What Doctors Get Wrong About Sleep and Mental Health with Barry Krakow

Sree Roy:

Hello and welcome. I’m Sree Roy with Sleep Review. And I’m thrilled to be here with board-certified internist, sleep medicine specialist Barry Krakow, MD, who has worked in the field of sleep research and clinical sleep medicine for more than 30 years, pioneering innovative techniques for the treatment of chronic nightmares, chronic insomnia, complex insomnia, upper airway resistance syndrome, obstructive and central sleep apnea, and restless legs syndrome and periodic limb movement disorder. He lives in Savannah, Georgia, where he is a professor of psychiatry and behavioral health in the department of psychiatry at Mercer University School of Medicine. Currently, he trains psychiatry residents in sleep disorders medicine, supervises their sleep medicine clinic and conducts a private sleep coaching service at barrykrakowmd.com. His recently published book, Lifesaving Sleep: New Horizons in Mental Health Treatment is available wherever books are sold.

We are chatting about what your doctor is getting wrong about sleep and mental health.

When sleep disorders are comorbid with mental health conditions such as anxiety, depression or PTSD, how is the sleep disorder typically addressed by healthcare professionals?

Dr. Barry Krakow:

Great to be with you, Sree. It’s been a while. It’s great to have this discussion with you.

And of course, you’ve started with the most salient question that is very important and very concerning as to what is actually going on in both the mental health communities and the sleep medical professional community.

But let’s start with the mental health community. The problem is that there continues to be a conventional wisdom that seems to be unshakeable for the large proportion of therapists, psychologists, psychiatrists of what does it mean when a mental health patient has a sleep problem? And the big deal is that these professionals, as sincere and well-meaning as they might be, still to this day do not understand that these sleep problems are sleep disorders. You and I can use that term because we’re very familiar with sleep disorders. We talk about sleep all the time, and we know there are symptoms, there are problems, there are conditions, but the heart of the matter really is a disorder.

Somebody has anxiety, depression, PTSD, these professionals, as well as their patients, are hearing over and over again the mental health disorder caused the sleep problems. So let’s treat the mental health problems and your sleep problems will go away. And what’s the net result of that? The net result is: the only behavioral therapies any of these people get is a brief course in sleep hygiene, which often doesn’t work for mental health patients with fairly moderate to severe mental health problems. But then of course the big one is the prescription pad—medication trial after medication trial.

I want to mention to you an example of this because in my coaching service, I just worked with a 53-year-old woman who has been suffering insomnia for 20 years. Before that, she had some off-and-on problems with her sleep in the last 20 years though it got noticeably worse.There’s clearly some trauma history. There is a diagnosis of PTSD, there’s some anxiety, there’s no depression. Would you like to know how she’s been treated for 20 years? She has received 15 different medications. She has been to five different psychotherapists. She’s been to three different prescribing psychiatrists. And this doesn’t even take into account all the comorbid medical conditions she has where she goes to those doctors and also complains about her sleep. By the way, she’s been to two sleep centers and both of them gave her very, very equivocal information. One said, well, you have a lot of spontaneous arousals on your sleep and we don’t know what to do with that; that’s probably your depression, that’s probably your PTSD. Another person who apparently did not understand how to diagnose upper airway resistance syndrome told her that she had mild sleep apnea and not to worry about it, and that a CPAP machine probably wasn’t worth trying because it would probably just upset her and it wouldn’t really… In fact, it would probably make her insomnia worse.

This is not an atypical case. I haven’t been seeing cases like this for over 20 years. Now since we moved to Savannah, Georgia, and I’m focusing more on coaching individuals with these kinds of problems, virtually everybody who is contacting me for help has a very similar story. And when we were doing the sleep center back in Albuquerque, of course we specialize in mental health patients, so we were expecting this. On the other hand, we’re still thinking: When are the therapists and the psychiatrists and the psychologists going to recognize, one, the medications obviously are not working that well for most of their patients? Two, when are they going to see that they’re outside their own field of expertise and refer to sleep centers? And three, the biggest one and the most concerning is, do they not get that if you treat the sleep problem, the mental health problem is going to get better too?

You would think by now that data, which has been out there for a couple of decades, that the mental health community would abide by this to work with their patients and say, “Oh, you’ve got a sleep problem? You’ve got to go to a sleep doctor or a behavioral sleep specialist, or we’ve got to do… You can read some of Dr. Krakow’s books if you want, and all kinds of other books that are out there by other sleep professionals.” This is what Life Saving Sleep is about, the fact that this connection has not really been established in a professional way.

So there are literally millions of mental health patients who are receiving poor treatment for conditions like insomnia, even nightmares, and many of them have undiagnosed sleep-disordered breathing, and a lot of the doctors don’t realize that these patients could all benefit from PAP therapy. And I’ll just say, as an aside, if you know my work, we stopped using CPAP in 2005. We only use the advanced PAP machines bilevel, auto bilevel, ASV, because we found it much easier for these mental health patients to adapt to them.

So that’s where things stand in the mental health community. But your question, it’s asking about healthcare in general.

The primary care doctors don’t get this. The OB/GYN doctors in general don’t get this. Many of the cardiologists get it. Cardiologists are really sinking their teeth into sleep medicine. But the place where it’s even an additional big concern is that much of the sleep medicine community doesn’t get it.

The sleep medicine community doesn’t understand that the largest cohort of patients that they have to serve or that they will serve, we should say in the future, is going to be the mental health community. Because so many of these people have these disorders, insomnia, sleep-disordered breathing and so on. But right now, and I remember this from my original training back in the 1990s, and I still see it in the 21st century, that sleep medicine centers are not geared, not set up to be working with mental health patients unless they happen to have either a behavioral sleep medicine specialist or perhaps a psychologist or psychiatrist working at the facility.

And so many of these sleep centers operate like the factory criticism we’ve heard before about just get them in, get them diagnosed, put them on a PAP machine and then you’re done. That doesn’t fly with mental health patients. They need a lot more coaching, a lot more – work. This is why we invented the PAP Nap procedure 15 years ago to give people a chance for this opportunity to desensitize themselves to PAP.

Regardless, the big deal is that the sleep medicine community is failing the mental health community as well because they should be welcoming them with open arms saying, “We have got what you need. We have got treatments for insomnia,” and so many of them have insomnia. “We have treatments for sleep disordered breathing.” And just astronomical numbers of these patients, I don’t know if you know from our original research, we saw that 80% to 90% of trauma survivors with PTSD or post-traumatic stress symptoms who had a sleep complaint, 80% to 90% had sleep apnea or UARS.

Sree Roy:

In the example that you gave, I am confused about how the sleep centers, the two of them, missed her sleep-disordered breathing or told her not to worry about it.

Dr. Barry Krakow:

Extremely common. I daresay the word scandalously common.

Because number one, if you don’t appreciate UARS, which many sleep centers still avoid, they discount, they ignore, they’re just not into it. They may put in a little RERA index into establishing the full RDI. But you bring up the word UARS, you have a discussion about it and it’s like, “Oh, well, that’s not that important.”

There’s also the continuous statement about, “Oh, it’s ‘spontaneous arousal’ because they’re not even looking for the RERAs.”

But I think the big thing is, and I hate to say this because it just sheds a very poor light on those sleep doctors that are operating this way, and I wish they would just be more honest with themselves, they’re uncomfortable with these patients. They have not been trained. Most pulmonologists are not trained to treat somebody with PTSD depression or anxiety, so they don’t know what to do. And they actually will say to these patients repeatedly, “I can’t help you with that problem. Go talk to your therapist, go talk to your psychiatrist.” And then the patient hears it and goes, “Oh, well, so sleep medicine doesn’t even help me either. It’s again, go back and get more pills.”

We heard this story thousands of times in Albuquerque because we managed, over those 20 years, like upwards of 10,000 patients or more. And as I said, most of them were mental health patients. They were all getting these kinds of conversations. There was no dialogue of, “Wait, you have insomnia?” Well, insomnia is a disorder. Insomnia has various components to it, and there’s various ways in which we can treat it that have nothing to do with pills. And in fact, pills of course probably aren’t a very good long-term solution for you. So let’s give you some of these opportunities of education and behavioral changes and CBT-I [cognitive behavioral therapy for insomnia] type programs.

My point is, unless they have the person in the center who wants to work with the mental health patient, and these people are very complex and they are suffering tremendously. And because they look like a suffering psychiatric patient, the sleep center staff often writes them off as only psychiatric patients. “It’s a mental health issue. We don’t deal with mental health here; we deal with sleep.” And yet these things are completely intertwined.

We published the first paper, first randomized controls trial showing that when you treat a sleep disorder, in this case it was nightmares, chronic nightmares, with a simple behavioral treatment that was focused on treating the nightmares, not treating the PTSD, not talking about trauma. But when you did that, not only did the nightmares get better, but the PTSD got better. So that was the first randomized controlled trial to prove that idea.

Since then, many others have published similar papers. The data is out there; the evidence is out there. Many centers or many sleep research centers around the world are saying exactly the same thing I’m saying, and yet it does not disseminate into the mental health communities.

I have opportunities to still have opportunities to talk to therapists and psychologists all over the world. I have conversations with these people and when they’re talking about their patients, I can tell you, this is brand new. I’m like, “Wait, didn’t you have a CME course or a CE course? I mean, didn’t somebody bring up the idea that sleep apnea is incredibly common in PTSD or that insomnia needs its own special treatments that are far superior to medication?” This is not happening. And the mental health community, sadly, is missing out on an incredible opportunity to be able to help these individuals heal in ways that most never even imagined before.

And yet, what are the patients complaining about so frequently? “I can’t sleep,” or, “My sleep is horrible; what can we do about it?” And they get no information. They get very little support, and they’re clearly not getting guidance to say, well go to a sleep center and demand that they actually evaluate you fully. In fact, I should just say that as a sort of a closing point on the sleep centers, they will go to these sleep centers and they will have to beg to get a sleep study. Beg. The person comes in, they’re not overweight, they’re not complaining of being sleepy. They end up having to have a discussion. And the doctors and the staff are saying, “Well, I mean you couldn’t have sleep apnea. You’re thin, you’re not sleepy. You don’t even snore. I don’t know why you have non-restorative sleep. It must be your PTSD.”

I’ve heard these stories countless times, and like I said, it’s very concerning and it is going to be causing, ultimately, I really hate to say it, medical-legal problems because doctors are required to keep up to date on knowledge. And if something continues to go undiagnosed, the patient has every right to complain say, “How did you not send me to a sleep center for an evaluation?”

Sree Roy:

Do you think for sleep centers, it’s not so much that they’re not comfortable with mental health patients, but that the reimbursement kind of disincentivizes them from spending all of that time to properly evaluate these patients and treat them and then possibly file for the advanced PAP therapies, all that? It’s not like a straightforward case.

Dr. Barry Krakow:

Well, I do agree that the decline in healthcare in various sections of medicine and even psychology, the decline in healthcare is obviously been affected by these tremendous administrative burdens that have come about by the combination of insurance and the government. And when you have that, you’re absolutely right that facilities are looking for how do we try to provide good quality care, but at the same time, we have to look at the budget. We have to be profitable. If you’re not profitable, you can’t stay in business.

So I do think that’s reasonable, but we didn’t have that problem. I mean, we found ways, a PAP Nap that we devised was reimbursable and it more than paid for itself and the time of the technician who did that. We taught sleep techs to do certain kinds of coaching appointments. The patients would come in and there was codes then; I don’t know if they’re still being used. I think one was a 94660 that people use for reimbursement and that got reimbursed.

I mean, you can produce efficiencies, especially with technology nowadays, to gather lots of data on your patients and try to save time that way. But I do think people have to revamp when they realize there is something here that is a market that’s not only not being tapped or you could make some money, but also not being tapped to help the people who really need this care.

And I will say that, it’s funny you asked the question that way because over the last three decades in my travels, I have been in touch with some of the top psychiatric hospitals in the United States and in other places in Europe and Israel, and raised the exact question of, “Well, why don’t you put a sleep center into your psychiatric hospital?” Every single one of them said it could not be done because there’s no way to reimburse it. That was the only answer—had nothing to do with quality of care. At the time, I believe that none of the people recognized how important it was or how valuable it would be. But it also was like, well, that’s just a non-starter; we can’t do that. We don’t have any way to bill for it. And that’s a very disturbing thing in medicine, again, when you have heavy burdens placed upon you from insurance, from the government, you have all these rules and regulations, all this tremendous paperwork, half of your staff or more is involved with these kinds of shenanigans that have nothing to do with healthcare and everything to do with bureaucracy.

Now, some of that is relevant of course, because you have to have a system that operates, but the extent to which it is expanded is ruining healthcare, and it is causing tremendous havoc in many areas of medicine. Sleep medicine clearly is suffering from this administrative burden. The DME companies suffer from it. And you would think that by now, somebody would say, “Well, what do we do to streamline this and make it better? We know how important sleep is.”

Sree Roy:

How is, or should, sleep medicine get the word out to the mental health community? And I’m also thinking: there’s CBT-I apps out there now, and sleep specialists typically do know about them, but I don’t know that the mental health community is aware of what’s available on that front.

Dr. Barry Krakow:

Well, that’s two good questions. Let’s see if I can remember them as we go through it.

Regarding the CBT-I one, I want to say that yes, there’s apps out there, but the thing about, I’ll plug my book here and say in my book, Life Saving Sleep, I mean, there’s tons of information that a primary care doctor could read and learn CBT-I. CBT-I is not that difficult to learn. In fact, that’s what’s been kind of concerning to me, that there’s been a push in sleep medicine to say, “Oh, we have to have more behavioral sleep medicine specialists because of CBT-I.”

No, we need more behavioral sleep medicine specialists to do what? Train primary care doctors how to do CBT-I, because that’s really where the action in, and there’s no excuse. See, absolutely primary care doctors should be conducting CBT-I treatments for most of their patients. It would be very straightforward approach. I’m surprised it hasn’t been put forward yet. And as I said… What was the first question?

Sree Roy:

Absolutely. The first question was: how should or is sleep medicine communicating this to the mental health community?

Dr. Barry Krakow:

What we used to do was actually give lectures in services to mental health clinics. It was that simple. And when we would go there, this is in Albuquerque, when we went there, I mean the audience, the staff, it could have been five people, it could have been 35 people. They were in awe. They were like, “We’ve never heard this. We didn’t know this was the way these things are working. We’re going to send you patients like crazy.” And that’s exactly what happened. And so again, the particular sleep center involved has to decide how and who in their staff is going to be the go-to person who’s going to say, “Well, no, I want to see these patients. I like this complexity. I’m looking forward to doing that.”

I believe that’s going to be a big change in sleep medicine and not just because of behavioral sleep medicine. I believe some sleep doctors or it could be a physician’s assistant, it could be a nurse practitioner, they will then be established as the go-to person where send these more complex mental health patients to that individual knowing that there’s going to have to be multiple appointments and more long-term processes in terms of PAP adaptation and so on. I think that is one of the ways this can happen. But number one, the people in that sleep center have to decide they want to understand all that’s required to help these patients. Because if they go in and say, “Okay, well, they all have to try CPAP for three months and fail it, and then they go to ASV or auto bilevel,” that’s a huge mistake. CPAP failure has never been technically defined. Nobody has an exact definition of CPAP failure.

So we discussed this with many insurance companies when we were working in Albuquerque, and we learned that you can have CPAP failure literally in the sleep lab. The very first time somebody tries CPAP, there’s certain grounds can be met, certain criteria, say that’s CPAP failure. And then you switch them over to the newer device and the patient gets on bilevel and go, “Wow, that’s completely different. I mean, that’s much more comfortable, I’m willing to try this.” In today’s model with home sleep testing, it’s a little bit more difficult because you say, well, how long does the person have to use their AutoSet, which is what they all get now, an autoCPAP. And so what the patients who I’ve dealt with in my coaching service, they will say things like, “Well, every time I go back to the sleep facility or the DME or both, they just say, “Try harder. Just keep trying harder. Just keep using it. Eventually you’ll adapt to it.”

And we showed in a research study that was published about five or six years ago, that’s not true. We saw patients who had come in who’d been on CPAP for a couple of years, and they still had central apnea from their CPAP. They still have what we call expiratory pressure intolerance. They still had sleep fragmentation. Their sleep quality was ridiculously poor on CPAP. It’s amazing that they still were using the CPAP. We’d switch them over to these other devices and they would be excited and say, “That’s very different.” And some of them would get very angry and they’d say, why was I not given this machine before? Why did I have to suffer through all of this stuff with CPAP?

So that’s an area I’m saying that the center has to decide what is it willing to do differently to help these patients. On the mental health side, it should be as simple as saying, “Are you willing to learn how to screen for a sleep disorder?” Instead of just saying, “Oh, it’s related to the PTSD,” how about asking 10 questions about your sleep? “Hey, do you wake up at night to pee?” “Gee, that’s interesting. Did you know that that could be caused by sleep apnea?” “Do you wake up in the morning or in the middle of the night with headaches or dry mouth?” “Oh, that’s interesting. You could be mouth breathing or having some other kind of biochemical reaction that’s producing a headache from the buildup of CO2 inside the brain.” All of this kind of education, these mental health patients, they love it.

And you probably know why, because anybody who has worked with mental health patients or read about it knows that it is so enlightening and satisfying for them to hear that part of their problem isn’t psychological, it’s actually physiological. And so they’re jumping up and down. We were very shocked. This is probably one of the biggest shocks we had when we were working in Albuquerque. The number of PTSD patients, we’re talking about moderate to severe PTSD, who after getting a diagnosis of sleep apnea, and we would show it to them on the computer, we’d say, “Okay, so the treatment is generally a PAP machine. What do you think?” And they go, “Let’s do it. Let’s do it.” Because they wanted to treat the physical condition.

Sree Roy:

Can you touch a little bit on the distinction that you make between quality versus quantity of sleep?

Dr. Barry Krakow:

Sure. In fact, that’s the major theme of the book, Life Saving Sleep, that the pathway to help a mental health patient with insomnia, with anxiety, with depression, whatever, all the coexisting sleep complaints and the coexisting mental health complaints. They have been routinely told by their doctors, “Take this pill to get more sleep.” So the patient turns around and whoever they talk to, they’re going, “Okay, well, I need more sleep. I need more sleep.” And I go, “Okay, well, what kind of more sleep do you want? You want more bad sleep or do you want some good sleep?” And the question is disarming, because most of these individuals have never been asked to really dive deeply into what is the quality of your sleep. In fact, the most common answer for ‘what’s the quality of your sleep?’ to a mental health patient is, “I sleep six hours.”

And you go, “Wait, wait, wait. I didn’t ask you how many hours you sleep. I didn’t ask you about the duration, the quantity. I said, “Can you tell me something about the quality of your sleep?”

More than half of them can’t even answer because they’re on drugs and that’s doing something to their sleep where they go, “I don’t know. I can’t…” The point is this is a new construct for them, but when they hear it and they start having a discussion about it, they start saying, “Oh, so you’re saying that the quality of my sleep is linked directly to the way I feel the next day? Well, that’s interesting that that’s like my mental health stuff too, isn’t it?” I say, “Yes, exactly. Sleep and mental health are joint at the hip.” So we then have this discussion about what’s your energy like when you wake up in the morning? What’s your energy like midday? What’s your energy in the afternoon?

And again, it is very complex when you’re dealing with people who are on multiple psychotropic medications that are affecting the way they feel during the day. So it takes quite a while to tease this apart for them. Sometimes you can get the patient to be able to go back in time and remember what their sleep was like before they were on medications, and they’ll give you a fairly accurate description of, “Yeah, I remember I used to be pretty tired. I was sleepy sometimes. I remember I wanted to sleep more than other people when I was younger. But then later I remember getting this insomnia problem and I was afraid to take any medication. But then the doctors convinced me to take medication.”

They hear this idea about quality, and you show them a picture of a schematic. And I have this in the book, Life Saving Sleep. I have a schematics of EEG where it shows what happens when you have bad sleep where your EEG, instead of being deep delta waves, you’re having this fragmentation putting you back into stage one or stage two non-REM.

And so people, when they look at a picture like this, it’s a very easy sell. They look at it and go, “You mean that’s what I’m doing in my sleep? I’m not going into this stage. I’m just having these awakenings and arousals all night long. Gosh, no wonder I’m exhausted. In fact, it’s exhausting looking at these pictures.” So again, it’s a buy-in right away like, “Well, I want to do something about that.”

Now, there are patients that are so severe and have been so, I don’t want to use the word brainwashed, but they have been so entrenched with the idea that it’s all about the medication. And mostly doctors have heard this story before like, “Doctor, I just need the right medication to fix my problem.” Those people take one to two years to work with. Because even if you do the sleep study and you even get them interested in PAP and so forth, or other what we call early conservative treatment steps, they still really must rely on medications for a long time because it’s in their mind, this is the thing that works, nothing else is going to work well.

Sree Roy:

That’s so fascinating. I always enjoy talking with you. Is there anywhere else we can send our audience for additional information, website, social media handles, that kind of thing?

Dr. Barry Krakow:

Sure. So one of my websites is lifesavingsleep.com. So that’s just immediate access to the book. My coaching service is barrykrakowmd.com. And then we’re just starting up our social media campaign, so there’s nothing in particular that I can give to you other than the fact that we have… Oh no, I forgot. I started a Substack newsletter a few months back, and so that’s called Fast Asleep. I think it’s fastasleep.substack.com. So I have pretty much a weekly article. Sometimes I’m putting up the podcast that I’ve been doing for the book. Sometimes I’m talking about some recent research stuff I’ve been involved with. But mostly I’ve been using it to comment on other research that I feel has been incomplete or missing out on things by not really addressing what we’ve just talked about, the quality of sleep.

When people talk too much about number of hours of sleep, it concerns me because it’s just not an accurate way to work with most sleep disorder patients. You need to really delve into, “Tell me about the quality of your sleep, and then let’s test and evaluate the quality of your sleep,” and learn from the data.

Sree Roy:

Excellent. Well, thank you so much for chatting with us about sleep and mental health. You can find Sleep Review at sleepreviewmag.com and on LinkedIn, Facebook, Twitter, and YouTube. Thank you so much for tuning in to this episode.