Why Your Body Is Working So Hard
So think about some of the symptoms that people experience with POTS. A lot of them can be relative to this secondary effect of having energy mobilization. In other words, if I'm having a hard time feeding my brain, I'm not getting enough oxygen there, I'm working really hard, my heart's beating like crazy — that's a secondary effect. The secondary effect is to try to produce more energy within the system.
That's why when you measure norepinephrine, it's going up — because we're trying to drive that sympathetic signal more. We might see that volumes change. We may see that heart rate's going up, sweating's going up. Understanding the root cause of tachycardia in POTS is key to knowing which responses are primary and which are compensatory. The distal perfusion of the vessels is changing because we're trying to get more blood into the central system.
So all these things are secondary responses — changes in CO2 levels — but they're all to try to preserve and compensate energy. We're trying to pull blood into the middle and then be able to pump as much energy as we can to be able to deal with this problem we're having.
The Medication Progression That Happens
Some people will be prescribed ADHD medications as a way to combat the low energy. So it kind of will be like in the sequela, or in the progression of things that happen — eventually they're just like, "Well, we've given you the beta blocker, you've had the midodrine, the volume expander of fludrocortisone, we've given you everything but you're still tired — maybe we give you a stimulant as well." This pattern of stacking medications is a big part of why dysautonomia treatments fail for so many people. And then if you get real good, you get the stimulant and then also a sleeping aid as well, because a stimulant makes it hard to sleep.
So that stimulant portion is kind of like the ADHD portion where people can use it as a way just to give them a pop, a stimulus, a boost of energy. You know, they're taking speed basically.
“I generally tend not to get super excited about it because it usually means that after we solve the main problem, we're going to have to help them deal with solving the next one.”
The Short-Term Gain vs. the Long-Term Problem
A lot of people with ADHD will find that they do get a jump in activity or clarity that comes with that, because we're affecting that adrenergic system. But on the back end of it, it can also be harder to recover — and then we're also kind of pressing it in a way that can make it harder to recover.
So it is a common thing where people will use the stimulants. I generally tend not to get super excited about it because it usually means that after we solve the main problem, we're going to have to help them deal with solving the next one — which means working with their prescribing doctor to help them taper off of those medications as a way to kind of balance that back out and get the neurochemistry back on track again. So it's not my favorite thing.
How to Talk to Your Prescribing Doctor
If you're worried about it, I would talk to your prescribing doctor and just tell them what your concerns are and get them on your side. Don't be antagonistic. Don't go in like you know it all, because they just turn off. And if they turn off, then they're not useful and then you got to start over again.
But by being able to find some common ground and saying like, "Here's what I'm worried about. What do you think?" — it gives them the ability to then be able to help you, or you help them come up with your solution, which can be really helpful.
“Don't be antagonistic. Don't go in like you know it all because they just turn off. And if they turn off, then they're not useful and then you got to start over again.”
Our Approach: Fix the Root First, Then Address Medications
I understand why that's hard. I also understand that if you're already taking that medication, coming off it can seem like a bear. But it can also — in the short term, that energy is kind of like the only thing that you got. So it's hard to give it up.
A lot of times we'll start trying to address the reflexive things first. We leave those medications alone and then if we get to a point where people are feeling strong and they're like, "OK, I'm doing really well now. Let's see if we can start to pull those medications off" — sometimes that is the approach we'll often use. So you don't have to feel like a panic about trying to get off them necessarily right away, unless you're having some other problems.
Sunlight and POTS: Why It Matters More Than You Think
The level of melanin in your skin is dynamic and it changes relative to the amount of UV radiation that you're acquiring. So what's really cool — every cell's got a nucleus that has its DNA in it. And we know that radiation can affect the DNA, cause mutations, which aren't good. But your body already knows this, which is pretty awesome. And what it will do is when the UV index starts to go up, we're getting more UV exposure — then we will see the skin respond by putting more melanin in the outer layer of the skin.
You can think about that melanin as a way to be able to almost make ourselves little solar panels so we can absorb the sunlight, put it to work, but then also it allows us to absorb it at this outer layer and create shade for that nuclear part of the cell on the inside that doesn't necessarily need that penetration of the sun, especially the UV radiation — while it may account for more of that red light moving through the system, which is pretty cool how that works.
How Much Sun Exposure Do You Need?
Think about it in three ways. You think about sunlight without UV and sunlight with UV. We kind of want to maximize the sunlight without UV exposure early in the day because it primes the skin to be able to tolerate the UV in the middle of the day. We need a smaller dose of that. So most people can get away with, you know, 20-ish minutes as a minimum of UV exposure during the summertime.
And then once the sun starts to go down, the UV exposure is down, then being able to maximize the kind of more red light exposure on the back end of the day. Most of you have seen like red lights are wildly popular. We use them in the clinic. But they're meant to mimic that time frame from our red sun where we're outside of the UV exposure and we're trying to stimulate that red light within the system. The sun's red light is better. It's denser. It's more full spectrum. It's kind of more what we're built to tolerate.
The way I usually recommend it is as much as you can while it's red light. Work up to 20 to 30 minutes or more depending on your tolerance during the peak daylight hours. And then once that sun starts to go down, kind of absorbing that red light. The good news is when the UV is not out there, you're not going to get burned — so you can tolerate it more even if you're of a very pale skin, which a lot of POTS folks are because they don't get to spend a lot of time outside. They don't do well in the heat. And that can be a good way to start to get some gentle exposure as you're moving along.
“Sunlight has like a way bigger role than we usually think to give it... as much sunlight as you can get tolerably is probably a good idea for most people.”
Why POTS Patients May Need Patience with Sun Exposure
It might take a couple seasons for a lot of people to start even getting tolerant of the sun. I see a lot of people that in that first year they can go in the sun and they get zero change in skin color. They get zero tan. You wouldn't know that they were even in the sun. They're more likely to get burned. So you got to be more gentle with the exposure on the UV side — just a couple minutes at a time.
But then in the next season, in the next season, you'll see that starts to change and they can darken their skin and they're able to tolerate sunlight. It's really interesting. There's a whole lot about sunlight that's super useful for humankind, especially in terms of energy production.
Questions About Medication and Your POTS?
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