S3E6 - Rebecca's Resilience: Navigating Life with Narcolepsy and ADHD

In this eye-opening episode, we meet Rebecca from North Carolina, who shares her deeply personal and powerful experience living with narcolepsy type 1, cataplexy, ADHD, and a rare condition called gluten ataxia.

From the moment she describes sleep attacks hitting like an unstoppable sneeze to navigating misunderstood conditions while holding down jobs, attending interviews, and trying to maintain a “normal” social life—Rebecca paints a raw and relatable picture of life with multiple overlapping diagnoses.

She also opens up about:

Why she quit her stressful job to protect her health

The physical and emotional toll of food sensitivities

How her boyfriend and even her dog can spot sleep attacks before she can

The struggle between being social and simply surviving an outing

Using Luvox, an anti-anxiety medication, to manage cataplexy

Why she wouldn’t trade her narcolepsy for her ADHD


From hilarious analogies (sugar cravings as “fake diabetes attacks”) to heartbreaking amnesia moments, this episode is a masterclass in self-awareness, boundaries, and advocacy.

🔗 Plus: learn about her Facebook community for navigating gluten and dairy-free living with autoimmune disorders.

Transcript

00:13 - Kerly (Host)
hello, welcome. You're listening to seasons three of narcolepsy navigators brought to you by naps for life cic. Narcolepsy navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. Narcolepsy Navigators is excited to announce our new Patreon and merch store. You can choose to support us monthly via Patreon and receive bonus content from our advocacy and medical series, as well as a shout out on the show. Subscribing to our Patreon will allow you to have access to Narcolepsy Navigator's Discord server, where you can chat with other navigators, find support and ask questions to be featured in future bonus episodes. Higher tier supporters can also receive patreon merch or, if a monthly subscription is not in your budget, you can check out even more merch on our website, wwwnaps4lifecom. 

01:24
This week we would like to have a shout out to our very first Patreon supporter, katie, and our second Patreon supporter, jane Powell. Thank you very much for your support. I'm Keri Boger, the founder of Naps4Life CIC, and welcome to our stories. I see, and welcome to our stories. Hi everyone. Welcome to Narcolepsy Navigators. I am Kirli, your host, and I'm Lindsay O'Kerr-Haste, and we both have narcolepsy type 1. And today we're here with Rebecca in North Carolina in the US and welcome to her story. 

02:01 - Rebecca (Guest)
Hi everyone, my name's Rebecca. I currently live in North Carolina, a few minutes outside Charlotte. If you're not in the US, it's on the east coast and could be considered the south. 

02:14 - Liz (Co-host)
If you don't mind sharing your age, if you feel comfortable. I know your occupation. 

02:19 - Rebecca (Guest)
So I just had a birthday. I'm 39. It's the last of my 30s. I had a very stressful last few weeks and I just quit a job and I'm in process of looking for another one. 

02:32 - Liz (Co-host)
Amazing, well done. Good to get out of stressful jobs. Carolee, how has your week been. 

02:39 - Kerly (Host)
Week has gone by really quickly. I'm looking forward to Saturday. I've been asked to go to a different church and to speak about narcolepsy. They're having Disability Day, they've called it Ability Day, and they want to talk about barriers and how to break the barriers within a church environment if you have a disability and, I guess, how people can better help, make things easier for you or accommodate your situation. So I've been asked to go and speak on that. So that's nice to go and spread some awareness about narcolepsy. That's amazing, yeah, so I'm looking forward to that. I'll move in from the wig course into wig colouring and I finished my last exam for hairdressing, thank God, so I'm really happy about that. 

03:24 - Liz (Co-host)
Well done. So how was your week? My week was good. I had a short week at work because I worked a full week last week. So I got a day off today and I'm off tomorrow. My wash basket was overflowing. There's nothing in the fridge. I have so much life admin to do because I've just been putting my all into work. So very nice to have a day today where I could just get some of that stuff done, go outside, go for a little bike ride and have a good few naps on the sofa as well. So I feel like I'm finally going to recharge my batteries. That's nice. How's your week been, rebecca? You said that you've just quit a stressful job, so I imagine there's a lot of emotion going on at the moment yes, there is a lot of emotion, which emotion just makes me tired. 

04:13 - Rebecca (Guest)
The last couple weeks has been a lot of on and off sleeping and I don't think I've really processed everything that has gone on. This week I had an interview for a job, so I'm hoping for that. That also made me tired, so I think I'm recovering from that, so I just had my nap. This past weekend we did go kayaking. I can do rock skating, because I'm not good with walking very far because it starts to make me have jello legs. I'm better if I can sit down, which is why I enjoy kayaking. 

04:52 - Liz (Co-host)
Do you mind me asking whether narcolepsy played a role in your decision to leave your previous job? 

04:59 - Rebecca (Guest)
I think it did because it was getting very stressful and the stress was causing more sleep attacks. So I figured why not cut out the stress? The day that I quit my job I felt amazing that the stress was lifted off my shoulders. It was a weird feeling to know that something was slowly picking away at me. You don't know until it goes away how much it affects you. 

05:28 - Liz (Co-host)
I've had a similar experience, where I was in a job that was so stressful and the minute I left it felt like a weight had been lifted. Your head just feels clear for the first time in so long. 

05:41 - Rebecca (Guest)
Yes, I did have other emotions around it of what is my routine going to be like day to day, because I feel like that keeps my body up and moving. I did feel that I've actually been sleeping more than I usually do just because I don't have that routine. And then the guilt of what am I contributing? The guilt has been a factor as well. I feel like I've been up and down with the emotions and with the cataplexy and the narcolepsy. 

06:12 - Liz (Co-host)
Yeah, I totally get that. I also wonder if either of you have had this experience before. I was on Xyrem, which really controls my cataplexy. When I felt sad or down, I almost felt heavy in my body. It was like a kind of mild cataplexy, like in my face quite a lot. I don't know if either of you have experienced that. 

06:36 - Rebecca (Guest)
It was hard to work out if I was just really tired or if it was like a cataplexy type thing I mentioned to currently not long ago about how I just had a day where I felt like I was on the verge of cataplexy all day, but it wasn't fully there, so it was a really strange feeling yeah, it sounds quite similar, very odd, isn't it? 

06:57 - Kerly (Host)
you're heavy yeah, yeah yeah, I said to Rebecca that must have been a horrible feeling. I can't imagine feeling like I'm going to have cataplexy all day long. It's like torture. But I can relate to the heavy feeling that I feel today. To feel like you're about to have cataplexy all day long, that's just horrific sad. 

07:28 - Liz (Co-host)
They can feel heavy in their body or a kind of heaviness, but maybe it's amplified. 

07:31 - Rebecca (Guest)
For us, and the cataplexy plays a role in that. Sometimes I do research on my different diagnoses to find out not how someone with narcolepsy experiences things, because I already know that, but to find out what the normal person, how to explain to them what they actually feel as compared to me. So I actually do more research to find out what's normal so I can compare it for them. 

07:56 - Kerly (Host)
That's an interesting way of looking at it. It's clever yeah. 

08:00 - Liz (Co-host)
Can you tell us about your diagnoses and your journey to get diagnosed? I feel like I was diagnosed with everything at once. 

08:10 - Kerly (Host)
Rebecca, let us know the year as well, if you remember. 

08:15 - Rebecca (Guest)
Yes, I have a few different diagnoses going on. I have anxiety, narcolepsy and cataplexy. I think they all play off one another. If I had to choose which one to get rid of, it would be the EHD, which people are surprised about. I feel like it's less control of your mind. I don't know how to explain it. So this too, retrieval of thoughts, is very difficult no-transcript. 

09:08
People just know what to expect with that, whereas people don't like what they don't know. They don't know narcolepsy, so they just shut it out. So I try and give them something that they will probably know more about, just because many of the symptoms overlap. Anyway, I was diagnosed with everything all at once, although I've had symptoms of everything for as long as I can remember, maybe even back to the third grade I just remember things. I wasn't diagnosed until I was in college. That was about 2007 when I first went to a psychiatrist at the college and got diagnosed with ADHD. First we sorted that out, but that went nowhere because I didn't have a history of it so I couldn't get help for it. They just looked at me like, what do you want us to do? Help me through school? So I didn't get any help. That actually resulted in me dropping out of my master's program because they wouldn't help me. That's terrible. So that was it she diagnosed as stuff in narcolepsy. I felt it really come on strong in 2009. And I think a lot of that was the stress of school and everything as well. A lot of people it can be triggered from stress, whether physical, emotional, psychological, like a lot of other autoimmune disorders, which have some of them as well. So that came on 2009, but I didn't really get diagnosed with narcolepsy, because it does take a while for doctors to actually give you that diagnosis and rule out everything else. First I was told you're just a tired college student, it's just your anxiety. It's just your anxiety that I was diagnosed with sleep apnea and I had to do that for a year. In 2016, I finally got the diagnosis. That was also the time that I got diagnosed with some kind of intolerance or possible allergies towards lots of different foods as well. So there was a lot of things for me to play around with and to try and sort out. I do have doctors who I remember sliding and not listening to me and it took a long time, but I also remember those doctors who really did listen to me and actually fight for me. 

11:46
I have gone back disability in 2017. Things got so bad and I got so tired. I actually lived in an upstairs apartment and it got so bad to the point I asked them I needed to go to a downstairs apartment, so I ended up moving, even though it was around the corner. I was bleeping so much I could barely walk, bring groceries in from the car, to the point that the doctors told me I don't think there's much else you can do. Do you want a disability placard for your car? So that was rough. 

12:21
I think that was my rock bottom, and then, in 2018, I decided let's take all this information that all these doctors gave me and try it out. The biggest improvement I saw was I went through my list of allergies, modified my diet. That really helped me. I was very bloated and all that bloating went away and got rid of my sleep apnea because the inflammation went away. It does help the narcolepsy being a little bit healthier as well. So I did see that helping. 

12:52
Also, I was never a person before that thought that I had to do with disabilities, but after living it, I try and tell everyone my story and about how just try it your gut health is so closely related to your mental health, to your physical health, everything. I got diagnosed with so much stuff all at once and then I just came down to a crashing point and couldn't go anywhere else. But it was also the same time I moved from Philadelphia to North Carolina in 2018. That was when it started to come to terms that all these things were going on. I did mention earlier I had other autoimmune disorders. Earlier I had other autoimmune disorders. 

13:42
I was recently diagnosed, in January, with gluten ataxia, which a lot of people haven't heard of. I feel like if it's rare, I have it. I thought for a long time I had celiac disease, which is when you eat gluten it damages your gut. Gluten ataxia it works similar, but you eat the gluten and it attacks your cerebellum and your brain. If it goes on too long it can be permanent. Lucky enough, my doctors don't think it's caused much permanent damage, although I'm not sure if that's why all these other things have popped up, like the narcolepsy friend scent or the ADHD. I don't know if everything is just connected, but yeah, I am gluten and dairy free and I wonder for the longest time why is it when I eat gluten that I feel like I can't retrieve words, even worse than just my ADHD? I can't sit down in a chair without missing. I walk into walls. 

14:49 - Liz (Co-host)
That's so interesting. I've never heard of that before. I'm like that must have quite a big impact on your day to day. 

14:56 - Rebecca (Guest)
But as long as I stay gluten-free, then I'm okay. When I have symptoms of myoclopsy, I sometimes tell people that's my HD, because they understand that. But it's like my gluten ataxia. I tell people, oh, I have celiac, because people tend to know what that is. 

15:12 - Liz (Co-host)
Nobody reads, so I do use cop-outs sometimes we can't educate everyone all the time. It's too tiring. What does your day-to-day life look like in terms of the symptoms from all those conditions? 

15:27 - Rebecca (Guest)
The biggest thing is keeping my diet in check, which would help keep my sleep attacks in check. They don't always think about I better make sure I eat the right thing so that I can do this activity later, Whereas I have to think about it all the time. People don't understand when you're out somewhere. They just think, oh, let's go grab a bite to eat and you have to think twice about it Sometimes. I don't like being that person. 

15:57 - Kerly (Host)
So if you don't stick to your gluten free, dairy free diet, do you find that you're having more sleep attacks and you're sleeping more? And a lot of people with narcolepsy can relate if they have a meal that Liz didn't have dinner. She didn't want to be sleepy, so I had my dinner at six, then I had a nap. If I had my dinner at seven, I would have been too sleepy for the podcast at 7.30, because as soon as I finish eating, I'm ready for a nap. So with you, is it that it doesn't matter For me? I have met some people who are like oh, if they have carbs, then they feel more sleepy. For me, if I eat full stop, if I have salads, I feel sleepy. If I have pasta, I feel sleepy, I need to nap after I eat. So for you, you're saying that if you were to have the gluten or dairy, you would feel more sleepy after you eat. 

16:47 - Rebecca (Guest)
It would last a lot longer as well. Yes, although my worst trigger is a bagel, I eat a bagel, even if it's gluten and dairy free. It doesn't matter. I'm done. I need to lay down. I think it's the carb thing for the normal person. If they were to eat a Thanksgiving meal, they suddenly get sleepiness. We can feel that sleepiness if we eat the wrong meal. My wrong meal can be a bagel. 

17:17 - Liz (Co-host)
I think I'm slightly in denial about the food that I eat, because I would say I eat quite healthily. I don't eat loads of sugar or chocolate or processed foods, but I do love carbs, love pasta, I love bread and I can't imagine my life without it. So I have never really tried cutting that out to see if it makes a difference to my sleepiness just because they're my favorite foods. 

17:42 - Kerly (Host)
I've cut up bread before. It's helped me tremendously with bloating, so I have bread very rarely. If I buy bread I have to freeze it. I've never felt any difference with my sleeping, but definitely with. I can't eat lots of processed foods all the time because I'll feel heavy in my body and I think that naturally will make you want to sleep more and I feel unhealthy. My body will feel like it needs a cleanse or something. Plus, I'm vegan so I can't cut things out when people say go on ketones. If I take anything else out of my diet, I will only be eating vegetables and pulses and that will be it, because if I take out all my carbs, there'll be nothing left and hard, I feel. 

18:22 - Rebecca (Guest)
I went through a lot of testing in January. I felt like I was getting more allergies, so I went through all this testing and I found out I have GERD, which is really bad acid reflux. I ended up losing more foods than what I already have. I think the GERD is harder it seems really hard for me than just cutting out the gluten and dairy. My go-to spices are salt and pepper and garlic and you can't do any of that. You can't have chocolate. Oh my gosh, I'm mourning that one. So difficult yeah. 

18:57 - Liz (Co-host)
I feel like the more people tell you can't have things, the more you want it. 

19:02 - Rebecca (Guest)
I had a bar of chocolate maybe two days ago. I woke up the next day in so much pain, whereas before I used to think, oh, I just got gluten somewhere, but maybe it was the chocolate. At least you know your triggers, yeah, which feeling nasty and icky makes me tired as well. And finally, you said that you took medicine for your cataplexy. I don't take typical narcolepsy medication. I did try some of the typical meds for narcolepsy, but they just interacted with my body so bad it didn't work. So I actually take Luvox, an anti-anxiety medication that really helps my cataplexy. Strangely, if I forget to take it one day, I know that I've forgotten. If all of a sudden my fingers aren't working or my head is dropping or something like that, I could feel my cataplexy coming on. So that was very strange. 

20:00 - Liz (Co-host)
Wow, that's interesting. I don't think I've heard anyone take that for narcolepsy and cataplexy. 

20:05 - Rebecca (Guest)
Yeah, that wasn't what it was originally prescribed for. It was just a nice side effect. 

20:09 - Kerly (Host)
It might be similar to the reason why there must be some chemical makeup of these things. I'm not a scientist, but I was thinking. They give a lot of people antidepressant medication for cataplexy, so maybe it works similar I have read that ssri is to help with the cataplexy, so maybe that's why I think that's because they inhibit your brain going into rem. 

20:32 - Liz (Co-host)
When people take antidepressants they don't really dream at night. That's why it stops the cataplexy, because your brain doesn't go into REM. 

20:42 - Rebecca (Guest)
That makes sense. I didn't think about that. But yeah, that makes sense, because I did used to take it at night and I felt like I was having more of an issue, so I switched to taking it in the morning. Maybe that's why Maybe I unconsciously wasn't getting good sleep and felt like it wasn't working for me. 

20:58 - Liz (Co-host)
I never went into REM. Does that anti-anxiety medication help with the sleep attacks at all? 

21:04 - Rebecca (Guest)
No, for that. Actually, my Stratera helps my ADHD. Med ADHD is like having half your brain asleep anyway, so it wakes your brain up and what does it look like having a combination of adhd and narcolepsy symptoms? 

21:29 - Liz (Co-host)
what kind of symptoms do you experience day to day, and do you always know when it's narcolepsy and when it's adhd, or is it quite blurry Sometimes, you see? 

21:37 - Rebecca (Guest)
someone post something like does anyone ever experience this with their narcolepsy or does anyone experience this with their ADHD? And you think, oh yeah, I do. I didn't know that's what that was. Things do blur a lot, so, like the brain fog, I don't know if I'm just zoning out with my ADHD and not getting the dopamine fix to keep me going, or is my brain falling asleep? I don't know. 

22:03
Although, when I do discuss it with people not everyone with ADHD gets the physical manifestation of being about to pass out and that dream sequence. So if you watch old movies or something, that things I don't know how to explain it it's almost as if you're about to pass out. You get hyper-focused on something. The hyper-focus is an ADHD trait, but then enough stimulant to keep my brain awake and I will start falling asleep. It's very weird. I explain it for the average person who doesn't have any of this. I explain it for the average person who doesn't have any of this. I explain it like being blackout drunk. You're still functioning and you still look like you're there and you're doing everything you're supposed to, but when you come to, you're not going to remember. Sometimes, if I get too tired, I'll tell people let's not have this conversation right now, because I will not remember what we've talked about. 

23:02 - Kerly (Host)
I feel like we should all use this in the future. No, it's actually very good, because you have these conversations and later on, when the person is relaying it back to you and you don't remember, I will say this conversation didn't happen. And then they're trying to argue with me that the conversation happened and I swear it didn't happen. If then they were trying to argue with me that the conversation happened and I swear it didn't happen, if I don't remember it happening, it did not happen, unless you send me a recording of the conversation, I am correct. Never had this conversation. I have this argument with my sister's prime because she's yes, I told you something. No, you didn't tell me, and she's like no. 

23:34 - Rebecca (Guest)
One of the symptoms that you can experience with narcolepsy is an amnesia where I've had major conversations with people where I've completely forgot that we had this conversation because my brain fell asleep at that moment. You might have to explain it to me later. 

23:51 - Liz (Co-host)
One thing I absolutely hate is when it's so similar. It's like when you can feel your brain turning off, but you're having to still function. Maybe you're in a social situation and your brain is slowly turning off. For me, things get quite hazy when that's happening, because I start really intensely looking at people trying to stay present. Their hand gestures In those moments I get filled with anxiety. Because I'm trying to stay present and their hand gestures In those moments I get filled with anxiety. Because I'm trying to be present, my brain is switching off. I can't control this. Right now I'm trying to maybe even talk to new people and that's quite stressful because you're like you want to be vibrant and show your personality, but you can't because your brain is dialing down People that I know. 

24:38 - Rebecca (Guest)
I'll tell them. Give me a moment for my brain to wake back up. But it's hard when you don't always want everyone in every situation to know that you've got all this stuff going on. It creates anxiety. Yesterday, going to this interview, I made sure that I had a lot of sleep and I ate well. I was going to pay attention because I know some people don't know. With monarch lessee, They've commented before you look like sometimes you're just looking right through me and you're not really looking at me. 

25:11 - Kerly (Host)
I know that there are a few people out there that are actually super observant and they're catching on. I remember I went to the vet with DJ and the vet was talking to her. I was on the out, I could feel it humming, obviously, she told me very important information. Then I finished, I came back and she asked me a question. I couldn't answer the question because I was asleep when she was asking it to me, and so I said to her oh, I must have fell asleep and she goes no, you weren't. You were looking at me. I don't remember what you said, because I wasn't here for those few minutes or seconds. I just wasn't here. She just looked at me. She said no, you were awake. I was looking at you and you were looking at me. 

25:47 - Liz (Co-host)
It is amazing how our brain can switch off and go into that automatic behavior where we're still nodding along. 

25:54 - Rebecca (Guest)
So I still drive, I know not everyone can drive, but I'll have moments where I just know where I'm going. It's second nature, which means it becomes automatic and if my brain happens to switch off at that time sometimes I will forget oh my gosh, was that a green light or was that red? If it gets really bad, I pull over. I do have those moments where I guess everyone's experience whether you have narcolepsy or not, just being really tired, I guess everyone's experience, whether you have narcolepsy or not, just being really tired. 

26:23 - Liz (Co-host)
Those situations where normal people go into an automatic behavior, like with driving. 

26:34 - Rebecca (Guest)
Driving is one of my big triggers where my brain falling asleep. I remember being on a drive somewhere and I was with my brother. He pulled over, saw that I was zoning out, he got me a bag of shell peanuts and gave them to me so that I can hyper-focus the skulls, and that gets me away. 

26:50 - Kerly (Host)
It's like here you go, here's your peanuts. You did it in a very loving way, without being you got to make sure you split the shell. 

26:57 - Rebecca (Guest)
I guess the hyper-focus somebody helps, because I was focused on them right. 

27:01 - Kerly (Host)
That's a good tip. Maybe if at the very beginning, if it was caught early, then the activity could help. Other times it's so overwhelming it comes and it takes over. It didn't matter what was in your hand, it would fall to the ground. I would catch it at the earlier stage to get my brain into the activity and maybe it would push through yes. You have to catch it at the right time. 

27:23 - Liz (Co-host)
And just be like get up, move around, and other times it's like nope, too late. 

27:27 - Rebecca (Guest)
I tell people who can't understand it. I tell them it's like a sneeze coming on where you can hold it back for a little bit, but you have to give into it and it's going to happen. And it's very sudden, just like a sneeze that's a great analogy. 

27:47 - Kerly (Host)
That is true, because you can't stop a sneeze. 

27:49 - Liz (Co-host)
You can feel it, and then it takes over and I think that really helps to dispel the myth about narcolepsy, where people do just drop to the floor asleep because you do feel it coming on most of the time and obviously the neurotypical or able-bodied world gets confused between having a sleep attack, which comes on within a few minutes, and cataplexy, which is more instant and you might drop to the ground but you're still conscious. 

28:19 - Rebecca (Guest)
That's my cataplexy, the sleep attack. I can feel it, slowly it's coming. 

28:24 - Kerly (Host)
That's probably the one good thing about this sleep attack. Because you feel it coming beforehand, you can get yourself into a position of safety most of the time, depending where you are. You can get to a railing or wall to help yourself because you can feel it coming in advance. What I have found is that some people are really good at seeing it in your body. Apparently it was showing on my face, but because you can't see your own face, you don't know this. So they would say I think you're tired, you should have a nap. I'd be like I don't feel anything but the feeling hadn't come yet. But sometimes, like maybe 10, 15 minutes before the feeling comes, someone who's very observant can see it If you listen to them. You go and rest before the feeling completely takes over and you have a sudden attack. 

29:09 - Rebecca (Guest)
My boyfriend can see it in me and sometimes before I can see it in myself. He's very observant. The same with my dog. Like I was telling you, he's not a service dog but he can tell when I have to lay down. He'll look at me, walk to the bedroom, jump up on the bed and look at me like wow, that's amazing, he's so intelligent. Yeah. 

29:28 - Liz (Co-host)
So he knows. This is another thing that gives me anxiety sometimes, when I'm feeling tired but not super sleepy. Maybe I'm in a work situation where my energy levels have dropped, or I'm in a social situation and I get anxiety, thinking that my eyes look sleepy and that people can tell. I hate that feeling because it's so hard to know. Unless you look in a mirror, you can feel your eyes feeling heavy and you're like oh no, can people see that I'm getting really tired? 

29:57 - Rebecca (Guest)
Yeah, I wish people knew how much anxiety we feel just going out to a get-together. Do I look tired? Are people going to ask me if I need a nap. People going to think I'm not interested in being here, which I've had people tell me before actually knowing me. Like oh, I thought you just didn't want to be here. Like no, I'm concentrating on staying awake right now. 

30:22 - Liz (Co-host)
I've had it before where I've been in social situations for too long and my brain has just completely burnt out. All I can do is sit there and stare into space because I'm just not computing anymore. I'm a complete zombie by that point, and that is so uncomfortable when you're around people that you don't know and have to force it. 

30:51 - Rebecca (Guest)
I always. People know that we can't just get up and go somewhere a lot of the time. Give me notice, maybe like a couple hours before the day before, so I know that I can stick a couple naps in there, make sure that I've gathered all my gluten and dairy-free snacks and maybe take my ADHD med a little different timing according to when the outing is. Some people in my last minute asked me to go somewhere. That happened recently. I thought there is no way I am waking up tomorrow morning and going on a hike. We can always jump into things and I wish people understood that and didn't just think we're anti-social and don't want to go. They did want to go. I just knew that if I did I would have had a horrible time. They went a horrible time waiting for me and accommodating me, and that's never a good feeling. 

31:39 - Kerly (Host)
that feeling of people waiting for you or having to over-accommodate for you. It never makes you feel good. It's always better to just not go. 

31:48 - Liz (Co-host)
This is what I find hard with group outing sometimes, because I think people with narcolepsy have to be hyper-organised. You have to always think ahead. When will I take my medication so it's most effective? When will I eat so that I don't have too many dips in blood sugar which could cause a sleep attack? What will I eat, Because that could also cause a sleep attack? Where will I nap? How late will I stay out? How will I get home? It's always so much to think about. I find it quite hard going out in groups because if my friends want to go to the pub but there's no set plan for food, that's sometimes an issue for me, because I really have to eat regularly, Otherwise I dip quite a lot. It always feels like you're being slightly awkward because you have to stick to a regime that works for you and you can't be as flexible as the average person. 

32:40 - Rebecca (Guest)
There are points where my sugar just drops and it's almost like being diabetic, where you get the shakes and you're just like I need food now. It's my fake diabetes attack. 

32:53 - Liz (Co-host)
I just I don't know. Yeah, we can add that one to the list of condition. Yeah, I definitely experienced that. I put it down to my medication, xyrem, and the stimulant that I take, which used to be modafinil, now it's pitolicin, and they can all impact appetite. I find that I just have to eat every two hours or so because I get so hungry and it's actually painful If I don't eat. My stomach is in pain, it's all I can think about, and I can't function at all. My stomach is in pain, it's all I can think about, and I can't function at all. I always have snack supplies on me. It's quite annoying because I always have to think ahead. I'm always having to prepare for that if I go out. 

33:32 - Kerly (Host)
More the sugar cravings than eating If I'm not at college and I'm just at home, like today. I woke up, I felt fine, I took my medication, I didn't eat until 11. I had two vegan sausages and a slice of bread and then I didn't have dinner until six o'clock. But then, on another thing, I could be out at college and, for whatever reason, I need to have that Like every two hours. I feel like I need something like some type of sugar which is not good because I have diabetes type two. Now the summer glutide that I've been on it's really helped cut down the sugar cravings, which has been so lovely. That really helped a lot, because my sugar cravings with narcolepsy is really bad. I tend not to keep anything in the house no chocolate, no sweets, because they would not last more than a day. They would just go, because in the middle of the night I would sleepwalk and eat them. 

34:24 - Rebecca (Guest)
That's the quickest source of energy, and if you're tired all the time, it's looking for a quick source of energy to get you going again. When I'm really tired on those days, that's when I crave sugar. 

34:36 - Kerly (Host)
I had a friend that suggested if you had dinner at six, then around nine o'clock you should have a dessert. Then maybe your body will be satisfied with that and in the middle of the night it's not going to be like, oh my God, I need sugar. I did try that for a while and it did lessen my eating at night. It did help. I haven't had an episode for a while. It's been great being on the diabetes medication. I've said that's really cut my sugar completely. 

35:07 - Liz (Co-host)
So I don't have that craving very often now, which is nice. I've had to really cut down on sugar because I had to have loads of filling. Apparently, modafinil, which I was on for 10 years, can weaken your teeth. 

35:20 - Kerly (Host)
You were on it from I was 18 till I was 30. I have Roxin. What's that when you grind your teeth? 

35:27 - Liz (Co-host)
No, I've done it from I was 18 till. 

35:29 - Kerly (Host)
I was 30. I have Broxin. What's that when you grind your teeth? Ah yeah, I have Bladobroxin and Nybroxin. My teeth have been damaged by grinding them to nothing, even if I'm not having sugar, I'm not having fizzy drinks, I'm not having sweets, just the grinding alone. 

35:45 - Liz (Co-host)
Yeah. 

35:45 - Kerly (Host)
I'm the same same, which is an annoying side effect from narcolepsy medication. Yeah, that's awful. I said to my dentist we have to do something about the broxin because at this rate I have no teeth left together. Carry, we can't just amending the teeths all the time. We've got to figure this out, do you think? 

35:57 - Liz (Co-host)
that's related to narcolepsy, or is that just another sleep condition? 

36:02 - Kerly (Host)
no, it's another sleep condition. The grinding in your sleep massages up your teeth over time. They usually give you mouthguards to help, but the mouthguard is not to stop you grinding, which I find interesting. Figure out how to stop the problem, not mask it. Be the brilliant doctor out with the cure, not the band-aid. So band-aid for that is a mouth guard that's just protecting the teeth so the teeth don't get grinded to the hole, but it doesn't stop the grinding happening. That's okay for someone who's grinding at night, but if you're grinding at day and night, that doesn't help Study that ended up not going anywhere pretty far forward. 

36:47 - Rebecca (Guest)
I can't remember the reason why it failed, but they've already come up with a medication to help insomnia. So they were like why can't we just make it to the opposite and keep people awake instead of putting them to sleep? 

36:59 - Kerly (Host)
I don't know about this insomnia medication. How can no doctors have offered this to me? 

37:03 - Rebecca (Guest)
So I wish I had the study. They were trying a medication and they were getting really close, but I don't know if there was too many major side effects or something. 

37:11 - Liz (Co-host)
If you find the study, can you send it to us and we can link it in the episode I'll look for it. 

37:16 - Rebecca (Guest)
I may have posted it in the Facebook group. I'll look for it Great. 

37:21 - Liz (Co-host)
It gives me hope to think one day it might be cured. Carolee, did you have any other questions? I think so. 

37:28 - Kerly (Host)
Tell people about your Facebook group about food. 

37:32 - Rebecca (Guest)
Yeah, it goes along with my diet Going. Gluten and dairy free really helped. I lost 10 pounds a month for a year. The first six months I lost 60 pounds. That's why I got rid of the sleep apnea and everything, Because gluten and dairy are such inflammatory foods. I like to research autoimmune conditions, anti-inflammatory diets. I like to research, share information with people. I have a Facebook group, Gluten and Dairy Free Lifestyle. It has quite a few members. We share recipes, how it's difficult going out with people and just events. I could either find groups just for gluten-free or just for dairy-free, but not for both. I like to share. Came up with this really interesting meal today. Or hey guys, did you see that they have gluten-free oreos? 

38:26 - Liz (Co-host)
now, is that specific for people with narcolepsy or anyone who follows that diet? Anyone? 

38:32 - Rebecca (Guest)
that follows the diet. Do you have questions for when people come in like why are you joining? It's not always people who are like I'm allergic to gluten and dairy. Sometimes it's people like my doctor tells me to try this diet because I have Hashimoto's or different autoimmune disorders. I have narcolepsy as well. One of the popular diets for narcolepsy is keto or high protein. I do better on. I tend to look for vegan foods because I'm dairy free. Hey guys, I went to this restaurant today and I asked for dairy free toppings on my sandwich and they never gave me mayonnaise because they think egg is dairy kind of thing. Is anything that comes from a cow? 

39:13 - Kerly (Host)
What's interesting about that particular order? Because a vegan will not throw it because of the egg. But if you're not vegan and you're just dairy and gluten, you can have the egg, you can have the mayonnaise which I get because the old food pyramid, if you picture the food pyramid in the dairy there were eggs that makes sense. Is there anything else you'd like people to know? 

39:37 - Rebecca (Guest)
I think sometimes I would just like people to realize that narcolepsy can be a spectrum. It doesn't look the same in everyone and we don't always all have the Hollywood version of it. It does get put into movies like Shallow Hal. Sometimes people just see the clips and they don't understand the mental that. They don't understand the mental issues that can go along with it and the social aspects. So I just need to put what they think they know aside and learn from that person what it's like for them. 

40:21 - Liz (Co-host)
You could get rid of narcolepsy and cataplexy by pressing a big red button and never have experienced it. Would you do it, and why? 

40:32 - Rebecca (Guest)
Advocating for my health, improve my life in so many different areas that I don't think I would have had that push if I never got the diagnosis. I don't think I would have had that push if I never got a diagnosis. I would have never hit rock bottom, moved to North Carolina and had my life be what it is now. I would have never gotten the courage to kick out those toxic people because they were making my cataplexy worse. If I had to choose one of my disorders, it would be the ADHD. I think I would like to reverse that, Even though your brain just thinks differently. No, reverse that. I would take narcolepsy over that. 

41:16 - Liz (Co-host)
Thank you so much for sharing your story, rebecca. We wish you best. The phrase I'm trying to make cool, which we say at the end of this episode, is happy napping everyone. 

41:27 - Kerly (Host)
Happy napping everyone. Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. For advice, narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life CIC, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website wwwnapsforlifecom. If you or someone you know has a sleep disorder and would like to share your story on narcolepsy navigators, please email us at narcolepsy navigators at gmailcom. You can also support us by donating at the website. Happy napping everyone.