Episode 19 – Sleep Issues in POTS Link: https://tinyurl.com/49vtskhe

00:00:01 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.

00:00:29 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we have a really important topic. It may affect how you spend 1/3 of your life. We're talking about POTS and sleep with the always wise and wonderful Dr. Cathy Pederson. You'll recall she's a neurobiology professor, a POTS researcher, a POTS parent, and founder and president of Standing Up to POTS. She has published at least two peer reviewed journal articles that I know of about sleep and POTS, and I'm proud to say I got to assist her. So she really understands sleep problems in POTS both personally and professionally. Dr. Pederson, thank you so much for joining us today.

00:01:16 Dr. Cathy Pederson: It is always my pleasure, Jill.

00:01:19 Jill (Standing Up to POTS): So, discussing sleep on this podcast is extra near and dear to my heart, because POTS sleep problems were the very thing that made me fall in love with podcasts years ago. I'd listen all night long and it was so nice to feel less alone and maybe learn something or get some laughs. And the main thing was just to have the time pass faster, because I swear that time slows down when you're unable to sleep. So podcasts really helped me cope. So if there's any POTS patients out there listening to this in the middle of the night because you can't sleep, this episode is for you, so let's get into it. Dr. Pederson, are sleep problems common in POTS patients?

00:02:03 Dr. Cathy Pederson: They are. Gosh, I hope we don't put people to sleep while we're doing this, but if it's the middle of the night, maybe it's a good thing.

00:02:07 Jill (Standing Up to POTS): I hope we do.

00:02:10 Dr. Cathy Pederson: Yeah, I think sleep problems are really common in POTS patients, and I I know that you have had problems sleeping and my daughter has had problems sleeping. And you and I did a study where we found that almost 100% of POTS patients reported sleep issues. It was 98.4%. So this is a huge problem. There are other studies, apart from what you and I have done together, that show that when people go into the sleep labs - and I bet a lot of our listeners have done that where they go in and get hooked up to the EEG and all this monitoring and then try to sleep at night. It shows though that people with POTS have problems with what's called sleep efficiency, and that's a funny term, I think. But what we mean by sleep efficiency is the time that you actually sleep during the night divided by the time that you spent in bed. So for example, you might have slept 6 hours last night, but you actually spent 10 hours in bed. So you were tossing and turning for 4 of those hours. You actually slept for six. And that would give you a sleep efficiency of 60%. And so we see that people with POTS do have problems with this sleep efficiency being much lower than what we would like. These studies in the sleep lab also showed that people with POTS had what was called sleep fragmentation, meaning that they were waking up during the night. So they might sleep two or three hours and then they wake up and then maybe they fall back to sleep for another two or three hours and then they wake up again. So they're not sleeping a solid eight or nine hours at a time. And then the third thing that some of these researchers have found in the sleep lab is that when they look at the EEG, the recordings of our brain waves, that even when POTS patients are asleep, they spend more time in something called stage 2 of non-REM sleep – non rapid eye movement sleep. And this sleep is important. Stage two is relatively high, so that's not a good deep sleep. They also found that people with POTS spent less time in what's called REM sleep, or rapid eye movement sleep. And this is the one that everyone wants, 'cause that's where you have your dreams. And we do a lot of processing of what's happened throughout the day or the week or the month during that REM sleep. So, lots of changes are seen when we bring people into a sleep lab, hook them up, and then see how they're actually sleeping at night.

00:04:52 Jill (Standing Up to POTS): So, this sounds maybe not that surprising to me. When we talk about autonomic functions, sleep is just one more, so of course it would be messed up in POTS patients, right? So we did a survey of over 700 patients. What did we find?

00:05:11 Dr. Cathy Pederson: Yeah. We did one of the largest studies to that point of people asking about their sleep. It was a little different. We were not bringing people into a sleep lab. We were using a survey that we distributed through our website and also through some of the POTS groups. So again, thank you to our listeners who fill out these surveys for us. We really do publish these. We really do work our way through this information, so I appreciate that that you all do that. And what we found was, again, that 98.4% of people with POTS reported poor sleep quality. And as Jill said, I don't think that's a surprise everyone out there listening, probably going, “Yep, that's me.” When we looked at sleep efficiency, it was 65%. That's pretty terrible, and what we actually found, the actual numbers, were that POTS patients reported sleeping about 6 hours per night, but they reported being in bed for about 9 1/2 hours. So again, they're spending about 3 ½ hours tossing and turning looking at the alarm clock, frustrated that they're not sleeping. So a sleep efficiency of 65% is not good. That's why people are feeling tired, or at least part of the reason, and everything sort of goes downhill when we don't get a good night's sleep. The other thing that POTS patients reported in that study is that most people had a lot of trouble falling asleep at night. So they call that “sleep onset latency,” but it basically is the time from getting into bed until the time that you fall asleep. And in our POTS patients it was about 2 1/2 hours. And so again, a lot of our listeners are probably, “Right here that's me,” right? And we did have controls here too. And so when we compared the POTS patients to the healthy controls, the sleep scores again, unsurprisingly, were worse in those POTS patients. And then the last thing I'll say here is that about 69% of people woke up in the middle of the night or early morning. So not only was it taking a long time to fall asleep, almost 70% were waking up in the middle of the night, again that idea of sleep fragmentation, where they're sleeping a few hours, then they're waking up and then maybe it takes them a while to drift back off again.

00:07:36 Jill (Standing Up to POTS): Right, and I think a lot of POTS patients talk about how they feel so fatigued for most of the day, and then come nighttime when they would like to be getting sleepy, that's when they actually feel their best and they start to feel kind of normal. And so that's sort of an interesting phenomenon that doesn't make this any easier. I think we had one more finding about pain that I think you didn't mention that kind of blows my mind. Do you want to report with that was?

00:08:07 Dr. Cathy Pederson: I do. So when you're looking at poor sleep patterns and POTS patients, I think there are a few things that are going on. But the one that we found in our study was that more than half - so the actual number was 53% - but more than half of POTS patients were awakened by pain at least 3 times a week. Let me say that again more than half of POTS patients in our study were awakened by pain at least 3 times per week. And so pain is a significant problem here, and I have to say this was a problem for my daughter. She had tremendous pain in her legs and for a long time it was a 9 out of 10. I mean really, really impenetrable pain. We tried all kinds of medications to try to stop this pain. And where it was particularly problematic for her was at night. She couldn't fall asleep above the pain sensation that was in her legs. So that can be part of that trouble falling asleep at night, but what we found also was that people were awakened in the middle of the night by pain. So that could be neuropathic pain. It could be migraine. It could be abdominal pain. It could be other kinds of pain. But pain control is really important in dealing with sleep. I think another thing that can affect poor sleep patterns for people with POTS are sympathetic surges at night. You know this idea that that darn autonomic nervous system is dysregulated, it's not working properly, and I think we've talked before about the sympathetic nervous system being your fight or flight system. And so when people have these sympathetic surges at night, it's like surges of adrenaline going through their body. And I know this is a particular problem for my daughter. She actually takes some things to help with that. I'll come back and talk about that, but if she forgets to take that medicine, she doesn’t sleep. And at one or two in the morning, sometimes she'll come downstairs and she's like, “Ah! I forgot to take my bedtime medicines.” And then the last one that could really contribute to these poor sleep patterns and POTS patients are medications that we're taking. It's important to ask your health care practitioner, “Is there any medication that I'm taking, especially at dinner time or at bedtime, that might be keeping me up at night?” I have to say, my daughter has mast cell activation syndrome. She was taking a tons of antihistamines. When we backed off of the antihistamines at night - she still takes some at dinner time - but when we cut that in half she started sleeping better. Who would think?

00:10:47 Jill (Standing Up to POTS): And I'm glad that you mentioned the mast cell activation syndrome because some pretty significant percentage of POTS patients have that as well. And we know that the circadian rhythm of mast cells, on average, makes them more active at night, which I always think is so unfair. Because just when you want to rest and relax, it's when your body can torture you. And, you know, it can come in the form of just itching or all kinds of problems. Then, I think a couple of the other comorbidities that can happen to POTS patients, can also create sleep problems, like with some of the joint hyper mobility or the Ehlers Danlos Syndrome. You hear about some people whose joints are so unstable that they can get a joint dislocated just from sleeping wrong. And so, I think that it would be funny, if it weren't so torturous, that if one POTS problem doesn't get you and ruin your sleep, then another one will. (Laughs) So, can you tell us from your point of view, why should sleep disruption be a concern, other than that it's a pain in the neck?

00:12:02 Dr. Cathy Pederson: (Transcriber’s note: trigger warning – this next section discusses the correlation between insomnia and suicidal thoughts) There are real problems associated with insomnia or poor quality of sleep, and one that I think is probably fairly well known is depression. So, if you're having a lot of trouble sleeping, that increases the risk of depression. The second thing, and one that that Jill and I have studied a good deal is that when people suffer from insomnia over long periods of time, that's an increased risk factor for suicide or suicidal behavior as well. And we know if you look at the literature that there's an increased risk of suicide for people with chronic invisible illnesses anyway. So there's a literature that shows increased risk compared with the general population of suicide for chronic fatigue syndrome and myalgic encephalomyelitis. There's also a literature for fibromyalgia and then also for POTS. What role does sleep play in that? I don't know. It's hard to tease that out. We think that there is a role for sleep and the good news is that this is something that maybe we can help with and so we're going to end this podcast talking about strategies that might help get better sleep at night.

00:13:21 Jill (Standing Up to POTS): And I think what you're saying, in effect, is that some of these things can create vicious cycles. So, I know that I've heard some neurologists say that they think that the worse your sleep, the worse your mood, the worst your sleep, and on and on. Same thing with a pain and sleep vicious cycle. So yes, I'm really excited to talk about some of those strategies that you've dug up in the literature about helping maybe break this cycle and maybe even get a virtuous cycle going instead.

00:13:53 Dr. Cathy Pederson: It's a tough one, too, you know. And when you lay in bed and you're not sleeping, it's really frustrating. And that frustration does not help you sleep or drift off to sleep at all.

00:14:05 Jill (Standing Up to POTS): Yeah, so in our study, what did we find about sleep problems and increased suicidal behaviors?

00:14:13 Dr. Cathy Pederson: Right, so in our study it was an alarming number. So we found that about 48% of POTS patients fell into the high-risk group for suicide. Some of you might have listened to an episode that we did on quality of life. This is coming from that same study, so this is the same study that we're looking at here. And this was a really alarming finding. Again, we had sort of heard in anecdotally that there were issues with suicide and suicidal behaviors in the POTS community. This was the first study that Jill and I did that was published anywhere, really looking at suicidal behavior, suicidal thinking, suicide attempts in people with POTS. And so what we found was, again, almost half of POTS patients that we surveyed were in the high-risk group for suicide and the people that were thinking about suicide had some sleep issues. So they tended to have poorer sleep efficiency than POTS patients that were in the low risk group. So those that are in the high risk group - poor sleep efficiency. They also took longer than 30 minutes to fall asleep. So it's normal to take a few minutes to fall asleep. I think there are very few people that lay in bed and are asleep in two minutes. That's unreasonable, but when it was over 30 minutes to fall asleep, we saw increased risk of suicide. Bad dreams - this is interesting. Actually, a literature that shows that people that have nightmares regularly have higher risk of suicide than people who don't. And so that's bad luck. Here you are finally sleeping, you have bad dreams and that can be a trigger. Sleep disruption from pain - so we talked about in this sample a little more than half of people were awakened 3 times a week or more by their pain. And then some of this is the flip side. So what about in the daytime? So all of those were talking about nighttime, right, and problems with sleeping. But people that had trouble staying awake during daytime activities, maybe they're with family or friends. Maybe they're at work or school. Maybe they are wanting to hang out or talk on the phone or visit in some way and they're having trouble staying awake and alert or they're awake, but they can't keep their enthusiasm up. You know, they don't have that umph, that energy, to get the things that they want to do done. And so those were also indicators for people that went were at higher risk for suicide, that fell into the high-risk group for suicide, versus the people that fell into the low-risk group. So sleep is important and it's something that, again, is sometimes more fixable than some other symptoms that many POTS patients have.

00:17:13 Jill (Standing Up to POTS): And I feel like this is where we might actually be a little bit lucky that so many people in the general population struggle with sleep because there's now a pretty good literature out there about what helps or hurts sleep. And so there's a lot of information out there on things that you can try, and I'm excited to talk about it because I feel like now knowing what we know about POTS and sleep, it becomes a priority to take on this whole project of becoming a good sleeper, like acting like it's a skill that you can work on and certainly not everything works for everybody. But luckily you have gone into the literature for us and looked for a lot of things proven to make a difference. So what can be done to help improve sleep quality?

00:18:01 Dr. Cathy Pederson: Yeah, let's start with the bedroom, OK? And I know there are eye rolling going on, I can feel it out there.

00:18:08 Jill (Standing Up to POTS): (Laughs)

00:18:09 Dr. Cathy Pederson: But I just want to be sure that we cover everything here. So you want to make your room as comfortable as you possibly can. So find some soft sheets, warm blankets, whatever it is that you need to feel safe and comfortable and happy as you go into your bedroom and go into your bed at night. Another one, and this sounds a little bit crazy I think, is wash the bedding every week in hot water. And the reason I say this is a lot of people, especially if mast cell activation syndrome is part of the scenario for you, might have some allergies to dust mites or other things that are in that bedroom, and so if you wash those sheets every week in hot water, that can kill those dust mites and hopefully not trigger your allergies and your mast cells at night.

00:19:02 Jill (Standing Up to POTS): I did not know this one. Stop the podcast! I have been itching the last few nights. I'm so happy we talked about this. I'm going to try this. What else you got? This is great.

00:19:10 Dr. Cathy Pederson: I think a lot of us have heard to make the bedroom your bedroom and not your office. I think with COVID that's been hard. I have to say I recorded a lot of lectures in my bedroom over the last year. But if you can avoid that, do. So avoid having your office in your bedroom. Don't have a TV in there. Don't read in your bedroom. We want the bed to be just for sleep. We want to train your brain in your body that when you get into that bed, it's to sleep. Another one, and I find this helpful personally, is to use a fan or a humidifier as white noise. And I don't live in the city, but I live on a very busy country corner and there are lots of people that hot rod around here and dogs barking out in the country. And when I started using just a little $5 fan that doesn't push much air, I really am just using it for that white noise, I sleep a whole lot better. So something like that can be helpful to decrease the sounds in the household, but maybe also those sounds on the street at night. And then the last one, I think it's common sense but I'm going to say it anyway - be sure that that bedroom is dark. Our eyes pick up light and they use that light as a signal to wake up, and so if you can get room darkening curtains, they actually even encourage you to turn that alarm clock with the red or the blue light away from your bed. A lot of us, we want to open one eye and look at it. I don't turn mine all the way around, to be honest, but it's at about 45-degree angle so that it's not moving right towards my face all night long. So we want to make that room as dark as you can to help you to sleep. So these are sort of the easy things that everyone can do. We'll talk in a minute maybe about POTS in particular.

00:21:09 Jill (Standing Up to POTS): And I have I have one more to add to this, which is pet management. I know so many of us love our pets so much and feel like they help us so much and they bring us so much comfort and joy. But I couldn't believe how much better I slept when I started making my dear dog not be near me on the bed. And so there may be little things like that. And then I believe I've seen studies about having your cell phone nearby, even just in the same room, I think has been shown to make it a little tougher to relax, so you may want to experiment with putting that outside in a different room. And finally, there is an amazing article out there called “Missing the Dark” and it talks about the power of a dark bedroom and a dark night sky on our circadian rhythms, and I just wanted to put a finer point on what you had said about a dark bedroom. And this was reviewing all the evidence about how as we progress as a society, we have more lights out there and we don't really have a dark night sky anymore, they think that really is affecting our circadian rhythms. And so they found that even just having a bedroom light enough to see across the room or to see your hand resulted in sleep that was not as deep as if it was so dark that you could not see your hand. And they found some other fascinating results having to do with metabolism and weight gain and cancer risk. But I was really shocked at how having a really, really, very dark bedroom turns out to be way more valuable than I ever would have guessed. If something like room darkening curtains are too expensive, you can even just now get sleeping caps where it will not only go over your eyes, but go over a little bit more of your face so that your entire face is not picking up light 'cause the thinking is that you may even be able to sense a little bit of light in other places than your eyes. And so this was just one article that I read, but it was pretty adamant that that the value of an incredibly dark sleeping experience can make a difference.

00:23:24 Dr. Cathy Pederson: I've seen them even talk about taking a piece of masking tape or something to cover the light on the smoke detector in your bedroom, that that little bit of light can interrupt that sleep. So that's going right back to your point. I'm putting a finer point on your finer point. (Laughs)

00:23:39 Jill (Standing Up to POTS): And to just make it nutty cuckoo, they've measured blood sugar related to how dark the bedroom is and not even getting the light on your eyes, I think it was other parts of your face. And so anyway, darkness - it’s something to try. (Laughs)

00:23:55 Dr. Cathy Pederson: It is, and it's relatively easy and it doesn't have to be big expensive curtains, as you say. You want to have blinds that you can pull down all the way. Maybe you take an extra sheet and put over it. Whatever it takes to try for a week or two weeks and see if that really dark room can help.

00:24:13 Jill (Standing Up to POTS): OK, So what else? What other kinds of things can we try?

00:24:18 Dr. Cathy Pederson: So, I think there are a few other things that we can do to try to improve sleep quality, and one that really helped my daughter - now, I'm not sure there's scientific evidence behind this one to be honest with everybody - but we went on Amazon and bought a 10,000 lumen light. So 10,000 lumens - that's talking about how bright the light is. And it came with a timer. And what you do is you prop it so that the light is not aiming at your face. It's actually aimed at your chest and you leave that on for 20 or 30 minutes. And the idea is that, again, as that light comes into your eyes, it does go back to visual cortex but it also goes to a gland called the pineal gland in in your brain that helps set that circadian rhythm. It also goes into the hypothalamus, the suprachiasmatic nucleus - nobody cares, OK. But anyway, there are archaic parts of our brain that are not involved in vision, but rather this day/night cycle, the circadian rhythm. And so the idea is if you get up first thing in the morning and you use this light that it's waking up your brain. And if you wake up your brain like that and you do this in the morning, not at night - do this in the morning. That'll help you sleep better later. The second thing is exercise - and I know this is touchy for many people in the POTS community. I'm not saying go and run a mile, but whatever your exercise is, it's better to avoid doing that in the evening. Do not exercise in the evening if you're having trouble sleeping at night. The best time research has shown is during the afternoon, so if you're having trouble sleeping, try at your exercise in the afternoon. Ad if you think about it, you're increasing your metabolism, you're maybe getting that sympathetic nervous system jazzed up as you're doing whatever your exercise is. And so if you do that even an hour or two before you go to bed, you're not in a place where it's easy for you to relax. In the evening you want to be sure that you eat your last large meal more than three hours before bedtime. And some people I know like to have a big last meal just a couple of hours, they eat late and then go to bed. But if you're having trouble sleeping, try to move that large meal earlier – at least three hours before you go to bed. And then if you need a little snack later, right, you can do that. When you're thinking about what you want to eat or drink in the evening, you want to avoid, again, caffeine. So no caffeinated tea, coffee, sodas, chocolate, that sort of thing at dinner time or after. One that people may not think about and maybe feel like is an oxymoron is nicotine. And so smoking cigarettes, the active ingredient there - or vaping cigarettes - is nicotine. And nicotine is a stimulant. And I say it's an oxymoron because people often talk about feeling more relaxed when they smoke. But physiologically, that's not what happens. You're actually amping up that system. And then alcohol. That one sort of tricks us. We may fall asleep faster, but then we wake up during the middle of the night. And then the other thing - and this isn't always possible - but if you can avoid anything that's stressful in the evening, that would be a good thing. So that might be paying bills, if that's stressful. It's never fun, that's for sure. Any kind of emotional conversation. If you can do that earlier in the day, or wait until tomorrow might be a better thing. And then any kind of stimulating books or shows on TV or movies.

00:28:01 Jill (Standing Up to POTS): Great stuff, and one more we're hearing about is any kind of screen time in general because the blue light from the screen may mimic the type of light that comes at us around noon time once again telling our brains that it's the middle of the day. So, I think blue light blocking glasses or putting nighttime mode on screens is something that some people are reporting might help them, but I think you found even more things, what else you got?

00:28:34 Dr. Cathy Pederson: Yeah, you know, again, there's this idea of sleep hygiene is what it's called, and I know so many of us have heard this from our doctors and probably have already tried it. But for those of us who haven't, let me just at least talk about briefly what that is. When you think about having children, and especially young children, we have this whole routine to put them to bed, right? You give them dinner and then you play for a little bit and then you have bath time, then you have a snack, and you brush teeth, and then you sit in the rocking chair and read the books, and then you put them to bed. And they learn this routine and they sort of know what to expect. As we grow into adulthood, we sort of forget to do that. And so creating a relaxing bedtime routine, something that gets our body to know that we're going to bed in the next half an hour or hour, can be really important. So as Jill was saying a minute ago, that might be turning off the television, turning off our phones an hour before we go to bed, and read a magazine or a book. I know I try to do that before I go to bed. It might be taking a bath or a warm shower just to try to relax and get rid of the worries of the day. It could be having that snack - you have it, you know, an hour before you go to bed so that you're not hungry as you're laying in bed. And there are actually foods that can help you to sleep. There are foods that are high in an amino acid called tryptophan, and tryptophan is an amino acid that's a precursor to the neurotransmitter serotonin. And serotonin is implicated in mood, but it's also implicated in sleep. So eating things like yogurt before you go to bed might be helpful. One that's really famous on Thanksgiving is turkey. You think about people eating lots of turkey and then they go and put the football game on, and all the men are asleep in an hour, right There's good tryptophan in there. Peanut butter is another one. So have some peanut butter on banana or something like that would be great. Dates and figs. These are very healthy, good snacks to have. Rice actually has tryptophan in it, and then tuna. So if you like any of those foods, that might be something good to eat before you go to bed that might help you feel a little bit more sleepy. There are supplements that you can take, so the one that my daughter has had the most success with is magnesium. And we saw a doctor who we really adored at Cleveland Clinic, and this is one of the things that she really helped my daughter with. And so magnesium citrate is the kind that you want, and you can take that in a capsule form, or you can also get it in a drink. I think we got one, it was called Calm. But either one of those delivery methods really seemed to help my daughter sleep and the doctor said it was pretty benign. It's not going to hurt you. If you start getting diarrhea, you need to scale back on the magnesium - that's what [the doctor] said. Zinc is another one. We haven't used that very much, but it can help with sleep, and iron as well. Jill, do you want to jump in on that?

00:31:46 Jill (Standing Up to POTS): Sure. Well, let's see. So for people who like to try food and before they try supplements, there's a book called Potatoes, Not Prozac by Marilyn de Maison, I think, is the author. (Transcriber’s note: the author of Potatoes, Not Prozac is Kathleen DesMaisons). And she talks about a little routine you can do where you eat a high tryptophan food at dinner, let it digest for a couple of hours, and then eat a high glycemic carb like half of a potato, hence the name of her book, Potatoes not Prozac, and she talks about how that helps escort the tryptophan across the blood brain barrier, and helps it kind of speed up that effect. And over the years I can't believe how many people have told me that this really worked for them. And so that's one thing, you know, that feels pretty harmless to try. There have been a couple studies finding that a couple foods, literally kiwi before bed, in one study, helped people fall asleep over an hour faster. Of course, that was funded by the kiwi industry, but the thinking was something about the antioxidants might have helped. There's a couple studies about cherry juice out there, doing the same thing. And so, I guess I come back to there's just a lot of things to try. There is a warning that a lot of melatonin supplements out there don't contain pure melatonin. So if you go with a melatonin supplement, you really want to work with a brand that you trust, maybe one that has third party testing to make sure you're really getting melatonin. There are a few foods that are naturally rich in melatonin. Things like cranberries and pistachio nuts. So I think I think trial and error is kind of the thing. I just have to give a shout out to my husband who, when he saw the results of our sleep study, and saw just how important it is for POTS patients to sleep and how many different challenges they had, he helped me take it on. And he helped me do some trial and error. And I have to say that probably the most life changing act of my entire life was his agreeing to just give me a really amateur massage at night. So he watches TV and I listen to funny podcasts, because I don't want to get anywhere near any violence or excitement or anything that could rile me up, but that's actually been pretty life changing for me. And so I just say that to emphasize that if there's something that works for you that's not on this list, keep pursuing it. Find that thing, you know. When I think about how 98.4% of our respondents said they had trouble sleeping, that makes me realize that, out of our 600 some POTS patients in that study, that that means that only about 6-7 people are actually sleeping. That's tragic. And as we keep learning more about the importance of sleep, I hope we'll get some more research. But in the meantime, I just hope - I just hope people will not give up and you know, take the time to really do some trial and error. Try any of this and more and see what helps you sleep.

00:35:00 Dr. Cathy Pederson: I think that's right. And, if none of this helps, talk to your doctor. This is a medical problem and it's something that they do have some tools in the toolbox to try to help you to fix it. So definitely talk to the doctor. There are some things that you can buy over the counter that might help. And Jill mentioned melatonin a few minutes ago. And melatonin is an interesting one. This is a chemical that's made naturally in your brain. And it does promote sleep. And so, it's probably most famous for business people who are traveling across time zones, and they will use melatonin to try [to] get them to adjust more quickly to the new time zone. But as Jill suggested, supplements like this are not regulated by the Food and Drug Administration. And so they can put anything in there that they want to, and nobody ever really checks. So you do want to be sure if you try melatonin that you go with a good brand, but it's not great for long term use. People don't seem to do real well with melatonin over six months or a year. And the body gets used to it if you're taking it in that pill form and so you end up finding that the body tolerates it and you need a higher dose and a higher dose. And that's not necessarily a good thing. Another thing that you can try that you can buy over the counter is called 5 HTP – 5 hydroxytryptophan, and that's a precursor to that amino acid that we've been talking about. That can get into the brain then and help you make serotonin. That one, if you've got some mild depression and some sleep issues, can really be a good one. But my caution would be never overuse a product like that. So, 5-HTP is actually really pretty strong. You want to follow the directions on the label. And especially young people think if one pill is good, two must be great, and three will be amazing. You can't do that with HTP. OK, so follow the directions, but that can be a good one. Magnesium, we've already talked about. Magnesium in natural foods, or whether you're taking it in a drink or some sort of a supplement. Some people do really well with essential oils. Again, I think that's maybe part of that relaxing bedtime routine. You start to smell that smell. You condition your body in your brain that it's time to go to bed. And then one that I know that we used in our home for a while was Benadryl. When we were really fighting that pain - when my daughter was really fighting that pain - we'd knock her out with Benadryl to try to get her to get to sleep. But again, that's not a great long-term solution either. If you try all of these things and nothing works again, please talk to your doctor. There are some prescriptions that can really be helpful. I think the best one probably for POTS patients is Clonidine and I know that my daughter takes Clonidine. (Transcriber’s note: Clonidine is an Alpha-2-Agonist typically prescribed for hypertension and ADHD). And Clonidine helps block those sympathetic surges that some pots patients get at night. It actually goes into the brain, and it stops the sympathetic nervous system from sending the signals in the beginning. So it's sort of at the front end instead of like a beta blocker that blocks the receptors sort of at the tail end. We're going right into the brain and stopping those sympathetic surges. So Clonidine can be a good one. There are some anti-anxiety drugs that can be helpful as well. So Klonopin and Xanax may help people sleep at night. But again, I would encourage you if you've tried most of the things that you've heard in this podcast, please ask your doctor what else they can do to help you to get a better night's sleep.

00:38:49 Jill (Standing Up to POTS): Yeah, it's a pursuit worthy of our time and our effort. Well, thank you Dr. Pederson. You put together so much great information for us and thank you for getting this study in the books. I hope will do more in the future. And, hey listeners, if this episode put you to sleep, Great! This is the only time we'll ever be happy about that. But if it didn't, good luck finding the thing that helps you sleep. And remember that, as always, this is never intended as medical advice. Consult your medical team about what's right for you. But thank you for listening. Remember, you're not alone, and please join us again soon.

00:39:31 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, Inc. 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 send an email to volunteer@standinguptopots.org