Episode Transcript
[00:00:10] Speaker A: Hello.
[00:00:11] Speaker B: 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 ill us do a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerry Boga, the founder of Naps for Life Narcolepsy, and welcome to our stories.
Welcome to Narcolepsy Navigators. Today we're talking to Ross. He has idiopathic hypersomnia. And Liz and myself we are hosting today.
[00:00:54] Speaker A: Hi Ross, thanks for joining us.
[00:00:56] Speaker C: Hello.
[00:00:57] Speaker A: So you were telling us a bit about your day today. You were saying that it not been too bad, but you're starting to feel a bit sleepy now. How are you doing now?
[00:01:05] Speaker C: Yeah, it's really unpredictable. I mean, what characterizes idiopathic hypersomnia is excessive sleeping and excessive daytime sleepiness. I was all right until about an hour ago and then I thought, oh, I really need to sleep. There's no way I can do the podcast. And I actually lay down, switched my phone onto silence because I thought there's just no way. And then unpredictably again, I got off. I don't know what prompted that, but I did and I took some more meds to help with my wakefulness. And then I thought, ok, I'll give it a shot. I'll try the podcast.
[00:01:45] Speaker A: Great. Well, yeah, I really appreciate you joining us today.
[00:01:48] Speaker B: So Russell, would you like to tell us a little bit about yourself? So the listeners have a little bit of history of who you are?
[00:01:55] Speaker C: Yeah, I'm not really good to describe them myself.
[00:01:58] Speaker B: Okay, where are you based?
[00:02:00] Speaker C: Yeah, so I'm based in the UK in a medium sized city called Liverpool on the west coast.
[00:02:09] Speaker A: A great city, apparently.
[00:02:12] Speaker C: Yeah.
It's really good for cultural things and entertainment, restaurants. It's really great. It's got a lot of history as well. So I'm lucky to live here and I'm lucky that I've got so much close at hand.
[00:02:29] Speaker A: And can you tell us a bit about your journey with idiopathic hypersomnia?
[00:02:34] Speaker C: I've been living with idiopathic hypersomnia now for over three decades. It's been quite a journey. And I have at various stages looked back to try and figure out when it started. And I think I'm saying about 15 years old started. Yeah, it was about 15 or 16, something like that. And I just noticed it where it was becoming a regular occurrence for me to be sitting on the bus home from college and miss my stuff. And it was becoming a regular occurrence that I would maybe take a three hour nap in the afternoon, which was not usual for me. And I went from somebody who quite naturally when I was at school, would be waking up automatically at half six in the morning or a bit earlier. I was having to sleep in until eleven or twelve. I was taking mornings off college. I did well at the college. In spite of this. I think I must have managed to do enough or to sleep around when I needed to be in for classes and labs. But it was just something that I put down to, well, maybe there's something wrong, maybe there isn't. I don't really have any idea. I've never heard of anything like this before. I have heard of narcolepsy, but because I wasn't having the traditional description of narcolepsy where people were here, someone laughed and fall to the floor, I thought, well, it's not that because I can put off sleeping long enough if I really must. It was only the sleep attacks on the buses where I absolutely had no control. And it was like I was awake 1 minute and then I was asleep and then I was awake and then I was asleep and then I was awake and I'd missed my stuff because I didn't really see any point in going to the doctors specifically for that.
I figured maybe if I was more disciplined in my sleep routine or something, then it would just go away. Even if I did go to the doctors, I wasn't sure what they would tell me because I was pretty sure that I would be healthy on all my blood work and all that.
[00:04:59] Speaker B: So at what point did it get to a point where you or your parents were like, definitely, we need help from the doctor?
This is more than just falling asleep on the bus and stuff like that. There must be something else.
[00:05:15] Speaker C: So I think it was about.
I was probably about 22, 23. And by this stage I hadn't been able to function properly for quite a while. I'd given up on any ideas of really doing anything much.
My sleep pattern was all over the place. Well, I shouldn't say that because pretty much most days were similarly sleepy. I slept most of the day. I'd maybe wake up at 03:00 p.m. And then by 05:00 p.m. I'd be back in bed asleep, often freezing cold as well, even if it was in the middle of the summer. I had that strange combination of feeling really tired and feeling really cold. So then I'd maybe wake up again about half seven in the evening and then I might be awake until four in the morning.
[00:06:13] Speaker A: And is that quite typical for someone with idiopathic hyposomnia?
[00:06:18] Speaker C: So from what I've spoken to other people is that there seems to be different manifestations.
And I'd say mine is not the worst I've heard about. The worst I've heard about is when they can't wake people up for two weeks at a time.
[00:06:35] Speaker A: Wow.
[00:06:36] Speaker C: The diagnostic criteria, which is less than what I have, I have most of it than the minimum diagnostic criteria, but the diagnostic criteria is on average, 11 hours of sleep a day. I think it's over a month or something, or over two weeks.
So when I was like, in my early twenty s, I could probably some days sleep 18 hours.
[00:07:08] Speaker B: Wow.
[00:07:09] Speaker C: I just was in a place where I thought, well, I'm going to have to accept this now. It wasn't like that every day. Every day the sleep was disrupted, and every day the sleep was a problem. But it was. Some days I had these extra naps, some days I managed without. Some days there was like, paradoxically, hardly any sleep. Some days it was just almost all sleep. And I charted it out.
It didn't seem to be any pattern to it, except that it was clearly excessive sleep. And the pattern of it every day was slightly similar, like in going to bed and waking up, but there was a lot of variation in that middle period of afternoon and evening. And at that time I couldn't really get to a doctor because not being awake until, say, 03:00 p.m. I was never sure that I was going to be awake enough to make it to a doctor's appointment. So if I'd booked a doctor's appointment for 05:00 p.m. And I was too tired or I was asleep, then I was not going to get there. So even that was difficult. But I did go eventually. And I think that they sort of channeled me through psychiatric because I was having excessive sleep. That's something that's associated with depression. And I don't say that I didn't have depression at the time because things were very difficult for me. I was having anxiety. I was wondering how to find my way in a world that I couldn't really access. And it was quite frustrating, really, to feel that life was going on. I wasn't being able to be a part of that.
[00:09:02] Speaker B: So how long after you first saw the specialist were they able to say, let's do some tests and give you a diagnosis?
[00:09:13] Speaker C: So I'm not sure. I can't really remember. But I do remember that after a while of seeing. So I was under general psychiatry, and after a while being under general psychiatry, I saw a doctor, and his interest was also neurology. I showed him my sleep pattern, which I charted. And I suppose I was wondering, at this stage, is this some type of narcolepsy? I didn't know. But anyway, I charted the sleep pattern. I gave it to him. I had about a couple of months where he took it away. And the next appointment, he said that he'd looked it up. He said there was hardly any information that he could find on it. This was like the year 2000, something like this. But he said he did find one small paragraph about something called idiopathic hypersomnia.
And he said he thinks that I have. That this wasn't the best news from my point of view, because the psychiatrist that I was talking to was a very good doctor, and he'd struggled to find anything else about it. There didn't seem to be much in the way of treatment, except something had just come out called modafinil. And they weren't sure whether that was a good idea or not. It was decided that I could try it, and I did. I tried modafinil, which is a drug that would be familiar to most narcoleptic or ih, patients. It's usually the first one that we're given. And modafinil did wake me up for a while.
And like a lot of patients I've had who I've spoken to, who also have ih, it worked well, and then it worked less well, and then it was like taking the tablets, but it wasn't working, but hoping that it would work, and then really just the side effects. And so I came off that tablet. I was a little bit heartbroken because for a while there, it seemed like there might be something that gave me a life back.
I was doing voluntary work outside in the fresh air. I was getting out every day. I was seeing people every day.
I was seeing friends every day. I was meeting new people. Within about six months, six months to a year, there was no benefit. I can't remember exactly the time frame, but it was like, oh, so that was the only hope. And now that hope has gone. What now? And that was quite difficult.
[00:12:15] Speaker A: That's a very quick time frame for it to stop working or stop being effective. When it started off so well, it.
[00:12:24] Speaker C: Was quite a quick time frame for it to stop working.
And what I would say is that, in retrospect, I think what was happening was because when it started to stop working, I was getting all of the things that people with narcolepsy will be familiar with, like the REM intrusion, rapid time movement, sleep.
Well, I don't know if it was specifically that, but certainly the dreaming intrusion. So where I'd take my tablets, I'd be awake, maybe take another dose and I'd be awake, and I'd be trying to force staying awake, really, with the tablets within the dose prescribed. But nevertheless, whatever the mechanism of the idiopathic hypersomnia that was trying to win out and force sleep. And so I'd be sitting there and I'd have my tablets, and then the only way I can describe it is that the visual of where I actually was would disappear and would be replaced with being somewhere else or with me moving through somewhere else.
And then within a few seconds, I'd snap back and I was where I actually was.
And so that's something that I find frustrating, because you never know when you're actually awake, because you can dream that you are where you are and that you're awake, and then you can wake up from that and you are in the same place.
[00:14:25] Speaker B: Because where you went was so real that when you are actually awake, you're surprised that your reality really is reality.
[00:14:34] Speaker C: Yeah. But also, if I dream that I'm sitting in my apartment and I'm having a Zoom call, then I wake up and I'm sitting in my but there's no Zoom call, then which one was real?
This is a difficult thing.
I remember being awake and sitting down and having a dream that I was crawling across the floor trying to ask someone for help because I was sort of trapped in my dreams and it felt so real.
And then I woke up and I was just sitting in a chair and I was trying to figure out, but am I really awake now that I'm sitting in a chair or am I going to wake up from this?
It didn't become so difficult to tell what reality was because these cycles would happen in close succession, so they would happen until I got the opportunity to sleep. So if I had a period like that where I was getting these dream intrusions, I would get them, like, one after the other after the other, after the other after the other. And then I would get to a bed or somewhere or slump somewhere against something, and I would sleep, and then I would wake up for real.
And although I wouldn't feel as wakeful as I would like, I would at least know that I was in reality and that it wasn't in a dream state.
[00:16:20] Speaker A: So that is quite similar to the auditory or visual hallucinations that people get in narcolepsy when they're having sleep attack. I know I've had some weird ones before where I saw a cat walking across my school desk and things like that. So is that the same experience as someone with idiopathic hypersomnia as well?
[00:16:41] Speaker C: I think the experiences are generally the same, and just from when I've been talking to people who have narcolepsy type one or narcolepsy type two, or ih. In general, when I'm talking about the dreams being very vivid, that it's like being there, or when I've been talking about being awake, but being so tired that dreams have started to intrude whether I was asleep or not. This seems to be something that a lot of people narcolepsy Nih can identify with, and often they will share their own experiences back. I don't hear too much about it on the forums.
I wonder maybe if people are a little bit reticent of how it might be perceived if they have the symptoms, because I don't believe it's actually a true hallucination. I think it is dream, but often when people describe it, and often when I describe it, I will say hallucination, but I don't think that's probably the accurate descriptor or the accurate word.
[00:17:49] Speaker A: Yeah, and it's so disorientating when it happens.
[00:17:53] Speaker C: Yeah, it's similar to sleep paralysis for me. I don't know if this is similar for you, Liz, or Caroly, but when I used to get sleep paralysis, I'd be lying in bed feeling completely like, well, I couldn't move anything. And I would have this feeling like if I could just make a sound, if I could just make a noise, if I could just knock something off the sides of the table to get somebody's attention, then they could come and shake me and wake me up properly. Now I was probably dreaming that, and it was probably within sleep because I never could move. I never did get that control where I could make a noise or move my arm. I never got that until I finally woke up. Woke up. And then if there was someone in the room with me, I'd sometimes be a little bit annoyed, like, could you not see that I was trying to get your attention? Could you not hear that I was trying to make a noise and they were none the wiser. So the sleep paralysis, I don't quite know where it happens, whether we're awake and we're paralyzed, or whether we are actually asleep. I think I was actually asleep, but thinking that I was awake and trying to move.
[00:19:13] Speaker B: Yeah, it's fascinating, isn't it? Because you actually are getting upset. I've had that with family where I've been like, why didn't you wake me? Why didn't you do this? And they said, oh, but you didn't look like you just had a nap. I said, no, I wasn't napping. I was in parasis, or I had a capacity. Why were you not getting me out of it? But we didn't see that. We just saw you close your eyes, and that was it.
[00:19:41] Speaker A: I've had the same. I think the most I've ever done is made a little whimpering noise. And then my partner has sort of, like, shook me and said, are you okay? Are you all right? Yeah. But it is strange because you literally feel like you're calling out or even screaming or showing some kind of distress.
[00:19:58] Speaker B: Yeah. On your face.
I feel that the symptoms in my face. So I was shocked when other people said, oh, no, they didn't see it. I'm like, oh, I don't think you were looking properly, because how come you didn't see all the facial expressions I was making? Or I guess I thought I was making.
[00:20:18] Speaker C: Well, that's a little bit different from my experience, because I felt like I wanted to scream out or shrous house or I wanted to make some sort of noticeable movement, but I was aware that I couldn't.
[00:20:36] Speaker A: Yeah, I've definitely experienced both where I think I am actually screaming and then other times where I'm so desperate to make a noise or say something, and I just physically can't.
So over the years, Ross, have you found any medication that has helped to manage your condition?
[00:21:03] Speaker C: Well, certainly with the sleep.
Think so. When I was first given modafinil, I was also given venla vaccine. I think I was already on venla vaccine before I was given modafino, actually, I think because the medafinol was keeping me awake a little bit of a time when I didn't have the sleep paralysis because the modafino was working. And then when the modafinil started to fail, rather than remove it completely, they added on a drug called riboxacine. Riboxacine is a drug that increases noradrenaline levels in the brain. Avenlafaxine also increases noradrenaline levels in the brain. And so when I came off the modafinil, it seemed like the sleep paralysis didn't return.
I was trying to use the riboxetine to keep me awake, and I tried a few different doses, and it wasn't great at keeping me awake. But I did notice that during this period of time when I was taking the riboxetine and I was taking the venofaxine, that the sleep paralysis, it seemed to have gone away, quite frankly, and it's been very seldom since then that I've had this horrible experience.
[00:22:22] Speaker B: That's really good. So, Ross, how does idiopathic hypersomia impact your daily life? And what strategies or coping mechanisms have you found helpful?
[00:22:33] Speaker C: So it impacts every day, and it impacts every day whether I'm medicated or not. But the medication will adjust how it affects my day or modify the effect of the illness.
[00:22:49] Speaker A: And do you take medication every day or just sort of as and when you need it?
[00:22:53] Speaker C: Yes, I am taking medication every day at the moment. There's various reasons that I'm taking the medication that I'm on now. So there's been quite a long history that I don't think I'll have time to go into of why I take what I take now. But I found that I had to try various stimulants. And I must explain as well that between being diagnosed in the year 2000 and now, somehow my diagnosis got forgotten or missed off or whatever, and I went without help for about 15 to 20 years.
[00:23:25] Speaker A: Wow, that's a long time.
[00:23:27] Speaker C: Yeah, probably about 15 years. And then I was re referred to the sleep clinic, and they started from scratch.
[00:23:35] Speaker A: And so you didn't have access to medication or advice all that time?
[00:23:40] Speaker C: No. From about the year 2002 to about.
Maybe it was about 2012. I think I was just treated as a patient who had an unusual depression.
[00:23:56] Speaker B: Right.
[00:23:56] Speaker C: Okay. I was treated under adult psychiatry. So they tried psychotherapy, counseling, about five different types of antidepressants from about three different classes. They tried augmenting antidepressants with other drugs, and they never really solved the problem because the drugs they prescribed, they modified how things work. So at one stage, they prescribed a strong tablet, which acted like a sedative to augment the antidepressants effects, to try and boost that antidepressants effect to see if it would wake me up. That strong tablet I used to take at night, and it used to knock me out cold. And it would therefore mean that if I took it at 10:00, by 11:00 I would be asleep and I would sleep right through. And so whereas that wasn't specifically a treatment for a sleep disorder, it was at least setting a sleep time in stone, because that wasn't a tablet that you could fight to stay awake. You took it and it was like, bam, you were out. And in the mornings I was taking an antidepressant, which had the stimulatory effect, supposedly. So maybe that got me going a little bit in the morning, and then I'd nap in the afternoon, because it was just unavoidable if I didn't, the chances of me falling asleep somewhere random or not being able to get through my day, or just being really uncomfortable and feeling really unwell.
So the various psychiatric medications that they tried, I don't fault the psychiatrists, they tried really hard. They tried everything literally. And I won't say that I didn't have a benefit, certainly there was benefit to energy symptoms that I had. My anxiety levels obviously were really low because of all these drugs. And nevertheless, I was still really frustrated and annoyed at how little I could do. So during this time, I was managing to do about 2 hours a week at night school. That was it. That was like my career, education, training and what have you was 2 hours a week. And this was from someone who had really good school grades right up to 18. This 2 hours a week seemed really hard to even do that, to go and to keep up with just a little tiny bit of homework. But also I knew in my head that if I didn't have this illness, whatever was going on, that I'd be capable of way more. And so I became grateful for what I could do, which was very little. But at the same time, I also knew that if I didn't have this illness, I will be capable of maybe much higher earning potential and working long hours and such like, which I wasn't going to get the opportunity to do.
[00:27:08] Speaker A: That's such an important point as well, because when you have a condition like narcolepsy or idiopathic hypersomnia, or any really long term condition, you definitely compare yourself to this other you in your head that doesn't have that condition and can go and live this amazing life that we create for ourselves. And I definitely find myself grieving that at times. And it sounds like you had that kind of thought process as well, where you are very aware of the things that you couldn't do because of your condition.
[00:27:42] Speaker C: Yeah, I don't think it's a grieving process that's over and done with. I think I've come to a place of acceptance in many aspects of this, and I think that acceptance comes from that. Although I have been severely impacted by otopathic hypersomnia. For a long time. I did manage to do little bits. Those night school classes, they added up. I managed to go back to university.
[00:28:14] Speaker A: Amazing.
[00:28:15] Speaker C: Did my undergraduate degree, albeit it was a great sacrifice, because everything else in my life had to go. I couldn't no longer tidy face or have clean things, or I was falling asleep in toilets, I was falling asleep in the library, I was coming home to sleep.
Everything was just like, working around where I could sleep, around my timetable.
[00:28:41] Speaker B: So that became the main focus of life.
[00:28:44] Speaker C: The main focus of life became like, if I just sleep that afternoon, then I'll be able to go in for that 05:00 lecture.
[00:28:53] Speaker B: Yeah.
[00:28:55] Speaker C: So the main focus of life, really, was the university life and the lectures and the labs. But it was always in my mind that if I go in in the morning and be wise to sleep in the afternoon, so that I can then get my notes together in the evening or vice versa.
[00:29:13] Speaker B: And that worked, that system that you put in place, it worked enough for you to finish the university.
[00:29:19] Speaker C: Yeah. But I needed certain strategies as well. So one of the strategies that came later on, so I think in the second year was that I recorded the lectures.
[00:29:32] Speaker A: Yeah, that's a great one.
[00:29:33] Speaker B: I did that also.
Was there any other accommodations that the university offered or anything like that, or. They didn't have that at that time?
[00:29:41] Speaker C: No, they did have that. So I had an interview with a student disability advisor, and one of the things that he picked up on was that because of my condition, which he didn't really necessarily understand a great deal about, but he understood about functioning and talking to me, he picked up that my processing speed was going to be slower because of the tiredness.
So I got extra time on the exams. I don't know how I would have done without that, really, because I used all that time, pretty much every exam.
[00:30:12] Speaker A: I had the same at Uni as well. I think it's so important because, like you say, if we've got tired brains, they're not going to work as efficiently as someone who's got super switched on in that moment. So. Yeah, I definitely found that helpful as well.
[00:30:29] Speaker C: Yeah. The other thing I noticed was that although I was going to the lectures and attending all of the seminars, and that's something I would say as well, if you've got disability, don't miss anything, because if you miss anything on top of missing things because you're half asleep or not well or in pain, then you're missing too much. So I made sure I attended everything that I could. And although I was trying my best when it was getting to exam season, I hadn't kept up with the notes, I hadn't written them up, I hadn't kept them tidy, I hadn't kept them in one place.
And so there was always a couple of weeks of panic before the exams where I didn't have any lectures or classes, but it was like, okay, now I have to do this huge amount of work, I have to sort of panic, run round looking for notes, figuring out what's on the syllabus and making sure that I am able to go into that exam and do something.
[00:31:33] Speaker B: Did you find that that level of stress made your symptoms of idiopathic hypersomnia worse, or no, or it wasn't affected.
[00:31:42] Speaker C: So I was certainly worse afterwards.
After.
[00:31:47] Speaker B: Okay.
[00:31:48] Speaker C: I do seem to be able to push through a cris.
Okay, now that might be different for people with narcolepsy type one. Maybe they have cataplexy and can't function, but I seem to be able to get by a little bit on adrenaline for a while. It's no good. So I think at the time that I was doing my second year exams, I think I'd been. I was back under the sleep doctors and I can't remember if they retried me with modafinil or if they just put me on CPAP to see if I had apnea. But in any case, I wasn't optimal in my therapy. And I remember this time coming up to exams and I was kind of using like, lucas aid and sugar and anything really that might get me a little bit more energy just remembering, you know, how the sleep just comes on at the most inappropriate times. And I remember specifically one day when I had an exam, I think it was starting at like 930 in the morning something. I remember being awake at half six and I was fine, and by half seven I was laying on the sofa like, I can't even move, I can't even stay awake. I can't go into the exam. There's no way. There's absolutely zero possibility I can go into that exam. And then an hour later I just woke up and I don't know why, and I just went and did it.
[00:33:12] Speaker B: Wow.
[00:33:13] Speaker C: But it's that unpredictability where something really important might be coming off. You don't know from 1 minute to the next or if you're actually going to be able to put yourself across the front door.
[00:33:26] Speaker B: Yeah, that must be frustrating and scary as well, because you can't tell whether you're going to make it. Even if you make an appointment, you can't tell whether you're going to be able to actually go or not.
[00:33:37] Speaker C: So if I make an appointment, what I try to do is I try to sleep beforehand. So there was a bit of doubt as to whether I'd make it over the Zoom call today because I only had one nap. Now, if I'd have had two naps then I would have known the chances would be high that I would be on the zoom call. But I got carried away with doing what I was doing, didn't have a second nap. And then about an hour before we started, I started feeling like I'm going to sleep and I was lying down and all the rest of it, it's not going to happen. And then again, just for no reason, I just came to, started doing stuff. So yeah, it's difficult to predict, but I know tomorrow I've got appointment late morning and early afternoon and so I'll probably try and sleep in and then just before I have to go, I'll get ready and go.
[00:34:27] Speaker B: Yeah, I find that quite helpful. I do that as well with the narcolepsy. My sister usually calls me like at 730 and she wants me to get up at 730 every day. This is why you shouldn't take certain people to the hospital with you to see the neurologists, because they remember everything the neurologist says. And then other days when you are back home and you're not with the rhinologist, they'll say, oh, well, that's not what the neurologist said. They said you should only sleep for half an hour. They said you must get up at the same time every day. They said you must go to sleep at the same time every day. And that's all well and good in theory, but putting it into practice is something else.
[00:35:06] Speaker A: It's actually so hard to implement that.
[00:35:08] Speaker B: Yeah. And I have found that the reason why that helps if I know that I have an appointment and I get up closer to the appointment if I've already showered the night before. The reason why that helps me is because it doesn't give much time or scope for me to fall asleep. So that means from the time I physically get out of the bed and I stand up, I cannot sit back down.
I have to do every activity standing up. Now I have to go eat, brush my teeth, go toilet. Toilet is the only sitting down activity. It has to keep moving, get dressed and get out the house. If I sit down for 1 minute, that is it. I'm going to sleep and I can't even eat because once I eat, I'm going to need to sleep again. So it has to be back to back to back to back to back. In order for me to not do that, I'd have to wake up so early so that I would eat. Then after eat I'd need to go back and sleep because I'm going to need a nap.
[00:36:04] Speaker C: And so then that's the way I do it. I wake up, I eat, I go back to sleep, I wake up and then maybe I can start my day.
[00:36:12] Speaker B: Yeah.
[00:36:12] Speaker A: Does anyone else really dislike having planned naps? Because I always plan a nap for lunchtime, particularly when I'm working. And even on the weekends I have to nap after lunch. But I just sometimes hate the feeling that I'm missing out on things or that I have to sleep and try and put it off as long as possible. And then I just get so cranky and so miserable with everyone. I'm like, right now I have to go and sleep. There's just no way I can put it off anymore.
[00:36:40] Speaker C: I think, Kelly, you and I are beyond that stage.
[00:36:44] Speaker B: Yeah, I know that the cataplex is just going to come and bite me, so it's not even any point. I might as well just not just let it go.
I no longer take half an hour naps. My body doesn't allow me to minimum is 1 hour minimum. If I go to college, like when I'm going to college on Tuesday for the podcast course, when I finish and I come back home, I will sleep two and a half hours.
[00:37:12] Speaker A: Because your body just needs it.
[00:37:13] Speaker B: It needs it. And frankly, I could sleep more, but my cat will wake me because he needs to be fed. No, but it crashes because it's like you were awake for too long.
And maybe if I have some sleep attacks at the college, then maybe when I come back I will only sleep an hour. But if I have no sleep attacks, then by the time I'm coming from college, from I get onto the bus, my body's like, yeah, we need to sleep. Yeah, we need to sleep.
[00:37:41] Speaker A: And do you ever find it as well, if you do hold off on a nap to a later point, that when you do sleep and then wake up, you feel really groggy.
[00:37:52] Speaker B: Yeah, it turns out that that nap wasn't quite refreshed. You probably should have had it earlier when your body really wanted it.
[00:38:00] Speaker C: I used to have a lot of problems waking up groggy in the early part of my condition. Like the first five or ten years I used to have horrible problems waking up, feeling groggy for whatever reason. Now that doesn't happen, which again, I'm relieved about the thing about missing out. I'm sleeping in the afternoon and it's going to probably sounds a bit tragic, but I think it's like I'm missing out on so much anyway already that to have the nap in the afternoon is not going to make me miss out on anything I could have. I can see that situation where maybe if you're in a work situation, you got colleagues you might want to socialize in that lunch hour, but because at the moment, I'm not able to go out and work, I'm not able to engage in any study activity, then my days at the moment are really just dealing with my. Dealing with my environment, dealing with my daily activities, making sure that I've got food, making sure that things are as clean as they can be. They're not got laundry piled up, I've got things piled up. But it's sort of chipping away at what needs to be done at home.
It.
I do lack a social life. I lack a work life. I lack that interaction with people, that opportunity to meet people and to make money, which is.
It sucks, really a lot, but because it's been so long, then I'm kind of adapted a little bit.
Sometimes you have to let go of hope, and that's horrible because I know in the early stages of the illness, I used to just have this hope that one day everything would be better or there will be a treatment that would work really well or that I would become able to function really well, or that I would find some way of supporting myself around my illness.
And after years of that not happening, I just had to drop the hope and accept that where I am and the way things are is the way it is. And it might be that this is the best that it can be.
[00:41:14] Speaker A: That sounds incredibly hard to come to that realization and go through that acceptance process, which, like you said earlier, I'm sure isn't just a one stop thing. It's all the time having to go through those emotions.
[00:41:31] Speaker C: Yeah. And it's particularly difficult at the moment. I'm going through a depression additionally to having ih, and it's not affecting the way I function, but it's affecting the way I feel about myself.
So those negative voices are coming back in.
I should be able to do more. I should be more functional. If only I was more disciplined. If only I tried harder. If only I wasn't so lazy. If only I was more efficient. If only I was better at managing all my tasks. Why am I like this? Why is my life so, like, stuck in a rush?
I am capable of better than this. I'm capable of doing better than this. I should be meeting people. I feel alone, I'm lonely, I'm in pain. Got no answer. He shouts it all this negativity is intrusing and that is, I think, really depression.
And just because you have ih or narcolepsy type one or narcolepsy type two, doesn't exempt you from being one of those warning for people who will get depression quite seriously throughout their life.
[00:42:58] Speaker A: I definitely forget that when you have narcolepsy, it doesn't mean that you're not going to get other conditions. You can always hope you think, I have this one condition and that's enough on my plate already, but it's just not the case. And like you say, you can have mental health issues as well. Come along with that other physical issues which can make it so much harder to deal with.
[00:43:21] Speaker B: What advice would you have for other people living with idiopathic hypersomnia or someone who's supporting someone who is well, if.
[00:43:32] Speaker C: Someone'S living with idiopathic hypersomnia, the best advice I can give them is to just find a way, some way, any way to try and communicate with somebody else or a group of people that also have idiopathic hypersomia. Because it's rare, most people get a diagnosis of narcolepsy. And it seems that ih is more resistant to treatment.
There are a lot more frustrated people with ih saying, this drug didn't work, that drug didn't work. I've been taking this, but I just keep falling asleep or I'm hallucinating again, or sleep paralysis has kicked back in and I haven't been able to get out of bed except to go to the toilet for weeks. And when you hear that this is not just you, then there does come with that a little bit of realization that this actually is my truth. Because when you think it's just you, and you've had one of those days and you've been in bed all night asleep, and then all day, in and out of bed sleeping one and a half hour naps, three hour naps, and you look at what you've done with your day and it's been nothing, and you haven't spoken to anybody, and whatever meds you've taken have just not hit, and you're going back to sleep again in spite of it, then it's useful instead of sitting there thinking, oh, well, it's clearly me, I'm lazy and I'm not trying hard enough to go on a group. Maybe you hear other people saying, oh, yeah, well, that happened to me. But what I did was I switched out my meds to something else. Or some people might say that they took a break from their meds and they slept for a certain amount of time and then they reinstated them. Other people, it may be that they find different strategies of napping so that they're more awake when they're awake, rather than trying to force it. So I think there's really a lot of different tweaks and hacks that we can make around our condition. But when we're alone with it, it's easy to feel trapped and isolated. Especially like when you're in the same four walls, if you're living alone, it becomes like solitary confinement.
And we know that if you put people in solitary confinement, they go mad after so many months.
And I do remember going through a phase and my bedroom was as dull as possible to make it exciting to get out of bed and go do something else in the living room or outside. So my bedroom was like dull.
It was this kind of dull gray color. Everything was just boring.
But what that meant was that basically spending my days, my weeks, my months in the dullest possible room that you could imagine, because just because it was dull wasn't stimulating me to get up and go into that living room, which was nice and bright and had activities. I was too tired. I was just waking up.
Yeah, I need to go back to sleep. Going back to sleep. Wake up, yeah, need to go back to sleep. And then it was like, after a few years of this, it was like my bedroom is like the most boring and the emotional room in the house. It's good sleep hygiene and there's nothing in here except for sleeping. There's no distractions.
The end result is that I am spending my life in, like, nothing. There's just nothing going on.
So for my sanity, I've brought all those distractions back in because otherwise I'm going to spend that time in the room. Bedroom. Anyway. The sleep hygiene thing didn't work for me. If I'm going to be sleeping and napping and tired when I'm awake, then I at least be able to want to scroll my phone and use my laptop and read and maybe nice on the wall. Yeah, something nice on the wall.
I mean, going back to what you were saying, carly, about the sleep hygiene, and your sister was saying that the doctor said you must wake up at this time and you must go to sleep at that time. And if you have a nap, it must be half an hour and this, that and the other.
But that advice almost seems like the doctor is advising you to not have a sleep disorder. If you behave just as though you haven't got a sleep disorder, you won't have one. Because to me, going to bed at a certain time, waking up at a certain time and maybe only having half an hour nap here and there, that's a normal person, that's not a person with a sleep disorder.
[00:48:57] Speaker B: Yeah, that's so true.
[00:48:59] Speaker C: Yeah.
[00:48:59] Speaker A: I wonder how it differs between people's conditions as well. Because I think for me, I probably could, with the medication I'm on at night and in the daytime, I probably could and should make myself go to bed at the same time every night and wake up at the same time every morning. But even for me, my quality of sleep differs. So sometimes I do want that extra hour in bed, but I can imagine for you guys, when the medication isn't as effective that. Yeah, it's not really that realistic to say you need to have this sleeping pattern at night because you just don't know if it's going to work or not.
[00:49:37] Speaker C: Yeah. And I'm quite lucky that the tablets I take at night, I am at least getting a good night's sleep.
I don't know if that's the same for you, Kelly.
[00:49:49] Speaker B: Touch and go, it depends. One night good, one night bad, one night good.
[00:49:53] Speaker C: Yeah. So I have the nighttime sleep now with those tablets, but the daytime, it's more unpredictable. Like if I've got lots of adrenaline, if I take my tablets on an empty stomach, if I get out straight away, if there is stuff that demands my attention, I've got more chance of getting through the morning. That can sometimes kick over into the afternoon.
But really it's hit or miss. I mean, what I will say is that although it's hit and miss, it's better than without the meds. I am not going to be engaging in my hobies, I am not going to be getting on top of the clutter, I am not going to be going to the supermarket, the cat tray isn't getting changed for too long, the laundry isn't getting done, nothing really, excepts basic survival. And that feels like dying, basically. And the last time that I was off meds and I was off meds for about eight months or something, it just felts like there's not much difference here in being dead than being in this condition.
So I had a conversation with my sleep doctor to go back on the stimulant meds, and we discussed the risk of the stimulant meds. There are risks with regard to it can raise blood pressure, it can have risks on heart, increase the risk of heart attack, things like this. And I said, well, all of those things, yes, they are a risk.
I could die of heart attack, or what's the difference between lying in the cemetery and lying in the bed and doing nothing? In both cases, I'm just lying there doing nothing. I also said that, okay, so let's find a way to minimize the risk. And so one of the things to minimize the risk is that I get my EKG monitored, my ECG. If you're in the UK, I get my ECG monitored a couple of times a year to make sure that my heart rhythm is normal. I can get the blood pressure monitored at the GP, and I have a blood pressure monitor here myself. And so if I see any signs that the blood pressure is going up, I can do something about reducing the tablets. And also I take cholesterol, anticholesterol tablets as well, to minimize the chances of heart attack.
And the doctors also suggested I lose a bit of weight. I'm not overweight at the moment. But he said, well, just losing a little bit more would be maybe a bit more reassuring to him that I'm reducing my risks as much as possible, because with everything in life there is risk. And I think if my risk was really high, then obviously they wouldn't prescribe. And if I was risk averse and didn't want to, if I didn't feel safe, I wouldn't do it. My blood pressure is fantastic, my heart rate is fantastic, EKG is normal.
I'm aware of the risk, but the benefits is definitely outweighing it for me at the moment.
[00:53:08] Speaker A: And do you think for you, that idiopathic hypersomnia has affected you as a person, like your actual personality and who you are?
[00:53:17] Speaker C: I guess I think because having idiopathic hypersomnia, you are living a drastically different lifestyle from if you didn't have a geopathic hypersomnia. And I suppose that's going to have an impact on the way you see the world and the way you deal with other people. I suppose I have dealt with it by exploring philosophical things and spirituality, religion, things that I probably wouldn't have looked into too deeply had I been on some high flying career path, or if I'd have been, know, moving about and meeting lots of people, being stuck inside, or, I mean, okay, I've traveled. You know, I make it sound like I'm a hemis. I've traveled abroad. I've lived in other countries. I lived in China for a while.
This is european countries, so it's not like I can't ever go out, but just when the majority of my time I'm inside, then you have to think, well, what can I do?
Maybe it's Internet, maybe it's reading books. Maybe it's doing some hobby. Spent a while going to church because it was kind of local, that was somewhere to go and a nice community. Yeah, I think that did change me. I think that whole sort of process of going to a community of people and being in an environment where we did sit around and we talked and we were allowed to ask questions, and it was almost a family like atmosphere, and I think that increased my confidence. And also it was very. A very accepting group of people. So if you are disabled or there's something that you're really struggling with, I think for me, the church was really a place where that wasn't uncommon.
Everyone was quite open to their own fight, whatever that might be, and to fail staying awake or being alert, there always seemed to be someone else that could just pick up the pace.
[00:55:44] Speaker A: And even though it's obviously an incredibly hard condition to live with, is there anything that you do feel grateful for having had those experiences over your lifetime?
[00:55:57] Speaker C: Absolutely.
The experiences that I have had living with ih, it would not be possible to have those experiences without learning to find the silver lining, I suppose. And that's going to be hard for some people.
Ih is devastating to people's lives, and I consider myself lucky because I don't have a partner and children.
One of the things that I see over and over again on forums is that people get diagnosed. The next thing, their partner is complaining that they're lazy, that they sleep too much, that they're not looking after the health, and the partner might leave them, take the kids because the partner will say, well, you're not responsible. You're always in bed. They may then lose their job. They may not be able to drive to work and back.
And so I think it affects people, some people, maybe people who get it a bit later on in life. Well, worse, because they are the people that can have it all and they have had it all and they're enjoying life, and then everything just gets stripped.
[00:57:11] Speaker A: Yeah. They have that direct comparison.
[00:57:14] Speaker C: Yeah.
[00:57:15] Speaker A: And if you could press a button and get rid of idiopathic hypersomnia and have never experienced it. Would you do it? And why?
[00:57:26] Speaker C: You mean, like, from the planet or from me?
[00:57:29] Speaker A: From you.
[00:57:31] Speaker C: From me, yes.
[00:57:35] Speaker A: I thought you might say that after hearing your story, it sounds. Yeah, incredibly difficult to go through that.
[00:57:43] Speaker C: Not everyone would say yes, because some people feel that with all of the dreams and the insight and the time to reflect, they feel that they get some kinds of interest in spiritual life. But I think, for me, I would definitely press that button transitively, like at the age of 15 or 16, if I could have made it go away. Yes, it can go. And I think I would have pressed it every day since as well, because it's not just sleeping excessively and feeling tired when you're awake, juggling whether you want to be on meds or not. I also feel crappy a lot of the time, and I can't put that down to anything else. I put it down to ih, and I can't really describe how I feel crappy, but I've been online with people know I do the group that kylie goes to, and I'm like, you know what? This isn't just about being tired. This is about feeling crappy as well. And I get so much feedback. Everyone else is like, yeah, I just feel super crappy. I don't know why. They might have a diagnosis of narcolepsy or iH. And there does seem to be an additional sort of symptom which can only be described as feeling really unwell in a kind of general but nonspecific way.
[00:59:08] Speaker A: Super rundown.
[00:59:10] Speaker C: Yeah, everything kind of hurts a little bit, but not enough that anything hurts or just kind of exhausted to the bone or just, like, really like to think about that really basic thing, but my brain just isn't going to do it, so I'm not even going to try. And there's a feeling associated when you get that exhausted or when you get that tired. For me, there's definitely just a general feeling of heaviness or aching or pain everywhere. And my brain just feeling like, okay, I can't take anything more in. I'm just going to have to sleep and recess everything, and then I'll be able to think about whatever trivial thing it was in the first place. It might just be like a trivial bit of arithmetic or something. And I'll just be like, no chance.
After sleep. I'll be like, oh, yeah.
[01:00:14] Speaker B: One of the sayings I'd like to quote one of the narcolepsy ladies, she said it, and I've put it on a t shirt. It says, the cure for sleep is sleep.
[01:00:26] Speaker C: Yeah.
I'm not alone in the community in thinking that if there was just some way I could sleep and sleep and sleep and sleep and sleep, that maybe I would wake up. But I think it works like that. I know that's how Xyrem and Xywev, the oxybase, are supposed to work. They're supposed to really give you that really deep, restful sleep at night, so that in the daytime, whatever it was that you've needed, you've somehow got.
Now, there's not a lot of experience with oxybase in the IH community, so I don't know if that's something that works or not. But I do feel that the way I would best summarize my condition is that it feels like my brain needs whatever sleep does, and sleep isn't doing it. So I sleep more to try and get it. That makes it sound like I'm consciously choosing to sleep. Now my brain just says, you haven't got enough 10 hours sleep. We need to go back to sleep and try another couple of hours and see if that fixes it.
[01:01:36] Speaker A: Definitely not a choice.
[01:01:38] Speaker C: No.
[01:01:39] Speaker A: And for all our listeners today who might not know much about idiopathic hypersomnia, what do you want the main takeaway to be?
[01:01:49] Speaker C: So I want the main takeaway to be that idiopathic hypersomnia means excessive sleep from a cause that has not been determined. It does not mean excessive sleep where there is no cause because there's been some confusion about the definition, I sleep too much, but there's no reason.
Now, that is not the case. There is a reason.
It's just that there hasn't been sufficient research in sleep medicine to find out what that reason underlying is. And I've been told that that's because there are too few patients. And I believe that there's research going on in America at Emory, and they think they found something. They think they have found the reason, but because it's very early in the research stage, you can't go and get tested for anything.
And so if you're being told by the doctor, you're sleeping too much, but there's no reason. It must be psychological or something along those lines, you're sleeping too much, but there's no reason. You need to have better sleep hygiene. It might not be that the reason is psychological or that you need better sleep hygiene. It might be that there is a massive chemical imbalance with the Gaba system and all the psychology and psychiatry and sleep hygiene in the world. If you've got a major imbalance with the Gaba system. They're only going to be like, nice things to have. They're not going to change anything drastically. When I was initially diagnosed in the year 2000s or thereabouts, the doctor said to me, there is something wrong with you. He said, we don't know what, we might never know what, but there is something wrong with you. And that helped me. He was a psychiatrist, in fact, and it helped me. He continued to see me as a psychiatrist to do what he could. He wasn't going to be able to cure it, but he could at least help with the symptoms of the mood.
[01:04:02] Speaker A: Having that validation, I'm sure, was extremely helpful to know that it wasn't all in your head and you were genuinely experiencing those symptoms.
[01:04:12] Speaker C: Yeah, absolutely. This validation is really important, and I was always very open to it being all in my head, psychological.
I've done 18 months of counseling, I've done however many months of psychotherapy, I've done psychology sessions, I've done group therapies, I've done a whole lot of things like that, and I would recommend them if they're offers. I think it's part of the whole self actualization and realizing who you are and adapting to your life and working with what you've got and optimize everything you can, definitely.
[01:04:58] Speaker A: And help you through the grief cycle as well.
[01:05:02] Speaker C: Yeah, helping you through the grief cycle. But that thing about we may never know the cause.
This is the truth of the people with other conditions as well, and I am thankful, at least, that I haven't got a condition that kills me. There's a group of conditions they call syndrome without a name and syndrome without a name. Conditions are where people have something wrong with them, usually something more severe than hypersomnia, and perhaps they're not going to live. They won't ever get to the bottom of it. And I think these people have it so much harder because they don't have a label. They don't have a group of people who may be with the exact same condition because they can't put a name on it, and they're maybe desperately ill with their organs or something like that. So in some ways, I'm quite thankful that it's ih that I've got and not something else, because I think there's a lot of people with diagnosis, medic problems and whatever, they've been the doctors, and they haven't got the answers. Yeah, definitely.
[01:06:02] Speaker A: So it's helpful to have the label at least and go from there.
[01:06:06] Speaker C: Yeah.
[01:06:07] Speaker A: Well, thank you so much for sharing information about your condition today. I've definitely learned a lot. I have to be honest, I did not know much about idiopathic hypersomnia at all. So yeah, it's been great to hear about your experiences and how difficult it has been, but also the things that you've learned from it and are grateful for as well. I think, yeah, it's been really great to have you on the show, and I think it's probably nap time for all of us.
[01:06:33] Speaker C: Oh, it's getting late, so I'm actually just waking up.
[01:06:39] Speaker B: Well, yes, Ross, thanks for coming on narcolepsy navigators. It was interesting to hear a little bit about your story and how you're coping and navigating life with idiopathic hypersomnia, and I hope everyone learned something from it. Put your comments down the comments section. All right, thank you, Ross.
[01:07:03] Speaker C: Thanks, Rose.
[01:07:04] Speaker A: Bye.
[01:07:06] Speaker B: 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 storybook.
