S2 Episode 6: This is Insomnia Transcript

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Having to roll out of bed with no sleep, it’s brutal

Allison: My eyes would feel like baseballs, I guess, and someone else described it. I heard them describe it as having like a blockhead and that resonated with me a lot.

Diane: Living with chronic insomnia is hard both mentally and physically. It can also be isolating, because every ounce of energy goes towards one thing:

Allison: Just dragging yourself and forcing yourself, like all day, to just get through the day. Just get through the day. Just get through the day,

Diane:  This is chronic insomnia. 

Diane: In this episode, we’re going to talk about insomnia. I think just about everyone has a sense of what it is – most of us struggle, now and again, to get the restorative sleep we need. 

Whether it’s a noisy neighbour, a disruptive pet, a work stress or even a child with a tummy ache – our usual sleep patterns can be disrupted, but mostly get back on track quickly.

But for others, insomnia becomes a disabling disorder that impacts every aspect of their lives.

So, let’s get into it! What causes insomnia? What does it do to us? And most importantly, for those of us plodding through the day tired and blurry eyed, what can we do to get a good night’s sleep? 

I’m Dr Diane McIntosh. Welcome to PSYCHEDUP.

So, some of the disorders I talk about on this show are complicated to describe and difficult to imagine if you haven’t experienced it yourself. Insomnia, that’s an easy one. 

The word literally means an inability to sleep. About 50% of the population will experience occasional, short-term insomnia. It’s probably safe to say everyone has woken up feeling unrested – and when it happens once in a while, it’s manageable.

However, the chronic insomnia that is associated with an insomnia disorder is a whole different story. This affects about 10% of the population.

Having insomnia disorder means you’re not getting the sleep quality, or the amount of sleep you need, to function well.   The diagnosis requires that sleep difficulty occurs at least 3 days a week for at least 3 consecutive months. 

That’s a lot of sleepless nights. 

As you can imagine, or maybe as you know all too well, a lack of restorative sleep results in daytime impairment at home, work or school. It affects our ability to learn, to work, and even to socialize. 

Our guest knows this only too well.

Allison: Hi, I am Allison. I’m 52 years old and I’ve had insomnia for most of my adult life.

Diane: Having an insomnia disorder can mean difficulty getting to sleep, staying asleep, or awakening too early and then being unable to get back to sleep. This is what is was like for Allison:

Allison: A bad night, which was very common, I would fall asleep really fast, but I would probably sleep for three or four hours and then I would be up for between two to three hours every night. It’s extremely frustrating, especially when you know you have to work the next day.

So I, you just toss and turn and watch Netflix, listen to podcasts. I didn’t really want to get up that much because they do say you’re supposed to get up and walk around, but I, you know, I’m exhausted. Like I just wanna go back to sleep. Right? I don’t wanna get up, I just wanna lay here and have a good sleep.

So, yeah, it’s stressful, right? The stress builds too because, you know you have to get up and work and you know, like last night was the same and the night before was the same, and then it’s just kind of everything, like compounds on top of each other. Um, and then you might fall asleep again maybe for an hour, and then I’d have to get up and go to work all day and I would be so frigging exhausted.

Diane: For Allison, the nights were difficult. Frustrating, fruitless, fraught, but then inevitably morning came. And with it, another f-word. 

Allison: I don’t know if I can swear, but it was always a swear word. Like that’s how I would wake up every morning. With a four letter swear word or I wouldn’t even, like, I wouldn’t get back to sleep, so sometimes I would just be up anyway. It’s like, well I’m, I’ve been up since three o’clock. Like, it was crazy.

Diane: And of course, chronic insomnia can obviously lead to daytime consequences. Things like fatigue or low energy, impaired attention or memory, irritability and low mood, and, of course, a whole lot of distress just from trying to get through the day with all, or even some of those symptoms.

Regardless, Allison would get out of bed and go to work.

Allison: I don’t think being tired is, you know, a reasonable reason to call in sick, even though I probably should have a bunch of times, but I never did. But the work always got done. 

Diane: It’s important to note that there are financial costs to chronic insomnia. People who have it have higher rates of workplace absenteeism and presenteeism, which means they’re at work but their brain isn’t, they’re not able to perform optimally. 

It also creates a greater risk of workplace accidents and motor vehicle crashes, and has been associated with much greater healthcare utilization than for people who are good sleepers.​

In Canada in 2021, the total healthcare costs related to insomnia symptoms were estimated to be nearly $2 billion. Most of which was related to work absences and reduced productivity.

There are other costs as well.

Allison: It affected my life in like a million different ways. Like socially, I didn’t wanna commit to things ’cause I never knew how I was gonna feel. So like my husband would be like, oh let’s you know, do you wanna do this on Friday night? And I’d always hesitate ’cause I’m like, I don’t know, like usually I just wanna come home and not do anything ’cause I’m so tired. 

Diane: Chronic insomnia is burdensome, it has an impact on quality of life comparable to that seen in other chronic medical conditions. It can worsen the course of existing medical illnesses, creating a vicious cycle between poor sleep and poor health.​

Allison: My physical symptom, the biggest one was my eyes just feeling like they were like pounding, um, from like inside of my brain. And, um, like the blockhead just, you know, not really being able to comprehend stuff and kind of, um, working on autopilot, I would say. like you’re just dragging yourself and forcing yourself, like all day to just get through the day. Just get through the day. Just get through the day,

Diane: So it makes sense that many people living with chronic insomnia become excessively focused on sleep. This can lead to maladaptive coping behaviors, like, spending long hours in bed and napping, and of course that only compounds the problem. 

Some come to experience what’s called “conditioned arousal”, where they feel “wired” and more awake as soon as they get into bed.​ Sadly, in those cases, their bedroom can become like a torture chamber.

Allison: Sometimes I’ve, you know, walked into my bedroom and I’m like, oh my God. Like I don’t even wanna be here, you know? ’cause then you start developing like all these like bad feelings ’cause you know you’re gonna be up again. 

Diane: Chronic insomnia is also associated with an increased risk of developing both depression and anxiety.

But despite these negative symptoms, and its frequency and burden, chronic insomnia remains underdiagnosed and undertreated.

Allison: I had a doctor since I was 16 and she retired  during COVID. I used to joke and say that I probably was one of the reasons because I would constantly call her and say “you need to help me – I’m not sleeping” And she got so sick of me. At that time to be fair, it was all sedative. So basically you’re looking at, you know, like any type of, like Lorazepams for example, or um, Zopiclones. So I was younger too, so she didn’t want to put me on that. And she didn’t really like to write a lot of heavy duty medications. So, she told me when I woke up in the middle of the night to eat a banana. Or like a piece of bread. And I’m like, oh my God. And I’m like, yeah, I think it’s more than that. Um, so I, I had been to her like a zillion times and nothing was helping.

Diane: So let’s talk about treatment.

But first, I just want to acknowledge that what Allison is describing here is awful and debilitating, as are so many other psychiatric disorders that we can experience at different times in our lives. 

Most importantly, I want you to know that you aren’t alone and there’s always a path ahead. I hope that’s what you get from this show and I’m hoping that anyone else who needs to hear it will also get that same message. 

So please, share this with others. And follow, like and leave a comment in your listening app. It helps others find us. We also have links to more resources in the show notes.

Please, take a look, take care, and on with the show!

Diane: We all know there are so many misconceptions and misunderstandings about mental illness, that in every episode I want to share a snippet of something I think you should know. I call it my shrink wrap.

When it comes to sleeping, there are some basic things that every should know – they’re often called sleep hygiene, or sleep optimization: 

Here are my top five: 

Number one: Avoid all caffeine after 12 noon and alcohol at night, especially close to bed. Nothing gets you to sleep quite like alcohol and nothing messes with your normal sleep cycle quite like alcohol. 

Number two: If possible, sleep in a cool, dark, quiet room. As much as you might love them, pets in your bed are disruptive. Sometimes partners are too, but that’s too big to tackle here!

Easier said than done is number three, no screen time an hour before bed (that includes TV, phone, computer, etc). Turn off all your beeps at bedtime, too. 

Number four, another hard one, but very helpful: If you can’t sleep, get out of bed and using a low light, read something boring. A knitting magazine or War and Peace will do. While you’re up, don’t watch TV or eat, since the lights, noise etc will wake your brain up and make it harder to sleep.

And, number five: My favorite trick is to alphabetize the US states in my head. I rarely get past Delaware. If that’s a non-starter, try another boring but challenging list, or walking yourself through the plot of a boring show. This distracts you from the worry and bores you back to sleep. 

While these are a great place to start, they don’t always work. They didn’t for Allison.

Allison: Like I’m trying to like, not make this sound as bad as it is but there’s really nothing good about it. Honestly. There’s nothing good about not sleeping.

Diane: So this seems to be the right time to bring in my wonderful friend and colleague, Dr. Randy Mackoff. As you will remember, Randy is a PhD psychologist and an expert in talk therapy while I, as a mere psychiatrist, tend to focus on prescribing medication for mental illness. Well, hello Randy. Such a joy to have you back in the therapist chair.

Randy: Hello Diane. 

Diane: We haven’t spoken in a long time. Great to speak with you.Thank you for being here, and today we’re going to talk about insomnia, really focusing on chronic insomnia, while medications are sometimes necessary and we can chat about that, it is universally agreed sleep experts around the world that the first line treatment, is to use a talk therapy technique, CBTI, which is cognitive behavioral therapy for insomnia. And since we have a CBT expert before us now, Randy, tell us a little bit about CBTI please.

Randy: Well, CBTI is, as you said, Diane, is really very effective in helping people be able to recover from their insomnia because it is a different way of thinking and behaving that includes sleep hygiene and phase of sleep issues. Um, and it is very, very effective. Basically there is first of all some psychoeducational information given, and I know psychoeducational information. What does that mean? It just simply means providing information. A lot of the information is about the connection between thoughts, feelings, behaviors, and sleep. And it gives a framework of understanding rather than things just being thrown out with no understanding. The educational part is so important because it gives structure and it gives motivation.

That is often followed by what’s called cognitive restructuring and/or reframing, and that focuses around thoughts about sleep that lead to behaviors that make sleep more difficult. And one of the things, for example, is people know they have had difficulty sleeping. And so when they go to bed, they say to themselves, I really need to sleep. I really need sleep. I can’t function without sleep. And when they start talking to themselves that way, what happens is that causes the person to become anxious. And anxiety interferes with sleep. And secondly, it causes the person to spend too much time in bed to try to force sleep.

And so what we want to do, and this is just an example, is restructure that, which is that you don’t need sleep. What you need is rest. Because the more you tell yourself that you need sleep, the more difficult it becomes because you can’t just force yourself to sleep by saying, I need sleep. It just increases the anxiety, increases the worry, and then it extends the amount of time spent in bed not sleeping, and that creates additional problems.

Diane: So Randy, you’re saying to people: “Sleep is great, but most importantly, you need to rest and even when you’re laying there and working on your relaxation, you are actually resting.” So shifting the thinking away from “I’ve got to sleep” to “You are resting” and that resting will hopefully lead you to sleep.

Randy: Absolutely. And also not only does it reduce that pressure, um, it, there’s truth to it. So one of the things is I, historically, I don’t do so much work with this population anymore, but I used to work with a lot of, uh, elite athletes and before competition athletes, as many of us do before, anything that’s tension filled, have difficulty sleeping.

And many would come and say, I can’t sleep. I’m not gonna be able to perform. But that is quite far from the truth because with rest, they will be able to perform it and paradoxically by saying, “I just need rest,” they actually fall asleep. And it allows them to have control over their thoughts and to reframe their thoughts and to refocus onto a dream that they want to have or onto something that is outside the realm of worry.

Diane: So I just wanna be fair to people who have either tried this or feel like my sleep is terrible and this is just not going to work tonight. Some of these things that we’ve recommended, these things take time and so, and different aspects will work for different people.

There is a lot of data. It is why it is recommended as first line treatment for CPTI. However, there is a cost associated with it. Whatever you need cognitive behavioral therapy for, it’s hard work and you can be too ill to be able to adequately have the cognitive capacity to be able to do that work sometimes, but also it does require a lot of commitment.

Randy: It sure does, Diane, I have a huge amount of compassion for when people have gone in and they’ve gone to see a psychologist or a therapist and they’ve received CBTI. And they come in, they say, I’m so discouraged. Nothing is working. I’m exhausted. And then they have a bunch of other negative self-talk describing why they have failed and, and blaming themselves for this. When there are a multitude of factors that interfere with sleep, and it can be anything from, uh, a major depressive episode to severe anxiety, post-traumatic stress disorder. Um, there are a host of other disorders where it interferes with sleep and then the sleep worsens that particular disorder.

Diane: Randy, our listeners are obviously podcast fans, and I know some people love their true crime, and they listen or watch it before bed. I recommend against that. True crime is too engaging – I say boring before bed is best.

Yeah, and you know, I think people choose that hour to read something that’s exciting or to listen to a podcast that’s very exciting because this is the only time of the day that they feel they’ve got a break. Um, and so they’re lying in bed and they’re thinking, oh, I’m gonna use this time to learn something or to experience something that feels kind of pleasant or something that I’m really, you know, enjoy hearing about, but the timing of it’s just not right. You know, I would encourage people if they are wanting to listen to something, um, is to have an app that has bedtime stories, and those go off automatically after about 30 minutes. And the key to those is, one is to like the voice of the person that you’re listening to, to enjoy the story and to experiment with how long it takes you to fall asleep or to return to sleep. Because when you wake up in the middle of the night and you’re tossing and turning and all these thoughts are going through your mind, you know, one of the things is you’ve gotta get out of your thoughts and refocus and sometimes those apps can be really, really beneficial to do so.

Diane: That’s one of the things that keeps people up at night really, is their inability to turn off those worry cycles. And remember that when you’re asleep or close to sleep and you start to worry, you don’t have your whole brain there to be able to give you a sober second thought and kind of reflect.

So we’ve all woken up in the morning knowing we’ve worried sick about something, and it’s so clear to us the next day, why was I worried about that? And the reason you worry about it is because only part of your brain is actually focused on it, and the rest of your brain is kind of asleep, and therefore it tends to take on so much more importance than it normally would in the middle of the night.

Randy: We both agree about the importance of a wholesome overview of someone’s health to make sure there’s not any kind of other, uh, psychiatric disorder or physical health disorder that may be contributing to the insomnia and also need to be treated. But people often struggle to get the right diagnosis, and we know that insomnia is often dismissed.

Uh, underdiagnosed absolutely. Also, a lot of people are afraid of treating it properly, especially with medication out of concern about some of the medications that we have and concerns about dependence and doing more harm than good. And you and I both know what happens when you have insomnia and people aren’t taking it seriously and it’s not getting treated. People start to self-medicate.

Our guest Allison has had some experience with that.

Allison: I was taking a lot of over the counter products, which bothered me because I know that they are not for sleeping right. So, um, you know, like the over the counter sleep aids. But I had probably had 20 to 30 I had in rotation and I was kind of like, you know, experimenting and some would work for a while and then I would add another one on and you know, so I kind of was like a professional as far as, um, knowing how to rotate that medication to try and get some sleep. Um, but I know like physically that’s not good.

Diane: 20 to 30 over the counter medications. Allison is right to be concerned about the effect on her health. 

Randy:  Interestingly there’s a lot of information that’s gone viral about very, very dangerous ways of trying to resolve sleep problems and insomnia. And, uh, and some of these are actually hazardous and, and can cause serious harm. The more common ones though, are people turning to alcohol, turning to marijuana. Uh, and using other over the counter medications. And one of the things that happens from that is that sometimes they do fall asleep from that, but they don’t get a restorative sleep. And one of the things about restorative sleep is you’ve gotta go through the proper phases of sleep so that the brain gets bathed in the proper chemicals that leads to being restored, feeling healthy, and having our brain work efficiently

Diane: And for some of these over the counter aids – using gravel for instance – those kinds of treatments that have a high antihistamine effect can make you feel really exhausted the next morning. There’s a lot of hangover effects. There’s increased risks of falls, that sort of thing. There are a few over the counter treatments, melatonin being one that people can find quite helpful and there’s some data to support that. But very few that are ones that I feel really comfortable with. So one of them is melatonin that is used in the short term (as mostly aids are meant to be) can be quite helpful for people, including young people who have ADHD. Their brain tends to hop from one thought to another, and that can be quite helpful.

Randy: And Diane, you and I have worked together with many, many patients of having them see the psychiatrist in this case, Dr. Macintosh, Diane. And, being talked with about, medication and the different types of medication and what to expect from medication and knowing that they have other avenues of helping them restore their sleep and really be able to start to build that confidence and then be able to use the CPTI even that much more effectively. So, Diana, if it’s okay with you, ’cause I always love hearing this, I’d love to hear about the different types of medication, what people can expect and, and, and what’s happening in the world of medication and sleep.

Diane: Randy, there are many prescription options for insomnia, but most come with significant side effects, like excessive daytime sedation, as well as confusion and memory loss and increased risks of accidents. Additionally, some come with a risk for misuse and dependence, because, over time, higher doses are sometimes required to get the same beneficial effect. This is especially true when another psychiatric disorder isn’t properly diagnosed or treated.

I include the z- drugs, like zopiclone and zolpidem, and the benzodiazepines, which are the “pam” drugs, like lorazepam, temazepam or oxazepam, in that group for high risk sleep medications.

Some antidepressants, like trazodone or mirtazapine, are sometimes used for sleep, but are really relying on the side effects of the medication and their data is poor for chronic insomnia. Antipsychotics, like quetiapine, can have serious side effects, so they should never be used as a primary sleep treatment.

Happily, over the last few years, we’ve had some new, innovative treatments come to market. They’re called DORAS or Dual Orexin Receptor Antagonists. This class is really generally very well tolerated, they don’t have the over-use or dependence issues, the daytime hangover or falls risks associated with the other sleep treatments.  

There are two DORAs available in Canada, lemborexant (which has the brand name  Dayvigo) and daridorexant, also known as Quvivic. Both DORAs have unique attributes, so if one doesn’t work well or isn’t well tolerated, I prescribe the other.

Randy:That’s great Diane, and, and you know, just the whole medication discussion is, is so helpful for, for people to know and understand and not to be scared of, especially, you know, going to their physician and they should feel free to ask all the questions that they wanna ask and get clarification because it’s really important. And getting control over one’s sleep.

When I say control, being able to sleep. You know, and what, what’s the right amount of sleep? Well, you know, when I read the research that’s done, I’m looking at anywhere between six to eight hours of sleep, not all the time, but more often than not, it really improves quality of life. And, and, and helps with clarity of thought and one being able to enjoy their life that much more.

Diane: You are someone who brings joy to my life. Randy, thank you so much for your time today and for your brilliance.

Randy: Thank you very much Diane, and you bring joy to my life as well.

Diane: Aw, thank you. Have a wonderful day.

Randy: You too.

So, when we left Allison, she was short on sleep and experiencing Block Head. But thankfully, that’s not where her story ends.

Allison: My old doctor retires. The new doctor starts, So I’m like, well, I’m gonna go to her and see if she can help me. Right. ’cause I’m still having major sleep issues. So, luckily at the time, um, what happened was there was a new medication on the market and she said, okay, well here’s some samples for, um, you know, it’s a new medication.

But I felt like it wasn’t working at the time. So then I switched to Quviviq from Dayvigo, and that was the game changer for me. That’s kind of when things started to turn around. Basically, like right when I started to take Quviviq, I started to sleep.

And actually like went from, you know, broken sleep to I still wake up frequently, but I fall back asleep, which is amazing. And I’ve probably gone from like, some nights I might get, I might have gotten like three to four hours sleep, and now I’m regularly getting from seven to nine hours of sleep. It’s crazy. And not only that, but I feel so much better. Like I can tell that I, I’m actually rested, like for the first time in my life, I’m rested. 

Allison’s perseverance paid off. And, modern medicine caught up. This is why it’s important to advocate for yourself and talk about sleep with your health care provider.

If you’re struggling, bring it up. Sleep is so important, you deserve to get some. 

Allison: So you just gotta keep fighting. You gotta keep fighting. And every day is a new day and hopefully, um, you know, you find something that works for you.

Like not sleeping is probably wrecking your life. So if there’s anything you can do, um, to help yourself, it, you know, just will totally improve your life in every single way. In every single way, and you will feel like you’ve never felt before. Like that’s how I feel now. Like I’ve never actually known what it was like to not feel exhausted all the time. Um, and now I do.

Diane:  Thanks so much for sharing with us, Allison!

We also have extra resources in the show notes. Please take a look and use anything that might help.

And if you like what you heard, please follow and rate the show. It helps other people who might need or want some guidance to find it.

Our producer is Tori Weldon, with consulting by Steve Pratt. Mark Angly of Square Wave Sound wrote our original theme song and sound designed the show.

Until next time. I’m Dr Diane McIntosh, thanks for listening to PSYCHEDUP.