Episode 27 – Building Blood Volume Link: https://tinyurl.com/5n8em5th

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Mike (Host): Hello out there, all you POTS patients and people who care about POTS patients like I do. I'm not your usual host, Jill Brook. I am Mike Brook, I am her husband. I am her valet, I am the captain of her autonomic support team, and I am the President of her fan club. And I will be your host as I interview Jill for this episode of the POTScast.

The topic today is a nutrition topic. It is boosting blood volume and we will be interviewing Jill Brook who you may know as a nutritionist in California. So, a little bit about Jill: She received degrees from Princeton University and UCLA and then worked as a nutrition researcher. She then moved on to a private nutrition practice in Pasadena, California for 15 years. She now works remotely for several physicians. She is the nutrition consultant for the Dysautonomia Clinic in the LDN Research Trust.

She has coauthored several journal articles about POTS and mast cell activation syndrome, and she spends a lot of time volunteering to help the patient community through her work at Standing Up to POTS, the LDN Research Trust, patientscount.org, and by working on the research teams of several dysautonomia specialists.

Jill, thank you for talking POTS, nutrition with us today.

01:55 Jill: Thank you for having me and thanks for hosting, and now I'm worried that from now on I'm going to be seeing like I'm super boring once people have had you for a host.

02:05 Mike (Host): Well, since you have home field advantage for this interview, I'm going to start you off with a real softball question. It's a simple one. So what's the magic diet to cure POTS?

02:14 Jill: [Laughs] Yeah, right? I want to know that too, and I'm pretty sure there is no magic diet to cure POTS. But there are a whole lot of nutrition findings that are potentially helpful for some of the symptoms or some of the various aspects associated with POTS, and it's tough 'cause we don't even really know exactly what POTS is. That's why it's considered a syndrome and not a disease. We do not exactly know the mechanism of action, and there are not many studies about diet or nutrition in POTS patients, not to mention the fact that many POTS patients have different comorbidities that make the picture even more complex.

02:57 Mike (Host): OK, so it depends. So, what I heard is it depends. I also heard that if your career nutrition doesn't work out, you could think about becoming a lawyer. So there are lots of caveats there, and all every POTS patient is different, and everything needs to be taken with the idea that your mileage may vary. However, I know you and I know how optimistic you are about the power of nutrition to help.

03:23 Jill: Yeah, because even though POTS nutritional research is sparse, there are lots of findings, lots of theories about how nutrition can affect many things that POTS patients commonly struggle with, like pain, inflammation, sleep issues, mental health is a big one, blood sugar regulation, weight maintenance, and all kinds of things. So I'm not optimistic that nutrition can cure pots by any means and I wouldn't even say that everyone can definitely find things to be life changing. But what I would say is that there's often something that can be tried safely, very low risk, to feel better in some way or another.

04:07 Mike (Host): OK. So, speaking of trying things, I think our kitchen is part food preparation area and part laboratory. I'm always seeing you trying something new, and you seem to always have a new dietary experiment going.

04:22 Jill: Yeah, and I think self experiments are key because everybody is so different, you know. Not only is each POTS patients’ POTS different, but many patients are dealing with their own mix of comorbidities that may affect their ability to eat or digest or eliminate or even just go grocery shopping and prepare food.

04:46 Mike (Host): OK, so when you talk about comorbidities, are we talking about MCAS and EDS?

04:52 Jill: Yeah, mass cell activation syndrome, Ehlers Danlos Syndrome, joint, hyper mobility disorders, but there's a lot of other ones too, you know, gastroparesis means that the stomach is not moving properly. There's gut motility issues - either too fast or too slow. IBS is common in POTS patients. We know that autoimmune conditions are more common in POTS patients. And some of those effect diet or digestion more than others. We know that POTS patients have higher rates of celiac disease, median arcuate ligament syndrome, which can make eating painful, and pretty often patients don't even necessarily have a diagnosis or answers about what else is going on. They just know that various aspects of eating is really challenging for them.

So, I have to say that in 20 plus years of working with different populations, POTS patients on average definitely have the most different challenges around food. So that's why I think that self experiments are basically the best we can do at this point 'cause we have so few definitive answers.

06:06 Mike (Host): OK, so we're going to put some structure on that here in a second. But let's hit pause for a sec before we go down this rabbit hole too far and remind everybody that this is not medical or dietary advice, and this is meant for informational purposes, and each patient should consult their own medical team about what's right for them. I think it's pretty clear that POTS is different depending on the POTSie. And so, but today we're going to talk about is something that is one of the really big issues in POTS, which is low blood volume. So, can you tell us what that is? And why it's a problem with POTS patients?

06:45 Jill: Sure, low blood volume just literally means having less blood than a usual amount, and so you know the great POTS doctor, Dr. Satish Raj has really studied this and he has mentioned in presentations that, at least at the time, he estimated that about 75 to 80% of POTS patients have low blood volume.

[Transcriber’s note: Dr. Raj is a well-known POTS cardiologist at the University of Calgary and the founder of the Calgary Autonomic Investigation & Management Clinic.]

And the reason is thought to be that our kidneys flush out too much salt and fluids, which the body needs to maintain a proper quantity of blood plasma - that's the liquid part of the blood.

07:24 Mike (Host): So, the kidneys, so the kidneys have been the problem all along. This feels like a big reveal in an Agatha Christie novel - the kidneys were the problem. Is that true?

07:38 Jill: Well, they appear to be part of the problem in some of the patients, and, you know, other things get mentioned as well, things like a hyperadrenergic state or neuropathy or mast cell activation. Now there's a whole big set of things that can play into POTS. But, it does appear that in many POTS patients that there is a set of three hormones: renin, angiotensin, and aldosterone, which are supposed to work together to regulate blood volume, and they're supposed to recycle a certain amount of salt. And fluids in the body always follow the salt, and so these hormones appear to be misbehaving in POTS patients.

08:25 Mike (Host): A-ha. OK, so let's invite the metric system into this discussion and talk volume here. So how much blood does a typical person have? And how much less blood do POTS patients typically have?

08:39 Jill: Well, people vary a lot and it depends on height, weight, gender, and activity level. You know, a really huge active guy will have more blood volume than a tiny female who's not very active, but the average-sized person has about 5 liters of blood normally, and Dr. Raj’s studies in 2005 and 2021 found that POTS patients, on average, had about a 12 to 13% deficit in blood plasma volume. So again, the blood plasma is the liquid part of the blood. And so it added up to a total deficit of about 1/3 of a liter.

[Transcriber’s note: You can read Dr. Raj’s 2005 study here: https://www.ahajournals.org/doi/10.1161/01.cir.0000160356.97313.5d and the 2021 study here: https://pubmed.ncbi.nlm.nih.gov/33926653/]

Now, that doesn't sound like that much volume to me, you know, just being 1/3 of a liter short, but apparently it is. Dr. Raj’s 2005 paper wrote that it represents a moderate to severe hypovolemia. And incidentally, he found that red blood cell volume was also low in POTS, in addition to low plasma. So that's just a different part of the blood.

However, I should mention that there was also a lot of variation between patients. They measured 13 POTS patients and one had higher than expected blood volume and the lowest blood plasma volume was at a 27% deficit. So that person probably was, you know, getting pretty dizzy when they stood up, I would imagine. But once again, we're just all different and not every POTS patient had low blood volume, but the average was a 12 to 13% deficit.

10:17 Mike (Host): OK so 12 to 13% less blood, which is about 1/3 of a liter. So that, I have to say, that's a pretty underwhelming number. How could that result in POTS?

10:29 Jill Right. So if you think about what having less blood means for a minute, imagine the body with its many miles and miles of blood vessels and every body part needs circulation constantly, right? The brain is hungry for energy. The digestive tract needs blood to digest. Muscles need blood to contract, your fingertips need it or else they get cold. And of course you need to be able to send blood out to your surface area when it's hot so that you can sweat and release heat. Your heart needs to be getting plenty of blood so that I can keep pumping.

And so if you don't have quite enough blood volume, then the heart has to work harder to circulate whatever you do have. Somebody parts might not be getting all the circulation that they would like, and the body appears that it sometimes goes into a state of more sympathetic activation or that fight or flight response as an attempt to increase circulation.

So especially when a POTS patient is upright, and the brain is one of those organs not getting all the circulation that it wants, that is thought to contribute to a lot of the common POTS symptoms that we know and hate – tachycardia, as the heart works harder; dizziness and brain fog, as the brain maybe doesn't get enough circulation; digestion problems; nausea; shakiness - those things might happen if the digestive tract is not getting enough blood or were getting too much of a sympathetic state, you know that fight or flight that deprioritizes digestion. Weakness could happen.

And, you know, so a lot of these symptoms are thought to be connected to low blood volume. And, you know, as we said, POTS is really complex and there may be other big contributing factors to all these symptoms, but blood volume is thought to be one of them.

12:30 Mike (Host): OK, so blood volume is a huge deal, right? So that's interesting to hear about the mechanism that could cause low blood volume to result in all of that stuff happening. So, the question now becomes, what do we do about it?

12:44 Jill: Yeah, so this is where the common advice to try gradually increasing salt and fluid intake comes in. And, the 2015 expert consensus statement on POTS says that patients with hypovolemia should drink at least two to three liters of water per day and dietary salt intake should be increased to approximately 10 to 12 grams, if tolerated. Although if you read this article carefully, in another part of the exact same publication, they phrase the advice a little more cautiously, and they say “the consumption of up to two to three liters of water and 10-12 grams of salt may be considered.”

[Transcriber’s note: You can find the 2015 consensus here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5267948/]

13:33 Mike (Host): OK, so let's pause right there. So we're going to come back to exactly what that all means and how much salt and fluid we're actually talking about here, but can we back up and just say, why would you take salt? Why would salt help blood volume? I get why more liquid or fluid would. But why would salt?

13:54 Jill: Because salt attracts fluid. So, if you want to keep fluid in the bloodstream, you need salt in the bloodstream, and so those two always go together. So if that renin, aldosterone, angiotensin, trio of hormones is throwing out too much salt, too much fluid goes with it. And so you want to replace both.

14:15 Mike (Host): Got it, OK. So to sum up, with a consensus statement said, two to three liters of water per day and salt intake increased to approximately 10 to 12 grams per day, if tolerated. But like you said, there is a little bit of squishiness around that it. May be a little bit of disagreement on how high that number actually ought to be, but how much is that?

14:40 Jill: Yeah, so for reference, 12 grams of salt - that upper limit - is about 2 teaspoons of salt and many doctors, in my experience, will give their POTS patient a target to aim for, especially if they have any concerns about blood pressure. And so the most common recommendations that I see from physicians is for patients to aim for 6, 8, or 10 grams of salt. I've actually never seen a doctor recommend the full 12 gram maximum. And again I just want to emphasize that making any changes gradually is key, in case you don't tolerate that much or in case it were to raise blood pressure too.

The last thing I guess, I just want to say is just like we said, salt and fluids go together. We never want to drastically increase fluids without also increasing salt, because theoretically if someone drinks a whole lot of water without salt, then the salt in the bloodstream can get too diluted. And then water goes to the brain and we don't want that.

15:45 Mike (Host): Right. So is that the same thing that we hear about happening being at marathons on hot days where people are drinking tons of water and not enough salt and people who actually have even died of drinking too much water?

15:57 Jill: I mean, it's rare, but it's possible, and it's called hyponatremia. Basically, too little salt for too much water. And, on occasion, I do talk to patients who are maybe getting a little confused about the fluid instructions, and they think they're just supposed to drink as much water as possible. And sometimes they'll be up at 10 liters a day. Last week I spoke to a woman drinking 14 liters of water per day. And that is too much.

There are reasons why POTS patients can sometimes have very dry mouths and be very thirsty, like Sjogren's syndrome, which is a common comorbidity. Even just high stress can give you a really dry mouth. Sometimes I encounter patients who - they want to be really hydrated, but they've heard that salt is unhealthy, so they're just trying to do all the water but without the salt. And so just to emphasize it, you never want to greatly increase your water without the salt being proportional to it.

17:02 Mike (Host): OK. Can you do better than water? I mean, what about Gatorade? Is that preferable to water?

17:07 Jill: Yeah, so anecdotally many doctors recommend getting about half the fluids from water and half from electrolyte drinks or sports drinks. And all drinks except alcohol are hydrating, but some do hydrate us faster and more efficiently than others. So, for example, most sports drinks are designed to hydrate you ASAP, and so they're specially designed with salt plus between 6 and 8% sugar by weight. And those are shown to leave the stomach and hydrate you faster than plain water and faster than more sugary drinks, like fruit juice or soda, which are more like 12% sugar.

So, if you're staying ahead of your hydration and doing a good job, then I think most people don't need the fastest hydration all the time. They could, you know, largely find whatever feels best to them. But if you fall behind and you’re on the floor and you can't stand up, you know I've been there, then a sports drink with both salt and a little sugar is theoretically most efficient.

I personally try to limit drinks with artificial food coloring, artificial flavors, citric acid, or drinks that come in single use plastic bottles 'cause those things may not be great for my autoimmunity, but I could talk more about that later.

18:32 Mike (Host): Yeah, so let's return to the plastic bottle question later. I feel like if you're drinking so much, you’re gonna probably have some of that passing through plastic, and I think we'll come back to that. And we'll certainly talk about autoimmunity nutrition for autoimmunity in a future episode, but for now I want to make sure that we understand the difference between salt and sodium. Now, you never see salt on a label, you see sodium. And I understand that sodium is in salt, but it's not all of salt. So how does that work?

19:00 Jill: Yeah, this is important and even sometimes you see the medical authorities getting this mixed up. Salt is not the same as sodium. Salt is sodium chloride, NaCl. It's only about 40% sodium by weight and it's 60% chloride. So that means if you have a target of 10 grams of salt, that is only four grams, or 4000 milligrams, of sodium. So, it's important that we remember that. And like you said, it gets tricky because the nutrition labels on food package are going to tell you sodium in milligrams instead of salt in grams, which is what the POTS world uses. So you have to do a little math if you're trying to count exactly how much you're eating.

19:53 Mike (Host): This is almost designed to be confusing 'cause the other thing is that milligrams, there's 1000 milligrams in a in a gram, as opposed to a million, which is what it sounds like it ought to be. So, there's that metric system again. But so 10 grams of salt is approximately 4 grams of sodium, and how much is that compared to say, the average American diet?

20:17 Jill: So, the average American eats 3400 milligrams of sodium per day. It's not recommended that they eat that much, but that's what they do. The recommendations are closer to between 1500 and 2300 milligrams per day. So this 4,000 milligrams of sodium, that would be in 10 grams of salt is not - it's not like orders of magnitude higher than what the average American eats, it’s really only a little higher than what the average American eats. So for many POTS patients, if you're able to eat pretty normally, it's not that big of a deal. But since many POTS patients have so much difficulty just eating much of anything, that's when it can get really difficult.

21:03 Mike (Host): Got it, OK. And let's say you had the following problem: let's say you just couldn't - you didn't enjoy the taste of that much salt, it was just unpalatable to you and it made your taste buds hurt. Is there something else we can do to get this salt?

21:17 Jill: Yeah, salt pills can be tried, and those work great for lots of people. They do give some people stomach aches, but they can be tried. I just want to make sure, especially if you're going to try salt pills, that it's really important not to confuse salt with sodium, right? You want to aim for 10 grams of salt. If you were to get confused and aimed for 10 grams of sodium, that would be 25 grams salt, or almost 5 teaspoons, and that's way too much. However, even one of the major websites about a major POTS clinic has it backwards, and they've had it backwards for years. So especially if you're taking salt pills, it's 10 grams salt max, not sodium.

22:04 Mike (Host): OK, alright. We'll come back to this a few times and we'll kind of drill this home, 'cause I think it is pretty important, but let's – let's move on and talk about the effect size. So, let's say you were to dial in your salt intake and you get it perfect and it's working great for you and it's sustainable and it's palatable and all that. How much is it going to help?

22:23 Jill: So, Dr. Satish Raj has done some beautiful studies on the effects of salt intake on blood volume where he brought regular people and POTS patients into a residential eating situation where all the food was provided, and he had them do two separate six-day stays with them. So on 1 six-day stint, they got a very low salt diet with only half of a gram of salt per day. And then on a different six-day diet, they were served 18 grams of salt per day. Some did the high salt trial first, some did the low salt trial first, but everybody did both trials so that they could compare their blood volume, their change in heart rate from lying down to standing up, and a couple other measures.

23:12 Mike (Host): OK. So, half a gram of salt to 18 grams. So, we're going to return to that in a second, 'cause that 18 is a lot bigger than 10. So we'll come back to that in a second. But what were the results?

23:24 Jill: So, his article reported that on average - this is his article from 2021 - the super high salt diet helped patients make up about half the deficit in plasma volume.

[Transcriber’s note: the link to the 2021 study is provided above.]

So, they were not back to normal, but instead of a 12 to 13% deficit on average, they now only had a 4 to 5% deficit on average. And so this study also showed that a super high salt diet improved patients standing norepinephrine, somewhat - that's that hyperadrenergic response to being upright. And it also helped standing tachycardia, so that they had less of an increase in their heart rate when they were up right. But it did not get them all the way back to normal.

24:17 Mike (Host): OK. So it sounds like what volume got about halfway back to normal and their symptoms got “somewhat back to normal” and that was with 18 grams of salt. So why wouldn't I just eat 36 grams of salt and see if that got me there?

24:42 Jill: Well, yeah. Theoretically, very high salt diets over a long period of time in other populations have been associated with some negative things besides just high blood pressure. You know, like stomach cancer, osteoporosis, so it's not clear that more would just be better over the long term. That probably needs more research. In the meantime, for myself, I've used trial and error to look for the minimum effective dose. But I think you make a really good point that, in this study, the findings were great for showing that a super high salt diet helped compared to an extremely low salt diet. But unfortunately the amount of salt used, you know, half a gram per day for the low and 18 grams a day for the high, are both beyond the extremes of what POTS patients would actually do. So, I would love to see the effect size when a patient goes from a more average salt intake of, say like 5 grams, to the higher end of the recommended limit, like 10 or 12 grams. And I hope they're planning that study next. So you know the answer is that I think to find out what the effect size is for you, you need to try it yourself.

25:54 Mike (Host): Got it, OK. So let's talk about sources of salt, so there's obviously a lot of them out there. If you walk through the grocery store, you'll see sea salt, and there's kosher salt, and some of its iodized, and some of it's not, and you can get stuff in liquid form, and of course there's the crystals and all that kind of stuff. And then there's all the salt in food. So how do you want to get it?

26:13 Jill: Yeah, so the average American is getting about 70% of their sodium from processed foods, and that's not ideal 'cause processed foods are not that healthy. So, sprinkling real salt on real food is better. There's no studies as far as I know of comparing, you know, the health of sea salt to kosher salt to iodized salt to Himalayan salt. We do know that iodized salt is designed to give you the RDA of iodine in about 3/4 of a teaspoon. So if you don't have any other sources of iodine in your diet, like seafood or sea vegetables, you might consider using partly iodized salt for that.

There have been some findings showing that sea salt does contain some microplastics because our oceans are unfortunately filling up with plastic. And while the studies always conclude that it's no big deal and that it's a negligible amount of plastic, I always feel like why put more plastic? We know it's unhealthy. It's an endocrine disruptor. Why do that if there's other options? So, for myself, I choose Himalayan salt or Utah real salt in hopes of avoiding the microplastics and getting the few trace minerals along with the salt.

27:31 Mike (Host): Aha, OK. So, a minute ago we talked about a few of the potential downsides of having too much salt. But there is one that you didn't mention that I remember you thinking about a few years ago and that was autoimmunity - that a high salt diet could potentially exacerbate autoimmune problems, which you have in which I know a lot of POTSies have. So is that still an issue or are you still concerned about that?

27:56 Jill: Well, I think I'm less concerned than I was, but it's still too early to really know for sure. So, the reason I was concerned was that some very nice studies in the journal, Nature, like one of the top science journals, reported that salt makes TH-17 cells proliferate like crazy, and those are part of the immune system associated with autoimmunity. And then they also showed a high salt diet caused autoimmunity in mice. And we know, thanks to Dr. Svetlana Blitshteyn’s work, that POTS patients already have higher rates of autoimmune disorders and autoimmune markers.

[Transcriber’s note: Dr. Blitshteyn, a well-known POTS neuroligist, runs the Dysautonomia Clinic.]

And we know that POTS is suspected to have an autoimmune basis in many of us, so I was concerned that if the findings in mice applied to humans, and I know that's a big “if”, then we were in sort of this catch-22 where we need extra salt to keep our heads up throughout the day, but that we could be making tomorrow's autoimmunity worse.

Now, I'm a bit less concerned now because another study recently came out showing that excess salt in the presence of extra potassium - that's another mineral - then it did not seem to promote autoimmunity. So that was very reassuring to me. If potassium is protective, to me that suggests that I should eat my salt on top of a nutritious diet because potassium is in loads of healthy foods. It's in fruits, veggies, beans, yogurt, all kinds of things. It's also in sports drinks. It's in Vitassium salt pills. So these were just a couple of studies and it's really too soon to draw big conclusions, but I'm keeping an eye out for any more information on that and I would mention it in the podcast if anything else comes out.

29:48 Mike (Host): OK, so this starts to shed some light on the very salty cold zucchini we have in our refrigerator pretty much all the time.

29:56 Jill: [Laughs] Yes, zucchini’s a good source of potassium and I just find it very, very nice and hydrating.

30:04 Mike (Host): So, we've talked a lot about salt. What else can somebody do to boost their blood volume?

30:09 Jill: Well, I know many POTS patients are not able to tolerate exercise, but for the ones who are, exercise is shown to boost blood volume. Compression gear does not increase blood volume, but it redistributes it to help it stay in circulation, instead of pooling in the lower body. And we know that abdominal compression is probably the most helpful, since the abdomen is where the most blood can pool. And then a third one is to avoid diuretics, and a diuretic is something that flushes fluids out of your body. Alcohol is a big one. Vinegar is a milder one and most people are not eating tons of vinegar. But you know, I know some people are really into their apple cider vinegar routines, and so theoretically, you know, you might want to experiment and see if you feel like you are better off without that, if you do much. Caffeine can be a diuretic at first, but as your body adjusts to it over a couple weeks, it is thought to lose its diuretic effect. So, if you already have an established coffee or tea habit, then that should be hydrating at this point.

31:24 Mike (Host): OK, so is that a stamp of approval for coffee?

31:26 Jill: Well again, it might pay to do some self-experiments with caffeine - coffee, tea, whatever - because some people feel better and some people feel worse and there's a few factors that might affect POTS. A) Of course, it's a stimulant, so it gives energy and some people like that if their fatigue is bad. It's also a vasoconstrictor, so it can help blood vessels tighten and send blood upwards, but it can also increase sympathetic tone and make you feel even more edgy or jittery or high adrenaline, so some patients find that if they can, you know, find that perfect amount, then they can, you know, find the perfect balance between all these things. And I would just also mention that caffeine tolerance may change from day to day based on whether you're having a stressful day versus a relaxed day. And so I always check my email in the morning first before drinking my green tea, and if anything stressful has come up then I skip the caffeine because I can't afford to have that on top of the inevitable adrenaline.

32:35 Mike (Host): Oh, I can't imagine anything stressful ever coming up in the world. Let's talk about alcoholic beverages. So you've already mentioned them once or twice, and with a fairly negative tone. Are you going to stick to that?

32:48 Jill: Well, honestly, the only consistent nutrition anecdote I've ever heard with POTS patients is that everyone I've ever talked to feels worse with alcohol. I've never talked to someone who felt better. Now of course, you know, everyone’s mileage may vary, but in theory alcohol can be a triple whammy to a POTS patient because it's a diuretic, as we talked about, makes you less hydrated, it's a vasodilator, so it can exacerbate blood pooling, and it's often a mast cell trigger for the people struggling with MCAS.

33:25 Mike (Host): OK. Any other foods that you think people should know about as tools for boosting blood volume?

33:31 Jill: Well, yeah. I'd say it's good to remember that fruits and vegetables are 80% and 90%, roughly, water by weight. And so eating watery foods, you know, those foods are great for gut health and a bunch of other reasons too, so I know many people can't tolerate a lot of foods. But if you can, that's another way, you know, eating your water is great because it comes packaged with its own minerals. Veggie soup is a wonderful way to hydrate or brothy soups. I guess one more thing is that adequate protein keeps fluid in the blood vessels, but excessive animal protein or very low carb diets can make it harder to stay hydrated. People on ketogenic diets need to work harder to stay hydrated because carbohydrates do help us absorb fluids. You know, they didn't make Gatorade because, you know, that tasted good. You know, they actually did a ton of research to figure out that that amount of sugar is ideal for hydration. And so when we go on really low carb diets, it does make it tougher to hydrate.

34:41 Mike (Host): Aha, OK. So when we travel - which is pretty rare and it's your least favorite thing to do - but we do it every once in a while, you're always traveling with a couple little bags of licorice tea. And my understanding is that has something to do with blood volume, what's going on there?

34:58 Jill: Yeah, licorice is known to boost blood volume. It works kind of like the drug Florinef, which some POTS patients take because it does make your body hang on to some extra salt in fluids, but you need to be a little careful or talk to your doctor if you're going to do it on a regular basis, or do it very much, and that's because it can also make you flush out potassium and you don't want your electrolytes out of balance.

[Transcriber’s note: Florinef is the brand name for the generic drug, fludrocortisone.]

So, some people are more sensitive to this than others. And sometimes doctors will occasionally check potassium levels, if you want to make it a regular thing. But for an occasional boost like on a travel day, I find it's a helpful trick for me. And I've heard of some patients who like licorice lollipops and, you know, none of this stuff is regulated by the FDA. So again, you know, be careful as you experiment or talk to your doctor, but I do find it a helpful little boost for me.

36:02 Mike (Host): OK. So earlier we said we were going to come back to plastic bottles. I'm going to give you a platform to rant about plastic bottles here for a second, but, hey, if they say BPA-free, doesn't that mean that everything is cool?

36:16 Jill: No, it does not. “BPA-free” makes me angry [Laughs] because it gives us an illusion of safety, when in fact the opposite is true. But to back up, when we POTS patients are drinking so much I think it's valuable to avoid plastic containers when we can. I know that it's inevitable sometimes. We have those emergencies, we just need to buy water, but research by Dr. Datis Kharrazian and others has shown that ingesting plastic can contribute to autoimmunity, which we know is already a higher risk among POTS patients.

[Transcriber’s note: You can read Dr. Kharrazian’s study here: https://pubmed.ncbi.nlm.nih.gov/24804084/ ]

And it used to be that soft plastic containers were mostly made from BPA - Bisphenol A - and we learned that that was really unhealthy. It's an endocrine disruptor, meaning it can disturb hormones. It can cause inflammation and lots more. So, companies replaced BPA with other Bisphenol chemicals, like BPB through Z. Just different forms of plastic chemicals that were later found to be just as bad or worse. So, BPA does not mean free from harmful chemicals. And ideally if we can use glass or porcelain or steel containers for fluids, that's better.

We're going to use sports drinks, you know, we can get the kind that comes in a powder and we can make our own instead of having to buy it in the plastic bottle. And then, especially if the drink is hot like coffee, then drinking through a plastic lid is something that we probably don't want to do because the heat can help the plastic chemicals dissolve. So, you know, the average American is eating about a credit card’s worth of plastic a week. And so everyone is doing it, but if you have opportunities to cut back on that it's probably not a bad idea.

38:08 Mike (Host): Yeah, I was drinking coffee through those plastic lids until you ridiculed me a couple years ago and I've quit ever since then and I'm happier for it. So, thank you for that. Now, before you started focusing on POTS patients and MCAS patients in your nutrition work, you used to do a lot of work with athletes and people that had sort of sports nutrition needs and a lot of what they were concerned about was also hydration and blood volume. So are there any tricks from sports nutrition that we could possibly use here?

38:39 Jill: Yeah. Now, this hasn't been studied in POTS patients, but it's something that POTS patients could certainly try. And so what athletes will do oftentimes on like a day with a big game or a marathon to be really well hydrated is to start the day by chugging two cups of fluids pretty fast and then sipping every 15 minutes or so after that. And that can help train your digestive system to release the water faster, to hydrate you a little faster, and it also has the benefit of just front loading your liquids in the day because so many POTS patients as we've discussed, have trouble sleeping. So ideally, if you do your hydration earlier in the day, then it can not only help you have blood volume for the meat of the day, but then help you not get up to pee so often at night.

And you know that kind of reminds me that there's one other finding - it's not among POTS patients, but in the, you know, “normal population” it's typically recommended not to drink more than three cups of fluids per hour because it may overwork the kidneys. And when I learned that I was kind of like, “Whoa, I've been doing that for years all the time.” So again, I don't know if it applies to POTS patients or not, but all things being equal, I assume it is better for us to sip continuously throughout the day with some front loading toward the beginning of the day, rather than to get behind and then to do a whole bunch in a short amount of time.

40:13 Mike (Host): So, a little chugging early in the day might help, but don't make a lifestyle out of it. That's kind of what I'm hearing here. That's interesting. OK, wow. That is a lot of information on boosting blood volume. I want to kind of wrap this up by returning to kind of the motivator behind all this. So, maybe you can just sort of sum up and remind us why boosting blood volume is such a big deal for people with POTS.

40:40 Jill: Sure, the way I think about it is that POTS patients often have a double whammy of low blood volume, which is just literally not enough blood, and then also the inability to properly vasoconstrictor blood vessels. So the blood we do have pools at the mercy of gravity. So more blood volume means more circulation, including to the brain, which may help reduce that fight or flight reaction. It means the heart doesn't have to work so hard and it means that maybe the entire body just has more access to more circulation for less work. Again, not every POTS patient has low blood volume. So, it may not help every single POTS patient to do this extra fluid and salt, but the thinking is that for many of us it could help a lot of our symptoms.

41:35 Mike (Host): All right. So boosting blood volume is really kind of the tip of the iceberg in POTS nutrition, and we kind of went deep on it today, because it's it's pretty fundamental and it's something that a lot of people can really relate to, but there's a lot of nutrition strategies that might help other aspects of having POTS. So, why don't you name a few and these are things that we'll be covering in other episodes, but why don't you give us a preview.

41:59 Jill: OK, perfect, yeah. And I think we probably won't go so deep on those because on the rest the studies are not really on POTS patients. And so we'll just be going over those in a lot less detail. But yeah, the nutrition literature has quite a bit to say about strategies for better sleep and fighting insomnia, reducing inflammation and musculoskeletal pain, dealing with mast cell activation syndrome. There's not a lot of research on gastroparesis diets, but there's some expert guidance. Autoimmunity is a big emerging field where there's some good evidence and some big theories. I think blood sugar regulation is emerging as an issue among POTS patients, and that is very well studied in other populations. So we can probably borrow a lot of the findings. Gut motility, irritable bowel syndrome, migraines, premenstrual syndrome - there's there's a lot. I hope that people will write in to us and let us know what they're interested in.

42:58 Mike (Host): Great. Well, thank you so much. To listeners, if you have any topics that you think would be most beneficial for Jill to cover next, we hope you'll write in and share that with us at potscast@standinguptopots.org.

So, remember that this is for informational purposes only. None of this is meant as medical or dietary advice for you personally, and that you should speak with your medical team about what's right for you. Every POTSie different from every other POTSie. Please subscribe to this podcast because it really helps us to get found by other listeners like you. But otherwise, thank you so much for listening. Remember that you are not alone, and please join us again very soon.

43:44 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle, @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS.

© 2021 Standing Up to POTS. All rights reserved.

[Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please email volunteer@standinguptopots.org.]