MGU 321 | Parasomnia

 

Parasomnia is a sleep disorder that pertains to unusual behavior or experiences while sleeping that are often disruptive. For today’s episode, Whitney Lauritsen shares her personal journey with the condition and how she’s getting to the bottom of it. From inconveniences in day-to-day living to the risk of physical injury, the distress that comes with parasomnia is serious. Whitney also narrates her sleep clinic experience as part of her exploration. Plus, tune in as she discusses other treatment options and what tools have helped her sleep better.

Listen to the podcast here:


 

Parasomnia: Getting To The Bottom Of My Sleep Disorder And Overcoming It

The Start of My Sleep Disorder

I had mentioned in some episodes that I was getting a sleep study done finally to try to get to the bottom of my sleep disorder. I’m going to tell the story of the sleep disorder, talk about my experience at the sleep clinic and the results. This may lead to some other things as well. I’ve talked about my sleep disorder off and on but I don’t think I’ve ever gotten super into depth about it. This is something I started noticing within myself probably when I was in college because there’s this key moment. There was another moment a year or so before then.

My freshman year of college, I slept walked to the other section of my dormitory and woke up in the bathroom. I was embarrassed even though I don’t think anyone saw me. I don’t know if I had ever talked to anyone about that but I remember that feeling of waking up in the bathroom. I went to college in Boston. The dormitory was old as a lot of buildings in Boston. They were single-stall bathrooms. Maybe some dormitories have multiple toilets and showers in each one.

If I remember correctly, I think there were maybe only two bathrooms per floor. I don’t remember how many rooms there were but I’m trying to set the stage here. My building maybe had 4 or 5 units on each side of the elevator and there were ten floors. I’m guessing maybe there were twenty bathrooms or so in the whole building. You shared them so you had to take turns. That’s all I remember about that but I typically would use the bathroom on my side of the elevator.

It was known that the people that lived on that side would use one bathroom. The people that lived on the other side of the elevator would use the other. I woke up in the other side’s bathroom. I remember that I was sitting on the toilet with the lid down and coming to there, becoming conscious of it and having that moment of, “What did I do?” That’s all I remember from that experience.

The other moment before that was one time, I was at my cousins in Ohio visiting them and woke up in the middle of the night screaming. My aunt and uncle got mad. They thought I did it on purpose but I was sleep screaming. I also have this vague recollection of being young and my parents telling me that I slept walk and fell down the stairs.

Those were some of the defining moments. I don’t remember much else up until when I got my very first apartment by myself in Los Angeles. I don’t think I’d ever lived on my own. At that place, I started sleepwalking. I’m sure I had done it in between but maybe I wasn’t as aware of it or it wasn’t as big of a deal. I don’t know if it got worse over time or maybe my awareness got more intense but I slept walked down the stairs of my building.

For context there, I think it was a three-story building. I left my apartment and walked down these regular flights of stairs, nothing super steep. I don’t think anyone else was around. I remember waking up probably halfway down the building and being uncomfortable with the fact that I had done that. That led me to start to think about what was going on with me. I went to a doctor and inquired about what to do. They said I should do a sleep study.

That was right before I quit one of my last full-time jobs and didn’t have insurance anymore. I never went through with that sleep study and had not taken it that seriously. I always thought that sleep studies were expensive or out of reach or it wasn’t a priority but I started to notice my sleep behavior getting worse and worse.

By the way, it was at that appointment where the doctor recommended that I go to a sleep study who referred to what I had as a sleep disorder. Up until then, I brushed it off like, “This is weird behavior. Sometimes I sleepwalk and talk in my sleep.” When I described what was going on with me, that was the first time that anyone had said that it was a disorder. It took me a while after that to start to even call it a disorder.

Parasomnia is just incredibly frustrating and—pun intended—exhausting. Click To Tweet

What Happens During An Episode

The doctor also brought up that I could go on medication at the time. I was like, “I’m not taking medication for this.” I was trying to avoid any medication at all at that point in my life. Years go by and I collect all these stories of my sleepwalking. My sister, anytime I was visiting with her, she would tell me about it. Anybody that I would stay the night with whether we were sharing a room at a hotel or I was staying with them at their home, I have now had to either tell them ahead of time that it’s likely I’m going to sleepwalk because I seem to have these occurrences more so in new places.

There seems to be a correlation between that or I’ve had an incident and I didn’t tell them ahead of time. The next day they’re like, “You did something weird last night and it’s super embarrassing.” It brings me up anxiety, even talking about this because having to confess and prompt people. People have reacted in ways that I guess have made me feel a bit self-conscious about it. Even though I can’t help this, I feel a bit embarrassed. Even some people are creeped out by it.

I remember my cousin came to stay with me in LA a few years ago. I mentioned it ahead of time, right before she went to bed. This is the same cousin that I was in her room when I woke up screaming like a teenager. She must have never even remembered that. She was creeped out and afraid that I was going to do something. I’ve had experiences where I’ve done weird things. For many years, I was not in the habit of warning people before we went to bed.

I remember this one time I was on a trip with someone and woke up standing over her bed. The next day she was like, “What was that?” It’s so embarrassing but I cannot help it. I have little control over my body. That’s the definition of sleepwalking. To get more in-depth about what exactly happens for me is I’ve read a lot about sleepwalking. A lot of people have these ideas around what it is. In the more severe cases people have not even a recollection of doing something, zero memory of it. Mine is different where I usually remember sometimes specific details. Sometimes I have a sense in my body that I slept walk. I also commonly have this experience where I wake up as I’m doing something.

It’s incredibly frustrating and pun intended, exhausting. It is becoming worse for me mentally because I think it’s building up anxiety for me. I’ve also over the past years had a few instances that have scared me for my safety. I remember having fears about this back that time that I walked down the stairs many years ago at my first Los Angeles apartment, I started to put things in front of my door.

This is around the time that I got Evie, my dog. I thought maybe having a dog would help me because she would alert me when I woke up. It felt like for some time that she did but I also feel she’s gotten used to it now. Now she doesn’t seem to even react. I’m pretty sure, for example, I slept either last night or the night before. I remember being conscious of Evie either while I was doing it or right afterward. She doesn’t react.

Whereas when I first had Evie, when she was a lot younger or the puppy, even, I remember she would get nervous about it and move with me or something. That would help me wake up but she doesn’t do that anymore. She must be like, “This is what my mom does,” which is frustrating. Over time, I’ve had to try other things, other methods I’ve tried, like putting things in front of my door to make sure I don’t go outside. I have gone outside a few other times, other places that I’ve lived. Even one time in 2021, I was visiting a friend and I am not positive but I’m fairly certain that I walked outside her place.

Most of the time that I’ve done things, the reason I know that I’ve done them is because for many years, I’ve tracked my sleep with a night camera. I’ve captured myself walking or moving. Sometimes it’s not even getting up and walking per se. Sometimes it’s jumping up in bed or sitting up on the side of the bed. I have repeated actions of going and staring out the window, thinking that someone’s outside. Sometimes this is very driven by a fear, like, “There’s someone here at my home.”

Sometimes it’s part of my dream. In fact, the time I hurt myself the worst was a few years ago. I was dreaming that either wolves or wild dogs were chasing me. I thought that I was being chased. I jumped out of bed, slipped and hit my back on the dresser. It hurts so bad that I started to wake up. As I became more conscious, I became very afraid that I had hurt myself.

MGU 321 | Parasomnia

Parasomnia: People feel that it begins with an abrupt onset of motor activity arising from slow-wave sleep, and it might be attributed to the deregulation between slow-wave sleep and arousal.

 

I had fallen on my arm and was afraid that I’d broken it or punctured it or something. I had another experience like that, not as severe but I ran out of bed, slipped and fell on my foot. It hurt my toe so badly that I remember sitting there thinking, “What did I do to my toe? What did I do to my foot?” The next morning, I woke up and it was completely fine. It’s scary to walk out of my home. Fortunately, I’ve never done anything extreme like driving in a car or walking down the street but it’s also possible that I could.

What Has Helped: Tools and Methods For Better Sleep

Over the years, based on these experiences, I started trying to find the answer to it. It took me a while when I finally went to the sleep clinic. In the meantime, I found myself doing all this research, talking to people, trying to get to the bottom of it. Surprisingly enough or maybe this won’t surprise you but I’m amazed that there is not a lot of information about this.

When I try to type in my symptoms, it’s hard to look things up, I barely come up with anything. I will look into sleepwalking and a lot of the common descriptions of sleepwalking are not exactly mine. I have read at length tips for how to control it, change your sleep routine and all of those things. None of the advice has worked. In terms of what I’ve tried, it is crazy. Way back when I first saw the doctor about this, they said, “Here’s some things you can try to set yourself up for a calmer sleep environment.”

At that time, I had started experimenting with white noise. They were asking the doctor about that, like, “Is it okay that I’m listening to white noise?” It’s funny. I’m like, “It’s okay.” Back then, I thought I was weird for listening to white noise. It wasn’t talked about as much as it is now. I had an app on my phone. My whole life I’ve liked white noise while I sleep. I don’t like hearing random sounds like people talking or TV or any of that.

I don’t like total silence. I started listening to rain noises and the doctor said, “That’s a great thing to do.” I eventually got a sound machine. It’s awesome. It’s called ‘LectroFan. There are a few similar brands. I bring it everywhere with me. It’s small in size and USB-powered. I bring it all over because I much prefer that sound than the sound the apps make through my phone. I started doing other things. I got blackout shades and always bring an eye mask with me if I’m going to be somewhere where I don’t have access to blackout shades to have complete darkness is another big tip.

I have a big body pillow from Essentia. That body pillow has been a game changer, mostly for my hips. I tend to have a lot of tension in my hips and the body pillow changed the way that I sleep. It also makes me feel safe. It’s this big body pillow. I feel like I’m more comforted. For a while, I was like, “Maybe that’ll solve my sleepwalking. Maybe I feel unsafe and super anxious.” It was nice for a little while but over time did not work.

I got a weighted blanket, which is also a game-changer. I am obsessed with the weighted blanket. Now I also bring that everywhere with me. It’s a 15-pound blanket. Whenever I travel, I’m carrying this. I haven’t gotten an airplane in a while so I don’t know if I would bring it there but if I’m driving somewhere, I’m bringing my weighted blanket. I would also bring the body pillow too but it’s so huge and bulky. It breaks my heart to leave it behind me. The weighted blanket is super comforting. It’s also good for sensory issues.

As I’ve learned more about my neurodivergence, the weighted blanket is a gamechanger for me. It hasn’t stopped me from sleepwalking. I started taking every single night the VRY Everyday Rest Well. I have an episode with the founder. It’s a great one about how well these supplements work. These are amazing. It’s valerian root hops, passionflower and GABA.

Through my research, I found that GABA can play a big role in sleepwalking. It’s maybe not having enough in the brain. I started taking that and it has drastically improved my sleep. It’s amazing. It’s one of the best sleep supplements I’ve ever taken. I might have a discount code because of the founder being on the show. It’s at Wellevatr.com.

Sleepwalking can often be something that people with Parkinson's experience. Click To Tweet

Understanding My Sleep Disorder

That’s been great but I’ve still continued to sleepwalk. It’s incredibly frustrating. I also did a ton of research and a couple of things to bring up before I get into the sleep study experience. The clinical or scientific name for sleepwalking is somnambulism. People feel that it begins with an abrupt onset of motor activity arising from slow wave sleep. It might be attributed to the deregulation between slow wave sleep and arousal.

There’s also something called REM, sleep behavior disorder, RBD, which can be confused with sleepwalking and sleep terrors. These other disorders, you are usually confused upon waking and there is no dream reenactment. You do not become rapidly alert. In contrast, it is normally easy to wake a person with RBD who is acting out of a dream. Once awake, you’re also able to recall clear details of the vivid dream. When I heard about that, I thought, “Maybe I have RBD and it’s not technically sleepwalking.”

I wouldn’t call it sleep terrors. Although there are times like when I wake up screaming or terrified of a dream, those have definitely woken me up. Many people experienced that. It’s a little bit more common. By the way, sleepwalking, especially the case that I have is extremely rare apparently. That’s why it’s been so hard for me to get to the bottom of it. It’s fascinating like how did I end up with something so rare? It’s RBD. This is part of the same notes. Having a person in the room or a partner who expresses concerns about unusual behavior, every single guy that I’ve dated has noticed the stuff about me.

It’s made them nervous. Some of them have been supportive about it. Others have been frustrated about it. That’s been tough in relationships. I had a note about performing actions that match vivid dreams that they can clearly recall. Being different from sleepwalking either classical or extreme sleepwalking, people will not remember anything and they’re confused. Whereas for me, I can remember a good amount generally but I also become confused. Another thing about my disorder is that I’m disoriented. I’ve noticed in my experiences that I will sit there and I do not know if my dream was real or not. I will find myself awake but in this hazy state of not knowing what’s real or in my head. That is tough.

In fact, I recalled what my latest sleepwalking episode was about. This is nuts. My dreams often make little sense. I have a reoccurring dream like this one. This is where the fuzziness comes in. I jumped out of bed and thought that there was a cat or kitten in my bedside table that I forgot to take care of. This is a reoccurring dream of mine. For any of you who are into dream meanings, I would love to know what you could find on this. If you want to help me and look it up, I don’t care that much to look it up. In this moment, I feel curious because I’ve had these reoccurring dreams of not taking care of animals and sometimes them passing away as a result or their lives being a danger.

I jumped out of bed thinking, “I forgot about this kitten. It’s been in this drawer this whole time. I got to go save it.” I got out of bed and opened up the bedside table and tried to save this kitten. I remember when I didn’t find a cat in the drawer, I stood there and I was like, “I have a cat, where is it?” I was fully convinced for probably 30 seconds that I had a cat and didn’t know where it was but I do not have a cat. I haven’t had a cat for a very long time but my brain at that moment was so deeply convinced. That to me is scary and extremely frustrating. That’s also been occurring more.

One thing that deeply concerns me about this is that there are some correlations between sleepwalking and conditions like Parkinson’s disease, which I don’t know if I can say runs in my family but my grandmother and brother on my mom’s side had it. I’ve done a ton of research on Parkinson’s and some people say it’s genetic some don’t but sleepwalking can often be something that people with Parkinson’s experience.

I have this fear. What if my sleep disorder is part of something that’s going to be more debilitating? It’s terrifying. I want to tell this story because maybe I’ll find someone else through telling the story that has experienced this or knows about this. If you know someone who has this condition or disorder or have resources that are in-depth, please send them my way. I’m getting to the point where I don’t know what the next steps are.

Interestingly enough, adolescents with sleep terrors and sleepwalking were found to have an increased prevalence of other sleep disorders, neurotic traits, psychiatric disorders and problems. I wrote that down because, given my reflections on being neurodivergent, I wonder if there’s a correlation there. I’ve also looked up is there a connection with autism, ADHD, other elements of the spectrum? It seems there are in some cases but I haven’t found anything super conclusive.

MGU 321 | Parasomnia

Parasomnia: Some researchers believe that those who experienced sleepwalking or night terrors may have difficulty in maintaining slow-wave sleep, which makes them susceptible to quick arousals and increases the chance of Parasomnia.

 

Some researchers believe that those who experienced sleepwalking or night terrors may have difficulty in maintaining slow-wave sleep, which makes them susceptible to quick arousals and increases the chance of parasomnias. There’s also some research about hypothalamic pituitary adrenal access, which is the adrenal glands that release cortisol and adrenaline.

For me, the stress, the cortisol certainly seems to be playing a role and also the adrenaline. My heart will be pounding. I’ll be scared. There’s this deep stress fearful reaction that happens for me here. I wonder how much that’s impacting my waking hours too. Before starting this episode, I have experienced hours of exhaustion, despite the fact that I thought I slept well and had caffeine and a few different forms. I went for a walk and got some sunshine.

My Sleep Clinic Experience

I felt I took such good care of myself. I haven’t had a super jampacked day. There’ll be these days where I’m exhausted and they can’t figure out why. That led me to the sleep clinic. I finally decided to move forward with it. I asked my new general practitioner about it and they referred me to a sleep clinic that’s part of my insurance network. I made an appointment. Leading up to it, I didn’t feel like the sleep clinic was that good but I never had experienced a sleep clinic before. I’ve heard stories of other people who have that I’m close to.

I asked them some questions, “Is this what yours is like?” They said, “Yes.” I was like, “I’m going to go. It’s in my network and not going to cost money. It was all covered in my insurance.” I thought, “It’ll be a good step,” but my gut feeling the whole time was not that great. First of all, I had my study done when there was a COVID spike in Los Angeles. I was nervous about going and staying overnight in a medical facility without knowing their COVID protocol.

I called them up and they gave me weird responses. I went in thinking, “It’s not going to be the most COVID-conscious environment.” I got there and I was right. They said that they were going to check my temperature and my vaccination status or do a COVID test or something. They didn’t do any of that. I literally had an appointment that started at 10:30 PM. I got there and knocked on the door. This girl came and let me in. There was no receptionist. She was the person that worked there and led me into a room. She was wearing her mask very loosely. I went in there with three masks on because I was like, “I’m not going to take any risks.” This was right before the holidays.

I did not want to get sick. I had this hunch that it was going to feel a little out of my comfort zone health-wise. The place was clean. She said there were only a couple of people there that night. I had to trust it but I wasn’t able to wear my sleep mask at night. I felt so nervous. That’s beside the point. As far as I know, I did not get COVID from the facility but that was not a good first impression for me because it didn’t make me feel safe. A lot of my sleep issues are based on stress and anxiety.

Going into a sleep environment where I don’t feel safe did not feel good to me. It took a while for them to set everything up finally and they hooked me up with all these wires and stuff. They hook all these wires up to your face, your temples, your hands, my legs, tons of wires. They also, which I didn’t know before going to a sleep study, that you’re in a room that’s “designed” to feel like a bedroom. The pictures on their website for this clinic did not represent what this room was like.

For me, it was very sterile. It’s a white room, small, barely the size of a regular bedroom with I think a full-size bed, a regular bed, not like a hospital bed and a little bedside table and a chair but there was barely any space for me to put my stuff down. They also said you could bring anything you wanted to make your sleep comfortable. They provided a blanket and a pillow but it was as if you were going to cheap motel type of sheets and pillows. Thank goodness I was prepared. I brought my weighted blanket and I brought one of my favorite pillows, not my body pillow because I thought that was not going to work in that environment.

I brought my pajamas. I tried to bring everything possible to make myself comfortable. Once I got there, I took the VRY Everyday supplement. I didn’t want to take anything else. I don’t normally anyway but I was trying to think whatever would keep me calm. I brought a book to read and my blue blocker glasses, which I talked about in an episode. You can go learn about blue blocker glasses with James Swanwick. If you are curious, I wore those. I brought a good calming book to read. I was reading Brené Brown’s Atlas of the Heart. I brought my sound machine. They said I could use that. I brought my favorite pajamas and went to the bathroom and brushed my teeth and got in bed. It took her, the woman working there, like probably an hour to get to me. I sat there, getting comfortable and ready, reading. She came in and hooked me all up, That took probably like fifteen minutes or so. They had me do an intake form to share more about why I was there and then the lights out was at midnight.

Adolescents with sleep terrors and sleepwalking were found to have an increased prevalence of other sleep disorders, neurotic traits, and psychiatric disorders. Click To Tweet

That’s not late for me. I usually go to bed between midnight and 1:00 AM. I thought, “Great, no problem. “Being connected to all those wires, feeling a little stressed about a new environment plus stressed about COVID, I was definitely on edge as much as I tried not to be. I was having trouble falling asleep. I finally fell asleep within an hour or so, probably somewhere between 1:00 AM and 2:00 AM.

What I didn’t expect was frustrating was that the woman burst into the room and flooded the whole room with light somewhere before 3:00 AM to readjust the wires on me. There was no knocking. It wasn’t soft like tiptoeing and bursting through the door to readjust things and leaves. For someone with a sleep disorder, it was so frustrating.

She did it again at least three times. The whole night, I was on edge about the next time she was going to come into the room. I remember I didn’t start to fall asleep until like 3:00 or 3:30. She also told me that she was going to come to wake me up and be done with the study before 6:00 AM. I was like, “Are you kidding me? How am I supposed to get any quality sleep for you to be able to help observe me and figure out what’s going on with me if I can barely sleep for six hours,” but I’m trying to trust the system. Apparently, that’s how a lot of these sleep clinics work. They bring another wave of people around 7:00 AM or 8:00 AM so people can do day studies or whatever.

I was like, “If you can wake me up the latest possible, that would be great.” She’s like, “Sure thing,” and then she bursts in the room before 6:00 AM. It was 5:55 AM. I remember feeling so groggy and sick. It’s very rare for me to get up before 6:00 AM. I felt awful. She flips on the lights and it’s bright fluorescent lights in there and she’s taken all the stuff off me. Also, which was weird I did not expect it is in order to get the wires stuck to your head properly, she had this weird thick goo, almost glue silicone-y substance all over my head. My head is mudded in this goo and I was like, “Great.”

I left and remembered feeling, violated is a strong word but I remember feeling there wasn’t a lot of care. I had this hunch that I was not going to get solid results from that. I probably slept a total of three hours or so but I was hoping that some sleepwalking or something close as sleep talking like something in my brain would at least turn on to indicate to give them something to go off of. I was fairly certain I didn’t sleepwalk or sleep talk at all because I wasn’t in that deep sleep that I would normally be in.

This is common for sleepwalking in general. This is what I was able to narrow down through two different methods. Over the years, I’ve used the night vision camera, which is the best option for me because I can see myself moving. There’s a time code on the camera. It’s great. It’s a affordable camera that’s great for all sorts of things, not documenting your sleep typically. People use it for security or watching their pets but it ended up being great for me for sleepwalking.

The other way I found out when I sleepwalk and sleep talk is by using a sleep talking app. I’ve had that for years. I don’t know if it’s still a good app and I don’t remember what it’s called. If you’re curious, go to Wellevatr.com. That’s how I got to the bottom of my timing. For me, I generally sleepwalk and sleep talk about 90 minutes after falling asleep. Sometimes 2 hours sometimes 1 hour. It’s anywhere between 1 hour and 2 hours after falling asleep, averaging around 90 minutes.

That’s typically when your brain goes into REM sleep. A lot of people end up exhibiting this behavior around the same time. I was hoping if I could fall asleep for at least three hours, they’d be able to track something. I found out the results of my sleep study. Unfortunately, it was almost exactly what I thought. The only thing that I was unsure about was whether or not it would turn out that I have sleep apnea.

Sleep apnea, for those that don’t know is incredibly common. I don’t know if it’s considered a sleep disorder but it’s one of the main reasons why people snore or have trouble sleeping. It’s connected to issues with maybe not insomnia but not being able to stay asleep. From my limited understanding, there are blockages and being able to breathe. Sleep apnea patient or people that have sleep apnea as a condition have trouble breathing throughout the night and wake up coughing or feel like they’re choking. They’ll snore. It’s so common.

MGU 321 | Parasomnia

Parasomnia: This is such an important lesson that our medical system is really complex and not always the easiest to navigate.

 

I’m throwing this out there but I feel like maybe 80% of the population could be completely wrong but it’s some extremely common number like that. I thought, “Maybe I have sleep apnea and that’s connected to the sleep disorder.” I found out I do not have sleep apnea, which was a bit of a relief because if you don’t know about sleep apnea, usually, it’s recommended you get a CPAP machine. They have different things that you can put in your mouth to readjust your jaw. There are various options out there for sleep apnea. I didn’t want to deal with that. I’m glad I don’t have it.

They gave me this little packet. It’s four bullet points, very short on this piece of paper. It gave me details about oxygen desaturation. My doctor said my levels were completely fine. AHI, I don’t know what that means off the top of my head but my doctor said that was fine. It says, “Diagnosis: Negative for sleep apnea and limb movements,” which is another thing that they will test for at these sleep clinics is if you have things like restless legs syndrome. I remember going in thinking maybe I do but I don’t have the classic signs of it. Apparently, I don’t have it.

There’s this one-liner where it says, “Recommendations: Clinical follow-up, no physical disruptor of sleep.” I don’t even know what that means but basically, my doctor read this and was like, “The sleep study says you’re fine.” Granted, I started seeing this new medical practice. I don’t feel like the doctors there are the main practitioner but often they send in a doctor that works under my doctor. I forget what the term is for that.

They’re the doctors’ associates or assistants, perhaps. It’s a very nice, wonderful clinic but I don’t feel like they know a lot about sleep. They were reading this diagnosis from the sleep clinic and using that as my answer. I felt so defeated but also empowered to take the next steps. It was disappointing. I also had a hunch based on my experience at the sleep clinic that this was what was going to happen. I didn’t think that they were going to be able to get to the root of anything.

The also frustrating thing about this was that they have this little section on the cover of this little packet that they gave me. It says, “The patient complains of waking to urinate, nightmares and breathing problems at night.” I don’t know where they got this from. What does that even mean? Maybe when I did my intake form at the clinic, I checked off that sometimes I wake up to urinate but it wasn’t the main reason I went in there. I probably checked off a box about nightmares and maybe even breathing problems.

I don’t feel like they were even looking for my sleepwalking. There’s nothing in this document. In fact, when I told the doctor why I went in, they were so confused because it wasn’t even documented here. Tons of things were lost in translation. This is such an important lesson that our medical system is complex and not always the easiest to navigate. Based on the struggles I’ve had to find answers to this online, of course, you got to take online research for medical issues with a grain of salt.

In all of these years of struggling with this, trying to figure it out, bringing it up to doctors, talking about it to other people, I’ve literally never come across somebody who’s like, “Here’s the direction you should go in.” My doctor, basically at the end of this appointment looking over my sleep study results, was like, “I don’t know what to tell you.” Honestly, if I had not pressed further, they would have ended it there.

Because I was saying, “I’m concerned about this because I’ve had a few instances that have almost led to injury and it’s concerning that I’m leaving my home to sometimes over the years, this isn’t something I can take lightly. It’s also making socializing hard. It’s making relationships tough sometimes. It’s an issue for me but the fact that it was not even taken that seriously is so disheartening.

Exploring Other Options

It made me think of how many people have other issues that are not taken seriously. This is not the first time that I’ve gone through something like this. My other big example was years ago when I was having tons of allergic reaction symptoms, I went to a doctor and got tested for food allergies and all of my results came back negative. They were like, “Sorry, you’re not allergic to food. It must be something else. Take this medication for pollen or whatever. It must be something in your environment.”

Sleep apnea is incredibly common, and it's one of the main reasons why people snore or have trouble sleeping. Click To Tweet

For several years, I was talking to doctors, trying different medications and feeling left in the dark about what was going on for me. I was having all these crazy symptoms of inflammation in my body and sneezing. It was so bad. Every other day I was having these crazy cold or flu-like symptoms. I always would brush it off like, “I have allergies.” That’s what all the doctors said to me.

It wasn’t until I started experimenting with changing my diet that I realized on my own that it was food-related when I eliminated things like gluten soy, corn and almonds, which are my top four food sensitivities. When I took those out of my diet, my body drastically changed. Every single one of those symptoms went away. I was left to my own research and experiment to get to the root of it.

I’m not angry or resentful at the medical system. I accept it that that’s the way it is. It is sad and frustrating. I feel like my issues are relatively not that bad. I’m sure there are people that go through even worse things that either they can’t get an answer to or are so expensive to diagnose. I feel sad when I talk about it like this but I don’t feel sad going through my day. I feel determined to figure this out. I wanted to share this story just in case you or someone you know is going through this.

Maybe we can figure this out together or maybe you have another path I can look down in terms of a resource. Now I’m not at a point where I want to spend a lot of money on this. I will spend some money as needed to figure it out. I want to spend my money wisely if it’s not going to be something covered by insurance. The only road that my doctor pointed me towards was talking to my psychiatrist, who is a wonderful person. I have my next psychiatry appointment. I’m going to talk to her and let her know what’s going on because I did find a medication that I could try.

It’s trazodone, a medication that’s typically used to treat depression. It does have, according to some research I’ve done, the power to rewrite the sleep architecture of somnambulism. That’s because it can block the brain’s arousal histamine and adrenaline systems. That could be often used to treat sleep apnea as well. I’m going to ask my doctor about it. Do I want to take medication? No but I’m at a point in my life now, very different from when I was when I first started looking into this, that I would rather take it if that means I have the quality of life back.

At this point, I don’t know if it’s contributing to ongoing exhaustion, which is tough for me when I feel tired very often. All these challenging and embarrassing sleep experiences which may not sound like a big deal but they are a bigger deal than I have even acknowledged even sharing them here on this episode. This sucks that I have to go through this. I have to carry the weight of this fear of embarrassing myself or hurting myself. For my own safety, I feel like it might be worth looking into this, plus if it helps with other elements of my life, my mood challenges and emotional balances. This is the whole reason I have a psychiatrist in the first place. It takes care of two things at once. We’ll see but I definitely need to look into it more. I’m not concluding anything.

I’ve also read some promising things about hypnotherapy and biofeedback, CBT and also TMS. TMS is something my friend, who works as a therapist, recommended but that I believe is not covered by my insurance. I might have to go down the route of switching insurances to have things covered. This is what I mean. It feels like a lot. I will keep you posted. I’ll call this part one or maybe I’ll do a follow-up in another episode.

I also may seek out some sleep specialists on the show because maybe I can help get to the bottom of it publicly and bring on someone else who’s an expert who could share some information with you too. I’d love to hear from you. I want to know, have you gone through any of this? Do you know anyone who chronically sleep talks or sleepwalks or struggles with something similar, maybe the REM sleep behavior disorder, also known as RBD? Is any of this familiar? Anything you want to comment on, I would love to hear from you.

If you have any resources that you found helpful and what would be helpful to me if you want to share any of that, it is something more advanced, not just like a web link but maybe some more details. I have so much research that I’ve done but I often get stuck because it feels overwhelming to me. If you want to offer up things, the more details you can share with me, the better, like specific doctors or cost averages if you want to tell me if you know specifics on that stuff so I can work it into my plan and figure out my insurance situation or budget for it. I always like to plan things out in advance so I can account for whatever else is going on in my life.

MGU 321 | Parasomnia

Parasomnia: The fact that this was just not taken that seriously is so disheartening. How many people have other issues that are not taken seriously?

 

If you’re comfortable with me sharing whatever you share with me, I can share it with other people on the show or other people that reach out to me. Please let me know in this case but in any case, are you comfortable with me sharing what you share with me? Do you want me to keep it private? I always want to respect your privacy. It’s important to be upfront about that. I appreciate you reading my story. Maybe you’re curious. A lot of people are fascinated by it. I thought, “What the heck? I’ll do an episode.” If you have follow-up questions, I will happily answer those as well either privately or in another episode.

If you’re curious about more, I’m an open book about this because I want to get to the root of it. I’ve at least given you the main details, which is that I do some weird things in my sleep that I can’t control. I can’t predict and haven’t found a way to regulate. I’ve tried a few other things to share. I’ve tried experimenting with no caffeine and no alcohol that was talked about in my episode with James Swanwick. He inspired me to be very mindful of alcohol.

I have tried all sorts of sleep routines, from meditations to bath before bed and getting off my phone and all of these little tweaks. I’m sure that I could try more of them and be more consistent with them. Thought, therapy to me feels the most promising. While I do want to talk to the psychiatrist about medication as a possibility, I would love to try a deep therapy method. That’s a route that I’m planning to take next if you’re curious.

If you have more details about any of those things and you happen to be in Southern California like me or have any referrals, I’d love to hear them. Ideally someone that specializes in sleep versus general therapy, which I’m already on the route for, I’m waiting to get set up with a new therapist and I’m excited about that. This will probably be the first thing I bring up to them but I don’t expect them to have all the answers. Anyone who’s specialized in sleep would be amazing.

Thank you for holding space for me. Thank you if you do decide to reach out. Thanks for being part of this show and all the different facets of it. I appreciate you. I’d love to know what other topics I can cover. I’ll be back again with another episode. This one is incredibly special. In fact, it ties into this theme too in a completely different avenue but it’s about how to live with chronic illness. This guest story is incredibly moving. You’ll read how I remark throughout the episode how in I am of her. I can’t wait for you to read it. Stay tuned. Please subscribe if you haven’t yet so you can be notified, alerted on your favorite podcast player as soon as the episode comes out. You can go to Wellevatr.com for all the resources and the past episodes, as well as my contact information.

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