Dr. Bex
speaker
498 appearances
7 recordings
1 series
first heard Nov 2024
last heard Jun 2025
Dr. Bex’s voice in public audio — every appearance, attributed to the second.
Trend
recordings per month · last 12 monthsNo recordings in the last 12 months.Older appearances are listed below; set an alert to hear about the next one.
Appearances
So it does sound like this may have been, you know, something along the lines that maybe was an appropriate diagnosis depending on how she presented. But the recommendation, which it should have been, was to go into an inpatient pain program where she can get treatment from all sides.
So whether that's medication and therapy and physical therapy and psychotherapy and all of these things together in one place is the ideal treatment. But it is still rare to have to be admitted actually into the inpatient unit of a hospital. from pain or pain associated with something like CRPS, typically they come in for other things.
So that always stands out to me that this is probably already a little bit outside of the norm or outside of the ordinary, you know, for Radies in this situation.
Right. And it does sound like, again, a little bit different than the story we heard before is we're now two years into her symptoms and they did an outpatient pain program. There was a pain psychotherapist involved at somewhere. They were using medication, biofeedback. It does sound like they were trying these other things that are often recommended.
Yet, despite all of it and despite two programs,
pretty invasive surgeries it sounds like she was still getting admitted for this severe unrelenting pain and somewhere along the way it does start to be you know pain associated like whole body pain or pain in other locations but this still at this point I would say the shoulder and the multiple dislocations of the shoulder is really a big part of it and that is something we see with Ehlers-Danlos that they that their joints can dislocate easier than you know anyone else's would.
So summer of 2018, two years after that surf camp, she actually got diagnosed with POTS, which is Postural Orthostatic Tachycardia Syndrome, another one of these acronyms that seems to come up time and again.
The idea being that when these patients stand up or change position, that they can get dizzy, lightheaded, feeling of a rapid heart rate because of the quick fluctuations in the level at which their heart is beating. Some people say, oh, well, everybody's heart rate goes up when they stand up. It's what's supposed to happen.
But it's that kind of change between your resting heart rate and your standing up heart rate that's more pronounced. The thing with POTS is that it does seem to be one of the things that comes into play when the patients become more debilitated, more where they do start to do less, they're less active, they're unable to do certain things that they were able to do before.
And it just seems like you can probably speak to this too from your experience, but it's one of those things that once that comes up too, it feels like we're kind of starting down this path. that is similar in a lot of these stories.
I think that's the hard part with POTS is I think it is there's still a lot that's unknown about it, meaning can it worsen after you get a bad viral illness? And it's one of those things that gets triggered. And then once it's triggered, it kind of never goes away. But the most important thing to know with POTS is it's symptomatic management. So
Things like increasing hydration, increasing the balance of salt intake with fluid intake are things that are recommended early in the course. Then there are the kids who do need medication to basically keep that balance correct. So meaning it's about keeping the blood flow going to your brain and to all of the important organs when you stand up and that you don't get so dizzy that you pass out.
And so some medications will help that balance where it won't let those fluctuations be so great. And it'll keep your heart rate more in a balanced range. That being said, there are these extenuating circumstances with POTS, which I know POTS experts or people that really focus in this field are trying to find solutions.
less invasive ways, you know, rehabilitation and therapy and dietary changes and nutrition changes, because I think there was a push at some point that IV fluids or fluids through an intravenous line is really the way to improve the symptoms quickly. And so this idea of some of these patients needing
G tubes or tubes in their stomach or central lines to be able to give themselves fluids versus like you or I would just attempt to always have a water bottle with us, always be eating crackers, balancing it with a water bottle. It's kind of became more invasive very quickly.
And I think we're now backing off of that a couple years, you know, like years later to realize what other things can we be doing early on. And POTS, from my understanding, is kind of once you are prone to it, It can keep causing issues throughout your life.
But there are times in life where it seems to be more prominent in like the teenage years, probably because your fluid needs and balances and hormonal changes are all playing a role. And it does affect women more than men. So there is that question of kind of.
the hormonal connection and I think it's kind of about finding a balance as with anything it's definitely not something that should be debilitating that you can quote-unquote die from it is something that is very manageable got it and yeah I mean then the reason that we become concerned about
And I think physiologically, I can understand that if you have Ehlers-Danlos, you're having these dislocations, and then you're going through this period where it sounds like two years of pain or some symptoms still associated, going through doctors, getting put on different medications. It sounds like she became much more sedentary over this time. And I would argue that
That if there's a time that she would feel dizzy standing up, right, or that some of these symptoms may show up, it would be now. So that to your question of does POTS always exist? I mean, the question is chicken and egg. Is the symptom and the thing she's describing more related to this underlying symptom? very legitimate change in her lifestyle and in her activity level.
Showing 301–320 of 498 · page 16 of 25
← Previous
Next →