Episode Transcript
00:06 - Kerly (Host)
Hello, welcome. You're listening to seasons one of Narcolepsy Navigators brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Keri Boger, the founder of Naps for Life Narcolepsy, and welcome to our stories. Hi everyone, welcome to the Narcolepsy Navigators. I'm Keri and I'm Liz, and today we're talking to Henry from New York, and welcome to his story.
00:47 - Henry (Guest)
Hello Hi.
00:51 - Kerly (Host)
Henry, how are you doing?
00:53 - Henry (Guest)
I'm doing all right. I'm a little sleepy. How are you?
00:56 - Kerly (Host)
Yeah, I'm okay, I'm good. I'm also a little sleepy too. I just came from my friend's house who cooked up a storm, so it was a nice Sunday yeah, meeting her family and catching up. I did have a nap while I was there that's good.
01:12 - Liz (Co-host)
I'm also post-nap, so I'm feeling all right right now.
01:16 - Henry (Guest)
Yeah yeah, it's not going into
01:21 - Liz (Co-host)
Tell us about yourself, henry. Where are you from, how old are you and?
01:24 - Kerly (Host)
the year you were diagnosed.
01:25 - Henry (Guest)
Okay, first of all, henry, from New York, queens, new York, I'll be 50 in April. Symptoms started in the spring of 96. And I wasn't diagnosed until January of 2009. So 13 year journey. Wow, that's a very long gap Narcolepsy type 2 wow, that's such a long time.
01:48 - Liz (Co-host)
And what were the first symptoms that you recognized in yourself?
01:53 - Henry (Guest)
first symptoms was the excessive daytime sleepiness I was. I got sick, uh on a trip, uh strep throat, and they said it was resistant strep and from then I just never felt rested. It was always tired and they did a lot of blood tests. Every doctor I went to just decided it was depression. So they suggested I see someone about depression. So I did that for a while and naturally it didn't help. I did the medications. Naturally didn't help. I did medications. Therapy wasn't working. I wasn't depressed, nothing. I didn't feel depressed at all, just tired. So I just kept going to different doctors trying to find something that didn't figure it out and my last visit to the psychiatrist was when he said nothing's working, let's try shock therapy. I decided not, rather not do that.
02:51
In just the fall of 2008 my wife suggested a sleep study, which was weird because no doctor ever suggested a sleep study. Is that considering? I was tired? So I did the sleep study and first they said it was mild sleep apnea. I did the CPAP machine for probably about nine months and it wasn't really beneficial. Another sleep study and they said it was idiopathic hypersomnia. Then we did another sleep study with the daytime test the following morning and they said, all right, it's narcolepsy type 2, and just on that path since, yeah, it was a long journey just to find answers after they did the daytime study and they realized and they said they had narcolepsy, did they still believe you had idiopathic hypersomnia as well, or did they then revoke that diagnosis?
03:44 - Liz (Co-host)
they just went with the narcolepsy ah, that's very interesting and why do you think it took so many sleep studies to get to that?
03:55 - Henry (Guest)
um conclusion um, I guess it's a matter of how what's actually looking at. First sleep study was just the nighttime sleep study and they really have to do that daytime study afterwards. Yeah, multiple sleep latency we take the five naps or 20 minutes to see how long it takes you to fall into REM. So without really that it's hard to diagnose. So initially I just did the first sleep study at night without doing that follow-up. So it took multiple trips just to get them to do the full range of testing. But I've gone to different sleep doctors over the years and each new doctor was a new test and each test has been the same with narcolepsy type 2 diagnosis what reason do they give for that, considering narcolepsy is like a lifelong condition, right, so it shouldn't just disappear?
04:51
right. I think it's more about being able to bill for another test wow, for the money because even if you have the paperwork showing your studies and the results, I guess they want to have their own lab.
05:04 - Kerly (Host)
Do it, whether they don't trust the labs or just another way to to build the insurance companies and sad as well, because okay, yes, the test is not painful, but still it's not like it's a fun thing being wired up to all the wires in your head and everything you know. So thankfully it's not a painful test, because I've had it done four times but still it's not like it's comfortable. So if you already have the diagnosis, they should just accept it so how old were you when you were diagnosed?
05:41 - Henry (Guest)
so you diagnosed in 09, 15 years ago, 34, and how old?
05:44 - Liz (Co-host)
were you when you first started experiencing symptoms.
05:47 - Kerly (Host)
21 22 years old you mentioned about your wife. So after you had the strep and then you started feeling sleepy and you started going to doctors, at what point did your wife come into the picture and did she know you before you started having the symptoms, or you met her when you already started having the symptoms?
06:07 - Henry (Guest)
Well, symptoms started in 96. I didn't meet my wife until 2003. We got married in 2005. So, yeah, I was already having symptoms undiagnosed and I was actually going to a psychiatrist when we first started dating and that was when I told her, like him, like yeah, they want to do shock therapy, so I'm not going back.
06:27
But it was about 2008 when she suggested maybe trying a sleep study to see another avenue to try, because all the blood tests were negative. They test me for, I guess, everything but a lot of needles, a lot of blood tests, a lot of questions and answers and no one had any answers. So when she suggested a sleep study, I said yeah, it can't hurt, why not? And it ended up being the right thing to do.
06:52 - Liz (Co-host)
How did you feel when you actually got that diagnosis at last?
06:56 - Henry (Guest)
I was very excited. I was relieved to know that it's not just in my head which doctors made me feel like every time they said, oh, there's nothing wrong, but you know there's something wrong. So it was nice to have that validation and I was excited because now I know what it is, so hopefully we can do something for it no cure, but at least start treatment. So I was happy about that.
07:21 - Kerly (Host)
So what was the first treatment they started you on? I believe, it was Provigil.
07:27 - Liz (Co-host)
Okay, yeah Also known as Modafinil right.
07:31 - Kerly (Host)
Yeah, yeah. How did they feel when you took it for the first time?
07:38 - Henry (Guest)
Initially I did feel some benefit from it. Of course it wasn't fully awake, but it did give some relief. And just over the years it was increased the dosage, the top dosage, and tried different medications. Unfortunately, my system has a high tolerance so I adapt to the medications. So it's a lot of changing medication, combination of medication, still trying after all these years to find the right, the right combination.
08:04 - Liz (Co-host)
What's been the most effective way of managing your narcolepsy and the symptoms so far?
08:10 - Henry (Guest)
Pushing through. Currently I'm taking Cynosi when I get up in the morning and then I take Avecio as boosters during the day. So I find the combination of slow acting in addition with fast acting boostersosters seems to be the best combination. Just matter of finding the right medications to do that with. I was doing a very high dosage of Adderall quick release and extended release. Unfortunately, it made my heart race too much.
08:41
So I didn't want to have a heart attack, so I opted to change it up and I'm trying to get off of the stimulants. Yeah, still trying to work out a good combination every time something new comes out.
08:52 - Liz (Co-host)
I'm definitely looking forward to trying it have you ever tried something to support your nighttime sleep? I was on xyrem for a while didn't benefit me during the day at all did you feel like it helped your sleep at night or you didn't really notice a while. Didn't benefit me during the day at all. Did you feel like it helped your sleep at night or you didn't really notice a difference?
09:07 - Henry (Guest)
didn't really notice a difference the waking up halfway through was a little more of a pain. One day my wife tried to wake me up, and she had a hard time waking me up, so a little scary for her I did fall out of bed one time, but yeah, I didn't get any benefit from the xyrem at all yeah, my mom and sister have had that experience where I've taken it and I also have sleep apnea.
09:29 - Kerly (Host)
I have multiple sleeping disorders and I didn't put my sleep apnea machine on and then I wasn't lying down properly in the bed and they were trying to move me and they couldn't wake me. And this happened to me at my mum's more than once, where they needed to move me or to wake me and they couldn't. And she was like this is I remember the next morning. She was like I hate this drug. It's very dangerous if you were not with us and you were with someone else and someone could do something to you. You know, you can't be woken, you can't be like because they were telling me all that happened and I didn't know a thing. I have no memory of this. Like they had to do this, they had to lift me, they had to do that, they had to put the pump on. That I don't know. I don't have memory.
10:13 - Liz (Co-host)
It's like it never happened yeah, it puts you in quite a vulnerable situation, doesn't? It definitely puts me off being in a ground floor flat and keeping any windows open, or I remember I've had it quite a few times as well where I've been asleep with Zyrem, and obviously it puts you well, it puts me in quite a deep sleep for a short amount of time, and then my partner has come in and into the room and it has actually woken me up because I'm so disorientated I just scream because I'm like who the hell is coming into the room and he's like it's fine, it's just me, it's just me, and I'm probably waking up the whole town by screaming my head off so what do you do for work?
10:53
if you don't mind me asking I work for, I guess, international beverage company uh count receivable and on my side thing I officiate weddings oh, that's nice, that's cool, I'm definitely willing to give a narcolepsy discount to anyone looking to get married in New York so do you feel like narcolepsy has impacted or shaped your career, because obviously you developed it when you were just starting out with your career.
11:28 - Henry (Guest)
Yes, I guess the brain fog, the concentration, I guess everything involved wasn't really what I was looking to do. I was more looking for a computer hands-on stuff. But being able to concentrate and the brain fog kind of changes that path. So sitting it off isn't always the best, so I have to, pretty much once an hour, get up and just walk around just to get the blood going and keep me from dozing too much.
11:53 - Liz (Co-host)
But it's a lot of little tricks you learn over time yeah, it's so hard to sit and be passive for a long amount of time because it's probably hard for anyone, but especially for our brains they just kind of easily slip into not quite focusing and then slip further into being sleepy. So I think a lot of people with narcolepsy if they work, they have quite hands-on jobs where they can move around a fair bit.
12:20 - Henry (Guest)
Luckily my supervisor is okay with you know she's aware of the narcolepsy, so she doesn't have a problem with me getting up every time I need to. So that's good.
12:31 - Liz (Co-host)
So do you feel like narcolepsy has shaped you as a person, or do you see it more as a separate thing from your personality and your identity?
12:41 - Henry (Guest)
I believe it's separate. I've never been like much of an extrovert, so I mean this didn't help at all, but I think I was already the way. I am still sleepier, I'm still, I guess, a wise guy, I'm still sarcastic crack jokes, but I don't know if it really shaped too much. Just, I don't go out and do as much as maybe I would want to, so I'm probably minimized, I guess social activities. But I'm pretty much the same person, just tired.
13:15 - Liz (Co-host)
That's quite handy, then, that you're already an introvert. So for you, even though obviously you're more tired than you would have been, it lends.
13:23 - Henry (Guest)
Yeah, I've been preparing for this my whole life. It's perfect.
13:27 - Liz (Co-host)
And it gives you a good excuse to not go out. I guess sometimes you're like oh, I'd love to go to your birthday party, but I'm a bit sleepy so, henry, do you have any children?
13:41 - Henry (Guest)
no, we don't. We tried. They don't work out. We tried the adoption path. Uh, that ended up not working out for us.
13:50 - Kerly (Host)
Oh, you have cats.
13:52 - Henry (Guest)
Well, we had them, so we'll probably go for more at some point soon.
13:59 - Liz (Co-host)
Oh, cat dad, that's nice. Yeah, I sometimes wonder how adoption agencies and things would look at conditions like narcolepsy and whether that would be a factor in their consideration or not if people couldn't go down the natural conception route and they wanted to adopt.
14:16 - Henry (Guest)
I did have to get a letter from my doctor explaining that I am doing treatment and that it wouldn't affect my ability to be a parent. So, yeah, it definitely can be a factor.
14:28 - Liz (Co-host)
That's amazing, though, that it is an option even for people who do have narcolepsy or, yeah, other health conditions that cause fatigue right.
14:39 - Kerly (Host)
I think it also helps that you are probably also in a family unit, and so I'm glad they asked your doctor for the recommendation. I tried um last year to get into fostering, but they didn't take me because of the narcolepsy. They didn't say in those exact words, but they um asked so many questions about your illness, about your finances. It's very thorough the things that they ask you and they check for. It's very thorough, um. So I appreciated that.
15:08
But then they were like, oh, we don't think you can have, because I live in a one-bedroom apartment um, if you needed a child to be older than three years old, they needed to have their own room, so they needed to. I'd need to move out of this apartment into a two-bedroom um flat in order for that to be a possibility. So, because I'm not able to do that, I would have to go for a child that would be under three. But once they understood what narcolepsy was, all of a sudden they changed this thing and they were like, oh, I don't think that it would be a good idea for you to have a baby or have a small child. You know, you know, don't think this is the right fit for you. Maybe if you move into a bigger house, you can apply again for an older child. I took that as basically you're saying that you don't think that I'm fit enough to have a baby because of narcolepsy.
16:03 - Henry (Guest)
That's so there are so many people with narcolepsy that have children yeah that do a fine job yeah so unfortunately, a lot of people still look as is as a disability that will hinder you from doing certain things. But there are plenty people that do it yeah, there's also people without medical conditions.
16:26 - Kerly (Host)
That shouldn't be parents exactly, yes, that's very true. So how did your family take the news about narcolepsy? Is your friends and family supportive? Did they understand?
16:40 - Henry (Guest)
they were glad that I finally got an answer. I believe everyone is supportive. I'm not sure if anyone actually understands fully unless you have it. They they understand more. They did some research on their own, so there's definitely support from my close family and friends.
16:55 - Kerly (Host)
That's good.
16:56 - Liz (Co-host)
Do you feel like your wife has a good understanding of how it impacts you and is supportive day to day?
17:02 - Henry (Guest)
I believe she has a pretty good understanding of it. Over the years that I've worked with different groups, with different like Sleep In or World Narcolepsy Day, she's aware of the information that I have and I post and she's also looked into it herself. So I think she has a pretty good understanding of what I have to go through each day. But I still have to do dishes and laundry.
17:29 - Kerly (Host)
You're not getting out of that one.
17:33 - Liz (Co-host)
I've tried to play that card a few times. I've just moved in with my partner, so hopefully he's not listening right now.
17:43 - Kerly (Host)
What other symptoms of narcolepsy, apart from the sleeping thing, do you find most challenging? Probably the brain fog definitely some memory issues concentration have you found over the years that these have gotten worse, or do you think they've stayed the same as when you just were diagnosed in your 20s I I think some things probably a little worse just by aging, but I think being more aware of what's behind it helps.
18:13 - Henry (Guest)
There's other other side effects and symptoms that I had that I didn't realize were part of narcolepsy until you know, joining support groups and having other people talk about the same symptoms, like different hallucinations I thought that was something separate that I was just dealing with. Support groups definitely help with that kind of stuff to learn about what actually is involved, not just being tired.
18:34 - Liz (Co-host)
Yeah, definitely. I feel like a lot of the time, doctors give you a kind of bare minimum description of what narcolepsy is and don't go into all the details. You know, like about the brain fog, about, like the sleep paralysis, the auditory or visual hallucinations when you're tired and you can just think it's just you and that you're actually a little bit. You know you've got other things going on, but it's so good when you find out that that's all a part of narcolepsy. It's very well. I found that reassuring.
19:04
Yeah, definitely so are there any strategies that you use day to day that have really helped you to manage your narcolepsy?
19:11 - Henry (Guest)
Try to set like a sleep schedule. If I need to take a nap, I take a nap, like I said, during the work hours. If I start feeling extra tired, I get up and walk, even just go to the bathroom and wash my face. It doesn't move around a lot more. I do the boosters to help. If they're not working, I let my doctor know and try something else.
19:31 - Liz (Co-host)
but yeah, sleep, sleep schedule definitely helps and just being aware of your limits and so, with the sleep schedule, is that going to sleep and waking up at the same time every night?
19:41 - Henry (Guest)
yes, yeah, I try to.
19:43 - Liz (Co-host)
I try to go to sleep same time every every night and then during the day for work, I have multiple alarms set, so I get up the same time every day interesting because we were talking me and caroley and another guest on the show were talking about sleep schedules and they were saying that they felt they had idiopathic hypersomnia so they didn't feel like it was very helpful for them or not very achievable.
20:07 - Henry (Guest)
But that's actually really interesting to hear that you feel like that has made a difference to you yeah, I mean, like everything else, everyone is different and reacts to different things differently, so may not work for everyone, so it's a matter of trying different things and finding something that that helps you yeah, definitely does your work accommodating for if you have not have to nap during the working day, do they allow that?
20:31 - Liz (Co-host)
or is it like at certain times or just once a day or something?
20:35 - Henry (Guest)
try not to nap at work. I don't want to snore. At work. I do get extra tired. I do actually take like a lap around the office and get moving. That tends to help a lot. Again, when I'm home, definitely take a nap if I need to. I also don't take all my medication on the weekends. I don't have to go out.
20:52 - Kerly (Host)
Oh, you have a holiday, a holiday from the meds. I mean Early after I got diagnosed and I started to talk to people online, I remember them telling me about, yeah, you should have a holiday. And I was like what? And they're like, yeah, you can take a holiday from your meds on the weekends. I was like, really, I'm like, yeah, you should try it. Sometimes it makes it work even more effective the next day because you've had a little break.
21:15 - Henry (Guest)
I mean you do tend to build tolerance yeah.
21:18 - Kerly (Host)
So I haven't done it like that, but I've found if I'm not feeling well, then I say to myself, why should I take the meds, especially the meds to stay awake? Because the body wants to rest, because you're not well, so it's just to allow the body to just have a break from all medication and just just go into it. So if it needs to sleep six hours or whatever in the day, then that's fine, let's let it do it, because it's trying to heal you, it's trying to get through the sickness, it's fighting something inside of you or whatever. You've got a really bad flu or cold or something like that. So that's usually when I have my medication holidays.
21:57 - Liz (Co-host)
I do the same because, yeah, like you said, I kind of wonder how good it is for you to put stimulants in your body when you're not well, and, like you, probably wouldn't have a coffee when you had, like, the flu if, unless you had to do something right, so good to just let yourself have that rest yeah, absolutely do you ever find that people around you or people you come into contact with don't understand narcolepsy and you like? How do you deal with that?
22:28 - Henry (Guest)
Absolutely, unless you really look into it or at it. I don't think people understand it completely. If I mentioned to someone at work I have narcolepsy, I'm doing the fundraiser, they really don't get it. Or like, oh, you're tired all the time and you fall asleep. Tired, yes, just fall asleep out of nowhere no. So I do try to explain somewhat, but I feel like a lot of people don't want to hear the full explanation same time. It is really tiring to do that all the time.
23:14 - Liz (Co-host)
So it's definitely a balance between letting people know that they can ask questions, but also not taking it upon yourself to educate everyone all the time, because you know we've just got to go about our lives as well, instead of explaining it all the time I do make a lot of social media posts, so people I'm sure scroll past and do you feel like you've gained anything from narcolepsy, or for you has it been mostly just kind of managing the more negative side of it?
23:44 - Henry (Guest)
I think it's allowing me to gain sympathy for people dealing with stuff that you don't know about, because everyone's dealing with something you're not aware of. So I think I have more sympathy for people dealing with stuff that you don't know about, because everyone's dealing with something you're not aware of. So I think I have more sympathy for for people dealing with issues you know slower to judge if someone isn't acting like people think they should be acting. So I guess it's making me a little more thoughtful.
24:06 - Kerly (Host)
I'm sure that's appreciated by everybody. Can you shed light of the emotional and psychological aspect of living with narcolepsy?
24:15 - Henry (Guest)
it's exhausting, definitely isolating. You feel like people just don't understand. Even if you explain to them, it's like they don't get it. So it tends to be isolating and it is for lack of better term tiring, being tired all the time yeah, I can relate to that phrase so much I'm tired of being tired.
24:36 - Kerly (Host)
Yeah, and is there any successes that you've had in your life that you believe narcolepsy might have contributed towards that?
24:45 - Henry (Guest)
I've always been very, I guess, private, like I didn't really share a lot of information with people. But with the narcolepsy I'm sharing a lot more, just to raise awareness, like doing this or the posts or talking about the fact that I have narcolepsy. It's not something that I would normally do. It's not something I did in the beginning. It took me a couple of years before I started making any posts, and then it was just graphics and then it was a little more time before I started sharing my story. So it's helped me, I guess, open up and share more of myself with people. It's definitely helped me open up a little bit.
25:19 - Kerly (Host)
That's really good.
25:21 - Henry (Guest)
I like that 13 years to get diagnosed is a long time, so I'm hoping other people don't have to wait as long. So I try to do what I can.
25:29 - Kerly (Host)
I'm really happy that you are speaking out, because in the narcolepsy community there's not a lot of men speaking out about narcolepsy. It's saturated with women, but there's not a lot of men speaking out. So whenever I see a man that has narcolepsy speaking out, I say, yes, oh my gosh. Yes, I hope that other men are listening or seeing this post, who have it, and I'm thinking, yes, he's speaking out. I say yes, oh my gosh. Yes, I hope that other men are listening or seeing this post, who have it, and I'm thinking, yes, he's speaking out. So it's okay for me to speak out. It's okay for me not to hide it or to be ashamed. You know, even if my family might be making me feel this way, or work, or friends or whatever, that's a great example. There's a man you know he's, you know he's an alpha male or he's. You know he's a man's man and he's still, you know, okay to speak about it. That means I can be one too.
26:19 - Henry (Guest)
I can be okay with it as well yeah, when I first got, I noticed a very few men making any kind of posts. There's definitely more now than there were and there's some that do so much more. You know that that I could do with their post and everything they do to help raise awareness. But yeah, it's definitely, uh, not enough of us out there and there's plenty of us that have it, that have narcolepsy. But I guess it's hard to share as a man because people either think you look weak if you have an issue or they don't believe you.
26:55
They think like you know, you're being too sensitive, or there's definitely a lot of us out there and it'd be nice to see you know more people speaking up have you found any other benefits to posting about it as well for yourself, apart from raising awareness? Connecting with a lot of people, connect with a lot of people just in the narcolepsy community. So that's definitely been helpful for myself and just more support system. So I think it's beneficial for everyone involved yeah, definitely.
27:25 - Liz (Co-host)
If there was one thing that everyone without narlepsy could just know, what would you want them to know? Sleepiness is not laziness yeah, that's a good one. Yeah, I saw some amazing artwork earlier by someone called Abby Stevens, I think it is, and she creates art about chronic illnesses, and she had a piece that said productivity does not equal worth and I was like, oh gosh, I want that on my bedroom wall. That is so important to look at every morning.
28:00 - Kerly (Host)
Have you been to many conferences? And from when you were diagnosed, how long was it until you met another person that had narcolepsy?
28:08 - Henry (Guest)
I have not been to a conference yet wherever. Wherever they are, it's expensive to get to them. I did do the walks with the narcolepsy network for a couple of years. It was a couple years after I was diagnosed and I was probably the first group that I really started following. So it took a couple years to finally meet people with narcolepsy. And then I met julie flygar. He was doing a talk at a college not too far from where I lived, so I I went over to the school to listen to her speech and but, yeah, I don't really decide from the walks that I did. I don't come in contact with anyone that that has narcolepsy that I know of.
28:52 - Liz (Co-host)
Oh, wow. So it's mainly through support groups that you link up with other people, but not so much in person.
29:00 - Henry (Guest)
Support groups yeah, I would definitely recommend support groups. They're very helpful, not only understanding the symptoms, but also with people that understand, that really get what you're going through.
29:16 - Liz (Co-host)
It's now a good time, Carolee, to ask my favorite question.
29:20 - Kerly (Host)
Yes, you can ask your favorite question.
29:23 - Liz (Co-host)
Okay, my favorite question is if you could press the red button and have never experienced narcolepsy and just totally get rid of it from your life, would you press it, and why?
29:35 - Henry (Guest)
that's actually a tough question. I want to say yes because I don't want to be tired all the time or deal with the other issues and side effects, but the fact that we have to connect with the community of a very supportive and caring and thoughtful I don't know if I'd want to give up that part of it, but if I can still learn the lessons from it but not feel tired, yeah, that'd be great the button can't do that.
30:01 - Kerly (Host)
I'm afraid it's one or the other yeah, this has been very interesting when we asked this question, the different answers that we've gotten. I think there's only one person so far that we've interviewed who, as soon as we said it, like instantly, they were like yes, take it away like at once, like everybody else was like very interesting question.
30:27 - Liz (Co-host)
Yeah, I think it depends on the day as well and how you're feeling. And, yeah, what's happened and you know, yes, exactly like it's such a hard condition to live with. So I thought everyone would definitely say, yeah, get rid of it. But I feel like it really does make you see the world in a different way and it gives you skills that you might not have had otherwise, and that in itself, you know, is a good thing, or at least a silver lining of something that can be really hard.
30:59 - Henry (Guest)
So henry, if there's anything else you'd like people to know about narcolepsy, or yourself, this is the time to to say it narcolepsy is definitely something that takes its toll on you, so it's important to have that support, whether it's from friends, family, strangers, around the world in different groups. The support definitely helps, but it is exhausting and what you do is keep moving forward, keep pushing. Something's not working, try to find something else, and everyone deals with things differently, so maybe someone else's experience might help you find another path to helping yourself.
31:41 - Kerly (Host)
What advice would you give to someone who was on a similar journey to your 13 years? It's been quite a few years of them still not having answers. What advice would you give them?
31:52 - Henry (Guest)
Keep trying different doctors, go to specialists in the field. If you're feeling tired, it might be a sleep-related issue Sleep specialists. Don't just go to regular doctors. Don't give up. Advocate for yourself. Let the doctors know what your symptoms are, how you're feeling, and find those answers. Find a support group. Find a specialist. The answer is there. Just got to keep looking. Keep finding it. Don't give up.
32:21 - Liz (Co-host)
That's so important.
32:22 - Kerly (Host)
Thank you. Thank you, henry, for coming on. Narcolepsy Navigators. Thank you for sharing your story and I hope that by people listening and hearing your story, that more men also come forward and know that it's okay to be public about their illness and also that anyone out there who has been waiting or been trying up to 13 or even more years and still not having answers, that there is still hope. Just keep pushing and advocating for yourself so you deserve to get the answers.
33:00 - Henry (Guest)
Oh, thanks for having me and thanks for doing this oh, you're absolutely welcome it was great to meet you and happy napping everyone. Happy napping Enjoy.
33:12 - Kerly (Host)
Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story. Thank you, you, you, you, you, you.
