The Medical Detectives - Brianna's Story: Sleepwalking Nightmare

Episode Date: March 5, 2025

In one of our most intense and eye-opening episodes yet, we sit down with Brianna, whose journey through the medical system took years of misdiagnoses, dismissal, and frustration before she finally got the answers she needed. What started as a mysterious sleep disorder—marked by violent night terrors, hallucinations, and sleepwalking—was repeatedly brushed off as anxiety and depression. But after years of dealing with her symptoms she was finally given a shocking diagnosis.Join us as we dive into her harrowing yet inspiring story, exposing the dangerous gap between psychiatric and medical diagnoses—especially for women. With humor, resilience, and raw honesty, Brianna takes us through the medical gaslighting, the fight for a real diagnosis, and the relief of finally being heard.

Hey, Anna. Hello. It wasn't this the craziest one so far. I think it might be honestly, I still am kind of reeling from some of the things that she told us happened. I definitely feel this is our most dangerous episode, one might say. It also, unfortunately, is another example of someone being told they have mental health issues

when the issue is a lot deeper. Yeah, and we get into it, but there seems to be a great divide between psychiatric conditions and medical conditions. And I think after listening to enough of our shows, we can acknowledge that they both sometimes go hand in hand and that unfortunately for women, we are being disproportionately diagnosed

with anxiety and depression that is preventing us from getting the actual medical diagnosis. Yeah, I think it's a chat for another day, but the way women get painted sometimes is that we're unstable just generally. And I think that stories like this highlight why that's so dangerous.

Well, let's get into it. Let's get into this ride. Hi Brianna. Welcome to the Medical Detectives. We are so excited to have you. So excited to have you on. Thank you. I'm going to do something that we actually don't normally do on the medical detectives,

which is we are going to reveal one of your diagnoses immediately. What? Yes, but it's just one. This is unfair. It's just one. The big reveal, of of course for the end, but I would like to start with how you got diagnosed with one of the world's most painful conditions. Yeah.

So I was, or am an Irish step dancer and I sprained my ankle in the eighth grade and my dance teacher was like, you got to keep dancing on it. It'll be fine. And it didn't get better. And they were like, okay, we'll put you in a boot. We might need to have surgery. Like, we're not sure what's going on. It's not broken.

We think it's sprained, but then not healing. And so went from one doctor to another. They're like, there's no reason it's not healing, but we think you're fine. And I was like, but my foot's purple and swollen. And then I can't walk. And they were like, okay. So then they sent me to orthopedics and the doctor was nasty. He was like, get up and walk right now. And I was like, I'm in excruciating pain. Yeah. And he was like, there's nothing wrong with you. And I was like, okay, I'm like 12 years old. Also my foot is purple.

And so that was one doctor. And then I saw another doctor in that same place and he was like, I don't know what to tell you. I'm going to send you to children's because I think maybe they can help you. So they sent me to sports medicine at Children's Hospital in Boston. And that doctor was like, I don't know what this is, but we're going to figure it out, which was helpful because that was the fourth doctor and he was like, there's something wrong.

So he eventually talked to other doctors and they were like, yeah, we think it's complex regional pain syndrome. And they were still calling it RSD at that point. And they were like, yeah, most people don't know about this, but your nerves are really hypersensitive. And so everything that happens is going to really, really hurt. So they were like, you can stay on crutches for a little bit, which was nice to hear because everyone else was like, you need to walk.

There's nothing wrong with you and hearing there's nothing wrong with you from so many people, even just like people like my coaches and stuff was really frustrating. And so Right after that diagnosis. I then was getting into my family car and hit my head Trying to not step on the painful foot hit my head and ended up getting complex regional pain center in my head as well So I had chronic headaches for seven years Okay, so with this condition basically if you have a little bump anywhere, it becomes a thing that haunts you forever. Yeah.

So it feels like if you sprain your ankle, for example, or like in my case, I sprained my ankle and it felt like I was walking on a broken foot when the sprain had healed. And so it's a weird condition where so many doctors don't know about it or if they do some are dismissive, but yeah, it was a crazy diagnosis and everyone's just like, you're fine. We can't see it. So there's nothing wrong. So what, you know, what CRPS is, which if there is a disease that has multiple different names over time, you know, it's bad. It's been called reflex sympathetic dystrophy. That's RSD in the past. Now it is called complex regional pain syndrome. And what it is, is kind of

like a disconnect between your brain and your body part. So if you, for example, just have a paper cut, your brain will register, okay, it was a paper cut, you know, it hurts a little bit, but it's not the end of the world. And in CRPS, your brain is registering that paper cut as if your finger was blown off your body. And so it is sending you messages that this feels like a blowtorch

is taking to it. This feels like it's being run over by a bus. CRPS is the highest level of pain that there is. Yeah. So luckily I don't have it as severe as other people at the pain clinic. A lot of people had come from all around the country and some were like, we can't get out of bed there. They were in so much pain. And so yeah, mostly my head and my foot and it's been like 12 years now, so I can deal with it. But sometimes like I'm having a flare up with my foot now and like I can walk and everything, but even a step, like it hurts and just still having doctors being like, you're not really in pain. I'm like, no, I am.

Yeah, I am. And the thing though is with CRPS, it is not an invisible illness. The extremity turns, like Brianna said, it can turn purple, it can turn what we call modeled, which is almost like lizard type looking. Sorry, I've never even seen that. It can be waxy.

So it can look like your hand has just been like dipped in wax and you can't move it, it's shiny. So for people to say that it's not real and they don't think that there's anything wrong, there's physical changes. Every episode I want to punch someone. Every episode I'm like, who do I need to beat up now? I know every time I listen to your podcast, I'm like, oh my God, there's another person

there. Like, well, that's not real. And it's like, no, you get to go home and it's not real for you, but we have to live with this every day. Like it is real. It is. And I mean, you were an Irish step dancer. Like those are some of the most athletic people in the world.

So I can only imagine how devastating getting CRPS in your foot was. Yeah, and it doesn't go away and it's so frustrating. So you're living with this. Yes, yes. So that was in the eighth grade all the way through high school. And obviously I still have it, but it's a lot better now. So it was my introduction into doctors not necessarily believing what's going on. So the reason I'm here actually has nothing to do with complex regional pain syndrome,

but it did impact the way I approached seeing doctors about it and how I felt doctors were going to respond. So just after freshman year of college, I was living at home, I shared a room with my sister and so it was like summer. And one morning I woke up and she was like, what happened last night? And I was like, I don't know what you're talking about. And she was like, you were jumping on your bed. You were screaming. You were slamming on the window. And so I was like, um, I don't know. And it was a little embarrassed, but also like, she was like, you were swearing like crazy. And I

was like, I don't, I don't remember any of that. And so we were just like, okay, that's funny, whatever. And I never had really sleep issues before. Sometimes I sleptwalked, but nothing crazy. And so this just started happening again. And I would get up, I would run around the room, a lot of banging on the windows, screaming, and we were like, that's odd. It was good to have someone else in the room because otherwise

it would have taken longer to notice that this was happening. Good for you, bad for her. Yes. She was worried about getting hurt herself because I was lashing out. And she was also like, you keep waking me up. And I was like, I don't, I don't know what's happening. Did she try to wake you when you were in the middle of these episodes or what, or she was just...

So she would be like, Brianna, what are you doing? Brianna. Cause she was still half awake too. She'd be like, Brianna, what is wrong? And obviously I would not respond. And so it was weird because normally if she kept saying it, she thought I would eventually wake up. Like she would shake me and I wouldn't wake up. And she said I would not respond. And so it was weird because normally if she kept saying it, she thought I would eventually wake up, like she would shake me and I wouldn't wake up. And she said I would look at her, make big eyes and then go back to sleep. And I would remember none of it. Um, 18. So, yeah, it just kept happening.

And at one time my sister wasn't there and I woke up to this one. I was standing in the closet, opening and shutting the closet, screaming. And I remember eventually my mom came in and she was like, what, what is going on? And again, I just gave her the eyes and I remember waking up this time and being like, why am I in the closet? And then I just walked back to bed and I was like, okay, not sure what's going on. Because of the complex regional pain syndrome, I didn't think that the doctors would believe me or understand the severity. And they might just kind of think I was overreacting. So with that background, I was like, I'll go to the doctor, but I still think they're gonna be like, we don't know what this is. So I was

like, I'll just wait to tell my pediatrician when I go just kind of toss that in there and see what she thinks. I'm just going to tell you where I grew up, you would have a priest at your house. People will be saying some words. Yeah, it did seem like that. Yes. It was like the screaming and the slamming and like thrashing. And so I told the pediatrician and she was awesome, but she was like, I, I, this is really odd.

Like I have never heard of this in starting in an 18 year old. And I was like, yeah, so what do you think I should do? And I was going back to college and I'm very close with my roommate. She was like, just have her keep an eye on you, but we'll refer to, to a sleep specialist, but it's going to take a while for them to be able to meet with you So I went back to school and she just documented it as sleepwalking So I was like, okay Walking

Yes, parkour sleepwalking. Yeah, I was like, all right, I guess I'm sleepwalking So I went back to college sophomore year and told my friends. I was like, so I'm sleepwalking, um, little crazy. And so there were same episodes that were happening at school. Like one time I woke up and I had my coat in my hand and I was ready to leave the dorm and I didn't have my phone. And luckily this one, I had woken myself up because otherwise it would have been outside the dorm with no phone in my pajamas. And so a lot of episodes like that and my poor roommate would wake up and I'd be either running towards the door or jumping on the bed or something. And so

that just kept happening. It wasn't every night either. You never knew when it was going to happen. There wasn't like a pattern. You should have just tied yourself to the bed and just been like, this is who I am now, this is how I sleep. Were you feeling scared? Were you feeling embarrassed? What were you feeling when these episodes would come to life? So I was embarrassed, especially at night. If they were able to wake me up in the night or I woke myself up from it, I would feel really embarrassed.

And then I'd go to sleep and then I'd wake up and we just all like kind of laughed about it. Cause it was like, that's just so odd. I was nervous that something would happen. Like I would get hurt or I would end up outside alone. So that was the fear. Did you wake up tired? Yeah, I've always been someone who could sleep forever.

My friends always say, if we put you in a room and there were no lights on, you could probably sleep for 24 hours. So I just didn't think anything of it. I was tired, but I didn't really think that correlated with the night terrors. I'm just thinking like you're doing a full scale workout in your sleep and then you're getting up and living a normal life. I mean, yes, I would wake up kind of feeling weird the next morning, but I could never tell. I'd have to ask people like, did I have a sleepwalking incident? And so that continued. And then I was going

to go abroad and I was like, okay, now I'm embarrassed to have to tell people because I didn't know anyone else going. And I was like, I'm going to have to announce to these people that I'm living with that I'm going to be running and screaming in the middle of the night and that they can just ignore it. So I went abroad and I met some of my best friends. So it worked out and I was able to just jokingly tell them after a few drinks, I was like, so this might happen, but no need to be concerned.

And when I was abroad, this was the first time I was sleeping in my own room. Normally I had a roommate. And so I'd wake up upside down in my bed or things would be moved around in the room, but I was on the end of the hallway, so no one heard me. So we're not really sure what the episodes looked like while I was abroad, but I know things were happening

because I was waking up in weird thoughts, but all contained in the room, which was good. And never any documentation of it? No. This is making me feel like you had another personality that came out at night, like a Dr. Jekyll, Mr. Hyde situation. Like, yeah, like a different person, like a different person.

Yeah. Yeah. And that's why I was worried too, that I was going to do something that I would be ashamed of or something. Cause I was like, what is happening? What is coming over me? So after that, I, I think it was the summer, I eventually got an appointment at the sleep specialist. And he immediately didn't even look at me when I walked in and was just kind of like,

I think you have nightmares. And I was like, okay, but like, can I tell you more about them? And he, I was like, I think there's a little bit more. And so he was like, well, are you breathing in your sleep? And I was like, I think so. He was like, yeah, if you have sleep apnea, we can deal with that. Otherwise, I'm not really sure what to tell you.

So I was like, yep, please let me do a sleep study. But I kind of had a feeling that nothing was gonna happen because it didn't happen every night. And I was like, I know my luck and I'm not gonna have one. So junior year of college, I went into the hospital, they did the sleep study. And then they were like, just so you know,

we brought in a ton of medical students because we've never heard of something like this. And we just thought it would be really interesting for them to see. And I was like, what? Okay. And so I was like, knowing all these people are watching me, I don't, I don't know if it's going to happen, but I don't know if I'm. Yeah, I know. I was like, I really hope so. But I don't know. Your entertainment was like, I am ready. I was like, we need some L tonight. And as you know, from the sleep study, your head is covered with the stuff and all the different wires and stuff.

Yeah, the goo. If you've never had it, they put this goo on your head in various places and honestly all over your body on your legs, on your arms. And then they attach it all to a giant bundle of cords, which go down and attached to this thing that in my case they hung by the bed. And then you could pick it up easily if you needed to go to the bathroom in the middle of the night. And all the lights are off, but they have infrared cameras on you. So it is even just going into a sleep study is not easy to sleep. I would say in, in, it's not a comfortable situation.

It's not painful, but it's definitely not comfortable. No. And like you kind of have to lay on your back because of the situation coming out of your head. So it's like a whole thing. It is. We will put on the Instagram a picture for my sleep study so you guys can get an idea of, also I look terrible, but it'll give you guys an idea of what that looks like because

it is a lot. It is a lot. And then to have all of that and then have a bunch of people watching you is wild. I was like, I don't think it's going to happen. And when I woke up in the morning, they were like, didn't happen. And I was like, I'm really sorry. But I was like, I really wish it did too, because then we would have some answers. So I went back to the doctor.

And that was just a one time shot. Yeah. And I went back to the doctor and he was like, so it looks like you have anxiety and depression. I mean, you might want to go to there. Of course. Every time, every time, every time. And I was like, okay, there's nothing else.

And he was like, Nope, you should seek therapy. And I was like, okay. Um, so it shouldn't laugh, but it's just so predictable. No, it was, I just remember going into my parents' car and I was like, he just really dismissed it. And I was like, this seems like there's more to this. But he was like, you don't have sleep apnea, so you're fine. And I was like, I know there's more issues than sleep apnea, but if it wasn't for my experience with complex regional pain syndrome, I think I probably would have believed myself more or fought for myself

more. But since I had been to the doctors every few months for seven years, I was kind of like, they might not be able to solve it or they're not going to believe me. So I was like, either this is going to be a really long journey of figuring this out, or they're just going to brush it off completely. And I think the idea of that was just so exhausting that I decided to trust that maybe it was just sleepwalking. So I just was like, I guess I'm fine. I don't think I have anxiety and depression. So I'm just gonna keep going about life and see what happens. Um, so that just to interject, mind you, you are dealing with a awful chronic pain condition, right? At the same time.

And you're saying I'm not depressed and I think I would trust you. Yes. So I just kept having them and I was like, I guess nothing's wrong. And then I started having visual hallucinations around nighttime as well. I would wake up and I was awake or what felt like awake

and I would see people that I knew like it wasn't like dead people it was people I knew and I was like oh I've really gone crazy. I would think that my sister and I no longer shared a room but I would think that she was like in the bed next to me and I'd be awake and I'm like, why is she there? And I would try to have a conversation with myself. And for some reason, I always felt like I had to take a picture with flash to prove to myself they're not really there. Or it would be like someone I went to high school with seeing them at my doorway and

I would be like, okay, let's take a picture and then we'll look at the picture and see if they're there. Sometimes I would turn the light on, but a lot of times it was a picture for some reason in my head was like, that's how we're going to know that they're not there. But it felt that every time it felt like it was so real, it was like, no, they're really there. And I was like, that is so odd. And I didn't really tell anyone about that because I was embarrassed by that. I was like, I feel like that's kind of crazy. And then one time my, my friend's favorite story is I thought that Chip and Joanna from fixer upper were behind my bed.

I'm from Texas and Magnolia is not that far. So it was huge that they were in my room. So I fixed it up. I took a selfie with flash for this one, just in case they were there. So there was a picture of me with a blank wall in the middle of the night. Because I was like, in case they're there, I need this picture. Definitely going on Instagram. I love how you put yourself in it. You feel like, yeah, just in case. I don't want to miss this one opportunity.

Yeah, in case they disappear, I want to make sure I have this. So I'd wake up and I'd be like, why are all these pictures in my phone? And then I was like, oh my God, yeah, I really thought they were there. Who was the first person you told about them? I told my sister and my parents. I was like, I'm seeing things now because someone saw the picture or like, I think I might've been like talking, I think. And I was like, I don't, I don't know if that's there.

And they were like, what are you talking about? And then I kind of was like, all right, yeah, I'm seeing things. And then I was like, you know what? The Chip and Joanna one is funny. So I'll just lightly start telling that one. And what was their response? Okay. They were like, that's weird. It's probably still in your

sleep, but I have pictures and I know what I saw and I know that I felt awake. And so my friends who are into spirits were like, Oh, I think it's spirits. And I was like, well, no, they're alive. These people are alive. We would just make jokes about it because it's like the doctors clearly don't seem to care or know what's going on. So we'll just joke about it. So then I was like, okay, I'm going to ask to go to a second doctor, just to see what they think about this. And because of insurance, I had to go to the same clinic, but it was a different doctor. And so this doctor I was telling it about, and he was like, so I'm just worried about when you have a partner

and you're sharing a bed with them, like what would happen to him? And I was like, but I'm now in dangerous situations. Like I had one of my episodes, I was jumping on the bed and my foot slipped in between the bed and the mattress, the bed frame and the mattress. And I was like, okay, I don't even know if I just broke my ankle. I woke up in so much pain.

And so I was like, I nervous about hurting myself and he's nervous about a future partner. Um, and so I was like, yeah, that don't even exist. Yeah. Yeah. And he was like an older doctor too. And he was like, so I think you need to lower all furniture in your room and your house, and you need to not have anything sharp in your room or your house.

And I was like, my room, I understand. Like I did have scissors, you know, so I'll, I'll move them. But I was like, I have to have knives in the house. Like that's, you know, like I still going to have steak and butter, you know, like I need knives and so. You got to have steak and butter. Life's needs. Steak and butter. Priorities.

I was like, I need, I need those knives. So he was like, yeah, I think you're fine. And then still you should go to therapy. It was 2020. So it was on zoom and I just was sitting in my bedroom and I just remember crying after because I was like, I finally got a second appointment and I thought this doctor was actually gonna care.

It was like, not even whether or not they believed me, but to care. And I just felt like he did not. It just felt like a man was worrying about another man who wasn't even in my life and doesn't exist right now. And I was like, why is that what you're thinking of? And so I was crying after because I was so frustrated that he, he realized the severity of me potentially hurting someone else. But I was like, how do you not care if I hurt myself? A part of me was like, maybe this is

anxiety. And because that's kind of how they acted with the complex regional pain syndrome. It was like, you're not really in pain. And they made it seem like I was overreacting. And then I was like, maybe I'm just sleepwalking. And it was almost like gaslighting where it was like, no, you're fine. And even though people were seeing me have these night terrors, I still felt like maybe I feel bad for myself. Maybe there's something not really wrong and I'm being dramatic.

And I did a lot of research online and it was saying like a lot of PTSD and then anxiety came up and so maybe it's anxiety. And so I was like, all right, I'll go. And even if I don't have it, at least I can say I tried. So this was senior year. This was also COVID. So not a great time for anyone. So we're like three

years in at this point. And I went to a therapist and we had lots of appointments and eventually she's like, you have anxiety, but this has nothing to do with what's happening at night. Like this makes no sense. So I'm going to refer you to a psychiatrist and a neurologist because they can't keep telling you that this is anxiety and depression when I know it's not. And so that like really like, yeah, that like altered everything. And I remember going into the house after

and I was telling my mom, I'm like, they said that we're actually gonna move on from this and we're not just gonna say, oh, it's anxiety. And my family was shocked that they were taking it seriously and it could be a neurology thing, not just a sleep thing and seeing two new doctors, it was like, okay, there's two chances that someone's going to be able to solve this.

So I went to the psychiatrist and she was the first person who was like, nope, this is not mental health, but we're going to figure this out. And she changed my life basically because she was such an amazing advocate. So I went to the neurologist. She's like, you need to go to the neurologist and tell them what's happening. So when the journey had first started, I saw a Grey's Anatomy episode where a man had attempted to jump out the window during a sleep incident.

And I was like, that seems like the same thing that was happening to me. And then after a while they figured out he had seizures. And so that triggered something in my mind. And I made that connection. And I was like, I can't go in and tell the doctors that I saw this on Grey's Anatomy, but I really think I have that. But I was like, we're in a neurology office. I feel like I can bring up seizures

because this is something they know about. So I told the neurologist and she was like, I don't know, it doesn't really sound like it, but I still was like, I just wanna put it on the table and see what they think. And she was like, we'll do a MRI and then we'll start looking into seizures and see if we can do an EEG and see if something happens with your brain. So we did that.

And I've had so many MRIs just from the complex regional pain syndrome and everything. I was like, all right, we'll just do another MRI. And then they did the first EEG. And EEG is just to test for seizures. So it was the middle of the day and they. And EEG is just to test for seizures. So it was like middle of the day and they're like flashing lights and trying to see if I would have a seizure with again, all the wires on my head. And nothing happened.

And so nothing came back with either of those. And then we're all just like, yeah, I'm not sure. So I went back to my psychiatrist and she was like, nope, we're gonna do a 48 hour EEG. And I was still living at my parents' house and it was my first year teaching. And I woke up surrounded by glass banging at my window. I had thrown a candle across the room, like a full-size Bath and Body Works candle, and it shattered. And I was trying to open the window and I was screaming. And so my parents came in and they were like, Oh my God, what is going on?

And I woke up and I was like, I, I don't know. So I had to like get over the glass and I went back to bed. Like I, like I always did. I would just immediately go back to bed, like pull my covers up and pretend I was asleep. I would be like, okay, if I just pretend it's not happening, then it'll be fine. So this was an extreme case of that where I was like, pretend it's not happening. Like my parents are in my room sweeping up glass from the candlelight just

broke in the middle of the night. And so my parents were like, I think you're really stressed. Maybe that has something to do with it. So then that's when they were like, okay, we really need to talk to the doctors about doing the 48 hour EEG. And again, I'm a teacher. And so they were like, okay, we really need to talk to the doctors about doing the 48 hour EEG. Again, I'm a teacher. And so they were like, you're going to have to wear it to work. And I was like, that's fine with me because I need to prove to someone that

something is happening in my sleep. What grade do you teach? So first grade. At that time I was teaching first grade. I had to like email all the parents and be like, I'm okay, but I have to do this. And so this is what I'm going to look like. And so the kids were totally fine with it. I'm very close with all the teachers, but they were dying laughing.

And we were like, it's funny because I had my whole head wrapped with all the wires under it. And then it was like tape all around my head to keep it all attached. And then I had a fanny pack that connected all the wires. And then at night, when I would sit down, I connected to this big box, which also had a camera that would watch me. So I had that for 48 hours and everyone's like, Oh, I would never want to do that. I wouldn't wear that to work. And I was like, no, I am wearing this to work. We are going to see what happens. So if someone's willing to do that, you know that they have an issue that

they just cannot live with anymore because it's like, when you're like the trade off, I'll look like an idiot for a couple days to get answers. I'll do it. I think I probably caused almost a few car accidents because people were looking over like, what did I just see? My boss had said there was a tour going on of the school and I was sitting in the class working and my kids weren't in there. And he just goes, oh, it's crazy hat day. And then just walking back. Oh my God. Like, yep, that's what it is. Just really into the crazy hat day. So I was like, okay, something's got to come back on this study. So I got a call a few weeks later and it was from a nurse and she's like,

we found something on the EEG. So we're going to put you on seizure medication. And I said, so did you find a seizure? And they said, yes. And I was like, okay, but I don't have a seizure disorder that I know of. And they were like, well, it was just a nurse too. So she was just kind of interpreting what the doctor said. And she said, well, that's what it looks like it says here. So you're just going to go on the medication.

And I had my first graders in the other room. So I was like, okay. So I hung up really quickly. And then I was just in shock. So I had someone cover my class for a little bit just to process that. But it was very nonchalant. And I just, I don't think the nurse realized this experience that I had gone through. So I hung up and then I told the guidance counselor that I was friends with and she was like, I think you need to book an appointment and see what they say because you don't have seizures. So if they're diagnosing you with that, then you need to get that, figure that out. So I went to the doctor and they were like, yeah, so you're not having night terrors, you're having nocturnal seizures in your sleep.

So they can, I guess, like mirror, they look similar, a night terror to a seizure, and it can be similar symptoms. And after all this time, it was crazy to find out that it wasn't just sleepwalking, it was a full seizure. So this medication should prevent it from happening at all. And I was on Klonopin as well, in case it was panic attacks. And she was saying those together should definitely cancel them out completely. So I was so excited when I left to be able to tell everyone because so many people knew about the episodes that I was excited to be able to be like, there's a name to this. People know what seizures

are and I can't wait to be like, this is what I have. I'm not crazy. This is what I have. Um, but question. So I've seen someone unfortunately have a seizure and it is very terrifying, right? I can't rationalize that with a night time sheet. So like, why were you so active in doing things? Is this normal? I mean, Erin, I don't know if you have insight into this or not, but it's so different than what I've seen as someone having a seizure. So how does that work? I am definitely not an expert and not a neurologist, but again, the definition of a seizure is abnormal brain activity, right?

In a pattern, right. For a prolonged period of time, there are multiple different presentations of seizure. For example, one is called an absence seizure, which is where you just stare into space. And that could be a seizure. Yes. So for a lot of children, they are being misdiagnosed as you're there. They're not paying attention thinking they're just defiant, right? And they're not listening to you when they are

physically having a seizure that they cannot process anything. And so they just look like they're staring into space. So there are a lot of different presentations. And in this case, the result of that abnormal brain electrical activity resulted in your symptoms, which for whatever reason included the screaming and the jumping. So we are still trying to figure out exactly what kind of seizure it is. They might be called sleep-related hypermotor epilepsy, and these are seizures really related to sleep. So some people with these types of seizures get what is called episodic nocturnal wandering,

which looks exactly like sleepwalking and can really be hard for diagnosed doctors to distinguish between sleepwalking. And I'm guessing the hallucinations were also part of those symptoms as well. You can hallucinate from a seizure? So once a seizure is done, you're in a state called the post-ictal state. And that is a time because you said you were awake, right? When you had the

hallucinations. So you had the seizure when you were asleep. And then when you were awake, you were in this post-ictal state. And so your hallucinations were part of that coming down from a seizure. Yeah. And it was such a crazy diagnosis, again, to know that those were connected too. So then I was put on Lamotrigine and Clonopin and did not have a night terror since.

And it was crazy that it wasn't simple, but like a 48 hour EEG just to prove, like just to see there was some abnormal brain situation going on. And then it completely stopped happening altogether. So I was totally fine for two years. And then last year, well, last year I had, um, it was at night, but I was like in my living room seizure, like a tonic, chronic daytime seizure and had the full episode after two were very confused, like felt like I was dying. And it sounds horrible to say, but it felt good to have people see. I had a three minute seizure in my living room. And I was like,

at least everyone can see like, this is what's happening at night. I'm not making this up. And it was a tonic, clonic one. So it's when people think of seizures, that's what they think of. And people take them seriously too. And so it just felt like people would understand the severity of it. I remember when the complex regional pain syndrome was really bad in my head and I was having horrible headaches and it felt awful. My mom was like, it would be so much easier if you could just wear a band-aid around your head and be like, this is like, no one can see it. If you're not telling people, then no one knows. Whereas this, I'm shaking on the floor for three minutes, unconscious, at least everyone can see that. So it was just having something

that people know about felt better. And I felt like, at least I can just say this and people will be like, okay, there is something wrong. Like I am getting taken to the emergency room at 10 o'clock at night because I just had one during the day, like I really have something wrong. So then I couldn't drive for six months because they weren't sure if it would happen again or when. They have to wait six months. So finding that out in the hospital, I was like, great. But luckily it happened in my living room. I wasn't in the car. I didn't hit my head. So then they fully diagnosed me with seizure disorder, but they are under control.

So they hired my medication, and now I've been a year and a half with no night terrors, no seizures. So it's been great now that I've been diagnosed with everything. Yeah. And also something that we touched on earlier, but in medicine, there seems to be a great divide between psych conditions

and medical conditions, right? And a lot of the symptoms which you associate with having a psychiatric problem, the hallucinations, right, for one thing. If you tell someone you're having a hallucination, you're probably getting a trip to the psych ER, right? And I think it's important to understand that there can be medical causes to some of these symptoms, which we just assume are psychiatric. And the other way around where how many times have we talked to women who

have been diagnosed with anxiety? Well, it's probably because you have a medical condition that's making you feel anxious because it makes you feel horrible. So yes, you are presenting in a matter that seems anxious, but that doesn't mean you have anxiety disorder. And I think too often women are given that label of having anxiety and anxiety disorder, and then that stops the further investigation into a potential medical, treatable, reversible cause. Yeah, my psychiatrist, who is the one who put this all together, she really is holistic and sees the whole thing.

And she's like a lot of the primary care doctors that I work with. It's like, you do mental health and we'll do the body. And she was like, no, they are together. And it's unique. I haven't seen that with many doctors or even mental health professionals. And it took me many doctors, but finding my psychiatrist changed everything. And like, it's not safe to have seizures in the night. So it really could have saved my life potentially. And I think it's been so helpful that she's looking at the whole thing.

Yes, it can be generalized anxiety, but it can be other things too. While we were waiting for all the tests, she was like, okay, we're going to put you on anti schizophrenia meds to see maybe that's why you're having the hallucinations. But she was like, but we're not going to stop there. We're going to, we're going to look at different things. And so, yeah, it is a treatable thing and my anxiety did go down a lot. And so we need to keep going beyond just, oh, you're just having anxiety. And I met someone, I play on like a recreational kickball team and I met someone this year that also has nocturnal seizures and they were like, you are anxious, you are depressed.

She was like, nope, I think something's wrong and she has it too. And so it was nice to be able to talk about it to someone else. But also I'm trying to tell people about it because I'm like, some people are probably having these night episodes and no one, no one takes it seriously or they're, it's just like, Oh, it's a nightmare. And so it's important to tell people about it too. And I want to point out, I just want to point out a clue that was probably missed in your story. But the difference between a nightmare and your nocturnal seizure is that we remember, right? You're woken up from a nightmare because you remember what it is. You remember that mattress chasing remember, right? You're woken up from a nightmare

because you remember what it is. You remember that mattress chasing you, right? You are having a nightmare and oftentimes will wake up. That occurs when you are in usually it's called REM sleep. And so you are aware of the dream that you're having in the nightmare. In your case, you could never remember the events, right? Because they were happening outside of that REM period.

So, you know, it's a tiny clue. And again, I say this all the time, easy to Monday morning quarterback situation, but I think it's very helpful to help people differentiate between what's a nightmare, which is probably more related to feeling anxious, feeling stressed and things versus in your case, it was a medical condition. Yeah, because a lot of people when I'm like, oh, this was happening, they're like, oh, I have nightmares too.

And I was like, well, I don't really remember them. And I think it's a little bit more than a nightmare. But yeah, that is something that I can see now. It was like, I wasn't remembering it. So it wasn't like I was afraid because I wasn't having a nightmare. Yeah. And I always say that if sharing your story helps one person, then it's all worth it. And if anything, you have now put this thought into people's heads and they say,

you know, I heard that from a friend of a friend of a friend, doesn't matter. You know, it's that somebody heard it. And then that will help that person be one step closer to solving their medical mystery. It might just be something in the back of someone's head that they say to their friends and it changes their life. Yeah. My friends are like, oh, why are you going on that? And I was like, in case one person is going through what I was going through five years

ago, they could be like, okay, I heard this on a podcast, and then they can advocate more because having someone else to be like, no, they had this, the same symptoms can help the doctor too. Are you living by yourself, like in your own room now? Yes. Okay. Driving? Yes, back to driving. Well, thank you so much for taking the time to share your story and being vulnerable. And I know we had a lot of laughs on this episode, but also I don't want to diminish how probably scary all that uncertainty was for a long time for you. Yeah. I mean, I know I made it humorous, but for me, that's how I deal with uncomfortable things.

I find that if I can laugh at them, they're less scary. Yes, I'm the same way. But I'm sure you did feel really scared for a lot of that journey. Yes, thank you for having me. The Medical Detectives is a soft skills media production produced by Molly Biscar sound designed by Shane Drouse. If you have a medical story you'd like to see featured on The Medical Detectives, please email it to stories at themedicaldetectivespodcast.com. The information information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content.

All discussions are general in nature and may not apply to your specific health situation. established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately

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