Unraveling Sleep Disorders: From SID And TBI To CPAP

Susan Hughes, MD

Thank you so much. I appreciate your offer to be here. And I appreciate the offer to speak to the people here at the summit. I think it’s going to fill a huge need that’s out there. And also get people asking better questions. So thank you.

Audrey Wells, MD

You know, I love that because sometimes it’s about starting with the right questions to really get down to what the need is. And I know that you’ve been generous in sharing your personal stories, so I want to start there to help the registrants of this summit kind of connect with you. Can you tell us about your background, particularly as it pertains to sleep?

Susan Hughes, MD

Sure. As you said, I am a now clinically retired physician. I no longer practice clinical medicine. I do get to teach at the medical school and teach doctorate. But I was a very busy, overworked physician slash mom. I think a lot of us here can identify with that. And I was really overextended looking at options. It was on 12/29/2013 that my life changed in an instant. And that’s when we were on vacation and got hit. Our vehicle spun and we got hit by an elderly woman driver borrowing a car. She never saw us. She never tapped the brakes. And in the spin, my head, this side of the head hit the window, dislocated jaw, traumatic brain injury, neck injury, orthopedic injuries, and life changed. My life changed. I had been looking for options, looking at ways to move past just the typical grind of primary care had opened a med spa, had an educational nonprofit and everything came to a grinding demand because my ability to track with my eyes was severely impaired. My ability to read was severely impaired. I still misspeak at times. My brain took a pretty big hit. I spent several years going through rehab. People say, are you done with rehab? But I think whenever someone has a traumatic brain injury, they’re always going to be in rehab. And unfortunately, a year ago in June, I had another traumatic brain injury by a red light runner. Hit me on this side of the head this time. So it was complete opposites, but they both interfered with my sleep. And that’s when you and I started talking. I had the luxury, if you want to call it that, of having a sleep study before I had my first car accident. It was mild, very, very mild.

Audrey Wells, MD

Mild sleep apnea. Is that?

Susan Hughes, MD

Yes. CPAP was not recommended. And then after the car accident, it was much more moderate. And I felt like I could not get enough sleep. I felt like I was not getting restorative sleep. It was hard to fall asleep and get into that deep sleep. And I think it all had to do not just with the trauma of having a traumatic brain injury as well as other injuries, but getting the brain to heal. And that was one of the things that I wanted to bring to the forefront was we don’t know enough about sleep in the brain. We don’t know enough about how the brain reacts to neurodevelopmental changes, reacts to neuroplasticity. Which is the creation of new neural connections within the brain. We don’t know enough about this, but we know that something’s going on.

Audrey Wells, MD

And then I think that’s evidenced every night. Our brains are sort of expired with all the stimuli of the day. And we need to spend an overnight sleeping to recover that. But where trauma is concerned, in your experience, that insult is kind of orders of magnitude above what’s normal.

Susan Hughes, MD

Absolutely. We had this incredible nerve in our body. It’s called the vagus nerve. And the vagus nerve starts back here, goes to the heart, goes to the lungs, gets to the gut. Why am I bringing this up? Because there’s a lot of information out there that shows that our bodies and our emotions are actually really, really intertwined. And if we’re stressed, our heart rate goes up, our breathing changes and our gut kind of gets into this own fight or flight response. And is that a physiologic response? Which one came first? Did the neural response come first? And that triggered the emotional response. How can we separate those? So, yeah, trauma definitely affects how we sleep. If we are in a fight or flight or freeze response, can we get a good night’s sleep if we’re always keeping our eye on the clock or our eye at the door? Are we getting restorative sleep now? And you’re the sleep expert. You’re looking at the different levels of sleep when you’re under trauma. Do you go into that deep sleep? Not necessarily.

Audrey Wells, MD

So, yes. I think that’s true. And it’s worth highlighting because any type of trauma you and I were talking about a little bit before I pressed the record button about what exactly does trauma encapsulates. And you made the excellent point that trauma could be physical, psychological, or emotional. All of these things are stressors on the brain. And just like when you get a cold or the flu, you need extra sleep because the brain is trying to heal. I think that analogy still applies to any sort of traumatic situation. The brain reacts to that by getting extra sleep. And then you look at what’s competing with sleep. And that fight or flight response can sort of make sleep elusive.

Susan Hughes, MD

Absolutely. You know, when you and I were talking before you asked, are you going to be talking about physical or emotional trauma? And I said, yes. Because the body and the brain really don’t care. If you’re in a situation where you’re terrified, you’re going to feel it at the cellular level and we talked briefly before about how trauma actually begets trauma. How we see generational trauma. We see a trauma extend over, you know, families, over cultures, and how that becomes ingrained in our bodies and in our DNA. So does it, is it limited to just physical? No.

Audrey Wells, MD

These are two major events in your life. And I’m wondering after your, like the impact, what did you notice with your sleep? You mentioned that your sleep apnea became worse, and went from mild severity to moderate severity. What other changes did you see?

Susan Hughes, MD

I could never feel rested. You know, I felt like I could sleep all day long and all night long. And by that time, I had started CPAP and I’d wake up and it was not just the exhaustion that you feel after, you know, running a race or having a really long day. It was this overwhelming exhaustion that you feel it in your bones. It was this fatigue that you just can’t shake. It was very disconcerting and in talking with a lot of TBI survivors, not that uncommon.

Audrey Wells, MD

Right. And it’s something that I’ve seen quite a bit. And I think that there is a component there of the brain trying to heal, sort of forcing people to put their lives on hold in a way during that recuperation period. And oftentimes it’s frustrating because when you feel like you’re having an experience that’s out of your control, that sleepiness when you want to be awake or being awake when you want to sleep, can further amplify that feeling that you’ve lost control of your body. Is that something that you experienced?

Susan Hughes, MD

So I think it’s important that I teach on this is giving yourself grace. It’s we’re much more likely to give someone else grace. We’re very, very poor at giving ourselves grace. Like if we’ve been through a trauma or surgery or something going on, it’s like, yeah, you need to heal. You need to allow that you’re human, you’ve been hurt, and you just need to take a couple of steps back and heal. And it’s frustrating because you look at your to-do list and it doesn’t stop when you’ve been hurt. It just keeps going. You think of all these things that you need to get done. And I talk about precious energy. Precious energy is those literally units. For me, it’s the Bank of Susan. For you, it’s the Bank of Dr. Wells. And every morning you get up and you have only so many units. So some days I get up and I’ve got 100 units of the bank of Susan, and I can go, sweet, I’m going to get a lot done. And they’re not rollover units. And then tomorrow morning I get up and I’ve only got 10, and sometimes making the bed might be five units. And so you make the decision to just not make the bed. And I think looking at the analogy of precious units, when you’re talking about sleep, when you’re talking about TBI, when you’re talking about neurodiversity, when you’re talking about any sort of trauma, you only have so much left over for dealing with life when your brain is trying to hit.

Audrey Wells, MD

This is such an important concept because I think what you’re alluding to is kind of getting to know yourself again, getting to know your limits, getting to know your priorities. And I’m wondering, especially since this last entry that you’ve sustained has been so recent. Has that been a challenge for you, even knowing all you know?

Susan Hughes, MD

It really was. I thought, you know, when I woke up, it’s like, you know, because this one knocked me out. It’s like, okay, this feels way too familiar. Yeah, but very, very different. My eyes were tracking again, so it’s like, okay, time to get back into vision therapy, trying to get back on into doing all these different things. And but it wasn’t that terror, because I knew I could regain it because I had done it before. But because they were on opposite sides of the brain. And you know a lot about this to certain sides of the brain is more of a speech, a certain side of the brain or, you know, language, math, things like that. And because they were complete opposites, it felt very familiar but very, very different. And it was very, sometimes I needed to take a step back and kind of observe what was going on from a clinical standpoint because that was more comfortable than feeling what was going on. And then, you know, I would get back to the space where I would feel what was going on and would say, this, this sucks, this sucks. And yeah, very, very different experiences, even though they were both traumatic brain injuries, very it impacted different parts of the brain.

Audrey Wells, MD

Are you still having issues with your sleep even several months later?

Susan Hughes, MD

Yes.

Audrey Wells, MD

What’s that been like?

Susan Hughes, MD

Well, I get really good at keeping myself distracted, using my phone too much to keep myself distracted. I’ll put it that way. I’ll go downstairs, get something to eat, get something to drink, sit on the couch, watch stupid pet videos. You know, look at things. Try not to challenge the brain too much, but just kind of balance with stamina enough to just kind of get it just shut back down. I’ll do some Diaphragmatic breathing, which will stimulate the vagus nerve. Doing all these different things to try to get the body to calm back down. Because, you know, if we can control that vagus nerve and get the heart rate to slow down and get the lungs and everything, then we are much more likely to get into a good sleep. So yeah, you know, uninterrupted sleep. I don’t know what that is right now, but it is what it is. It’s just part of that healing process.

Audrey Wells, MD

I love the way that you’re kind of employing this mental flexibility to give yourself grace, you know, being present, to watch how you’re responding to the demands that are put on your time or the demands that are put on your healing. I think that’s a great example for people who really feel frustrated that things aren’t going their way. One of the questions that I get from people who I’ve treated who had traumatic brain injury or other types of trauma as well, is in the acute phase. Are sleep aids warranted? And if you want to speak on your personal experience, I’d be happy to hear that. But as a result of your injuries, you’ve become an expert at traumatic brain injury. So I think that it’s worthwhile to bring some of that knowledge in as well.

Susan Hughes, MD

I did that and tend to be an expert on traumatic brain injuries. I had been more of an expert on neuroplasticity, neurodiversity, you know, primary care, but really focused on how our brain works. It’s different. I’m trying to come up with the right words for you, but it’s very different when you’re dealing with this. There is no timetable and when people have a TBI, they’re like, okay, I want to know exactly how many weeks is this going to last. How many months is this going to last? And when you tell them that you may be recovering for a lifetime, that’s too overwhelming. So just getting through the next day. But I went through my first TBI. They encourage sleep. When I went through my second TBI, they were like, oh no, we don’t want you to sleep too much. There are some new studies showing that saying that’s not helpful. And I’m like, my body’s screaming for sleep. How can it not be helpful? So I think the more studies that they do, perhaps the more studies that they show, we need to do more studies because I don’t think they have the answers. So my personal experience was I felt like I slept most of 2014. I know that I didn’t, but it feels like I did. There’s just a lot of things in that timeframe that didn’t stick as far as memories. The second one, it’s different. There’s that short-term memory right afterward. But either way, you’ve got sharing of those neurons in the brain that just need time to heal, time to reset, time to reestablish and grow new ones. So I think how physicians tell TBI survivors it’s hard because we don’t have enough information to be able to tell them, but giving themselves grace and listening to their bodies, it’s not going to be over in a week. It’s not going to be over in a few weeks. And you see these football players and they go through concussion protocols and they get back in there and get hit again.

Audrey Wells, MD

Yeah, that’s always disturbed me. I think that there’s a lot of pressure on people to perform. And professional athletes are one example, but a high-achieving person such as yourself has significant internal demands as well as external demands. And so it’s really challenging to manage that when life is not going your way. You know, I want to touch on your experience with CPAP treatment, because what I’m hearing is you started CPAP after your first TBI in 2013 and you continue to use CPAP today. Give us a glimpse of what that looks like in your life.

Susan Hughes, MD

You just have to make the mindset shift that this is going to help and you’re just going to do it.

Audrey Wells, MD

What things motivated you?

Susan Hughes, MD

With my facial injuries and jaw and my snoring. My husband wasn’t going to sleep in the bed with me because I snored so much. And so it’s like, okay, let’s, you know, I can’t just lift this in place all the time. Let’s look at doing something otherwise mechanical. So that was a motivator for me. Also going in, I love to snorkel. That is one of the most favorite things to do in the world. And so I went in with the mindset and visualization that the CPAP is just a snorkel device and I love to snorkel. And so if you go in thinking, oh, my God, this is terrible, I’m going to hate this. Guess what? You’re probably going to hate it if you go in and say, You know what? I love to see fish. I love to see turtles. I love to see all these things. And I love snorkeling. And this is just the way it’s going to be. And so I don’t hate it. It’s just part of that routine. It’s just part of that habit. And, you know, and taking care of patients, you know, I took care of patients for 20 years and, you know, did a lot of sleep studies and had a lot of people on CPAP. And if they went in with a bad mindset that this is going to be horrible, it usually was. If they went in there with a mindset, hey, this is going to be helpful. I’m going to wake up and I’m going to be more present. I’m going to be here for my family. They get better.

Audrey Wells, MD

I want I so resonate with everything you’re saying because this is, you know, my bread and butter, so to speak. I see people routinely who have the challenge of acclimating to a CPAP device and for good reason. You know, the problem with obstructive sleep apnea is when you stop breathing, your blood, and oxygen levels go down. So the brain does not like that, but also your sleep gets disrupted and the brain doesn’t like that either. So those two big problems with sleep apnea are interfering with sleep on a fundamental level. But it would also interfere with the normal brain processes that are going on during the night. I’m going to draw on your experience as a coach here because I really like what you say about mindset, but that’s a little bit nebulous to some people. Can you explain more about what mindset shifts got you to accept this CPAP and how it’s different than just positive thinking?

Susan Hughes, MD

The phrase that I use is how you perceive is how you receive. So the way that you look at something is going to directly affect how you’re going to process or accept something which is very different than just being positive. So the mindset is more of a deliberate process in more of a deliberate, intentional response to accept, to assure something, and to manifest something to make sure that you’re doing everything you can to make this be a positive experience. So the mindset is huge. The successful athletes, what they do is they run the race before they run the race. They close their eyes. They’re at the starting block. They take every step. They go over every hurdle. They cross the distance that they need to. And then push through the finish line. That’s kind of what mindset to me is you’re visualizing how you want it to be, so it’s not unfamiliar when it’s actually there.

Audrey Wells, MD

I love it. You know, that’s something that I think people can really relate to and it might also be helpful to add the brain is really focused on serving your environment for the negative and sometimes it’s helpful to deliberately bring that question in your mind. How is this perfect for me? What is working and kind of challenge your mind to think of those things? You know, even for someone like you who’s been through significant trauma, I wonder if you are at a place right now where you can say, I got some good out of this, too?

Susan Hughes, MD

Oh, absolutely. You know, for me, it wasn’t just about bouncing back from adverse areas, being bouncing higher. It was being intentional and bouncing back the highest. And that’s why I named my business that it’s that deliberate cognitive decision. Would I ever want to go through it again? No. Am I going to seize and cherish every lesson that I have learned along the way and share those with others? Absolutely. Absolutely. Because we never know when there’s going to be a red light runner. We never know when we’re going to be in an accident. We never know when a shift happens, because a shift always does happen and we have a decision of how we want to respond to that shift. So absolutely, I wouldn’t wish for anybody to go through any sort of trauma, but it’s also how we respond to trauma that helps define us.

Audrey Wells, MD

I couldn’t agree more, and I think your outlook is so inspiring to everyone, not just to people who are having difficulties with their sleep, but making that decision over and over and over again that you’re not going to let this drag you down. You’re not going to let this beat you. You’re going to decide how you want to define your circumstances.

Susan Hughes, MD

Absolutely. And everybody has that opportunity, not just me, not just you. Everybody has that opportunity to take a step back and say, what do I want to do? For me, it’s about going from impact to being impactful. You know, we were talking before, I’ve got my vision board behind there and I updated it in the last six weeks because so much of it had already come true. What do you want to have? What do you want to see? Who do you want to be? Who do you want to become? These are all thoughtful questions that we all need to answer at some point to become the best we can be.

Audrey Wells, MD

I love that those are high-quality questions, and I think they allow you to pick yourself up and move forward. Dr. Hughes, I would love for you to share with us how people can find you and how they can work with you.

Susan Hughes, MD

Absolutely. Pretty simple. You can go to bouncehighest.com or just email me at [email protected]. I’m on Facebook, I’m on LinkedIn just under my name Dr. Susan Hughes. And I’ve got a free gift for everybody, too. And I know that you’ll share that when the thing comes out. But we talk about time management. We talk about our precious energy. And I really want people to focus on priority management. So that’s how they can find me. I’m around.

Audrey Wells, MD

That’s great. Can you leave us with some thoughts about priority management? What does that mean?

Susan Hughes, MD

Priority management is getting into the morning and evening routines where things become automatic. So you don’t have to have your precious energy focusing on the little things that distract you. Priority management is figuring out what is the most, where are you having those things that are interfering with your ability to do what you need to do. Looking at what the bottlenecks are. I am so sorry. Looking at what the bottlenecks are. The bottlenecks are usually you where you are inhibiting your ability to get things done. So priority management is figuring out what’s important and maybe hiring to have some of the things done that you don’t necessarily want to do need to do the best today.

Audrey Wells, MD

That’s so true. You know, this is part of living a conscious, congruent life. Dr. Hughes, it’s been such a pleasure to speak to you. Thank you for sharing with us. And thank you for letting us know where people can find you.

Susan Hughes, MD

Thank you, Dr. Wells, for doing this summit. You are doing a great service to help so many different people. And I applaud you and I’m honored to be here. Thank you.