#27 Unlocking the strategies for deep sleep with David Joffe

So slow wave sleep, it is that period of sleep where you wash the poisons and toxins from your system. You allow your heart to rest, you reset your baseline blood pressure and heart rate, and you rinse your brain to put it bluntly. What can people do to try and for themselves rebuild some kind of sleep health? Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Illness. I am your host Emily Kate Stevens. Welcome back to Make Visible. This week, Jez and I are bringing you an interview with David Jopfi, a sleep medicine and respiratory physician in Sydney, Australia, and it is all about the strategies for sleep. So it's a really practical episode. Let's start, Jez. How did you sleep last night? Within the spectrum of my sleep these days, it was probably just about in the top half. It was a brilliant, but I mean my sleep has not been great for the last five or six years, and I'm sure that is something that is a familiar story to other people who are suffering with lung COVID. We had a study published by Stanford in October to show just how widespread sleep still is. It was in lung COVID. There's very many reasons for it, which we can go into. But yeah, I struggle with it, and there are many things I have to do to give myself the best possible chance of not having a shocker. How about you, Emily? What was your night like? It was actually pretty good. I would say not long enough. I do have a tendency to wake quite early in the morning, but I probably went to bed too late. But for me, sleep, getting sleep, working out how I can sleep has been an absolute game change in my health. I had such horrendous insomnia for the first 18 months constant. I really, really could not find sleep. And I'd say around two and a half, three years in, I began to get a handle on it. And you can feel the upward trajectory as you begin to actually implement some, implement some strategies for your sleep, because it's not just something that you can take for granted. It's not just something that happens when you have so much dysregulation going on in your body. Sleeping well isn't going to cure you long COVID, but it might significantly improve your quality of life because of your symptom burden. You might find that maximizing the quality of sleep you are able to maximize given the condition, I'd give you a 25% improvement in your symptoms. So it's one of the quickest low-hanging fruits to grab. Although that being said, it would be nice if the fruit was right here. It's still up there. Some of the stuff you had to do is still a bit annoying, but I'm sure we're going to go into that. And it's not necessarily the quickest if it's taking you six years of trying to work out how to do it. But it's definitely that feedback loop, but I believe that I think across the board in these conditions can be said for multiple things. It's that if you can slightly increase your sleep quality or your sleep quantity, it's slightly increases your daytime energy, which just has this knock on effect all the way through. So let's go to David Jopfi, who is vice chair of the World Health Network, Long COVID Advisory Group, and he approaches sleep as someone who has spent 40 years studying people with sleep disorders and respiratory disorders. And here he gives us some straight up, known nonsense, practical advice on how we can improve sleep. What can people do to try and for themselves rebuild some kind of sleep health despite the hit? So there are the simple things, the simple things that we've long advocated for, which include what we sort of generically refer to as sleep hygiene. So that's going to be at the same time and getting up at the same time, irrespective of work or weekends, switching off devices, making sure the room is dark, making sure that the room is quiet, making sure that the temperature isn't too high because you need to initiate a dropping core temperature. So if your central heating terribly English is a bit too high, you can't initiate sleep properly. So these are all things that are crucial is the environment of sleep ideal. And then there are strategies again, behavioral things to deal with and manage the other aspect of it, which is what we tend to refer to as more sort of sleep anxiety, the worrying about worrying about kind of sleep. And for many it becomes a kind of perseverative and intrusive thing and the overlap with mood is separate and certainly needs to be addressed. But for many, whether it is meditation, whether it is white noise, whether it's counting sheep, whatever rocks your boat, but something that basically enables you to develop a relationship between bed as a place of rest and not a place of war. And so it's really important for people to avoid particularly those who've got a lot of pens, not to spend that time where they are inactive and they're awake, but they are fatigued. Do that on the couch, do that somewhere else. Don't do that in your bedroom because that disassociates your cognitive recognition that there is somewhere that you go to sleep. Really only two things you're doing bed, sleep and sex, in whichever order you prefer. I will leave that entirely to the audience, but that's the essence of what we try and tell people. So that's the behavioral aspect and they really important, you know, no late meals, you know, want reflux, making sure that you haven't had excess alcohol, avoid drugs of addiction, benzodiazepines, the z drugs, zolpedem, zolper clone, imovane. And now there's a bunch of erexin based ones, but they also come with a price to pay in that. Certainly a lot of people don't tolerate them terribly well, the erexin sedatives. And for some, they will get the intrusion of narcolepsy because you literally are chemically making them, if you like, narcoleptic, excessive, be sleepy. And it's really about creating this environment both in your room, but in your body as well to invite sleep at an appropriate moment, not at an appropriate moment. That is absolutely crucial. And then there are the pharmacological approaches. So one of the aspects is with the loss of circadian rhythm is melatonin. I always prefer particularly in long code to use pharmaceutical grade because I know exactly what's in it. It's approved by our TGA and it's slow release. And so you know exactly what it's pharmacokinetic, so how it's low dose. The idea that some is good more as better doesn't work. In fact, if you are taking bigger doses of melatonin, it can cause insomnia. So one has to be mindful of that. But pharmacological grade slow release, 2 milligrams is what I use. And I tell people you really want to take it 7 to 8 p.m. The essence of that is that it then biologically, it's pharmacological peak is 9 to 10. That is our normal circadian peak. Every hormone and every enzyme in your body needs to know what time it is. So alcohol dehydrogenase, which breaks down booze, switches on at night, which is why you'll get more intoxicated if you drink a lunchtime because the enzyme is not switched on. For cortisol, which is your stress hormone from your adrenal gland, bottoms out at 3 o'clock in the morning. Now you're literally a kidneys and your adrenalzone at what time of day it is. They take their cube from that atomic clock, which is your melatonin rhythm. So melatonin is if you like the circadian timekeeper. And so every organ kind of looks and sets its watch according to that as to when it's enzymes and other processes undergo switching on switching off all that sort of thing. And so that is very useful for many, but again, best to use low-jows. As we also know that it has a role in REM behavior disorder. So again, in long-toed people, we sing a lot more of that. And so you're not really meant to be moving when you're in dream sleep, you're paralyzed in your voluntary muscles. And so when you lose the normal paralysis of dream sleep, yeah, well, that's not normal. And so that fragments your REM sleep and that has implications in terms of information processing speed and memory. So circadian or slow release melatonin is a useful drug for reducing outbursts of rend behavior disorder. And then there are other medications that can be really again helpful. It's always imperative to do a sleep study in those with long COVID, because you are going to miss a lot. We recognize that many have unknown. known or unrecognized sleep act near. And so if you fix that, it's a bonus. We recognize that many because of the dope injury now have restless legs and have a lot of leg movements of sleep. But it's the only place that you can realistically measure how much slow weight of sleep people are getting. And it's really not uncommon and it's being measured that there's a significant reduction in deep sleep in those with long COVID. And so I have been for some time now in long COVID patients. In essence, we put electrodes on to a forearm and a thumb muscle. So not exactly devastating sites. But the signal, the electrical signal when you hit REM should just flatline. You shouldn't have muscular activity should be paralyzed. And what are you saying in long COVID? Well, what we're saying plenty is the absence of paralysis in dream sleep. And for some there are clearly on video associated movements. And so yes, they have REM behavior disorder. Many long COVID people have new onset rest of sleep. It's a real feature. That often responds to simple things fixing their sleep disorder breathing, addressing their metabolic derangement and making sure that there's not a metabolic cause is crucial. But magnesium is hugely helpful for for restless legs. One in this day and age now has to be mindful. So I always use what hospitals use, which is something called magnet, because it's got good biovalibility and it works. We're increasingly aware that the fad of wellness, hope, your emergence and sharps in the water. A lot of the magnesium's got B6 in it. And so in desperation, the sum is good. More must be better group will eat buckets of magnesium that's got B6 in it. And that's near a toxic and can cause peripheral nerve damage. Not not helpful if you've already got peripheral nerve damage from your long COVID. So I always use stuff that's just magnesium and the stuff that we use in hospital to replace magnesium. Banana is a high in magnesium and potassium. Magnesium is really helpful for restless legs available. Chemists it's cheap. Magnesium is a core chemical that is crucial to how we produce dopamine. And so it's really important. And the fact is if you do someone serum magnesium, it doesn't tell you anything about what they're CSF, they're brain levels of magnesium. So for many, they will get benefit even if someone says, "Bitch magnesium level is fine." Yeah, magnesium is fine. Well, I don't adhere to that because I haven't measured in there in a spinal fluid. But it is a really helpful adjunct for many in terms of the restlessness and the fidgetiness that often pays off in the early evenings when they often get their restlessness. And again, that interferes with sleep initiation. The other thing coming back to your question about things that can be helpful, there's a supplement called glising. If you'd asked me five years ago what I thought about oxylacetate and chrysanctric and monohydrate and stuff, I would have told you to get stuffed. But they are punnate. All of those things are part of my regular armamentarium for mitochondrial support for pens. And your brain, there are only two things that are really unbelievably mitochondrial dependent. Well, every cell has mitochondria except bread, blood cells, bit muscle and your brain. That's where you really want to focus. Glising? Yeah. You also just mentioned chrysanctric. So the mitochondrial support, things like benagine, which is oxylacetate, it's really helpful for many in there is some work in that area. We often supplement it with things like co-cutane and chrysanct for me. I tend to add those things because oxylacetate in itself was quite expensive for me, sometimes using cheaper things to work adjunctively. It's all about a process in the mitochondria, which is the core component, which is the creb cycle. So there are many ways in which we make energy, but the creb cycle, now I've got to tell you that when people put up images of the creb cycle, I mean, to be honest, we all forgot that exactly 20 seconds after we walked out of biochemistry 101 in 1st year medicine, but boy, I'll tell you what, I've had to go back and relearn that. And thankfully, we have one enormous human being in our group, a remarkable man, Leo Gallon, who has spent his life looking at Lyme, post Lyme, chronic fatigue, post viral illness, and his knowledge, Leo is never allowed to die, and he's certainly never allowed to retire until Leo has left his brain to us. I actually expect him a couple of years ago, but I should probably actually visit him for audience, just a highlight. You should. He's particularly, he, so one of the joys of sitting at the grown-ups table is about every six weeks. One of the guys in the group, whether it's Rob Bus, or Mark Faye from Darby, or Dave Petrino, or Leo, or me, I'll talk about Sleep or Danny Beckman, or Shars, these images of exploding neurons and vessels with aneurysms in them. We show each other unpublished data, stuff that others don't see yet. And so that's really for me, one of the me being the greatest joy is that Australia is a backwater for long COVID. We have plenty of it, we just should ignore it. And so sitting with the guys who really are like Amy Pearl and David, at the cutting edge of Andy Viral's studies and other things, exercise testing, China's filter out what we think drives the pems, the mitochondria or hijack, all that sort of stuff, is really, really important. But coming back to it, I got distracted. Glice in three to five grams, it drops your core temperature. So it's really quite useful for initiating sleep. Okay. Cheaper chips. So three to five grams, probably 30 minutes before bed, I help stock your core temperature. And that is one of the absolute catalysts for sleep. And so for years, the French is to use a rectal thermometer to measure the dropping core temperature. That's really where we got it. Much of the science is from the French. That is really a crucial thing that we see that core temperature drop. And you're right, those who've got dysordinomia, that's yet another additional pathway over and above everything else. I sort of colleague of mine and I actually visited her at home because she was so bugged. And we stepped out of her house, she was coming to say goodbye to me. It was 30 degrees in Sydney and here in the north touch to her arm. It was freezing cold and she had goosebumps. And I said, yeah, that's just a dysordinonia. That's interesting. I didn't realize that I'm always cold or have always been cold since I had long COVID. Yeah, yeah. I hadn't realized that that was a symptom of dysautonomia. Yeah, absolutely. The temperature, I mean, it's how we regulate our temperature. Yeah, definitely have problems with the regulation of it. Absolutely. So you then also have to differentiate particularly in women, those who are in that 40 to 50, 55 group who will go into early menopause. It's a crucial thing for some they go into early menopause. For some, it makes their perimenopause a whole lot worse. And so it's really important because for some benefit may be derived from hormone replacement, therapy and other things. And ever just miss the obvious that the flushing, the flashing, the sweating and other things don't just ask just my dysordinonia, it may be just menopause. And that at least you can address. But having addressed that, even in those who are not clearly biochemically or otherwise menopausal, it's really a common feature. It's this regulation of the temperatures. Temperature, it's pretty distressing for many their partners, lying there, freezing to death and with their conditioning on and they go, "I have, I see." And then the donors come in back on and, "Yeah, you know, I'm stuck in the opposite way round." I'm absolutely freezing when I go to bed freezing. Yeah, it's fascinating. There are so many things that fascinate me about this. 40 years of medicine, I've never seen anything that comes even close to it. So when people said this is a novel virus, it remains a novel pathogen. And the pathways to the endless hurt are just extraordinary. Yes, the problem. There are obviously so many neurocognitive symptoms and all of the various cascade effects that you could actually put a lot of them down to the sleep fragmentation. What we're talking about is the glimphatic system. So your body has a surge system, which is the lymphatic system. So if you cut your arm and you get an infection, you get a big swollen gland under your armpit, that's what's supposed to happen. It's taking out the trash. The brain doesn't have that. The brain has a unbelievably complicated and really kind of beautiful way of taking out the trash. which we've called the glimphatic system because it's similar, but the glimph bit comes from glial cells. So in adolescence and in young people, the glial cells are really important. They actually help work out which networks of the brain. You are going to want and need as you evolve to maturity. But we know that they also evolved, the glial cells are fascinating, but they actually become crucial to the brain's immune system. They are in many ways an integral part of the brain's immune system. They have extraordinary capacity to share mitochondria and dole cells to absolutely fascinating things that we're only just beginning to appreciate. To be honest, the glimphatic system is really only a decade old or maybe a bit more. But the crucial component of it is that is when you take out the trash. And so when we go into slow wave sleep, which is deep sleep, we actually pump nor adrenaline, little tiny bits in all adrenaline, into the little arterial that are feeding into the cortex. So basically, increase the pressure and flow across the glimphatic system. You have an arterial side that is pumping a bit harder and a venous side, which is if you like, taking out the waste. And so we actually deliberately pump a bit harder, nor adrenaline into the glimphatics in slow wave sleep, which is when we washed our brain out. And when does that slow wave sleep happen? Well, the architecture of sleep is pretty damn rigid in normal humans. So we know that in infancy, we have more REM sleep because our brains are growing. We know that in adolescence, they have more slow wave sleep because that's when growth hormone is released. But by the time of maturity, sleep architectures really pretty rigid. So we initiate sleep and that in itself is a sign. That is also a challenge in some of these conditions. There's nothing like disordynomia to dysregulate your slow wave sleep. But also the prefrontal cortex that sits immediately above your nose. But the prefrontal cortex has a really important role. It's actually part of the motherboard. That's why the virus goes there and into your migdala, which is also on the motherboard. But you actually need the prefrontal cortex to tell your frontal lobes to go to sleep. And so with prefrontal injury, you get a lot of insomnia. And remination because you can't switch the thing off. It's not like a computer that you can just reboot. And so the glimphatics are damaged. And so with a reduction in slow wave sleep, injury to the prefrontal cortex, in addition to which there's this kind of vascular microclodding component of hypoxic tissue injury, mitochondrial dysfunction. If you can't take out the waste, you will accumulate the proteins that you least want folded, amyloid and other things. There are hallmarks of what we best understand as dementia. And so that is the thing that keeps stars like me awake at night. Can you explain that in terms of the sleep architecture, once we actually initiate the sleep cycle, what phase do we go into initially? So there's a very complicated process from the prefrontal cortex to a drop in core temperature, to a cascade of a whole bunch of chemicals that I won't even begin to try and explain. It's so complicated. But we basically drop into initially transitional sleep where the EEG, which is what we've always used to score and record sleep, just starts to change in its pattern and frequency. And then we establish stage one sleep, and then we go into stage two sleep. Those are the essence of light sleep. From there, we actually descend into what we used to call stages three and four. We now just called them N3, so they've kind of been grouped together. But that is the essence of slow-wavled deep sleep. And in many ways, it's related to the fact that we shut off through the midbrain. A pathway that is histomanurgic, in essence, that means that it becomes like a brick wall, so that no signals are really entering from the higher cortex and signals from a lower brain bounce back down. So you're kind of disconnecting your higher brain from your lower brain. So your heart still beats. You know, you still breathe, your bowels still works. So the autonomic nervous system still functioning. We were most stopping the conscious side of the breath. Exactly right. And so that is really the essence of deep sleep, is a state of unconsciousness, if you will. And that is the point at which this lymphatic system kicks in. And you start to remove those proteins, those waste from your brain, essentially. And it's absolutely. You don't go into that phase of sleep. You're not entering that cleaning process for your brain. Yeah. Or if you are, it's really suboptimal. I mean, the lymphatic still work. But the crucial aspect is that that is when they are most essential. So slow wave sleep is your heart rate drops, your blood pressure falls. It is that period of sleep where you wash the poisons and toxins from your system. You allow your heart to rest, you reset your baseline blood pressure and heart rate. And you rinse your brain to put it bluntly. I'm going to quote one of the things that David said there. He said that slow wave sleep, it is the point at which you wash the poisons and toxins out of your system. As someone, Jez, who has struggled with sleep, tell me how that statement, that sentence rang for you in your body. Because for me, that is what I feel. Like I have been perpetually poisoned. There's something in my system and I can't get rid of it. So if one of the things is that sleep is not ridding us of those toxins, sleep is a huge thing. Sleep is clearly a huge thing. As humans, whether we're well or suffering with chronic complex conditions, and we struggle without it, one of the characteristics of MUCFS and now long COVID is unrefreshing sleep. Certainly my experience might be that by the time I go to bed, I'm just about okay and feeling like I'm not always the case there. Sometimes I'll be absolutely spanked. Other times I might be feeling okay, but almost always I wake up feeling terrible. I wake up feeling like I've had eight pints the night before. Yeah, that kind of poisoning from my God. Yeah, 100% what it feels like, feels like concussion and a massive hangover all in one. And that's my morning every morning. And I've got used to it over the last six years. One of the things I have found is that that feeling is at its least strong when I have managed to sleep the best. And there are certain things that I have had to integrate into my life and change the way I live and change the way I spend my days to give myself the best chance of sleeping better. And I don't know what sort of strategies you integrated into your life. But they start first thing in the morning. So it starts at eight and nine o'clock in the morning for me how I prepare for that night's sleep. So it starts early. So let's talk about some of those. And we can go back and reference some of those strategies that Juffy referred to. I think what you're talking about from eight o'clock in the morning is and sometimes I wanted to punch people in the face with advice that I was given. But people say if you want to sleep you need to manage your circadian rhythm you need to get up and see the light. Get daylight onto your body. And what I want to reference at this point is and this actually goes back to something that Juffy said as well. The fact that it's a brilliant idea and it is essential. But there are people for whom that idea of getting daylight on them at eight o'clock in the morning is absolutely horrific. I had days where I could not move from my bed because the pain was too bad. Let alone turn a light on or move to the window to open the curtains. The idea of that light and that movement was just horrendous and I absolutely couldn't physically do it. But once you are able is this what you're talking about about eight o'clock? So my old patterns of waking up I now try and have a very conscious overall of my instincts. So my instincts from the old days will always first thing you do reach for your phone. Now I try and make it at least half an ab for I even reach for my phone. And in a perfect world I'd probably ought to charge the phone over nine in a different room. But I haven't quite got that far. But yeah I do breathing exercises because normally I wake up pretty early around six or something and it's not light at that point. I will continue to do breathing exercises until it's there's enough daylight to justify opening the curtain. Open the curtain for ten or fifteen minutes once there's some daylight to come through and only at that point will let myself get my phone. Then once I'm up and I've gone downstairs first thing I do before I put the coffee on open up the back door go outside and stand in the garden for even just 20 seconds at that point just to get some lights on me. Personally I find the intermittent type of fasting difficult and I find that my circadian rhythms are at their best when I eat and have some coffee in the morning. So that's generally what I tend to do early-ish. Once I've done that, I want some up and showered. Generally feeling pretty awful, but differently awful than I did first thing. I'll then take myself out for a three-minute walk up the road and back, maybe one, 200 yards, just so I'd been outside and got some daylight on me and moved my body a little bit. And I'll come in, sit down, have a lie down for a bit, do some more breathing exercises, and then I'll consider getting on with my day. But all of that fat in the morning, I used to sit in a alarm and be out of the house within 20 minutes, bang, everything's done, and I'm just, do, do, do, do. Now that process of being ready to do something takes about two hours, but that's kind of how I'm going to do it. And do you wake up with an alarm at 6am, or is it? No, I haven't used an alarm in five years now. Yeah, my body likes to wake up at about 6am, and just as you do, I lie in the dark and do my breathing exercises every morning. And if I don't, actually, I can feel it in my body. If I have to rush or have to get up without having had that time, I can feel it. It's interesting, because our conversation has started to prepare for the end of the day, for that sleep, you start at the beginning of your day, because it's this constant cycle. And some of those points on sleep hygiene that Juffy made are absolutely imperative. I think especially when you are bedbound or spending a lot of time in your bed, there's such a tendency to then be on your phone in bed. And think it's not making a difference and think, oh, well, but that's my connection with the outside world. But actually shutting that down and not having that, either whether it's blue light or just the mental stimulation of what you're absorbing, I think, has huge implications for actually the depth of your sleep, which, as we heard, is incredibly important. Now, Juffy said, I loved this phrase. He said that we should try to develop a relationship with bed as a place of rest and not a place of war. And for me, that really, really rang true, because I spent so many years pretty much doing everything in bed. And it really did become the place of everything, a lot of the time, because I couldn't get downstairs. But then it just almost became a habit, like it was my safe place. So if I was sitting up in bed working, now in retrospect, I'm thinking, could I have made that shift and at least gone to a different place, a different room? Because I like that idea of creating some kind of sanctuary where you are making bed as your place of rest. However, again, there are going to be people listening to this who can't get out of bed, who are bedbound. This is the cruelty of the condition right for the people who are suffering severely. All of the things that you could slash should do that might improve your quality of life. You simply cannot do. And you are stuck within this maze of mirrors where everything that you try and do there is no escape. And any sort of route out, I mean, I love my random movie references. But I don't know if you remember the start, the man with the golden gun, James Bond movie. But it's this maze of mirrors the bond gets laud into by scaramanga, right? That's kind of like the place you're in. When you're severe or you've got severe pain, there is no escape from this place. All you can do, everything that you do is reflected back on you. And there's no way of getting out because all the things that you'd want to do, all the ways out, aren't available. And there isn't really a huge amount of advised one can give to people who are in that scenario, other than just offer compassion and say, "I've been there briefly at times over the last six years." And it's brutal. Yeah. Yeah. So I wanted to acknowledge that. I like this idea of creating your bed as a place of rest. But let's acknowledge that for some that is not possible. If you can though, it's a really great strategy because now, now in my, when I talk about my relative wellness now, I never want people to feel like I am in any way, basiting or in any way not understanding what other people are going through. But I do hope that sometimes it might offer people some hope because it is not a completely random thing. It has taken me six years of work and still daily work to get to this place. So I'm just trying to share some of the strategies that have helped for me. And really, the most difference now is that I don't spend my days in my bedroom. And for at least four years, I spend every day in my bedroom. That was my world. Let's talk about some of those other things that Joppy mentioned. Melatonin, fan, fad or fail. Have you experienced Melatonin? What are your thoughts on it? And do you think it's something that has backing? Well, the science seems to suggest so, doesn't it? I used to take Melatonin in the old days. When I was traveling, it was great to jet lag. I would take about 0.2 of a milligram at the time. And I found that really made a difference to helping your body adjust whatever time zone you're in. And I used to do a lot of travel with work. There was a lot of cross-Atlantic and flying Eastern all sorts. I found it really helpful. But I tried not to take it every night. Situation's changed a bit. Now it's one of the things that I lean on most heavily. The current pills I'm taking are 10 or 12 milligrams. There's a few things I take at night before I go to bed. It would be up there in the top two that I most heavily rely on. Or I feel like if I miss it, I got almost no chance of sleeping normally. And for how long have you taken Melatonin? So I ramped it up in the very early days of long COVID. When I was struggling with sleep, it seemed like a very sensible thing to increase. So I've been taking it constantly for six years now. Melatonin is probably the thing that got me back to the sleep. But unlike Jophie's recommendation, I did do the Melatonin that you could buy. Because I was prescribed it by one doctor. And I actually found that medical one to be ineffective. Whereas taking the 10, is it 10 milligrams that you buy in the US? I found helpful. I have read things to suggest that actually we shouldn't be taking it. Long, long term. Because as with anything, your body then develops this reliance on it. And a reliance on a chemically induced version of it means that you are let able to produce it yourself. And that plays into all of those supplements that Jophie referenced. Because there are things that we actually create or have innately in our body that we should be producing sufficient of to maintain that homeostasis. Which goes back to what you and I always want to know is why are they all knocked out? Why are we not making enough of them in our bodies? And obviously that is a long conversation. And what we talk to pretty much every single person about. What's happened to knock that Melatonin out? But in terms of that, the supplements do you have a pretty good safety track? And I know a lot of people with these conditions are taking it. That's the challenge. Should you really be taking this stuff long term? So I've been taking anti-histamines long term. I've now been taking Melatonin long term. A couple of other things I've been taking long term. And in a perfect world, I wouldn't be taking them. And I've tried to tie trade down and get off each of them at some point to see if I can. And immediately I have suffered to a point where it's not the kind of suffering that you can just spend two or three days getting through and then you'll be fine. No, I'm actually quite reliant on them whilst I still am this symptomatic. At the points at which I'm better, enough to start trying to come off them again. I will do. Yeah. It's one of this hall of mirrors. You can't get out. I try not to take too many things on a day. But I was a period where my supplements bowl and pills bowl was just so much stuff. I'll take it down. I'm like, this is no good. So when I went to do the extended fast, I went cold turkey on just about all of it. And that helped me break the pattern in a sense of taking all of those. And I only reintegrated the ones I really felt I absolutely needed. And did you reintegrate them one by one? Because that's the thing. I tried to, yeah. Me right now, I still take a lot of supplements each day. And because I am in this period of relative wellness, I'm almost terrified to stop them because they have all been added incrementally. But I now don't know which ones I need and which ones I don't. I will say, and this comes on to his next big one, I really notice it. If I don't take magnesium each day. Are you a fan? I'm a magnesium. I'm a fan. Yeah. Yeah. Do you take it every day? I do. I take it as part of my bedtime ritual to about eight o'clock. And with the melatonin, what time you take the melatonin? Eight o'clock. Eight o'clock. After listening to Joffie's interview, I might bring it a bit earlier, actually. I've generally been doing it in an ab before bedtime. So my bedtime ritual starts at eight. Tell me about that ritual. Tell me what you take and when you take it. Well, let's zoom back to the morning. So I've gone and done my morning walk. I've come in and get through my day. It's possible I might have a second coffee sometime mid morning, but rare. Certainly no caffeine after midday. That's what I was going to say. What's your relationship with being like with caffeine? Is it changed? Yes, I used to have a coffee occasionally in the evening and not know to still effects now midday latest. And the other thing alcohol? Zero. Zero, zero. I've been tea total. I was a social drinker before and binge drinker on weekends as everybody from Gen X was pretty much. But yeah, not in six years. I haven't either. Yeah. So no alcohol? No alcohol, no caffeine after midday early dinner. So try and eat if possible by six o'clock and avoid sugar as well anytime in the afternoon too. That early dinner is one of the things that has made the biggest difference. I used to be able to eat and then go to sleep. Now, if I've eaten a meal two hours before zero, chance of already going to sleep and I can even see it when I was measuring my heart rate for two hours after eating the heart rate. goes up like this and just takes forever to come down. So I have to eat at least two hours, preferably three before bedtime. So that's one part of it. Stop work at six, that's the other part of it because otherwise your brain's going, again, didn't used to be so much for an issue. Now it is. So at eight o'clock, I'll go upstairs, I'll take my nighttime pills, supplements and couple of meds and start doing breathing exercises at that point. And what I'll also try and do around that time is try and trigger what I sometimes call this sort of fatigue wave, which is a yearning fit the last about 10 minutes. I force a couple of yorns and then suddenly my body just goes into this crazy yorn cycle. And again, that appears to be a nervous system regulation, mechanism that I'm able to trigger and the heart rate drops at that point too. Until then, whilst I'm go, go, go, during the day or go crash, go crash, go crash, which is probably more accurate, I haven't maybe calmed the nervous system down to the point where it needs to be able to sleep. So triggering those yorns are quite important too. - Yeah, that's an activating of your parasympathetic. There's one other point in here as well, which is a trick I sometimes use, but it's risky and that's to have a hot bath. Hot baths are one of the things generally recommended for normal people to help with sleep because after the hot bath, your body temperature drops and your body temperature dropping and cooling down is one of the cues for sleep as Joffey talked about. Unfortunately, along COVID, hot baths can be tricky because either a cardiovascular workout, which is a good and a bad thing in long COVID. But too, depending on how disoysnomic you are, your body might struggle to cool down properly. So sometimes, if hot bath will knock me out afterwards brilliantly, other times I might be awake for two hours because the body won't cool down. That's something that might work for individuals, but I very much doubt is gonna be in across the boards. - If you have a hot bath, do you add epsem salts, magnesium to the bath? - No, but I should. - I should. - Yeah, it would make sense to do so. - Yeah, I do occasionally do that and I find that I do sleep really well with that. This dysregulation of temperature, I really struggle with, I'm always freezing cold when I go to bed anyway. And actually, one of the things that stops me from sleeping is the fact that I feel so cold. I think it must be something to do with the way that my brain perceives that drop in core temperature as my body is trying to instigate that drop. I find it really uncomfortable. I have five duvets on. - But one of the other things is that people say you will sleep better if you have weight over you. So actually having like heavy blankets is actually a very good sleep cue for you. - Yeah, and I think for me that is actually what it is. It's the weight I should probably just get myself a weighted blanket. I don't like feeling airy. I like the room to be cold. I definitely do that. - Don't like a draft sneaking in under the duvet. - Exactly. (laughs) So you tend to take an hour between starting to instigate the sleep cycle. And I think one of the things that is really important in what you're doing there, the meds and the supplement sure, but it's this process that you are signaling to your body. This is our routine, just the same as you do with kids when you're teaching them. This is the routine with kids you have the bath, you read the story, and then it is that wind down period. You're teaching your body, this is where we're going. In terms of that kind of routine or rhythmic thing, are you ever reliant on audio, audiobooks, on certain hurts, music, on meditations? Have you had experience of that? And are there any of those things that you bring into your routine? - So I tried some of the sleep meditations. I found they actually got my brain worrying more than they calmed it down, because as soon as I'm listening to words, my brain switches on, I will use calming music during the day when I take breaks and occasionally at nights as well. I find that's less stimulating than meditation type stuff. So yeah, have tried it. It will certainly work for some people, but personally, it wasn't something I found too helpful. - One of my major strategies, and I think it's one of the things that literally saved me in the worst days is Yoganidra. And for anyone that doesn't know, Yoganidra is not anything physical. It is a form of lying down and having a rest in your body that is not fully entering sleep necessarily, but you are creating this release of consciousness. You're sort of switching off your brain and going into this deep form of meditative rest. And I was reliant on that for years. In the middle of the day, I would do one of those and it was so calming for my nervous system. I was also in that cycle of insomnia, so I was really, really struggling. And I knew that I was tired and believe me, I napped in the day a lot because sometimes it was almost like narcolepsy, I was so exhausted. But when I was trying to really, really get on top of this and regulate that circadian rhythm, so not take a three hour nap in the middle of the day, I would do Yoganidra and it's sufficiently calming and refreshing that it would enable me to get through the afternoon. And then a lot of the time I would do and I still do if I need it, Yoganidra or sleep meditations at bedtime because I find one, the actual content and focus at a lot of the time will focus on your breathing or do a full body scan. And I find that focus on the internal, in the physical enables me to detach from my mental busyness. But the other thing, and I know this from when I was a child, is I always, always as a child, went to sleep listening to the same audio book, not multiple different audio books, the same audio book every night again and again, if I could ever not sleep because I think, like Jofy says, counting sheep, sometimes I will go for a walk in my head where I walk really, really familiar routes and notice things along the way. That to me seems like quite a mental process, but there's something in the familiarity of it. So there's this rhythmic thing that's induced in my body by going over old material essentially. So I found one Yoganidra that I particularly loved and that would always be my one, I don't think it was designed to just put you into a state of sleep. But because of my brain's association of that repetition of things, you find a voice that you like and just listen over and over again, the familiarity, maybe it's comfort, that was one of my major strategies. And just switching off the cogs, which are just turning in our heads, right? That's one of the challenges. We've got to calm the body, you've also got to calm the mind. And sometimes distracting the mind is the best way to calm it. We will all have tricks for the sort of things that we think about to try and calm the mind. Well, the first step is becoming aware that it's running around the mind and worrying or being anxious or thinking about tomorrow or this upset me. Trying to a, recognize that and then be distance yourself from it and then see distract yourself by thinking about something else that's calming and restful, another useful strategy when it comes to actually just trying to get sleep. Yeah, hugely. And I rely on my breath work. I have certain breath work techniques that are hugely downregulating. Some of those are on apps that I will listen to other people talking me through breath work, through meditation. So for me, that's absolutely my tool that I rely on now. I realize that I probably take my supplements too close to sleep time, but because I don't have such a problem in deusing sleep now, it's I don't think it's an issue, but I should probably bring that magnesium earlier. One of the big things just like you for me was just setting that bedtime much, much earlier. So aiming to get into bed, unfortunately, my children now stay up until about 9.30 but aiming and be ready for bed by nine o'clock. Because what I realized is I think I have spent my entire life like an over tired child that I maybe at seven or eight o'clock in the evening instead of listening to my body and allowing myself to start to wind down, I'd push myself over that point of tiredness and I would always stay awake. And I worked with the US time zones for a long, long time. And particularly in 2020 when I was first getting sick, I was running a road trip across the US. So I would be up till two in the morning working. This was probably one of the most detrimental things for my health was pushing my body that late and completely overriding it. But I always maintained, I always said, "Oh, I'm not someone who gets tired, I don't get tired in the evening." I'm so energized in the evening. And in hindsight, I think it was that kind of adrenalized buzzing energy that's not necessarily healthy. So from what you say as well, I think what's really interesting is how much we have tuned into what our bodies are actually telling us, what our bodies are actually needing, rather than what are kind of age groups society lifestyle is. - I used to prefer my entire adult life. My bedtime has been getting to bed 11, 30-ish lights out at midnight. - Same. - And sometimes if it'd be one, if it'd be two, that's fine. You know, you just try it, yeah, it's fine. And that was through 2020, that pattern continued because you have no reason to realize it should. And then I started to just to share exhaustion. And then when I did a little bit of research and found out what the symptoms of a lack of deep sleep also the slow wave sleep are. And I was like, oh my God, boom, boom, boom, boom, boom. Yes, a lot of them have crossed over with long COVID. But they're all basically, they will turbocharge your long COVID if you're not getting up deep sleep. One of the most effective ways to get more deep sleep is just to go to bed earlier. It's that old slightly hokey wives tale of that hours before midnight are worth twice as many as the hours afterwards. And that's the reflection of actually where the deep sleep happens. how you increase the matter of time is bending deep sleep. So once I made that change immediately, oh, helped hugely to my daily function and my symptom burden. Yeah. And it is that whole chicken and egg thing of trying to write some things. And I agree. At points, I used to think, well, maybe this is not long, COVID, maybe this is just the result of chronic sleep deprivation, but the chronic sleep deprivation was definitely triggered by all of the symptoms. So it's just trying to deal with everything at the same time, trying to somehow dampen everything to move yourself to a better place. Now in the interview, Jofy gave some advice for co-ents I'm Q10, Oxalo acetate, creatin, chrysan, glycin. He did not go into much detail about those. When I started researching them, I thought, oh, jeez, this is a whole episode for us. There is so much in this. Do you want to give me one sentence on them? I might give you two good ones. Let's start with glycin. It's a simple amino acid that acts as both a building block for proteins and in your road transmission, the brain. For sleep, it appears to work by lowering core body temperature and calming brain activity. Study suggests that taking three grams before bed may help you fall asleep faster, achieve deeper sleep, and feel more rested the next day. It's considered very safe with minimal side effects. So as soon as I heard Jofy talk about it and then looked it up, I immediately ordered some from Amazon. Did you? I'm on the train already. One thing I have not ordered yet, though, is chrysan, which is a naturally occurring flavonoid found in passion flour, honey and propolis. It's thought to promote sleep by binding to the same brain receptors as benzodiazepines. However, the evidence for chrysan is much weaker than for glycin, and the main challenge is that it has very poor bioavailability when taken orally. That basically means that when you eat it and digest it, it doesn't necessarily go into the right places that it would in the cells that you need it to. So I haven't yet ordered chrysan, but who knows, it might be worth a punt. Okay, and I will tell you about creatin monohydrate. It's the compound made from three amino acids that is actually typically, I think a lot of us would consider it to be something that's taken by kind of gymbros, but it is pushed massively in the media at the moment, particularly for women in perimenopause, and it plays back into what we talked to Davenport about and what Joffie references in this interview. It enhances energy production. It assists with oxidative phosphorylation, and it helps to replenish the ATP. Now, that is why it is used by people who are doing a lot of sports, and that is why it is this kind of performance enhancer in sports. There are now a lot of studies to suggest that the way that it increases energy in your body, it also operates on the nervous system and brain in the same way to boost your energy, maintain your pH levels, and it can definitely help with brain fog. There are studies to show that it increases sleep duration, and it can help a lot in major sleep deprivation, but from what I read, it suggests that it is more to do with the fact that it makes you more energized in the day, than necessarily enhances the quality of your sleep. But it's such an interesting one that I would like to dig into it in more detail at a later date. I think the thing with that, with the pricing glycine, is that they all are well tolerated and generally considered safe. The other two that he mentioned is oxaloacetate, which I think trade name is Benagin. And again, that plays into the Krebs cycle, into the energy production. Oxaloacetate is something that is part of that whole process in our bodies. It is innately in our bodies. And studies show that oxaloacetate is significantly lower in the plasma of MECFS patients. There has been the regained study from the NIH really, really dug into it. And it definitely shows improved sleep as a reported benefit. And I think again, the sleep quality is improved by the regulation of the metabolic processes other than anything else. So it's the metabolic processes in the day, but in your body and brain generally, that are improved by it. And the final one that I just touched on is co-insign Q10. And a lot of people have been recommended it. It is an antioxidant that protects the cells. There are trials to suggest that it does help with sleep. It's super interesting. I have started taking kriotin only about a month ago. And look, I feel good, but I can't say that it's to do with the kriotin. This is one of the challenges with all the anecdotal stories of people taking supplements that you'll see on social media. I took supplement X and immediately was great or I took supplement Y and it wiped me out, even assuming that there are no changes to your daily patterns or what you eat or what you drink or what supplements you take or what medications you take or what stress you're under or any of these other influencing factors. It's a relapsing and remitting condition. So when people are anecdotes saying I did this and felt better, it's so hard whether it's a medication or a supplement to know where we're coming from on it and with the anecdotal stories. So you have to be looking towards the studies, but there aren't very many high-powered studies of the sort of supplements we're talking about, especially in the context of Long COVID. And we also say the fact that supplements still are not rigorously regulated. So when you are dealing with medical grade melatonin, that is one thing, but the things that we are talking about here are things that are going to be promoted by, as Jopfi said, what did you call that? Wellness Wankers. He did not use that. Hopium merchants. Hopium merchants. Yeah, there's a lot of that out there and it's very hard, almost the entirety of the science in Long COVID exists within this middle space between something that's well-established and stuff that's obviously complete nonsense and where you put stuff within that huge spectrum is really tough and all of these supplements exist in that space. So it's very, very hard to get a clear handle on how affected they might be. So people do need to do their research into brands and into what testing has been done on anything that they might consider buying. And on the flip side of what you just said, there is also that fact that if people are already in a state of crash, it's that idea that you can't add to your symptom set bucket with a new supplement or drug when you're already in this dysregulated state. It was Melanie Hopper's that was saying to me, you can't add things when you're in that crash because your body is so overloaded already, it doesn't necessarily know what to do with it. So a lot of the time we in desperation think, oh, I'm in a horrible state, I'm going to try this. It's also best to try those things when you are in a slightly more stable state as well. Maybe the effect are not necessarily the supplement that you added, but your physical state when you tried it. There is so much great area in this. I am going to adopt the term regular armor material that Jophie used for the supplements and things that I take. But actually, I don't take any medication apart from HRT now, but I do think that the progesterone that I take is huge for my sleep because I notice when I don't take my progesterone that I do struggle to sleep. So whilst I think that I'm not actually taking any one drug, perhaps that might enhance my sleep, I'll probably find that the hormones that I take have had a huge impact on my sleep. But that is a whole subject for another episode. Jairs, thank you so so much for joining me today. I'd love to hear from people. I would like to know if Jairs and I breaking things down in this way, talking about these subjects is helpful to you and if you are enjoying this more personalised approach to it. Jairs, thank you so much for joining me. Thank you for having me. See you next time. See you next time. Thank you for listening to Make Visible. Please do like, follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com. [Music]