
(There was a time when they considered sending me there, but we eventually concluded that my SLE was the culprit behind my tachycardia, especially since my symptoms weren't quite as intense during positional changes.)
He should definitely ask around, though; the website has plenty of helpful info.

A quick little video on POTS, featuring American subtitles.



It’s a video where people living with dysautonomia describe what the experience is actually like. I suppose it might be helpful.

mistybison45 said:A short clip about POTS, with American subtitles.

A video where people living with it describe what it's actually like to deal with dysautonomia.

So, has anyone actually donated yet? Because let’s be honest, they really went all out making this first documentary look incredibly moving—they clearly have a top-tier marketing team working behind the scenes. But then you get to the end, and it says they've only managed to scrape together a measly $949,811 over the last five years. Not even a full million! That is frankly pathetic considering how many people have built entire careers off this cause; they need to be pulling in way more than that. Especially now that they've portrayed POTS as this all-powerful thing, making some uninformed person think it is the magic cure-all for every single ailment.