S3E4 Taya’s Tale: How IH Stole My Energy— But Not My Life

In this episode of Narcolepsy Navigators, we meet the radiant and resilient Taya Austin, a federal employee, nonprofit leader, and auntie-turned-parent, living with Idiopathic Hypersomnia (IH).

After years of being dismissed, misdiagnosed, and told to “just sleep better,” Taya finally received her diagnosis two years ago. From childhood naps and overwhelming exhaustion in college, to hiding her symptoms while earning her master's and serving her community, her story is one of silent suffering turned self-advocacy.

Taya talks candidly about:

• [06:12] How doctors ignored her fatigue for years
• [13:17] The moment she refused to be dismissed again
• [18:03] Learning boundaries and unlearning hustle culture
• [21:02] How IH impacts dating, friendships, and self-worth
• [30:01] Her experience with medication, including Xywav
• [34:19] Why she'd hit the red button to erase IH

💡 Taya’s voice is powerful, full of laughter and light—and rooted in the truth that rest isn’t a luxury, it’s survival.

🎧 Listen now for a deeply relatable episode about learning to slow down, speak up, and take your life back—nap by nap.

Chapters

• 6:12 How doctors ignored her fatigue for years
• 13:17 The moment she refused to be dismissed again
• 18:03 Learning boundaries and unlearning hustle culture
• 21:02 How IH impacts dating, friendships, and self-worth
• 30:01 Her experience with medication, including Xywav
• 34:19 Why she'd hit the red button to erase IH

Transcript

00:13 - Kerly (Host)

Hello, welcome. You're listening to Season 3 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. I'm Kerly Boger, the founder of Naps for Life CIC, and welcome to our stories. Hi everyone. Welcome to Narcolepsy Navigators. I am Kerly, your host. 

00:53 - Fred (Co-host)

And I am your co-host, Fred. 

00:56 - Kerly (Host)

And today we have Taya. She has IH and she is from Virginia in the USA. 

01:03 - Taya (Guest)

Hi Taya how are you? 

01:06 - Kerly (Host)

I am well, so how was your weekend? 

01:12 - Taya (Guest)

My weekend was pretty good, one of the few weekends where I could just relax a bit. Didn't have anything to do for anyone really, so it was relaxing. 

01:23 - Kerly (Host)

That's good, and Fred how was your weekend? 

01:35 - Fred (Co-host)

My weekend was actually quite exciting. There's a big project that I've been working up to getting into rebuilding an RV engine, so I finally got to start on that project. And I also got a lead on possibly a new job as a dog trainer, so I'm excited to put in that application and I also got a lead on possibly a new job as a dog trainer, so I'm excited to put in that application and have that recommendation to maybe get started in that career. 

01:53 - Kerly (Host)

Wow, that's nice Dog training. That sounds really fun yeah. 

01:57 - Fred (Co-host)

And we know Fred loves dogs. 

01:59 - Taya (Guest)

So what do we do? I love animals too. That's one of those jobs. You don't work a day. Yeah, they're all just so sweet. 

02:11 - Kerly (Host)

How about you, Carly? It was restful. The week went so quick. And then mom came back from Kenya that week. No wrong, that was the week before. So I see, gosh, the week went super fast. And then I was supposed to go to church on Saturday, but then I was very tired so I did church from home. I watched the live stream. That was good. I also just rested on Sunday. I am off for half-time. No college for two weeks. It's wonderful.

02:42 - Fred (Co-host)

Oh, that's exciting. 

02:43 - Kerly (Host)

Yes, no one to wake me. My sister doesn't have to call me to wake me at 7.30 in the morning. I wake up every time I want. 

02:52 - Taya (Guest)

So lovely, that's nice. Wake up when your body says it's time. Yes, exactly. 

02:59 - Fred (Co-host)

Do you find that when you're off like that, do you find that you sleep more than you normally would? 

03:04 - Kerly (Host)

Yes. 

03:07 - Fred (Co-host)

Does it help you? 

03:08 - Kerly (Host)

It's as if the body knows that you don't have anywhere to go, and so it's just let's catch up on all the sleep that I've missed. Yeah. 

03:20 - Fred (Co-host)

I find that when I let myself sleep as much as I want, it makes me more sleepy, Because I'm diagnosed with narcolepsy but I'm pretty sure I actually have IH instead. And with the IH and the long sleep and everything, it's like the more I sleep, the more I want to sleep and the more tired I am. 

03:39 - Taya (Guest)

No, yeah, it definitely helped me definitely helped me Never feel rested, but it's something about the extended sleep that just feels good to my body, like over this weekend when I say I was resting I was getting a lot of sleep in. But it recharges me but I still feel crappy. I don't know. 

04:01 - Fred (Co-host)

I think it's good for your mental health to not have something saying, hey, you have to get up now, you have to do this just to be able to lay in bed. You can be tired and not necessarily sleeping, and just laying there and enjoying being comfy and enjoy knowing that you don't have to do anything, right now you don't have to fight it, you can just let it happen. 

04:21 - Taya (Guest)

Yes, just laying doze on and off, no responsibilities, but enjoying, just resting yeah, I love those days. 

04:34 - Kerly (Host)

So, taya, can you introduce yourself? I'd like you to tell everybody your name, what country or state that you're residing in, your your age, if you feel comfortable, and what year you were diagnosed. 

04:47 - Taya (Guest)

My name is Taya Austin. I live in Virginia in the United States. I am about 20 minutes outside of Washington DC. I am 43 years old and I was diagnosed two years ago. Years old and I was diagnosed two years ago. What a fresh diagnosis. Pretty fresh, although, like most, I've had the symptoms as far back as I can remember, but just got diagnosed two years ago. 

05:22 - Kerly (Host)

So when you got the diagnosis, did you feel relieved or how did you feel? 

05:30 - Taya (Guest)

you know, everybody has the solution to your problem sleep less, sleep more, take vitamins, exercise, eat more vegetables. So I felt relieved I'm excited that it had a name I know what it is hear that word and to know that what I felt was finally true Somebody finally confirmed that something wasn't right. 

06:12 - Fred (Co-host)

So what kind of doctor did you go to? Was it a sleep specialist or a pulmonologist, or a neurologist? 

06:18 - Taya (Guest)

I've paid my primary care physicians over the years and they have been some of the people that told me eat more vegetables, try the exercise, lose weight, until finally they referred me to a sleep doctor, did the sleep apnea test and it was very mild. So then they referred me to a pulmonologist. It was like a phone call, first appointment, this, this phone call, and I barely got out three lines of my symptoms and she's oh, you probably have a age, or maybe narcolepsy. 

06:53

But it's like a age and it was like a weight that just lifted off of me, like it was that easy for you to know I should have talked to you years ago. 

07:08 - Fred (Co-host)

Why did they go back and tell me you exist years ago? Yeah, the first sleep doctor I went to didn't mention IH at all. He didn't know that it was a disease. I guess he only mentioned narcolepsy, and it took multiple other doctors to ever even mention IH. So that's amazing that in the first three sentences that they were just like oh, I think you have IH and this sounds different than narcolepsy even. 

07:31 - Taya (Guest)

Yeah, it took a while to get to her, but I love her and thank her so much to this day. She just jumped on it immediately and she's really awesome. 

07:40 - Kerly (Host)

That's good. So now let's go back. What was your first symptoms that you can remember having, and when was it? How old were you? 

08:04 - Taya (Guest)

still be asleep. I would just sleep well on to the afternoon when everybody would be up and going on with their day and I'm still exhausted, missing all the fun. I just thought I'd sleep longer. It started getting progressively more noticeable over time. 

08:16

By the time I was in high school I was taking a nap every day, called it after school nap. It was something my mom did, it was something I did, but she was working another job, so I understood why she took a nap, but I got into doing it with her. Then I started working and it was the after work nap that were mandatory. It was my halftime to reset and do the second part of my day, and the symptoms just progressively got more from there. I was always angry when someone would try to wake me up my mother. To this day she says there you go, staring in the space what I know now to be sleep inertia. I would just sit on the edge of the bed for 45 minutes an hour just staring, mad that someone woke me up, but just trying to get myself awoke, enough to the point to try to start my day Now. 

09:18 - Kerly (Host)

I know that to be sleep inertia. I like that. You named them the after work nap. What was the job that you were doing? And did you think at the time well, you know, this sleepy thing that I've been having since I was younger, oh, it's getting a bit worse, this is annoying. Or were you just thinking, oh, it must be from the work that I'm doing? My job's really like demanding, so I really need to have this after work nap. 

09:41 - Taya (Guest)

I've always had office jobs, so brain power not not much physical power. I live in Washington DC so my commute is always an hour or so, but I just thought naps were good. At that point I was just tired. This is like when we 20s or so I knew that I needed a, but it wasn't to the point where I was like something's wrong. So it was just a long day at work. You go home, take a nap and then you do whatever you're going to do for the rest of your evening. It was just I love naps. It wasn't yet that something wasn't right, right. 

10:21 - Kerly (Host)

It means almost like if you were living in Spain, no one would have even realized, because it's almost like you went to have your siesta. 

10:30 - Taya (Guest)

That was absolutely normal to me, but yeah, it hadn't became an issue. Yeah, it was just saying loves her naps. Um, maybe, like in my 30s, is when I was like, hold up, I'm going to sleep, and waking up just as tired as I was when I went to sleep. Something ain't right. The long sleep times continued, the sleep inertia continued, but the extreme exhaustion during the day intensified to where that's when I would start getting like drowsy at night or I would miss out on things to sleep. It just got really intense in my 30s intense in my 30s. 

11:26 - Fred (Co-host)

Yeah, that missing out on things to have to sleep that really takes an emotional toll and can start to really turn you into depression at that point too, yeah, that I felt left out. 

11:34 - Taya (Guest)

I felt like I didn't belong, like why am I sleeping in the middle of the day? Belong, like why am I sleeping in the middle of the day? I'm going back a little bit. It was the start of a horrible college experience because my freshman year I was in the dorm. I was excited to be away from home and meet new friends and I would be asleep, and my roommate, who I loved, and our other group of friends. They would come in the room, make noise and wake me up from my sleep and I'll never forget it. One of them and I was like that's just so rude. You come in here making all this noise when somebody's asleep. And one of them said it's three o'clock in the afternoon and you're always asleep. But again, it didn't click. I just was a sleepy person. So yeah, I think, looking back, there were definitely times when I missed out on things to sleep. 

12:29 - Kerly (Host)

So when you were in college, did you find the sleep was affecting you academically, or it was just like in the afternoon you took a nap and then other people were noticing that came to the dorms. But when you were in lectures and stuff like that. 

12:46 - Taya (Guest)

It wasn't affecting you then. No, I don't remember my first year I had that little run-in with my roommates seeing that I was sleeping a lot. But then I also had a traumatic experience with a boyfriend of mine. I was just battling depression and traumatic relationship stuff. So yeah, I don't remember my sleep much outside of that freshman year experience. 

13:10 - Fred (Co-host)

What was the catalyst that finally got you to seek help from a doctor? 

13:17 - Taya (Guest)

My physicals. I would always bring it up and say I'm really tired, I'm like more tired than I should be, and they would test my blood and my urine and you're fine, I don't know what it could be. And then maybe the next time I brought it up it was let's check your hormones and you're fine, it's nothing. Maybe it's depression. But every time I would bring it up and I would be tested and I would be dismissed. I wouldn't pursue it Even though I knew something wasn't right. I just figured it must be me. They're the doctors. They said nothing's wrong, they tested everything. It must be me. 

13:58

But then the next couple years or a year or two, I would be at an appointment not say it again I'm really tired, like I shouldn't be this tired. We'll do the same thing. Go through the test, everything's fine, you're not premenopausal or whatever. Thyroid's fine, you're fine. Just sleep, sleep well, just put your sleep hygiene and lose weight and you'll be fine. So I had been trying to get help over the years but I never pursued it because I just assumed everything must have been fine unless it was me. Finally, one year I just bought it up at the right time and that doctor referred me to the pulmonologist and I didn't let it go after the sleep apnea test was mild. 

14:44

I said that's not it, it's got to be something else. But like, I crossed to the first step. So I was like, okay, I'm at the first step, I'm at the sleep apnea. No, you're not going to dismiss me this time. So that's when I was able to know it was another alternative. I ain't never heard of hypersomnia, so it never even crossed my mind. Sleeping too much, that was a thing. So yeah, I stuck at it and got the diagnosis. 

15:12 - Fred (Co-host)

Yeah, that's what it takes here. Is you have to just keep badgering the doctors over and over again if you know something's wrong, and they're just dismissing you? 

15:27 - Taya (Guest)

Yes, that's why I'm so big on awareness and telling people about it and normalizing a lot of things that are surrounded by stigma, because if you don't know it exists, you won't know that this might be what you're battling or dealing with or facing, and that there is a solution, there's a way out. I tell people about it, raise awareness when I can, because other people, especially in my community sleep is a big thing that I'm learning more and more Should be something that is a privilege everyone gets to enjoy, but unfortunately that is not. That's not always the case. There's some inequities towards sleep, so I try to speak about it when I can. If I'm sleeping too much was a thing 10 years ago then maybe I can say to the doctor hey, you think it might be, but I just don't know yeah, and Tara, you always kept good grades my grades were mediocre. 

16:20 - Kerly (Host)

But it was nothing to cause tension, because sometimes I find when sleep is affecting them, they can go from having good grades to their grades dropping quite dramatically and that can help to be an alert. And you drive, do you drive? I do drive. And that can be an issue for you. Do you drive? 

16:38 - Taya (Guest)

I do drive, and that can be an issue for you, I can get a little drowsy at red lights or in real bumper-to-bumper traffic, but I've never fell asleep driving. It's never been to where I felt like it was dangerous for me to drive. Yeah, I'm going to take a little over once or twice. 

16:57

Yeah, my grades were mediocre nothing over once or twice. Yeah, my grades were mediocre nothing. And that's another thing that I struggle with on various fronts, because most people would look at my life and think I'm like some overachiever I've accomplished a lot of things, I do a lot of things, and somehow I was able to do all of those things even while battling this. So I think that made it easier, too, for people to dismiss that it was something serious because she couldn't possibly get a master's degree. If she's that, sleepy. 

17:31 - Fred (Co-host)

I think in your bio it mentioned how it seemed like your symptoms got worse after you were diagnosed. I think that was what I read, and it's like up until you know what it is, you just think everybody's this sleepy, I have to push through it and do all this anyway. So then you achieve a lot and then when you find out, oh, I've been fighting this my whole life, Maybe it's time for me to really feel it and feel like this is hard. It's not this hard for everybody. 

18:03 - Taya (Guest)

Yeah it's not this hard for everybody, and because of that I have learned boundaries. I have learned that saying yes just because I can or I think I can, doesn't mean it's healthy for me to do. I don't have to do all the things and all the places and do everything for everybody, because in that I'm not doing enough for me. So having this condition and being diagnosed has really caused me to just treat myself better. 

18:43

So tell us about the other things that you've been up to. I'm a federal government employee for the United States. You hear what's going on here, so there's that. That in itself has been a huge dream mentally, which drains me physically. So when I am not battling that, I am a executive director of a nonprofit. I love serving the community. We give out food to people, wash clothes, sneakers, going back to school, so I love finding creative ways to serve people. I recently got custody of my nephew, so now I am a basketball aunt and I'm raising. He's just turned 16 years old, so that's been fun. Taking care of my mom, got my master's degree. I own some properties, so I'm not living life, just trying to live life as best as I can, not to let anything hold me back. 

19:38 - Kerly (Host)

That's right, no you've accomplished a lot. Well done, you've been doing so well. 

19:45 - Taya (Guest)

That is a lot, and that is why I'm learning my boundaries, because now it's like I realized that, yeah, you do a lot, but this is hard. It's hard for a normal person. Give yourself some time to rest, rest, rest. You need it. I need it Not just because of my age, just because I do a lot and I don't have to do all the things. 

20:12 - Fred (Co-host)

I think that's been a hindrance for a lot of people that we've heard on the podcast saying that their diagnosis came much later, just because they thought I'm just busy, I'm just doing all these hard things and I'm doing so much. Of course I'm tired, but you shouldn't be that tired. 

20:31 - Taya (Guest)

Just as sleepy as you were when you went to sleep. That was when I knew this is a normal time of year. I shouldn't wake up sleepy. I knew this isn't normal time of year. I shouldn't wake up sleepy. Now I know the degree to which I was pushing my body and my mind to work through the brain fall or work through the extreme exhaustion. It just wasn't being very kind to myself. 

20:53 - Kerly (Host)

What is the symptom of IH that you feel is the worst one affects you the most? 

21:02 - Taya (Guest)

Feeling excessive daytime sleepiness Well, excessive round-the-clock sleepiness here. Recently I found it to be a big deterrent to dating in my social life. I'm an introvert, so I already enjoy being at my house, being alone. So dating, being social, going out, hanging out is not at the top of my list. Where I'm super duper, extremely tired and I'm an introvert and would probably rather be home anyway. Like you have to be a really awesome guy for me to date you. Compared to my house and my bed, usually my house and my bed has been winning. I need to find somebody better than my house and my bed, but I haven't yet. 

21:52 - Fred (Co-host)

We should make a sleep disorder dating group, so that all you do is hang out and nap together. 

21:57 - Taya (Guest)

I know, who won't want Netflix and chill? I really want a Netflix and chill date. Just come over in comfy clothes and watch. 

22:05 - Kerly (Host)

TV Nap dates Y'all you heard it first on an Euclid C Navigator. Watch this space for nap dates. 

22:11 - Taya (Guest)

Just come over in comfy clothes and watch TV and being in meetings and having to pretend, not pretend, but just try really hard to be interested and not young and my eyes get heavy in front of people and being in a bunch of leadership roles, I used to feel like I always had to be one or be that leader. But now I'm the leader with IH and people know that about me. I get really sleepy sometimes and I might have to go away for five minutes and take a nap or my reasonable accommodation. I get to shut my door for a few minutes and close my eyes at work. I get to shut my door for a few minutes and close my eyes at work. So I'm just a leader with IH and I just try to make it normal to people around me so that I can do what I need for myself and still handle my responsibilities. 

23:00 - Fred (Co-host)

Did you have any trouble getting that accommodation? 

23:04 - Taya (Guest)

I did not, but that is because I work in the unit that does accommodation. I work in civil rights, in equal employment opportunity, so I am not remiss. That it was much easier for me than it probably was is for a lot of people. 

23:18 - Fred (Co-host)

Yeah, there's someone in the support group we've been chatting with who needs accommodations, whose work has refused three times so far to give them their accommodations. 

23:30 - Taya (Guest)

Yeah, I know a lot of people fight for that. I don't know if they're in the US or not or where they work, but now it's this huge push for people to go into the workplace and, unfairly, people who are viewing some people's need for accommodation as a ploy and not have to go into the workplace. I say it's not much, it's not anything you can do to make your employer follow the law. There's no perfect words. Either they do or they don't. But at least in the United States you have recourse for that, filing a complaint with equal or formal opportunity. It's long and arduous and it doesn't help immediately, but it will hold employers responsible in most cases if your rights have been violated. 

24:10 - Fred (Co-host)

Okay, that's good advice, maybe we can tell that person to file a claim. 

24:14 - Kerly (Host)

Sure, I'd love to fight with them. Oh great, that's even better. We'll connect you. How did your friends and your family members take the news? 

24:26 - Taya (Guest)

My mother is actually a registered nurse, and she was also one of the persons. Her specialty was psychiatry, so she had never heard of idiopathic hypersomnia either, but she had to eat crow a little bit because she claims to be the nurse that has all the answers, all the remedies oh, I don't know what that is. 

24:47

That's what that is. And this one stumped her by her own child. But no, she's been very understanding my family and my friends. I normalize it. I don't talk about it any differently as somebody with back pain or headache. My friends, they know, If you call me around, oh, that's Taya's nap time. Or if I don't answer the phone, that's because I'm asleep. Oh, I knew it was your nap time, so I just said I'll call you back later. 

25:16

Or alright, I gotta get off the phone. I got time for me to go to sleep. It's my bedtime. If nothing to my friends, now we joke about it. 

25:28 - Kerly (Host)

I mean I Now we joke about it and it's funny. 

25:32 - Taya (Guest)

I'm sleeping, beauty we call it, but just make it normal, the guys. 

25:33 - Kerly (Host)

I try to date aren't as accepting. 

25:35 - Taya (Guest)

Yes 100%. 

25:35 - Fred (Co-host)

Yeah, if someone's not going to be accepting about it, then they shouldn't be in your life anyway. They should be able to understand. Yeah, nope, that's how I take it. They just don't get it. 

25:45 - Kerly (Host)

Or they say oh nope, that's how I take it. They just don't get it. Or they say, oh, that's nothing. When you mention it at first, they're like, oh, it's nothing, to the point where they don't even want to ask questions about it, even a red flag, but you've never heard of the disease before, but it's already nothing. 

26:01

To you I usually say something like oh, have you ever dated someone with a disability before? No, have you ever dated someone with a disability before? No, have you ever dated someone with a hidden disability before? No, and they're going okay, but you look normal, you don't look like anything's wrong with you. I'm like okay. Then I say okay, do you know what narcolepsy is? And then they'll be like no, and then I'll explain it to them, and then I'm waiting for questions to ask and they go. 

26:28

oh, that's fine, that's nothing, it's not a problem. And then they're ghosting me, or they've disappeared, or they've gone, or whatever. And they're complaining that you're not texting fast enough or you're fully asleep on the phone is a problem. 

26:39 - Taya (Guest)

I have similar situations and usually when I'm talking on the phone or somebody will call me and usually, if you ask me what I'm doing, eight times out of 10, I'm about to take a nap or I just woke up from a nap. So after a while a guy will say you sure take a lot of naps. 

26:58

That's when I say, okay, if it hadn't came out before it's time to tell. And then I don't know, maybe they think I'm a bore or I just sleep the days away. I guess it would seem like I sleep the days away if I'm always going to or coming from a nap, but I'm so much more than my naps. If you get a chance to find out about it, find out about me, and some people do, but for the most part people are not willing. 

27:25 - Kerly (Host)

Yeah. 

27:27 - Fred (Co-host)

I always see on the dating profiles there's a lot of people who write I'm a very active individual and I want you to be too, and they want to go work out together and go do all this physical activity together. And I just automatically swipe left. I'm like I just don't have the energy for you. There's no way. 

27:45 - Taya (Guest)

Yeah, I hate people at witcher't. Have the energy for you. There's no way. Yeah, I can't keep my witch up ready. 

27:50 - Kerly (Host)

Which I find sad, because I also do enjoy going on a nice little hike. 

27:54

I do the outdoors, I do love to travel, you just have to be able to accommodate this and I've had friends that I met who got me into hiking and stuff like that, from New Zealand or from Australia and they were very understanding of my narcolepsy and were fine with me sleeping in the car the whole way there and then refresh, do the hike and know that when we come back it's going to be knocked out and that's fine. But when I'm awake I'm fine and I'm good to be around. I'm a good love, but she still needs to have a rest. It's just if you want me to be talkative the whole way there or through the hike and then whatever. Or maybe I can do the shorter hike and you might gonna have to go up by yourself to the main one and you might not want to do that. It's just being able to work with me compromise yeah my two good girlfriends. 

28:43 - Taya (Guest)

We talk all the time they're the ones that know my nap time like it's nothing. And we went on a road trip and we had to spend the night and when I woke up in the morning and they all loud and talking and I'm just sitting there, can you be quiet for a minute, please? Just a minute. I just thought once I got out of that inertia I'm like that was rude as I don't know what. But they didn't pay any attention. I told them sorry, I'm real cranky in the morning, I don't like a lot of talking, so they didn't pay me no attention. I really have some really cool girlfriends that are understanding. I always take the first leg of the road trips because I'm usually still up at that point. Yeah, I like to hike and do a lot of outdoorsy things too. 

29:30 - Fred (Co-host)

You could bring a hammock with you and then you hike up there and put your hammock up and take a nap before you hike it's just accommodations for life, not just for work, if anybody needs them in one way or another. 

29:43 - Taya (Guest)

I would give and take a little bit in a friendship relationship. 

29:47 - Fred (Co-host)

And I'm pretty sure all your friends wouldn't mind taking a nap in a hammock, either on the top of a trail or something Absolutely not. 

29:55 - Taya (Guest)

We all could probably relax and rest more. 

29:58 - Kerly (Host)

Do you take medication? 

30:01 - Taya (Guest)

I do. I take Adderall during the day and I take Zyway at night. Okay, me and Zyway at night. Okay, me and Zyway have a love-hate relationship. Zyway has worked wonders for my sleep inertia. I can hop up out the bed, sometimes before my clock goes off. I no longer have to stare in space for 45 minutes or hours getting myself together. I can basically get up and go. I still don't like a lot of talking, but for the most part my sleep inertia is over. I can't say that it's done much for my excessive daytime sleepiness. I'm still excessively sleepy and that's really disappointing because I really thought Zyrae would be a life changer, a miracle. I've heard it described, and it is that for a lot of people, I'm sure. But it was disappointing that it hasn't had that same effect for me and my doctor Justing does it, trying to find the right place for me. But two years later I still haven't found it. I don't know that I will. Yeah, it's the same for me with. Two years later, I still haven't found it. 

31:06 - Kerly (Host)

I don't know that I will yeah, it's the same for me with siren. Like I heard all these amazing stories and it was the miracle drug and then, when I had taken every drug that was possible and there was nothing left, I finally put me on it and the first two weeks was life-changing. I didn't know you could feel this way. I'd forgotten what it was like to feel alert, not sleep on the public transport, to like get up and not feel groggy but not know why. 

31:40

I'm not feeling groggy, even though I don't feel like I actually slept that much, but I don't feel groggy. It's a weird feeling. And then in the evening, I wouldn't feel like I actually slept that much, but I don't feel groggy. It's a weird feeling. And then in the evening, and then I wouldn't feel tired all day. And then in the evening, about six o'clock, I'd start to feel tired and this was like two weeks, maybe two weeks, and I was like, wow, this is amazing. And then it went away and I was like what? And people kept saying that you'd lose weight on it. I didn't lose any weight on it and I was just like, oh my gosh, this miracle drug that people talked about was no miracle at all, but it does help with cataplexy. That it does help, Okay, because of me having cataplexy and falling now I don't fall hardly anymore. I hardly ever fall now. 

32:25

I just have mild cataplexy now, and it had to be something very extreme for me to fall down now. On it, yeah, yeah. So just a little bit, yeah, a little bit. I said okay, it was only meant to help move the cataplexy and to have those three weeks of bliss to ponder and remember on which are messy. 

32:48 - Fred (Co-host)

Yes, well, it's almost. It's like a teaser, and then it can give you a little bit of hope that maybe they'll keep working on the formula and tweaking it a little and then maybe one day they'll have something new that you can try. 

32:58 - Taya (Guest)

Yeah, it's made me research trials and I've been reading and learning about it and I'm like there's got to be something better than this and it's got to be on the horizon. And how can I help with this? But so it's gotten me down that path, just wanting more, hoping that there's more. I haven't pulled the trigger on any of that yet, but I've heard people speak of some promising drugs in the trial phases so I'm hoping something comes about soon. Yeah, I know what you're talking about O-R-E-X-I-N or something like that, yeah, orexinogenase, that's it really good thing. 

33:46 - Kerly (Host)

I think, go to sleep. If it could work to how they're describing it, it would eradicate sleep. 

33:53 - Taya (Guest)

So the yes. 

33:57 - Kerly (Host)

That would be nice in our lifetime. 

34:00 - Fred (Co-host)

So, taya, there's a question that we like to ask all of our guests around the end of the episode, and that is if you could press a big red button and get rid of your idiopathic hypersomnia, would you? And why, or why not? 

34:19 - Taya (Guest)

Absolutely In a second. I'm pretty productive now. I truly believe I could change the world if I didn't have AIDS. Not to pat myself on the back, I just think of what I could do with more awoke hours, more hours where my mind is fresh. More people I could help, more things I could serve more. I just want to do more stuff. 

34:53 - Fred (Co-host)

That's an excellent answer, yeah. 

35:06 - Kerly (Host)

So Teg, is there anything? 

35:07 - Taya (Guest)

else you would like the audience to know about IH or about yourself, about IH or anything with your body that doesn't feel right. Don't stop pushing. Don't stop pushing. If you need a second doctor, go to a second doctor. You gotta fight for yourself. Everyone doesn't have the same opportunities in that regard, but even still, any programs or benefits or clinics or anything you can do to just put yourself first, don't take no for an answer when you feel that something's wrong. Keep fighting. Rely on the support groups. They are helpful to know that you're not alone, because you're not and you can get through it. 

35:45 - Fred (Co-host)

That's wonderful yeah. 

35:48 - Kerly (Host)

Can you say the name of the nonprofit and, if people are able to, how can they donate or help in any way? 

35:57 - Taya (Guest)

It is a new nonprofit. My church is the First Baptist Church of District Heights. It is in District Heights, maryland. It's in Minnesota, washington DC, in the District Heights of Maryland, 10 minutes from Washington DC. About a year or two ago we started our nonprofit, which is the Heights Community Development Corporation, the Heights CDC. We're Instagram that same name, the Heights CDC. 

36:20 - Kerly (Host)

Okay, so everyone go on Instagram and look it up and see how you can help contribute to the good cause that is being done in this area. 

36:32 - Taya (Guest)

Yes, thank you. 

36:35 - Kerly (Host)

You're welcome. Thanks for coming on, Taya. It was lovely to hear your story. 

36:42 - Taya (Guest)

Thank you so much for having me. Sorry about the scheduling issues. I'm so glad you're coming here we can do this, I'm so good. 

36:49 - Kerly (Host)

That's absolutely fine. We like to close by saying happy napping, everyone Happy napping everyone. 

37:00

Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor 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 narcolepsynavigators gmailcom. You can also support us by donating at the website. Happy napping everyone.