Listeners Questions Answered with Dr. Cathy Pederson
[00:00:00] Jill Brook: Hello, fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we are answering listener questions with the ever wonderful and wise Dr. Cathy Pederson, neurobiology professor, POTS researcher, POTS parent, and founder and president of Standing Up to POTS.
These questions came in through our website, standinguptoPOTS. org, through our email,
[email protected], and through social media. So you listeners are most welcome to keep sending in your questions to be answered in future episodes, but we'll get to it now with Dr. Pederson. Dr. Pederson, thank you for taking our questions today.
[00:00:45] Dr. Cathy Pederson: Oh, I'm happy to do it. This will be fun.
[00:00:47] Jill Brook: So we have some great questions, and thanks to everybody who sent them in, so let's just dive in. The first one is a little bit of a why us. Why do you think POTS strikes young women mostly?
[00:01:01] Dr. Cathy Pederson: Yeah, I think the honest answer to that is we really don't know. And I want to pause for a second because we have a lot of listeners who are men, who are transgender, who don't fit into this young women group. We have a lot of women who don't develop POTS, especially now with COVID, as teenagers or in their 20s, they're developing it in their 50s and 60s and 70s.
And so I do want to say that it does strike other people, but you're right, sort of historically, this has been a young woman's issue. And there are some theories about this, but again, we don't really know. So the first one is sort of a correlation. And of course, correlation doesn't mean causation, but women make up about 80% of all people who are diagnosed with autoimmune disorders, like multiple sclerosis, lupus, and a whole variety of other ones.
And that's a very similar percentage to what we see in POTS. There's mounting evidence that in some cases at least POTS may be an autoimmune disorder. so that's one. A second one that I think folks probably have heard as well is that it has to do with the hormonal changes in women, particularly at puberty and at pregnancy.
And so at puberty, you know, the ovaries are starting to work, you're making all of these hormones, they're new to the body, and... A lot of young people, when they develop it in their teen years, do so within a year or two of starting their period. We also see that a lot of women, once they've developed POTS, are even more symptomatic when they're on their period than when they're not.
And when you're on your period, that's when your hormone levels are actually really, really low. And that's what causes the purging of that tissue. The other place where we see it is with pregnancy. And with pregnancy, of course, those female hormones go really, really high. And so that can be a trigger for people with POTS.
Although I will say that sometimes people that had POTS previously and get pregnant actually feel better during the pregnancy. In part, because your blood volume goes way up, so it's complicated. But the idea of female hormones seems to be floating around there.
And then the third theory that I found that frankly, I had not heard until I was looking up answers for this question is there are some folks that say that women have less muscle in their heart. And if there's less muscle in your heart, maybe it's not quite as efficient, it's not quite as strong, the stroke volume, that's the amount of blood that leaves the heart per heartbeat, might be less. And maybe that contributes. I did see a few articles talking about that. But it's interesting, and the honest answer is, we really don't know. We really don't.
[00:04:12] Jill Brook: Okay, well we'll stay tuned and hope that we know in our lifetimes.
[00:04:16] Dr. Cathy Pederson: Good one.
[00:04:17] Jill Brook: so moving on to question number two, which is another good one. So as POTS patients, we are often told to eat a lot of extra salt. Where does all that salt go?
[00:04:31] Dr. Cathy Pederson: Yeah, that's a great question. It turns out in POTS, we tend to flush out a lot of the sodium more than people that don't have POTS. And so that's why they're asking for POTSies to... Take in so much more salt or sodium than other people. Right? Most Americans get too much salt. They're like, Hey, slow down, right?
We don't want you to do all this. And with POTS, we need to go a different direction. So I want to talk about sodium mainly. So salt and sodium are not exactly the same thing. Sodium is a component of some salts Jill could do this probably better than I could, but sodium is really important in your body.
And it's important because where sodium goes, water always follows. And so sodium helps us to maintain the fluid levels in our body. Including our blood volume, which we hear a lot about with POTS, but also sweat, tears, any body fluid really that you could think about. And so, what's interesting is when the sodium levels get too high in the blood, it makes us thirsty.
Now, here's the thing, it may not be that we have too much sodium, In that blood, it may actually be that we don't have enough water, right? And so what the body is doing when it makes us thirsty, is it's saying, Hey, you need to hydrate. I want to get more water or milk or Gatorade or whatever into that person.
And so drinking that fluid then dilutes the sodium out and makes the brain happier again. The other thing that we see when sodium levels get too high in the blood is that we start to excrete more urine. Okay, but it's concentrated urine, so it makes us have to pee, right? And if we have too much sodium in the blood and diluting it wasn't enough for the answer, then we pee extra sodium out and we just flush it through our system that way.
So we're doing this constantly, sort of maintaining those blood levels in the body, the fluid levels in the body. But sodium, when I teach my anatomy and physiology students, we really talk about sodium as being the major Positively charged ion in the extracellular fluid and the extracellular fluid is all the fluid that's going around the cells of your body.
It could be muscle cells. It could be brain cells. It could be spleen cells or heart cells. Doesn't matter, right? We're beings that have lots of water, lots of fluid. And so sodium is a major component in that extracellular fluid. And it turns out that we need to have sodium there. Because sodium will help us to generate, and literally starts off, something called action potentials.
These are electrical signals that run on the neurons of your brain but also on the muscles in your body. And so what action potentials do is they allow things to communicate. So they allow you to send signals that eventually will cause the release of neurotransmitter and, and allow communication with other neurons.
And then the muscles, when you get action potentials, that's when you contract that muscle. So you can show everybody your guns, right? Show them your big bulging biceps, but we need sodium for that and we need to have it in that extracellular fluid. So it's actually very important for our normal function.
What we know in POTS, of course, is we hear about hypovolemia, right? And that's talking about low blood volume. And so we know that this is a problem for lots of people with POTS. And so again, the idea is that maybe you're taking salt pills. I know my daughter does. Some we make Himalayan salt, some we buy salt sticks, and then we're really trying to encourage her to drink water and Gatorade and almond milk to get that blood level up. Remember, as we're swallowing those salt pills, we're putting that salt into the blood where salt goes, water always follows. So that attracts water into the blood. It holds water in the blood so we don't pee it out. And it's really important that we're doing both of those things together, right? That we're taking the salt in and then we're hydrating to help hold that in our bloodstream. Does that get it?
[00:09:18] Jill Brook: Yeah, so that's really interesting. And I guess a follow on question that I would have to that is, do we know how long say an average meals worth of salt would stay in the body for an average person or for POTS patients? And the reason that I ask is because I recently had some interesting conversations with physicians who were talking about how interesting it is that the average POTS patient will usually feel better for days after getting saline infused into their bloodstream. And what they thought was interesting about that was that theoretically, the kidneys would flush that out within hours and yet they feel better for days.
So what is happening there? Is there some process that got interrupted that was counterproductive? Did that pull them out of a flare and buy them an extra couple of days of feeling good. Or something about the time horizon of the sodium didn't match the time horizon of how long people felt good.
And it was just a mystery to them. And I don't know, do you have any thoughts about that?
[00:10:23] Dr. Cathy Pederson: I do. So it's more complicated than that. And, you know, when we think about protein intake in a meal or carb intake, the body does go through that within several hours, right? We store it or we get rid of it depending on what the case is that the body needs. I don't think sodium works that way. It's more cyclical.
It's longer period of time. It is not meal to meal. It may not even be day to day. So I was looking at some papers and they were talking about that it's not tied to that individual meal, which I think is your point. And that it may be a weekly or even a monthly cycle that your body goes on. And so when you extrapolate that to the IV saline or fluids, which do have salts in them, that may be just adding that salt right to the bloodstream, your body keeps it there.
But remember where sodium goes, water also follows. So even though the bolus of water that was in that saline may dissipate within a few hours. If the sodium is still there, it holds on to more of the fluids that you're drinking. You're not peeing as much of those out. So, yeah, so that's an interesting question and that's my best answer to it.
[00:11:47] Jill Brook: That's fascinating. And that makes me think of another question. Sorry, I'm throwing all these additional things, but our listeners ask such good questions it's making me think now about how, if you have gut dysmotility, For example, if you have gastroparesis, does that change how long it takes that sodium to get into your blood once you consume it?
And I would be curious what the range is for somebody who has maybe fast gut motility, because we know that about a third of POTS patients actually have too fast gut motility. And what does that do for how quickly they can feel better after consuming salt and water versus somebody with slow gut motility?
[00:12:28] Dr. Cathy Pederson: Right, so I think in the case of gastroparesis, it probably doesn't make a lot of difference. So gastroparesis is where you have a paralysis or partial paralysis of the stomach maybe into the intestines a little bit. But when it's moving too slow, you tend to absorb more. So you would absorb more water into your bloodstream.
You would absorb more sodium into your bloodstream, which should help with the low blood volume. So while a lot of digestion would be affected, proteins, carbohydrates that are sitting in that hydrochloric acid in the stomach for longer, you would see different things happening. I wouldn't expect that with sodium or water, which can be absorbed in that form.
With rapid gastric emptying, though, it's like diarrhea. So it's going through too fast. You can't absorb all the water. And so it ends up sort of coming out that other end, and so in that case you would not absorb the fluid and the sodium at the same level as you would expect, and so that would be a bigger problem as far as absorption of those things. It's different when we talk about other nutrients and things that need enzymatic breakdown.
[00:13:45] Jill Brook: Excellent. Okay, well, moving on to the next question, which is a bit of a different topic, we're talking about FDA approval. So we oftentimes hear in the POTS world, Hey, there's not enough treatments that are FDA approved, if any, I think at this point, is there maybe one?
[00:14:05] Dr. Cathy Pederson: I don't know.
[00:14:07] Jill Brook: There's either one or zero, but at any rate, everyone's always wondering why there are not more. And so, the question is why, and what difference does it make if it is FDA approved?
[00:14:20] Dr. Cathy Pederson: This is a great question and you do hear about this all the time, right? And people are sort of up in arms that we don't have things that are FDA approved. So here's the scoop on this. In order to get FDA approval, and FDA stands for Food and Drug Administration, so that's the government agency in the United States that's responsible for our food supply and for prescription medication quality control.
And the way that the process happens is the drug companies have to petition the FDA for approval. And in order to do that petition, they have to provide scientific evidence that whatever their drug is, is safe and effective, and They have to show that, in this case, in a POTS population, so they'd have to run a clinical trial to look at this in POTS.
And so when they're doing the scientific evidence, if it's a brand new drug, the first thing they have to do is show that it's safe in animals. So they do animal testing, let's think about chemotherapy, you know, a cancer drug, that's really easy for us to think about. And so they might have animals that have... some cancer. So they give a little bit of the medication to that animal. And then they look to see, did the cancer shrink? Did it stay the same? Did it continue to grow? But also what they do is they look at the heart, the liver, the kidneys. Were there any other really bad adverse effects that would be problematic in humans?
If they make it through animal testing and the FDA says, okay, this is looking good then they go into clinical trials. with humans to see if it's safe and to see if it's efficient. This process takes years and it's expensive. It's really expensive. And so if it's a brand new drug, they may have 12 years of research and development before they ever get to a point where they can sell the first prescription.
So once they've done all that, then the FDA says, Okay this drug looks pretty good. Let's say the benefits outweigh the risks. Maybe there are some side effects or they call them adverse effects, but they're tolerable for what's needed from that medication.
The FDA themselves doesn't do much research. They'll do a little bit of testing for drug quality. Again, they, they're ensuring that that the drug dosages or what they say they are safety and effectiveness. The drug company can go through all of this and then not be approved by the FDA. So it's cost them millions of dollars potentially, and they can't sell it in the United States.
Let's switch to what most POTSies are dealing with. We talk about these as off label uses. Maybe people have heard of that term. And what that means is that the drug is FDA approved, but not for POTS. It's approved for something else. And so we can feel pretty good about that, that it's gone through the animal testing, it's gone through the clinical trials, shown to be safe.
But it hasn't been tested specifically in POTS. And let me just give you some examples that might make people feel a little bit better. So beta blockers, many, many, many people with POTS take beta blockers. This is FDA approved for tachycardia. So not for POTS in particular, but for tachycardia. So we should feel good about that.
Hypertension, which is high blood pressure, heart attack, heart failure, hyperthyroidism, essential tremor, glaucoma, the list goes on. So I don't think it's been approved for POTS, but it's been approved for lots of other uses. It's safe, it's effective.
I think one of the first drugs that's often given to people is fludrocortisone or Florinef. I know that that was one that my daughter took early. And that is, again, not approved for POTS, but it's been approved for Addison's disease. And so they have problems in Addison's with their adrenal glands. Not. releasing enough hormones and flutocortisone is, is used for that. I actually have an aunt who has Addison's and when my daughter was 10, 11, 12, my aunt and my daughter were both taking fludrocortisone.
My daughter for POTS and my aunt for Addison's disease. I think they were taking the same dose and everything is really funny. And then there's another much more rare syndrome, it's called adrenogenital syndrome. It's a congenital problem. And fludrocortisone is also approved for that.
And then the last example I want to give is mestinon. I know this is one that my daughter takes. I think a lot of people take that in the POTS community. It's generic name is pyridostigmine and that's approved for a lesser known Neurological disorder called myasthenia gravis. And so again it's been approved, but not for POTS. Now the interesting one, I didn't know this actually there's a nerve agent called somen. And if soldiers are exposed to or thought to be exposed to Somen, they will give them Mestinon or pyridostigmine. It's been FDA approved as a prophylactic to try to prevent them from getting sick from that. That's a long way around to say while the medications that we are taking for POTS are not FDA approved for POTS, they are FDA approved for other things.
The problem is that it can make it more difficult to get insurance to pay, especially if it's expensive. And so Jill, I know you take IVIG and you go around and around with the insurance companies because this is not FDA approved medication or treatment in that case for POTS. And other people may be in that same boat,
[00:20:42] Jill Brook: Yep, yep. It makes it really, really tough.
[00:20:46] Dr. Cathy Pederson: right? And IVIG is really expensive. So other medications that may be 50 a month, they don't care, right? But when it's thousands of dollars for each administration, that's a bigger deal. The other issue with not having it FDA approved for people with POTS is then we don't have a lot of clinical data to go back to on drug efficacy.
And many people with POTS are very sensitive to medications. They take lower doses than other people. Mast cells, we, you know, talk about that all the time on, on this program, but those can really respond to either the fillers in there or the medication itself. And so we don't have that clinical data.
Now there are papers out there, Dr. Raj and Dr. Fedorowski both have published really great papers on medications that are good for POTS and at what dose and at what schedule. So do you take it in the morning or morning and evening or only the evening? So there are some physicians that are trying to help with this, but we don't have the big clinical studies.
[00:21:57] Jill Brook: Okay. So, for our next question, you already talked about this a little bit in the FDA approval process, but this listener is wondering, why does medical research take so long? Great question.
[00:22:12] Dr. Cathy Pederson: It is a great question, and it's really hard to understand from the patient side and the caregiver side, but I do have a PhD in neurobiology, and so I have spent time in the lab, and it can take a decade or two decades to go from sort of the bench work in the lab to something that patients see in the medical clinic.
And I get it, it stinks. But there are reasons for that. It's really important that when folks are doing research, that it's really well constructed. That they have multiple groups, they've got a control group in there, but also that they're controlling for every possible variable that they can. And so I'll come back to that I guess in a second, but this takes a lot more effort than you might think.
A lot of times they get the idea. Maybe it's a faculty member at a school of medicine or in one of the big research institutions, but they need money to do the work and so they have to apply for grants. So Standing Up to POTS has some, other groups do. Finally, the government is starting to fund POTS research and long covid research, which is wonderful news for us.
But once they get that money. They've got to be sure that what they're testing is going to be conclusive and that that the change that they see can only be due to the variable that they're manipulating. So let me give you an example, and some of our regular listeners will recognize this from episode 25, where Jill was talking to Dr. Heather Edgell. About something called the Q collar and it's a really interesting concept. It's a device that's already out there. You can buy it. It's expensive, I think it was 400 when I looked it up but it puts a little bit of pressure on the neck and it's already used in sports. And so football players used it there was some hope that it might help after concussion that sort of thing.
So anyways Dr. Edgell really wanted to see if this might help POTS patients to decrease their symptoms. Well, what does she have to control in a study like that? Let's think about POTS for a minute. There are studies that have shown that many people with POTS are worse in the morning. They're more symptomatic in the morning than they are in the afternoon or the evening.
So she needs to control for time of day. Preferably, she wants to run all of her testing in the morning. But if she's running some in the morning and some at 4 o'clock in the afternoon, it's not the same, right? If she's doing a study on women, there are other studies, and she's actually looking at this, that it matters where you are in your menstrual cycle.
So I mentioned a few minutes ago that when you're bleeding, When you're on your period, that your hormones are actually really, really low. And that allows for that purging of that endometrial tissue. When you're ovulating at day 14 in the middle of the month, that's when your hormones are at their highest. For that month. And so we see this fluctuation. We know about that in women, right? It makes us moody. Sometimes it makes us flirty at other times. But if you're doing a study, you need to control for that, which means that if I have an appointment open at Tuesday at eight o'clock, but you're at the wrong time in your cycle.
You may need to wait for three weeks. Right? That means bringing participants in is slower than what you would think. You want to be sure that you're testing everyone in the same way, but also in a way that's publishable, that people like myself won't poke holes at it and say, boy, this isn't a good study.
You know, so in her case, she was using tilt table testing. So now you've got to schedule it when you can get into the tilt table. You get the idea, right? When she's looking for participants, she's got to ensure that they all have POTS. She wants them to have similar comorbidities. You don't want someone... that's relatively pure with POTS and with other people that have really severe comorbidities that might actually be a bigger problem than their POTS, right? That would throw off her results. You try to match for age. You try to match for gender. Again, we keep thinking, I keep coming back to hormones, right?
But this is really important when you're doing that kind of research. You get the idea. This slows that research down. Let's say it's not the Q collar. Let's say that we're looking at a medication instead. Let's say that we found something new, some new medication, that's never been out there before.
You know, you have to go back through. They do actually what's called in vitro testing. Again, let's think about cancer, because this is a really easy example. You take some breast cancer cells, you grow them in a plate, and then you throw the medicine on top of it. And, you know, what percentage die or do they keep growing or whatever?
And then you do the animal testing and then you do the clinical trials and the clinical trials for POTS are going to be long. Because POTS, unfortunately, is a lifelong disorder, which means that they need to do these clinical trials, not for a week or a month or a year, but really they should be doing them for 5 years or 10 years, following people.
So do you see drug effects, adverse effects, accumulating over time? If the drug company has discovered a new antibiotic, they only have to test that in clinical trials for a week or two. It's a huge difference. I'm not trying to defend. I get it. As the mother of a POTSie I get it. But it is important that we do the best science that we can to have the most accurate answers that we possibly can.
[00:28:31] Jill Brook: So that's a great and thorough answer, and it's going to tie into the next question, which adds another layer of complexity, which is why does everyone seem to respond differently to drugs?
[00:28:45] Dr. Cathy Pederson: Boy, this is a great question again, you know, and this happens for sure. So one thing could be just the difference in genetics from one person to another. We all are very similar. We're like 98 or 99% the same as humans, but that 1% actually makes a difference. And it could be that I'm missing an enzyme that's important in the metabolic pathway for that particular drug. Or the enzyme is defective. Maybe the protein hasn't folded properly. But regardless, it's not doing what it's supposed to do. Or it's not doing it as fast as it's supposed to do. And if that happens, that shuts down the whole enzymatic cascade.
So just having one enzyme that's missing or Not enough there, or is misfolded, causes us to not metabolize that medication, which means that the medication now builds up in the blood and in the tissues of your body. The more it builds up, the more adverse effects you get, so that person may not tolerate that medicine very well.
Other people might have the same enzyme that's actually overactive. Maybe they have too much of it in their body or for whatever reason, it's in hyperdrive, right? And so it's burning through that medication too quickly. And so we call that a half life, right? The amount of time it takes to get half the medicine to dissipate.
And so then you've got a really short half life. So it's not staying in the body long enough. And that may be another reason people say, this doesn't work. And so those genetic differences can make a big difference. There's a whole new branch of, of pharmacology now that's called pharmacogenetics.
I don't know if you've heard about that, but they're starting to look at doing blood tests where they just take a drop of your blood and put it on like a microchip. And then they can predict which medications might work best for you based on this genetic makeup. It's really fascinating.
It's out there, but it's not super mainstream yet. Another thing that we see is age. So, you know, think about weight, right? When you're a kid, your metabolism tends to be really fast. You can eat anything you want and you don't put on the weight. You hit 20 and the metabolism starts to, to slow down. You hit menopause in your fifties and it slows down even more.
And so we see this with weight, but it can also happen with medications as well. That some of those enzymes in that metabolic pathway are slowing as we age, which may make us more sensitive to that medicine. overall weight of the individual matters. And so part of a physician or a practitioner's dosing considerations is the weight of their patient.
And so you've got more tissue for it to dissolve into, to spread through. And then the last one is a lifestyle change that many people may not realize affects medicine, and it's smoking. Nicotine is actually a stimulant, so it makes your heart beat faster, it makes your metabolism go faster and a lot of people when they're smoking, they lose weight, right?
And when they stop, maybe they put a few pounds on. Well, again, that metabolism as it relates to weight can also relate to these medications. And so, when a doctor asks if you're a smoker, they're not just being nosy. They actually need to increase the dose of that medication for a smoker compared to what they would give to a non smoker.
So those are a few reasons that we could see these differences in reaction to the same medication.
[00:32:41] Jill Brook: For sure. And I even wonder if there are more interactions with either foods or supplements than we know about. We know that there are some drugs that interact with grapefruit, for example, or leafy greens. And you can look up many supplement drug interactions, but I always think there's no way we know about all of them yet. And I wonder if some of those are going on as well.
[00:33:06] Dr. Cathy Pederson: Yeah, that's absolutely right. You know, and You mentioned like the, the green leafy vegetables, and again, when I'm talking in pharmacology, the famous example is a drug called Warfarin, it's trademark name is Coumadin, and it's a blood thinner, and it doesn't work very well if you have lots of vitamin K which comes from those green leafy vegetables. All the doctor needs to do is find out how much of that you're eating. And then they titrate the dose up. So you don't have to get rid of that, but it's really important when the practitioners ask those questions that you answer honestly so that they can adjust the medications.
Dairy is one that I'm sure you're aware of but didn't mention. And we know that dairy products can interfere with the absorption of iron for instance. So if you're taking iron supplements, you do not want to do that with a great big glass of milk. Or a yogurt, that's not good.
That's not to say that you don't use those dairy products. You just separate the dairy products from the medication. Dairy also affects antibiotics. So you want to separate the dairy from taking that antibiotic and then thyroid medications. So absolutely, absolutely.
[00:34:21] Jill Brook: And can I ask a follow up question, which is, Are all drugs absorbed the same way in the digestive tract? Or are some drugs absorbed higher up and some lower down? And does GI motility affect that, I wonder? Do you know anything about that?
[00:34:41] Dr. Cathy Pederson: I'm going to speak in big generalities here, but there's almost no absorption that happens in the stomach at all. So, the only things that can get through the lining of the stomach is aspirin and alcohol, and both in low percentages. Almost all of the digestion and absorption happens in the jejunum, which is the second part of the small intestine.
And when you're talking about nutrients, almost all of the nutrients are absorbed there. If you're talking water, we do in the large intestine do a lot of water reabsorption. There, but most of the medication I think goes along with that food. So it's in the jejunum. How fast the motility of the intestines are makes a huge difference.
And I would also say that the gastroparesis Would make a difference with medications because again, if you have that medication and lots of medications, folks have a protector against hydrochloric acid that are sort of built around it, right? So that the hydrochloric acid that's normally in your stomach doesn't break down that medication, but it's only made to last for an hour or two. It's not set to stay in there for a long period of time So if you've got gastroparesis and you're taking this medication orally, You could have it a lot of it really being killed off You know broken down by the hydrochloric acid before it even moves out when you're talking about The rapid gastric emptying, that wouldn't affect it so much.
But with that, if it's going flying through those intestines, again, you don't have the time to absorb it. And so you're pooping the medication out. Sorry to be graphic, but that's what would happen. And so, yeah, that definitely stomach and absorption issues, the intestinal motility makes a huge difference here.
Let me throw one other thing in. Can I do that? So sometimes drugs will work for a little bit and then they stop.
[00:36:56] Jill Brook: Yeah, what's up with that?
[00:36:58] Dr. Cathy Pederson: yeah, this happened to my daughter. Do you mind if I tell you a story?
[00:37:02] Jill Brook: Please.
[00:37:03] Dr. Cathy Pederson: Okay. So my daughter was probably only 11 at this point. You know, she got sick really young. She was 10 and we had been searching.
And she had tremendous leg pain. And she would say like she felt like snakes were biting her legs or bombs were exploding in her legs or bees were stinging her like she had a lot of pain. And so as any distressed mother would do, I'm going to try all sorts of different things, right? Medications, physical therapy, tens units, all this stuff.
Nothing works. Nothing works. My daughter is in pain and we finally found this medication. It's called carbamazepine. It's an anti seizure medication that can be used off label for... Pain for neuropathic pain, which my daughter had. And oh my gosh, She started taking this carbamazepine and her pain went from nearly 10 out of 10 to a 5.
[00:38:02] Jill Brook: Wow.
[00:38:04] Dr. Cathy Pederson: were Ecstatic. Because nothing had touched her pain and this was not the first medication and we had tried several other Big medications, right? Scary things that you don't want to give to your 10, 11, 12 year old, but doggone it. So she was great. And we were thrilled, and she woke up one morning, probably six or eight weeks later after this pain had dropped down to a five, and she's crying. And she said, Mom, the medicine's not working anymore. My legs hurt so much.
And So, we went back to the doctor and the doctor was great. We had all been so excited that something had finally cut her pain. He played with the dose, he tried adding some other medications with it, nothing. And the conclusion was that maybe for whatever reason, her body had become tolerant to the carbamazepine.
So, tolerance, we, we think about it with alcohol. So when you have your first drink of alcohol, you have that first beer or whatever, half a beer and you're buzzing. I teach college students, right? So this is what my examples come back to is alcohol. But you're buzzing after that first half a beer.
But, but if you are drinking regularly. Then eventually it takes two beers to feel that buzz and then three and then four. And so we think that that's what happened with this carbamazepine, that my daughter's body got used to having the drug there. We tried increasing that dose, like you increase the amount that you drink, right?
But in her case it never came back and we eventually stopped the medication and, and she just lived with the pain. So I don't know that we can always explain why these things happen. Maybe it's a change in body chemistry. She was young and she was developing a lot of symptomology. And I think other things were, maybe were coming into play.
Maybe mast cell was coming into play for her. We realized the EDS, but maybe her EDS had been increasing as far as it's symptomology, right? It's really difficult. Have you had a drug that's done that or a medication that you took for a while and then It just stopped?
[00:40:28] Jill Brook: Yeah, absolutely. And it's kind of heartbreaking, and sometimes I feel like you have to then keep taking it just not to be worse off than when you started, and try to gradually wean off, which is extra discouraging.
[00:40:43] Dr. Cathy Pederson: I will say that sometimes this happens with antihistamines, and sometimes if you change the formulation of like your H1 blocker, then that will keep your mast cells back in check again. So sometimes you can change to a slightly different brand or formulation of a medication to get around that tolerance, and eventually you may end up going back to the first one again.
But it is, it's very difficult, and I think it happens to POTSies more commonly than people realize.
[00:41:16] Jill Brook: Hmm. Yeah. So I guess this just adds all that more complexity about finding drugs that work.
[00:41:25] Dr. Cathy Pederson: And the other thing, let me throw in there, is that as we're dealing with all these complexities and as people realize that they have Mast Cell Activation Syndrome or EDS or whatever the comorbidities are, they may start taking more medications. And those medications can also interfere with some of the medications that they may have been stable on for a couple of years.
And so you always, if you start taking something new and then you're feeling off, you want to talk to that pharmacist or talk to your practitioner about whether there might be drug interactions that might be causing those symptom flares again. There's a lot.
[00:42:06] Jill Brook: Yeah, yeah, it's complex, and it's why this takes a long time, and you have to kind of learn to be a self scientist to pick apart what factors are doing what.
[00:42:18] Dr. Cathy Pederson: That's absolutely right. And it's a shame, but it is complicated. You know, for the practitioners, this is complicated for anybody and we're the ones that are living it. So it does seem to make sense that we might notice those trends or notice that effect first.
[00:42:38] Jill Brook: So I feel like we should all take a moment, and if you are taking any drug that is helping you right now, be grateful. You found something that works for now.
[00:42:46] Dr. Cathy Pederson: Absolutely. Absolutely.
[00:42:49] Jill Brook: Oh, well, Dr. Pederson, thank you so much as always. You're such a great teacher and we love learning about POTS from you. And hey listeners, feel free to send more questions to
[email protected] if you would like to keep having more Q& A sessions like this one. until next week, as always, thank you for listening. Remember you're not alone and please join us again soon.
