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128 - Rachel Nesmith - Living with Narcolepsy Type 1 and Sleep Apnea

Rachel Nesmith

Emma Cooksey: [00:00:00] So, Rachel, thank you so much for joining me. 

Rachel Nesmith: Oh, no problem. It's so nice to meet you. It's you in the flesh, Emma. Right. It's lovely to meet you, 

Emma Cooksey: too. So, do you want to just start off with telling us a little bit about where your symptoms started out? Like, how old you were when now you realize there were symptoms and what you thought that was at the time?

Rachel Nesmith: For solely the sleep apnea? Oh, 

Emma Cooksey: for, for your whole, we're going to talk about everything that happened. Okay. 

Rachel Nesmith: All right. What happened was I went to the Texas women's university and I worked with the animal the, the lab rats and I would change, I would do their litter, their water. And I, in that summer of 2011, it started with the, the excessive daytime sleepiness.

Like, literally falling asleep off my stool during lunch, and they [00:01:00] were worried about me. And I started doing automatic behavior where I would put in two food bowls instead of a water and a food. And my partners were like, wait a minute, you're ruining the validity. And I'm like, I didn't mean to do it, but it was like automatic behavior.

And when that was all that summer from June to August, but when 9 11 happened, that's when the, the sleep paralysis with hypnagogic hallucinations started up almost all night every night. And it was like, it was like, I could feel the flame, I would have nightmares about 9 11. 

Emma Cooksey: so when that first happened to you, had you ever heard of narcolepsy or any of these 

Rachel Nesmith: symptoms?

I, I knew of sleep paralysis. I knew I was having sleep paralysis all night, every night, and that, that it wasn't just an occasional, it began doing it, like, all consuming. But I, I definitely knew, knew about, I was a [00:02:00] psychology major, I was going to be a psychologist, so, I, I was aware that I was having sleep paralysis I, I, it was in November, well, it was beginning in October, when I would, when it started having cataplexy, I didn't know what in the world it was, it's just whenever I would laugh or get angry.

I would feel my knees give out and, and it, it was just like the weirdest, most unsettling feeling. It's like, I say, it's like a cataplexy tingle and it's just the most helpless thing to fall to the ground and feel the pain of falling and one time I broke my foot in three places from, from cataplexy.

So 

Emma Cooksey: for people listening, we've done a number of episodes now with a few people who have sleep apnea and narcolepsy. I do. Some of them. Yeah. with narcolepsy and some of them with narcolepsy and cataplexy. So just to kind of remind people listening, the cataplexy part is where with [00:03:00] emotion, you have muscle weakness that can show up in different ways for different 

Rachel Nesmith: people.

So 

Emma Cooksey: you're falling over a lot, which obviously can mean injuries. 

Rachel Nesmith: Yeah, it can. I am treated. When I'm treated, it's not, it's not like, like, I, I usually don't break bones. No. And 

Emma Cooksey: so tell us where the sleep apnea part came in.

so that was happening while you were in college. Did you actually get your narcolepsy diagnosis then, or when did that happen? 

Rachel Nesmith: You did. What happened was, is I, I, I was I was looking it up constantly trying to sleep paralysis, so what could this be? And then, and then I read about cataplexy, and I was like, that's what I'm having, but I didn't, I had to disconnect, I wasn't clicking together to put it together.

Oh, that's narcolepsy until my grandma's like, you have all the symptoms of narcolepsy. 

Emma Cooksey: And, and I looked it up. Was there anyone else in your family that had that? How did your grandma know? I feel like awareness is [00:04:00] pretty low. 

Rachel Nesmith: I think she, she had it, honestly. I do have a cousin with type 1 narcolepsy from that, that from the same lineage.

And we always wondered about grandma, but, I definitely have both the genes. I have sleep apnea, everybody has sleep apnea in my family. Yeah. My, my dad, my husband, me and, and it, it's, it's a really harrowing experience when you're trying to figure out what's wrong with me, why am I broken, Dr.

Philip Becker, after I was treated for narcolepsy sometime, he wanted to do like a, see if he could increase the wakefulness, and that's when he decided to test me for sleep apnea. Which I did have. I have obstructive sleep apnea, but I didn't realize how bad my sleep apnea got until May I had I got a new sleep doctor She's great.

Dr. Anne Marie Morse. she's [00:05:00] Amazing. I went to the Mayo Clinic to get completely Rediagnosed with narcolepsy. They did a spinal tap And, and my parents, like, you know, it's like 13, 000 dollars, but you have to have that diagnosis in hand, and I, I just, I just don't even sleep without Zywave, I just stare at the ceiling all night going in and out of sleep paralysis, unless I have Zywave.

That's the only way... That's the 

Emma Cooksey: narcolepsy drug you take at night to stay awake, or 

Rachel Nesmith: to stay asleep, rather. Yes, just to consolidate the sleep. When you think about narcolepsy, it's good to think of it like a metronome. Like like we no longer have that metronome. There's no rhythm to the sleep cycle I found out in May 

at the Mayo Clinic that I didn't just have sleep apnea Obstructive.I had really bad Treatment emergent central sleep apnea. Yes. it was [00:06:00] caused by the CPAP. Mm-Hmm. . I had to buy a whole new machine, a BiPAP, and it's, it's still a lot of wonders.

And I found out that. My oxygen levels were plummeting hugely because I would get that, that central sleep apnea with just the bipapal bone. I did a second overnight sleep study. And, and I was much improved. 

Emma Cooksey: And, and... So, tell, take us back to you, when you first got your diagnosis, so you were in college, is that right?

And so, when you first got that diagnosis, it was originally... Just for narcolepsy and then later the sleep apnea or was it at the same time? Sleep 

Rachel Nesmith: apnea was a bit 

Emma Cooksey: later. And so how did you feel with the, that diagnosis of narcolepsy? Did it explain a lot for you? Like, did you feel like upset, you know, like you weren't expecting that or what were 

Rachel Nesmith: your feelings about it?

No, by the time I was able to get diagnosed with narcolepsy, I went [00:07:00] in knowing what I had. because of my grandma. 

 I put all the symptoms together and I said, and when my grandma told me about cataplexy and I read, if you have cataplexy, you have to have narcolepsy.

And that's when all clicked for me. So I went in to my PCP going, Hey, I need to get a sleep study done. There's something up and it's narcolepsy. I just know it's narcolepsy. And, and that's when I found out in that my, my mom's the health insurance excluded all sleeping disorders. So that meant... So 

Emma Cooksey: the insurance had an exclusion for all sleep 

Rachel Nesmith: disorders?

Yes. In 2001. Wow. when I'm, when I first met my husband and we started dating, of course, the narcolepsy came up and he's like, I don't know, that's a big deal.

You know, I don't know if I can handle that. You know, I think it's a major problem. Like, hey, look, I'm everything you ever wanted in a woman. I just happen to have narcolepsy. [00:08:00] he's like, well, you know what? I have sleep apnea and I use a machine.

But you probably don't think that's sexy. That's not sexy. My ex girlfriend hated the machine. And I'm like, yeah, breathing is sexy. Breathing is sexy. Getting 

Emma Cooksey: oxygen to your brain is really sexy. Yes, definitely. And being able to function during the day. Yes, 

Rachel Nesmith: and, and when he, he always uses CPAP and, and I'm very proud of him because he, it's important to have a partner that actually cares about you

There he is, this like phenomenal guy that's been like, like sleep shamed his entire adult life by, by significant others that say he's not sexy. Right. Apparently to me that signals that they didn't really care about you. 

Emma Cooksey: Or, or also just that they didn't know anything about what sleep apnea was, right?

Like, I think that the level, or they didn't care enough to find out. Like, I think the level of understanding in the general public [00:09:00] is so low that that's often part of it, I think. So, you started treatment for narcolepsy in the first instance, and So you were essentially paying entirely out of pocket than if it wasn't covered.

Rachel Nesmith: when the fall semester ended, and it was starting January 1st, that's how I transferred onto my dad's insurance, which is a Blue Cross Blue Shield, which covered sleeping disorders.

Emma Cooksey: so once you got that diagnosis with obstructive sleep apnea, did you start on CPAP right away or did you discuss other treatments or what happened?

Rachel Nesmith: I had a lot of trouble being compliant and wearing the mask. it's hard work to make sure that it stays on your face as much as possible. 

Emma Cooksey: It's hard work for anyone, Rachel, but people who are dealing with. narcolepsy and they're dealing with hallucinations and sleep paralysis and all these different things.

it's astonishing to me when I hear stories about people with narcolepsy, people [00:10:00] that have sleep apnea as well, having their CPAPs taken away because they have such a tough time adjusting, right? Right. 

Rachel Nesmith: That's why my parents, my parents bought the ASV out of pocket. 

But that's the only way that I can safely be on Zywave. And without Zywave, I mean, I, I just, I mean, it's like, worse than death. Living every day, exhausted,

Yeah. And when you have narcolepsy, you sleep around. And by that, I mean you sleep around the house, in the car. I mean like, I mean like sleep, sleep like around the house. And, and you don't always have that CPAP with you. But, but it's important to make it a habit and I know I need to continually do better on it because accountability is key.

I'm not 100 percent where I need to be. I, I've been around like, like 50 percent compliant. 

Emma Cooksey: Well, I think a lot of it, as well, is oftentimes people don't have a lot of support. [00:11:00] So I think sometimes, you know, adapting to CPAP can be really challenging 

Rachel Nesmith: for people.

So. I tried the dental device, like this is pretty novel back in 2004, 2005. Yeah. But, but, it caused a lot of pain 

Emma Cooksey: I don't know, I don't have narcolepsy, but for my friends who have narcolepsy and sleep apnea, I think it can sometimes be difficult to pick apart the sleepiness and whether it's a narcolepsy thing or whether it's a sleep apnea thing. So sometimes people will You know, be doing well with their sleep apnea treatment.

And it's like they get a little bit of time during the day where they feel like a bit more well rested until some of their narcolepsy symptoms come. So did you ever get to a point where you felt like it was helping you with your daytime sleepiness, like the CPAP or not really? Or do you think you had emergent apnea from the beginning?

Rachel Nesmith: Yeah, I am pretty sure I did. They just said that there are periods of central sleep apnea in [00:12:00] your sleep. And, and it wasn't, I never heard treatment emergence since central sleep apnea until Mayo clinic.

Emma Cooksey: so did they put you on an ASV when you went more recently? Yes. Yes. So tell us a little bit about, like, I'm not an expert about, These things, but I think with ASV, I've heard a lot of people with either mixed, you know, obstructive and central apneas can be treated with that.

So, have you done better with that machine? 

Rachel Nesmith: Absolutely. Instead of breathing against me, it feels like it's breathing with me. I don't know. The magic mojo that's in that machine, but I love, I love it, that, that's great, when, when you take your Zywave and the minute you lay down, you put your mask on, and you lay back.

And that's, getting into that habit, and putting down the cell phone is key. The consciousness, you say, this is for me, my health, so I can be the best of me that I can [00:13:00] be. 

Emma Cooksey: Tell us about, so I need to have Dr. Morse on my podcast. I love her, and I've met her a number of times in person.

Dr. Morse is phenomenal. 

So tell us for everybody listening, because I feel like oftentimes I'm telling people, you know, if you're not getting anywhere with the doctor you're working with, like change your doctor, you change your doctor, you get a second opinion, or you keep going. Yes.

Because I feel like the difference between. A really empathetic doctor can make all of the difference in the world. So can you explain a little bit about what was different with Dr. Morse? Was it just how she listened to you 

Rachel Nesmith: or? It's so many things wrapped into one. I met her two years ago on TikTok 

That's great. And we connected on being patient advocates, sleep medicine, I mean, it's the stuff we're both real passionate about.

she's just so humble. I mean, I, I went through, I mean, I [00:14:00] went through a period of not having a sleep doctor from February to June and having untreated narcolepsy in a period of time. 

Emma Cooksey: She agreed to see me on, we made the appointment on TikTok and, and this woman is, I mean, she's beautiful inside and out.

Rachel Nesmith: The reason why I love her, she's like, you know, I'm not your doctor. I'm not the boss lady. I am your healthcare partner, not provider. She does things. She's completely unconditional, positive regard. She knew how badly I had suffered trying to get a new sleep doctor and she agreed to see me and, work with my insurance.

It was like a dream come true. My dad and I flew up to Scranton, where we went. Yeah, Scranton from Texas. And my dad's like, hey Rachel, and I turn around, and here's Dr. Morse with her arms spread open wide, and she's like, comes over and gives me and [00:15:00] mom up there a hug, and it felt so good.

See, I mean, I hadn't even started my appointment. She's just like hugged me and I joked I held my like sleep in my medical record It's about that thick. Yeah, I said, I think I have a sleeping problem She laughs, you know, it's just a great sense of humor. That's how she goes by D A M M damn good sleep.

 this is a, a person who, who, she, her, her mother suffered with with a neurological condition called MS, and that's part of what drove Dr. Morse to go into sleep medicine. And so, did 

Emma Cooksey: you have to go through, did you do more testing there, did you do another sleep study 

Rachel Nesmith: and all of that?

I did all the sleep study,

I I knew I had narcolepsy, but you see what happens with me. It's that, that, with narcolepsy, the sleep paralysis and all that's so severe in me, is that if I just lay back, I just go into sleep paralysis almost [00:16:00] all night.

So it's hard for them to get enough nap tests in to see your positive I know I have narcolepsy with cataplexy, but I'm tired of, of constantly having to do these sleep studies. So they're like, okay, here's, here, you know, you go in and you get a spinal tap and, and it's a lot more, it's not as bad as people think it is.

Emma Cooksey: At least it wasn't for me. So, what did Dr. Morse provide? Like, obviously she put you back on the medications you needed to be on for the narcolepsy.

Rachel Nesmith: And finally, the third week of, of June, I started to get my life back on track. I mean, there was no makeup. There was no, like, It was just like crying, like I would say during that period is when I wrote a song called narco arachnoid narcolepsy because it just really feels that the way it affects your mental health, your ability to earn an income.

I mean, it makes you feel so low about [00:17:00] yourself. Yeah, 

Emma Cooksey: so that was going to be my next question just because doing this podcast, almost everybody I talked to with. Whatever sleep disorder, but you know, a lot of people I talk to obviously have sleep apnea, and almost everybody has some sort of mental health impact.

So, yes, so that has been a big thing for you as well. 

Rachel Nesmith: The self esteem, the self worth are constantly nagging. I'm never, it's like, like, can I be a good enough daughter or wife? Can I? Can I go out in public and not fall asleep in my bed of rice? I mean, that's happened before. I had sleep attacks in my food at restaurants.

And a lot of times people don't understand that you don't, you're not trying to purposefully be sleepy or lazy. You're just trying to go, keep on going in a world that doesn't stop. 

Emma Cooksey: And so you talked a little bit about being on TikTok and putting yourself out there. [00:18:00] So when did that come about that you decided to be on social media and talking about this?

Because I think that's so brave and really helpful to a lot of other people who are dealing with this stuff. 

Rachel Nesmith: Well, I started going online back when MySpace days. 

Emma Cooksey: on MySpace, we started like a narcolepsy support group, and, and that's where it was Led by Michelle Hernandez, who runs the huge, the biggest narcolepsy support group on Facebook now. But, but we started on MySpace with Open Your Eyes to Narcolepsy. And, and, and in 2009, I uploaded a video on the YouTube of me in status cataplecticus.

Rachel Nesmith: I got a whole lot of like, you know, that's demonic possession. I'm like, no, I'm trying to educate. Then if it was demonic possession, why do all these medications get rid of the demons? You know, it's not demonic possession 

Emma Cooksey: medical condition.

Yeah. Yes. 

Rachel Nesmith: I became sleepy [00:19:00] American because I don't want to, I was tired of feeling that, that low job of self esteem. And I'm like, you know, most people don't have to deal with this amount of suffering to get over the hill.

Yes, it's like, it's like, it's a lot of obstacles. The transmission on your car is just completely fried and busted and yet society still expects you to push your vehicle up the hill all the way. Yeah. I'm a superhero, and I was like, I'm Sleepy American, and my, my superpower is empathy.

Mm 

Emma Cooksey: hmm. Well, I think we all need more of that for sure. So tell people where they can find you 

Rachel Nesmith: online. I'm on Facebook. You know, I was the second generation of rising voices of narcolepsy. Wow. Yeah. So I did, 

Emma Cooksey: I did writing voices maybe two years ago and yeah, it was a really great program.

Rachel Nesmith: I met Julie in person [00:20:00] in 2016 in Orlando, Florida at the Narcolepsy Network Conference. Just what a delightful person. I mean, what she just takes you under her wing. She's like, I'm going to show you how to share your story out there.

when we all work together, we go to the white house, right? When we support each other, people listen, people used to be people would laugh and go, ha ha ha. But now they're like, what's that like? And last night I went out on a date with my husband to we have like the real unreal.

It's like this interactive art exhibit and going in, you know, I, just started talking about my sleep condition to, one of the ladies that worked there that was helping is showing us where it goes. She's like, you know. I have narcolepsy too. I have cataplexy also. And I'm like, well, this is amazing.

Emma Cooksey: I think the more you put things out there, I think, especially about the mental health challenges. Like, I think [00:21:00] I, one of the reasons I wanted to share my story was I felt so alone and isolated. I didn't know anybody else that was dealing with anything like this.

And, Once you start talking to people and saying, this is my experience, you realize most people in the same situation are saying, yes, me too. And it just makes you feel so much less alone. So I just want to thank you so much for joining me, Rachel, 

Rachel Nesmith: I really appreciate it. Oh, you too. It's really awesome. I love everything you do about sleep apnea stories.

I think that sleep apnea is an overwhelming epidemic, especially in this country. Yes. They do not value sleep enough. People do not realize how much you sacrifice by burning the midnight oil. 

Yeah, and people 

Emma Cooksey: with sleep disorders, find a doctor who knows about sleep, and if they're not helping you, find another one, I think is what 

Rachel Nesmith: we're saying. Exactly. Yeah Dr. Anne Marie Morse, I would probably give like 10 stars, if possible. [00:22:00] Yeah. 

Emma Cooksey: I'm so glad that worked out and that things are a little bit more 

Rachel Nesmith: manageable.

They, my life has completely changed because of that wonderful lady. Yeah, she, she's amazing. And she's so humble. 

I went on her podcast on Thursday. That was wonderful. 

Emma Cooksey: Yeah. So for anyone listening that hasn't yet found it, there's a wonderful podcast called Sleeping 

Rachel Nesmith: Around. Yes. Is that right? 

Emma Cooksey: And so Dr. Anne Marie Morse and Matthew Allard. And so yeah, I've listened to a bunch of them.

They're really good. 

Rachel Nesmith: listen, 

thank you so much, Rachel. Oh, no problem. Thank you, Emma. 

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