Episode Transcript
00:10 - Kerly (Host)
hello, welcome. You're listening to season two 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 Kerly Bwoga, the founder of Naps for Life Narcolepsy, and welcome to our stories.
00:40
Hi everyone, welcome to Narcolepsy Navigators. I'm your host for today. Liz and I have narcolepsy and cataplexy. Kerly, who is also co-host, is unfortunately unable to join us today. She is in Kenya with limited internet access. But we have our lovely guest Imaarl. Hi, Imaarl.
01:02 - Imaarl (Guest)
Hello, so I guess I'm Imaarl, 35 from London and I have Klein-Levin syndrome, also known as KLS or sleeping beauty syndrome.
01:11 - Liz (Co-host)
Nice. Thank you, Imaarl, and when were you diagnosed with?
01:16 - Imaarl (Guest)
KLS. I was diagnosed with KLS around 18 years old, although it did take a long time to be diagnosed because it's so rare. So around 18 years.
01:24 - Liz (Co-host)
Yeah, wow, okay, so you've had it, had a diagnosis for quite a long time now.
01:29 - Imaarl (Guest)
Yeah definitely.
01:30 - Liz (Co-host)
What did your symptoms look like when you first started experiencing?
01:35 - Imaarl (Guest)
them. Okay. So the first time I had an episode I didn't I wasn't aware, obviously, that it was an episode, but it was New Year's Eve 2008, roughly, and I'd just gone out for a normal New Year's Eve. Obviously, it's my first year drinking in the club, so I had a few drinks and I remember I had a drink and I just felt really, really, just out of it, spaced out, and I remember collapsing in the bathroom and just waking up thinking like where am I? But again, I'm just thinking, that's the effects of the alcohol.
02:05
The next day I was in Liverpool at the time and the next day I was driving home. My mom was driving us home on the motorway and I just felt really, really spaced out and not quite knowing whether I was, whether I was dreaming or awake, sort of things. The next, that happened for several days after that incident. Even when I got home, I just could not get out of bed and at the time my mom and everyone around me thought that I'd been spiked, because this happened after I'd got out and two weeks later I was still in bed. So after a couple of days I thought, ok, maybe I'm sick, you know, a week later they were like no, something's really, really not right. This is not like her.
02:44
So my mom took me to the GP and because I was a teenager, the GP just assumed she's probably been taking drugs. This is a normal reaction, teenager. She's probably been excessively drinking. Do you really know her sort of thing? And my mom was like something is not right. She's just not got out of bed and I just felt really, really drowsy, a bit like I was under anesthetic. But I could wake up.
03:07
But when I was awake everything just felt like a dream. And after two weeks I sort of just woke up out of it and I looked at my phone and I realized two weeks had passed and I'd missed college and I was like to my mom, my sister at the time, where have I been? And that's when they explained that I'd been unwell and that sort of happened on several occasions where I'd fall asleep for two weeks and the doctors just again just my parents and were just like you know, it's just a teenager. It's only when my mom done her own research and she randomly came up with this article. She found an article about a girl that had a similar sort of set of symptoms and she come across Klein-Levin syndrome and she brought this to the GP and was like you know, I think that she's got this and that's when they confirmed yeah, it's likely that she has Klein-Levin syndrome.
03:54 - Liz (Co-host)
So that was the first set of symptoms, and I can't even imagine what that was like, because even though I have narcolepsy, it's obviously the symptoms are quite different from KLS, and so can you explain more about how it actually feels to go into one of those episodes?
04:13 - Imaarl (Guest)
Yeah. So, as I say, that episode just felt like being really drunk at the time, but going forward, when I've had more episodes, it literally feels like the life is draining out of your body.
04:24
I don't know if you've had an operation before, where they put you to sleep and that feeling of just the life just literally draining out my body and I would just feel like the extreme tiredness that I've never experienced before, other than having this episode where I just cannot stay awake, and then, when I am awake, so I would sleep for up to 23 hours a day, and the times when I am awake, so I will sleep for up to 23 hours a day, and the times that I am awake, when I'm woken up, it literally just feels like everything's a dream. So because I'm sleeping so much, I'm confused in reality with my dreams and I just cannot wake up out of that state oh my gosh.
04:58
Yeah, that must be so disorientating it really, and my episodes they increased in time. So the first two episodes for two weeks and then increased to one month and then two months and then my longest was three months that I was in that state for.
05:15 - Liz (Co-host)
My God, and how often do they happen?
05:18 - Imaarl (Guest)
Fortunately, I haven't had an episode in many years now about eight years now and my GP did say that in the research that they've done, this will probably last for about 10 years. And I would say in the 10 years that I did experience those episodes, I had about eight episodes, but from one of the. You know I'm part of a KLS group and mine was some of the longest episodes that I've been experienced. There are people that have it, you know they have episodes every couple of weeks and it might be for a few days or a few weeks, but mine would seem to be for months at a time that I would be in these states.
05:53 - Liz (Co-host)
Wow. What impact does that have on you to be in an episode like that for anywhere between two weeks to three months?
06:02 - Imaarl (Guest)
Firstly because it's so rare, not many people believed me. That was the first thing. So when I'm trying to explain in the beginning stages at least, when I didn't have much information and the doctors didn't even have much information about KLS, it was kind of hard to explain People would ask me where have I been? And I can just say I've been sleeping. And also because I'm explaining that I'm sleeping, people just assume that people, a lot of people, will say oh, I've loved to sleep to that that amount of time. But really it was the psychological impact because I've missed so much time and I'm not aware and I'm only remembering bits of information that's happened. When people remind me remember this happened and I'm waking up. I mean one of the first times that it happened to me I woke up and Barack Obama had just been elected and I remember that was a really big thing in the newspaper. You know, the first black president and.
06:51
I'd slept through that and I had woken up and all these news articles and, you know, time had changed so much in that time and it was really disorientating and also I woke up with a really extreme headache. I don't know if you've ever over like, you know, when you oversleep um, and I just felt really, really weak.
07:11 - Liz (Co-host)
You know, lying down for that amount of time and it was just, yeah, people not believing me and being really disorientated, and that must be not good for your body either, because I imagine if you're going through periods of sleeping for a long amount of time, you're maybe not having regular meals or not exercising and you're if you're lying down all that time, your muscles might actually be kind of wasting away to some extent yeah.
07:37 - Imaarl (Guest)
So I would have to have round the clock care, 24 hour care, so my mom, my dad and my sister had to do shifts in looking after me and they would have to wake me up. In the end, on the longer episodes, my mom was just having to give me smoothies and when I did wake up out of that three month episodes, I just felt really, really weak, just really weak. It's like learning to walk again and I've lost a dramatic amount of weight. And again, explaining that to people, you know people assume that I've had an eating disorder or you know I was probably depressed and it's trying to explain the symptoms that I was experiencing and people just laugh it off and are not really, you know, sympathetic or understanding of what I was experiencing at that time. And also, I would have severe nightmares during those episodes as well. So I'd be like a frightened child.
08:24
In the times that I was awake which, on those longer episodes, I did spend some time in hospital, but the doctors would just say we literally don't know when she's going to wake up. It's literally like being in a coma. I was literally in a coma and people just the doctors or specialists just didn't know when I would wake up and, in fact, there would be doctors from. There was one point when there was doctors around the country that came to view me in the bed and because I was like this rare you know this rare condition and they've never heard of that before so they came and saw me and you know they was explaining my condition.
08:57 - Liz (Co-host)
And so what would happen if someone did try and wake you up whilst you were in one of those episodes?
09:05 - Imaarl (Guest)
I would be extremely irritable for, firstly and I would just I just couldn't stay awake. I would literally use try and do anything to sleep. I mean the second episode that I, that it actually happened to me I was I actually went on holiday, my first you know holiday, to Ayia Napa. I went with my friends and on the plane going there I would, I again, I felt really, really tired, but I just assumed, you know, it's because, um, I'm going on holiday, I'm excited and for some reason I was there for one week my brain just kept me awake, but throughout that whole time I just felt like I was extremely spaced out. I just thought it was the effects of holiday and in fact I didn't even drink on that holiday because I just not aware of anything. And I remember the first day I went to the cash point and I just couldn't remember how to use the cash machine and I remember just standing there for about 10 minutes thinking like I'm looking at all these buttons and I cannot remember for the life of me how to use it. And that's just how it played out for the rest of the holiday.
10:05
There was an incident where I was in the sea for hours it seemed like hours, but it was probably, like you know, like for about half an hour just floating on the on the float in the sea, just again spaced out. And when we went in the evening we went to a club and I just remember thinking I just need to go home and sleep. So I followed these, these boys that I recognized from our hotel, and I just followed them into their hotel room and just fell asleep on their floor. Luckily they were really safe and kind and they made a bed for me on the floor and they waited for my friends to find me. And then there was another occasion where I literally just left the club and I fell asleep on the floor outside a hotel and again a lovely boy found me and he was like I'm gonna wait with you until your friends come and they and then my friends come.
10:50
But it was just very much. I would literally just fall asleep. If I needed to fall asleep, I would just fall asleep there and then. But it wasn't so much like narcolepsy where I would just fall into a sleep state, it's like I was. It was literally like being drunk and then you just fall asleep and you're not what you. You can be woken up, but when you are, you're not aware of anything yeah, it's like your brain is just not not switched on at all.
11:15 - Liz (Co-host)
You're kind of in a completely different mode and you're just going through it, but not really present, until you can fall asleep, and then your brain's like ah, this is what I.
11:24 - Imaarl (Guest)
And everyone around me because I don't look like I'm unwell. I might just look people. A lot of people probably just assume that I was just drunk A lot of the time, even when I would go out places. People just assume that I was drunk all the time so it was battling that and not actually being aware that I'm actually unwell. But again, there's nothing. When I'm going into, them states there's nothing that can be done. I can't take medication for it. I can't be awoken. There's no nothing that can wake me up out of it.
11:54 - Liz (Co-host)
I just have to wait. Basically, and the thing that strikes me, from what you said about your experience on holiday as well, is actually that it was putting you at risk because you were a young woman, falling asleep by yourself, very vulnerable, or making decisions that you wouldn't usually make, because you weren't really. I guess your rational brain wasn't switched on at that point.
12:16 - Imaarl (Guest)
Yeah, and I think about those moments all the time, like how lucky I was that in those instances I literally I was met by people that were caring and, you know, did look out for me, because it could have ended up so much worse. I'm in a completely different country, I'm only 18. I'm a young, vulnerable girl and I've fallen asleep on the stairs of a random hotel and that could have ended up so much worse, but thankfully I was found by the people that I was found by and you know, it's okay. Like I said, there were so many instances where I would just not be aware and just fall in asleep. Yeah, anything could have happened, really.
12:59 - Liz (Co-host)
How quickly do these episodes come on? Because you said you kind of start to feel the life draining out with you. Is it like does it happen across a day or is it like a few hours?
13:12 - Imaarl (Guest)
um, I would say it'll be a day. For about a day I would feel slightly off that something is not quite right, but again, I can't put my finger on it. Even when I had the diagnosis I couldn't really put a finger on it, and then, with over a couple of hours, then I'm just gone in that space. In that 10 year period I also didn't drink alcohol, because I realized that if I drank alcohol as well, that would likely trigger an episode for me. And if I did drink alcohol within half an hour, I know that I'm going to be sleeping. Yeah.
13:45 - Liz (Co-host)
Wow. So alcohol would make you feel sleepy, but it would also then trigger an actual episode.
13:51 - Imaarl (Guest)
Yeah, so I didn't drink for 10 years, yeah.
13:54 - Liz (Co-host)
Gosh, okay, that sounds interesting. I definitely want to come back to the not drinking. One thing I do want to ask you is how you actually got diagnosed with it. Are there any kind of tests that you went through, or was it just a doctor's decision, I guess?
14:10 - Imaarl (Guest)
they did. I can't remember what the test called where they um put the stickers on my brain to see my sleep pattern, but really, truly, there wasn't really a test, they were just my mum being very persistent with the information that she had. And you know, from that story, she began to find other stories of people that had similar symptoms. It was through that that doctors believed, yeah, this is likely, um, what she has, what I have, um. So, yeah, it's just my mum being very persistent. They were very, very reluctant I'd say I was only a teenager at the time and they were very.
14:41
The doctors that I did have were very dismissive and then I was referred to a sleep specialist in St Thomas Hospital. That's guys in St Thomas, and that's when they diagnosed me. Thank God for persistent parents, exactly exactly Because many people I was saying many people around me just assumed that I was probably taking drugs or alcohol. I just didn't want to go to college anymore and you know, know, many of the stereotypes that they have about teenagers. That's what was given to me and my mom was adamant that she knew that something wasn't right and this is likely to be what it is.
15:15 - Liz (Co-host)
And how did you feel when you got that diagnosis?
15:18 - Imaarl (Guest)
It was kind of it was a relief, but it was also very scary because there was limited information or research about the condition and they didn't really have any information to give me. To be honest, they didn't say that, although one doctor did say it could last approximately 10 years, they couldn't tell me how, whether it was lifelong, and it seemed like everything was very bleak from what I had read. You know, people couldn't live normal lives, people couldn't um, you know, it would interrupt large portions of your life and it was very yeah, it was very scary wow.
15:53 - Liz (Co-host)
So you had your first episode when you were a teenager, before you were diagnosed, yeah. And then the second episode, in when you went your first holiday. Was that after you were diagnosed?
16:06 - Imaarl (Guest)
No, I think I still wasn't diagnosed, I was still going through, because that the first episode happened in the January and then I went on holiday in the summertime, right, ok, yeah, so I was just about getting diagnosed and then after that episode, that's when they said, yeah, it's likely that because the first episode, like I said, we just assumed, we did just assume perhaps she's been spiked and that episode only lasted for two weeks. So at the time maybe it was just a really bad flu that I had had. And you know, they my parents and my sister wasn't actually aware. They just at the time they just thought that was really unwell, recovering from the flu. Only time. They just thought that was really unwell, um, recovering from a flu. Only when I woke up two weeks later and I was like that was strange, I don't remember the date changing into for two weeks, where have I been like, have I been out? Have I? Has Christmas happened? I just wasn't aware anything.
16:56 - Liz (Co-host)
and do you think your diagnosis dictated your kind of life decisions around that point? Because obviously, being 18, that's quite a pivotal moment deciding what you want to do for your future.
17:10 - Imaarl (Guest)
I think that when the doctor told me that about my diagnosis, ever since we grown up, my mom's always told me like the power of the subconscious mind and you know telling yourself that you're well, so you'll remain well. So I kind of had a bit of that in my mind when, when the doctor was quite negative about my condition, I kind of told myself no, I can't, I cannot live like this. I'm 18.
17:33
I can't let this ruin my life and I did go to university and I was at university and in fact the first when I was enrolling in university I was unwell at that time in an episode, and I remember signing up for university and again I just felt really spaced out and I remember my friend just talking to me and I was just like I don't know what's going on and I couldn't remember my way home.
17:54
But I persevered and my university wasn't very supportive Because, again, it was something very rare I had very limited medical documents I could provide to them and I missed my second year university exams because I was sleeping. But I just carried on. And when I woke up I just sort of carried on. I didn't want it to stop my life in any way. So I just redid the year and I ended up graduating, but I didn't drink for that large period of time, for the 10 years. But yeah, I just I didn't want it to impact me in any way because I knew that I could have if I had just, you know, given up at that time.
18:31 - Liz (Co-host)
Yeah, and what got you through those really hard moments when you were at uni and you were having an episode or feeling exhausted?
18:42 - Imaarl (Guest)
Looking back, I honestly don't know how I got through it. Yeah, if I felt that I was going to be going into an episode, I don't know when I'm going to wake up, yeah. So, as I say, I didn't know when I was going to wake up and I honestly, looking back, I don't know how I got through it. I guess I kind of, because I was part of the KLS group, I kind of saw other people that were experiencing this every other week or every month when I was.
19:08 - Liz (Co-host)
I say that I'm quite lucky that even though I had long episodes, they were spaced out in between so I could live some sort of life in between those episodes yeah, and that's another thing that I want to ask you about and we'll come back to that one because sometimes having that community can really, yeah, have an impact in one way or another. When you were going through one of these episodes, did other people around you notice that something wasn't quite right?
19:39 - Imaarl (Guest)
I think perhaps in the early stages I didn't really explain it well. I just probably just laughed it off a lot of the time to say I was just sleeping. So many people just thought that, you know, when I was going through the episodes, I was just sleeping. And I think, like I said before, a lot of people just assumed. A lot of the times when I'm in social settings a lot of people just assume that I was drunk or probably just you know this, you know spaced out teenager.
20:03
I was probably high all the time and I think that that's why people didn't really recognize the symptoms. I was able to blend in. I was at university at the time and, yeah, that's why not many people recognize the symptoms. The only time that people knew that I was asleep was because at the time that's when, you know, instagram was becoming quite popular Facebook, so I would update on my Facebook or my Instagram and when I would go missing, people would just write on my wall I hope you're awake or you know, and that's when people would check in on me when I would disappear off social media.
20:36 - Liz (Co-host)
How did you manage sharing your condition with people? Is it something you were quite open about, or did you tend to keep it to yourself?
20:43 - Imaarl (Guest)
Yeah, I was very open about it. But again, I think people just it just went over people's heads at the time. When I'm saying I've got a sleep condition, I tend to change the way I worded it. So at first I would say, oh, it's a sleep condition. Now I actually say a brain disorder because you know, it was so much more than just sleeping at the time. You know, missing out on large periods of life and not being able to explain what had happened to you was quite yeah, it was quite something to experience.
21:12 - Liz (Co-host)
Yeah, I found that as well. Actually, actually, even when describing narcolepsy, if you say sleep disorder, people kind of think like well, everyone's got issues with sleep, whereas if you say it's like a brain, neurological thing, it gives it much more, makes it sound as serious as it is exactly yeah, a lot of people just like.
21:32 - Imaarl (Guest)
I'd love to sleep for that amount of time, but you're well rested and I'm like you wouldn't like to sleep for that long.
21:39 - Liz (Co-host)
No, it's so annoying and people say, yeah, I'm like no, you wouldn't like and what.
21:44 - Imaarl (Guest)
Actually, when I came out of the episodes, I was scared to sleep. So after the episode, I there would be days when I would just get no sleep because I'm literally scared to close my eyes. And it would be. It would be incidents where I would just get no sleep because I'm literally scared to close my eyes. And it would be. It would be incidents where I would wake up and I'm just blinking constantly Like am I really awake? Because during those episodes I don't know whether I'm dead.
22:04
There's a lot of times where I'm thinking am I dead? Because this doesn't seem real. Everyone's around me telling me that I'm unwell, and I don't feel unwell, but they're telling me I'm unwell. So don't feel unwell, but they're telling me I'm unwell. So there'll be a lot of times where I'm like touching the bed or touching my face, touching the wall, and I'm like am I really here? And I'll be scared to go to sleep. And even now, although I haven't had an episode in some time, when I do get extremely tired, it is like, hey, is this a bit more than usual, than normal tiredness, or am I going to wake up from this?
22:34 - Liz (Co-host)
yeah, it's almost like a trauma response because you've been, I mean that must be traumatic to go through that and then your body and your mind remembers that and is like, oh my gosh, like let's hope that's not happening again, exactly yeah, and everyone around me as well.
22:51 - Imaarl (Guest)
Once I did get the diagnosis, it's like everyone around me constantly asking are you okay? You're not going to go into an did get the diagnosis? It's like everyone around me constantly asking are you okay? You're not going to go into an episode, are you? And it's like no, I'm fine, it's just normal tiredness. If I even say, not so much now, but at the peak of it, when I would even say that I'm tired, you know everyone would panic yeah, and how did your family deal with your diagnosis?
23:13
for them. It was a very stressful time because, let's say, people would have to take time off work to give me 24-hour care. It's not like I could just be placed in hospital, because the hospital couldn't really do much for me and there was no medication that I could have. The doctors would wouldn't know when I would wake up. So just very stressful time.
23:32 - Liz (Co-host)
And did you feel like they truly understood the condition or made an effort to understand it?
23:39 - Imaarl (Guest)
Definitely. I mean my mum, my dad, were nonstop researching the condition and, you know, trying to find other people with similar stories. So, yeah, they really made an effort to understand.
23:53 - Liz (Co-host)
Yeah, it makes such a difference when the people close to you really do try and understand, like what you're going through that it really really does.
24:02 - Imaarl (Guest)
It really does, and even giving me the information once I've woken up. That was really helpful, because I say I've gone to bed one day and I've woken up months later and I'm like what has happened to me?
24:14 - Liz (Co-host)
yeah, I read online a bit about the symptoms and that it can affect cognition and behavior, and you've also mentioned that you had quite a lot of nightmares and things.
24:25 - Imaarl (Guest)
So I was wondering if you could share a bit more about the other symptoms that are involved yeah, so, um, when I would be so, I would be in the sleep period for up to 23 hours a day, and when I was awake, I would come, quite childlike. One of the things that I would repeatedly do is I would, the time that I was awake, I would watch YouTube videos, but I would watch the same YouTube videos and repeat them over and over again, because that's the only thing that I can control and I know that that's going to be something that's going to be the same every time. So, just things like that very childlike, even when I would eat, it's just very childlike. I would keep repeatedly asking where am I, am I sick? What's going on? And just needing 24-hour care.
25:08 - Liz (Co-host)
Really yeah, well, and did you notice or did it have an impact on your parents? Because they, I'm assuming they must have been worried about you, or they must worry about you when you have an episode.
25:22 - Imaarl (Guest)
Yeah, I guess they were just extremely more worried when I would go out. You know, as I say, putting myself in vulnerable situations. If I do become unwell, you know I could just sleep anywhere. Unwell, you know I could just sleep anywhere. And if people around me aren't really understanding the condition, like my friends weren't aware of me being unwell when I went on holiday um, potentially, what could happen to me?
25:43 - Liz (Co-host)
yeah, and you've also mentioned that there weren't any medications that you could take. So is that still the case that there aren't any medications out there?
25:53 - Imaarl (Guest)
well, the doctors at the time. They they suggested various a few medications, but it was only a guessing game really. So they suggested lithium was one of the medications that they suggested. So my dad has bipolar disorder and he'd been on lithium for quite some time, so we was quite apprehensive of going on a medication when we didn't. One, we didn't know the long-term effects of me and, two, whether we knew whether it would really have any impact on my condition. Um, so we collectively, as a family I actually went against the medication that was offered for those reasons. Yeah, but there wasn't any medication at the time that was solely for kls what does lithium do for people with kls?
26:35
again they said it was just a trial. It was just a trial to see whether it would slow down the episodes or reduce the episodes.
26:43 - Liz (Co-host)
Wow, and I imagine you don't want to be like a test dummy for these things.
26:48 - Imaarl (Guest)
Yeah, so at the time, like I said, they one of the specialists said that it would probably my episodes would probably last for 10 years, but they didn't have no direct answers. Even with the medication, it was just basically trial and error and something that they didn't have a definite answer for. I wasn't willing to be dependent on the medication and then perhaps, you know, be worried every time if I didn't take the medication, and that's what I was worried about.
27:12 - Liz (Co-host)
Yeah, that makes sense. And so after university, where did you go or what did you do after that?
27:22 - Imaarl (Guest)
So after university, I went into work. So I worked for a couple of years. I've always worked and I still work now, but I've worked for a couple of years and then I got unwell again and that was my episode. That lasted for three years, but again, at that time it's not a recognized condition, it's very limited information, so I couldn't claim even though I was off work, I took sick leave I couldn't claim any disability benefits or any sickness benefits, so that had a big financial impact on me as well. Sleeping for three months, um, so yeah, that's what happened. Next I went into work, but I got on well again and that was the episode where I fell asleep for three months wow, and were work supportive, or did they give you any reasonable adjustments at that time at first?
28:10
they were quite supportive. Um, and then it was more about well, when are you going to come back? I can't give them a definite answer. So I just had to leave. Yeah, I couldn't give a definite answer. Well, it was my mum speaking on my behalf to them and she couldn't give a definite answer when I'm going to wake up. So I just had to resign when I did eventually wake up.
28:30 - Liz (Co-host)
Yeah, and what was that like having to leave your job because of your condition.
28:35 - Imaarl (Guest)
It was quite frustrating but at the time I knew it was for the best, because I couldn't give them the answers and I didn't want to seem like I was unreliable. And you know, at the time I didn't know whether I was going to be awake for long periods of time. I didn't know whether it was going to be every month, be something that would really impact me and I wouldn't be able to work long term. I mean, the doctors had that kind of outlook that you know I wouldn't be able to work and you know this would impact major parts of my life. And it was happening with work.
29:05 - Liz (Co-host)
In terms of your career, do you feel like you've had to take into account KLS, or have you just sort of chosen it and gone forward regardless of that?
29:19 - Imaarl (Guest)
Yeah, I've just always gone forward regardless of it and I always have not a lot of employers. I actually told about the KLS because, as I say, in my instance it would be. It wouldn't be all the time. I would have long episodes, but there would be periods of time, like a year in between, that I wouldn't have an episode. So sometimes I didn't feel it necessary to really explain until and I always thought I would just deal with it if I get on well, and that's what I did, going forward.
29:55 - Liz (Co-host)
And do you have any symptoms in between episodes, or is it literally just when you have the episodes?
30:00 - Imaarl (Guest)
absolutely no symptoms had. I had no symptoms and when I would like, I said it would be literally night and day. I would go to sleep and then wake up months later and when I would come out of the episode, it's literally like I go to bed that night, I wake up, I blink and I'm like I'm back. I literally wake up and I'm like, okay, I've been asleep. I look at my phone and I see the date has changed and I'm like, wow, okay, I've been asleep again.
30:25 - Liz (Co-host)
My gosh, I can't even yeah really imagine what that's like. I mean hearing you explain it. Yeah, it just must be so disorientating. And do you ever get used to that feeling, or does it feel very strange each time it happens?
30:39 - Imaarl (Guest)
it feels very strange, and when I do wake up, everything feels brighter, like I'm more sensitive to everything, so the sounds feel more intense. You know, the sky seems much brighter, everything's just bright when I do wake up, and I never yeah, I never get used to that feeling yeah, it's like hello, I'm awake again. Actually, yes, and I will literally. I literally use the shout from my bed. I'll wake up and they'll be like oh, she's back. Everyone be like she's back. Yeah, did you ever?
31:07
feel emotional in those moments yeah, in the um, the longer episodes, I would wake up and I would just cry hysterically because I'm like not again and when? Because, like I said at first, it was only two weeks at a time and yeah, that's a long time, but it's still manageable. You know, most people have an illness, a virus at that, for that length of time, but for sleeping for two months and three months and as my episodes were increasing, it was really really frightening. So when I would wake up I would just be like one, I would have an extreme headache so I'd have to take um cocodamol for that headache and just really disorientated. I don't know the day people have me to fill me in on birthdays, on you know important events that I've missed, and yeah, just, and again, people just assuming that I'm lying all the time.
31:56 - Liz (Co-host)
Yeah, that must be really difficult trying to actually get people to understand what it's like considering.
32:02 - Imaarl (Guest)
It is so rare yeah, I mean that long period. That's when you know, um, I don't know how, but the newspaper got wind of it and they, they wrote an article and a lot of the comments were just that I was lying. You know, they made a youtube about it and many of the people were just saying that I'm lying, I'm trying to get benefits, I'm just yeah, yeah, it's so frustrating exactly, and it's like I can't even claim benefits for this because I can't prove, I can't claim PIP, I can't. You know, it's yeah.
32:33 - Liz (Co-host)
I remember, um, so I got narcolepsy from the swine flu vaccine oh my gosh, which happened to quite a lot of people about 100 kids at the time and it was written in a newspaper article and there was some suggestion that there might be like a government payout at some point for some people. And I remember reading the comments under the article and it was like people will do anything for money they'll make up all these lies for money.
33:01
Come on wow, that's so interesting. From the vaccine yeah, I'm not against vaccines, though it was just obviously an unlucky situation.
33:10 - Imaarl (Guest)
Yeah, of course. Wow, I wouldn't even correlate that to get them two together, wow.
33:15 - Liz (Co-host)
Do you know why you developed KLS? Is that triggered by something in particular?
33:21 - Imaarl (Guest)
No, the specialist that I was under. He suggested that perhaps I had some sort of brain virus at the time. So I was probably unwell, run down and it went to my brain and that's perhaps what had happened. Another the same specialist suggested that maybe I banged my head on that night, that I was on the new year's eve, that I wasn't aware about, and maybe that triggered it. But there weren't no definite answers at the time of how it. They literally just said as random as it comes, this is random as it is gonna go, and that's been the case for me. Is it a genetic thing? Again, I literally don't know. Yeah, it's just so rare. There's just not enough research out there. No, not at all. I mean, there's more people. When I first got diagnosed, there was hardly anybody that I'd come across, and now there's like a whole community of people and I'm hearing more and more stories of people that have been diagnosed stories of people that have been diagnosed.
34:19 - Liz (Co-host)
What's the kind of most common or even most severe type of careless that you hear? Is it similar to how yours presents, or is it?
34:25 - Imaarl (Guest)
just sleeping for months, months at a time, long periods of time. Um, yeah, some, like I said, some people it will happen to. Every couple of weeks they go into sleep episodes. So those people, I would say, are a lot more severe than my cases because they cannot function normally. Yes, they're missing out on large periods of school or, you know, college, university.
34:50 - Liz (Co-host)
And I would love to know more about how it impacts your social life and also your experience of being someone who didn't drink through university in those years when alcohol is a very key part of socializing.
35:04 - Imaarl (Guest)
Yeah, so it was my time during university and you know, in the UK we have a big drinking culture. So during that time a lot of people just assumed that I wasn't drinking because I was just, you know, I just didn't want to drink. So a lot of people try and force alcohol on me. So I remember like I was going to the clubs and people were trying to pour the bottles of alcohol on me and I'm like I literally cannot drink and that just didn't seem to be enough for them. I would have to come up with excuses of why I can't drink, have to say I'm on medication or, you know, I'm severely unwell, but people just wasn't really respectful of why I wasn't able to drink. And I still socialised, I still was invited places. Yeah, I don't think it really did impact my social life, so to speak. I just had to adapt to, you know, not being able to drink.
35:57 - Liz (Co-host)
Yeah, and do you think KLS impacts your social life in general, or is it just when you have the episodes that come up?
36:05 - Imaarl (Guest)
I would just say when I had the episodes coming up. Yeah, because I'm missing large periods of time. The first episode that I had, I actually fell out with a close friend because she didn't believe me that I was sleeping and I missed her 18th birthday party. And you know, she called me during the episode and I did answer the phone but I was completely spaced out and she was like you know where are you?
36:29
You're not at my birthday party and at the time because I was unwell, I couldn't explain why I wasn't there and even when I woke up she wasn't very understanding of. You know, I've just been sleeping to her. That wasn't a good enough excuse. So I guess in that aspect again, people assuming that I'm lying, um, or attention seeking so in that aspect, yeah, it did kind of impact my social life.
36:51 - Liz (Co-host)
And when was your last episode that you went through? I would say about seven years ago, okay, so quite a long time, like when you were in your late 20s. Yes, yeah, and at that time obviously you were a little bit older. Then did you find that people had a better understanding when you talked to them about it?
37:12 - Imaarl (Guest)
No, even even today when I speak to people, because it is so rare, again people just assume that I was just sleeping and that's it, just a peaceful sleep, and that's it. And again, that's part of, I guess, my kind of thought. Really, because I didn't, really I would just laugh it off because it was a lot to get over. It was quite traumatizing those months that I was sleeping. So when I woke up I just sort of laugh it off. I didn't want to really talk about it, make a fuss, and that's just the way it.
37:41 - Liz (Co-host)
That's just the way I brushed it off yeah, and even now, do you talk openly about KLS to the people around you, or is it something that you hold a bit kind of closer, especially if you're meeting new people or like dating, for example?
37:56 - Imaarl (Guest)
I do talk openly about it, but it's something that I'm still a bit scared to talk too much about it because I don't want it to ever happen again. And I know, like, as I say, I'm part of the KLS group and there's people that haven't had episodes in 10 years and then have had episodes, so I'm still aware that it's such a rare condition. It could still happen and that's what still scares me. Even though I haven't had an episode for a long time, I've still got this diagnosis and it still could happen.
38:26 - Liz (Co-host)
Yeah, and do you think it impacts your mental health?
38:31 - Imaarl (Guest)
I think so, yeah, because, like I said, it's just always having that anxiety of this could happen. No one's going to believe me. I don't even know how to articulate it. I'm having dreams, I'm, you know I'm and the dreams. When I say I'm having dreams, they're really, really vivid. So I'm dreaming of dead people that have passed away, like you know, friends that have passed away, and in my mind I'm really seeing them in the dreams and you know, everything just seems so real to me that I can't differentiate between reality and what's a dream, and that has an impact, definitely.
39:04 - Liz (Co-host)
Yeah, I can imagine that it's always in the back of your mind like this could happen again.
39:10 - Imaarl (Guest)
Yeah, yeah, yeah. Whenever I get a little bit too, a little bit more tired than usual, I'm like okay, when I wake up in the morning I'm doing that blinking thing again and I'm like, okay, it's just tiredness, okay, I can breathe.
39:24 - Liz (Co-host)
Yeah, just thanking your lucky stars that you woke up and you're feeling present.
39:29 - Imaarl (Guest)
Yeah, exactly. And even when I because, as I say, I didn't drink for 10 years. And even when I um, because, as I say I didn't drink for 10 years and even after 10 years and I did drink, I only, like my mom, and everyone around me was saying you're so stupid, why would you do that? You can bring one episode. And I guess I only drank for that first time because I didn't kind of want to have it hanging over me like I um, like I had always had it in the back of my mind that the doctor, the specialist, did say 10 years. It's been 10 years now and I just kind of wanted to test it. Silly as it sounds, I wanted to kind of test it out to see whether I was, whether I did still have KLS I mean, I always have it but I didn't sleep after that time, but it was still like just to test it out, because it's this anxiety that I always still have.
40:12 - Liz (Co-host)
Yeah, I can understand that. It's like you had that number in your head and then when you got to the end, you were like, okay, this might be, it might be gone. Now I just want to really test that out and hope for the best.
40:24 - Imaarl (Guest)
Yeah, and there was loads of times throughout my teenage years where I would test out alcohol and you know I'm only young and you know that was having that willpower to be, you know, a teenager. You know my first time clubbing and all of that and trying not to drink. And then you know people are egging you on and there would be times when I would actually say, okay, just a sip, and that would be me finished for a couple of weeks or a couple of months and that was quite difficult because again then that's like a self-inflicted thing. Then I've become unwell and it's self-inflicted and it's my own fault that time and then that will have a really, because it's shameful and it's, you know, you feel so much guilt because you've had a part to play and now you've been unwell.
41:04 - Liz (Co-host)
That's so hard, because when you're a teenager, drinking alcohol for a lot of people, for most of us, is like a really it's kind of like a rite of passage or something that you want to experience. And also at that age, yeah, you're surrounded by people who are drinking and it's really hard to say no to that, but then to know that that would then put you into an episode yeah, that must have been really tricky like still be kind to yourself in those moments exactly, yeah, and that that was only, like I would say, about twice that that happened.
41:43 - Imaarl (Guest)
I felt that shame and that you know that embarrassment, that, okay, people saw me drinking and they're gonna know that this is why I'm sleeping, but yeah, it was just having that willpower that I really had to. You know, stick to, because I didn't want to ruin my life.
41:58 - Liz (Co-host)
I didn't want to miss so many important events yeah oh, can you talk a bit about the stigma around KLS, if there is one?
42:10 - Imaarl (Guest)
yeah, I would say the stigma is that people just assuming that I'm lying in the early stages people just assumed that I was high or I was just dependent on drugs and alcohol, that I was just trying to stay off college and ultimately that I was just lying and making it up for attention and that's. I think that's a big stigma around it and that is just the sleep condition that you're just sleeping, so it's like it's no harm, it's not going to have a mental impact on her. She's literally just sleeping and that's a big stigma.
42:41 - Liz (Co-host)
And that's the case with so many sleep conditions. I think it's like the butt of the joke.
42:46 - Imaarl (Guest)
Yeah, and actually it's very traumatic for people that have sleep conditions. You know you literally miss so much of life and it's so exhausting to have Literally. It's so exhausting Even when you're not having an episode. Just the thought that you could possibly have an episode is exhausting. What do you think needs to be done to as a sleep disorder as such, more a neurological disorder or brain disorder? That should be the focus Because, say, when you mention a sleep disorder, people are not really understanding, very, very dismissive, and some of the other symptoms shouldn't be focused on as well. So it's not just sleep, it's the nightmares. You know the childlike behaviours, you know you're disorientated, and some of those symptoms should be focused on and you've talked a little bit about being part of the KLS community.
43:45 - Liz (Co-host)
Yeah, how did you get involved with them and what impact has that had for you?
43:51 - Imaarl (Guest)
um, don't know how I managed to get involved them. I think they might have reached out to my mum and they were really really. It was really amazing to see that other people were well amazing maybe the wrong word, but it was really interesting to see that there was other people that were experiencing the same as me, because I felt so isolated when it first happened to me and just getting updates. Even though I haven't had an episode in a long time, it's really nice to see updates on research that has taken place or study groups that are taking place, and that's been really helpful for me and even I've been able to in the KLS group. I've't had episodes for some time now and I've gone on to do to live a pretty normal life, which wasn't very, very hopeful for me in the beginning when I was first diagnosed. So just being able to share updates in the KLS group has been really nice.
44:48 - Liz (Co-host)
Yeah, and is there much research out there about KLS?
44:52 - Imaarl (Guest)
I think they're doing a lot. There is a lot more research now it's still limited but there is a lot more and KLS are really working on pushing out research regarding, yeah, kline 11s. There is a specialist in Guyton, st Thomas's thatLS. It sounds like it's such a rare and under-recognized condition. Yeah, and I guess I need to do some more research myself to see whether there have been any updates with medication. I know from what I read in the KLS group there's still talks about lithium and quite similar medication that was suggested to me but there wasn't very. It was still kind of a trial medication. It wasn't a cure. I know that there hasn't been any. There's still people that there's. From what I'm aware, there's nobody that has a medication that stops the episodes at all, so there hasn't been many much progress in medication not yet.
45:54 - Liz (Co-host)
Fingers crossed, yeah, fingers crossed. And do you know if there are any other triggers apart from alcohol for you or for people in general who have kls?
46:05 - Imaarl (Guest)
well. From my understanding, it could be stress, um, it could be alcohol substances, a virus if you become unwell.
46:13 - Liz (Co-host)
These are just the triggers that I'm that I'm aware of yeah, okay, so there's a few different things, but I guess sometimes it's hard to pinpoint exactly what triggered it again with playlist.
46:24 - Imaarl (Guest)
It's literally just like a guessing game, like throughout my time when I, whenever I'd be in hospital, it was literally just a guessing game. Well, we think it could be this, possibly this, but ultimately we just don't know.
46:36 - Liz (Co-host)
And that's the reaction that I had for many years when I was in hospital with PLS what is that like to never really have clear answers on either why you have the condition or why it was triggered.
46:49 - Imaarl (Guest)
In that occasion it was just um it was just frustrating really and it just played on the anxiety that you know. You just don't know when this is going to happen, you don't know how long for. There's literally no cure for it. It's not like you can go into hospital and you know you can have an injection or you can have something. There's just nothing for it. So that's it just played on the anxiety really. I always say that I'm so grateful that I haven't had an episode for a long time and I always joke saying I literally wouldn't have survived it. I probably would be very suicidal had this continued and had I had more episodes, because it's just not something that you can live with long term. And every time I lock into the KLS group and I see people are in their episodes and I'm just like I literally don't know how I would cope or how I'd still be here today, and I always joke about it. But ultimately I'm being serious. I just don't know how I would survive if I still had this condition.
47:47 - Liz (Co-host)
Yeah, it sounds like it's a really hard thing to go through, especially when it's on a regular basis. Yeah, definitely, definitely. How do you manage the anxiety day to day, thinking that you could have an episode and not knowing the causes or the triggers of that?
48:07 - Imaarl (Guest)
I literally just try and put it out of the back of my mind. I try not to think about it Until somebody brings it up to me. I try not to think about it. As I say, I read an article a few weeks ago where a person a man has said that he hadn't had an episode. There was actually two people who said they hadn't had an episode in 10 years and then they had an episode and that I couldn't sleep for a couple of days after that because it's just the thought of oh, I thought that I'm literally free of this, but actually I still have this diagnosis and you know there are not many answers that can, that have been given to me and it could happen at any time, yeah, and so does the likelihood decrease of having an episode if you haven't had one for x amount of years around 10 years, did you say?
48:54
yes, yeah, that's what I was told by um the specialist, but again, it's a guessing game. Um, yeah, the guessing game. Yeah, and there are. They told me that, due to my age, it's unlikely that I will have further episodes.
49:09
But again, in the KLS group there are people that are older than me that are still experiencing symptoms, so I can never be too sure yeah, it's like facing the unknown, which can be really difficult sometimes, yeah, I mean not to not have an episode after 10 years and then and then fall asleep for weeks or months at a time would literally, I literally don't know what I would do if that happens again. Yeah, and what do?
49:33 - Liz (Co-host)
you think the future holds for you in terms of, you know, having your own family, something you think about within the context of managing KLS as well or are you kind of focusing on your career, or what does that look like for you?
49:50 - Imaarl (Guest)
Yeah, I would like to have my own family. I guess I haven't really thought about how KLS would impact that because, again, childbirth is, you know, a traumatic. It can be a very traumatic experience on the body. It's very strenuous on the body. So I don't know how that, whether that would trigger further episodes or how that would impact my body. I haven't really thought about that, but it is something that I would like to do in the future and again, when that time comes, I would just deal with in the future and again, when that time comes, I would just deal with.
50:19 - Liz (Co-host)
You know that when it comes, yeah. So your approach is more like pursue the things you want to do and just deal with it if it happens in the moment, yeah, I mean, it would be.
50:29 - Imaarl (Guest)
It would be terrible if I, you know, had a child, and how would I manage? Because I would literally need 24-hour care and I wouldn't be able to look after a child during those episodes. If it was, to happen.
50:40 - Liz (Co-host)
Is that something that you kind of think about in detail? Or yeah, is it? Or like plan, for I know that's because it's like a future- thing.
50:51 - Imaarl (Guest)
It hasn't been something that I've really thought about in detail, only when I said, like I said, when I read that article about the two people that didn't have an episode for 10 years, and then I was like, wow, like if this happened now, that I don't know how I've navigate that, and I did. It did cross my mind, but it's not something I've really thought about.
51:10 - Liz (Co-host)
Yeah, yeah, I see, because you're kind of thinking like I haven't had it for this long and the likelihood of having another episode is very much reduced now.
51:19 - Imaarl (Guest)
Yeah, but again, like I said, it came on randomly and the specialists believed that I had a virus at the time and you know I could get a virus again, or yeah, and that's why even during the pandemic, I had been reluctant to get the vaccine, only because of the virus aspect, getting a virus because they had told me that I've had a brain disorder. And when I explained this to my work at the time, to my manager at the time, she had not been quite understanding and that's when I had. That's the only time again where I had to further explain. Well, you know I had this condition and that's why I'm reluctant. But yeah, the question of the vaccine was quite tricky as well to navigate with KLS.
52:00 - Liz (Co-host)
Yeah, that's understandable.
52:02 - Imaarl (Guest)
Yeah.
52:08 - Liz (Co-host)
So a question I usually ask at the end of the episode is if you could press a red button and completely get rid of KLS and never have experienced it, would you do it, and why?
52:20 - Imaarl (Guest)
A hundred percent. A hundred percent, I mean you just want to have perfect health and you know to have something that interrupts your life so much and interrupts your mental health, your social life, everything, and nobody really understands what's happening and why and you have no answers. It's you know.
52:38
It can really change and impact your life yeah, yeah, so you'd be pressing that red button pretty quickly, definitely and I kind of feel guilty as well because, as I say, I haven't had an episode for so long but I haven't really spoken much out about it. But it's literally due to fear of, you know, it happening again and perhaps, I think, in the future I would like to speak more about it. But it's literally due to fear of, you know, happening again and perhaps, I think, in the future I would like to speak more about it and raise awareness. Because for now I feel like a lot of people just dismiss it as this sleep disorder and it's not really serious, like a lot of sleep disorders are just dismissed, yeah.
53:12 - Liz (Co-host)
Well, I'm sure our listeners will be very grateful to sharing your story, because it's not something that people know that much about and for the people that have careless and they listen to this, I'm sure they'll be happy to hear someone advocating for them.
53:27 - Imaarl (Guest)
Even now, it's still quite hard to explain what I experienced during that time.
53:33 - Liz (Co-host)
Yeah, yeah, I imagine, because it's such an intense experience from the sounds of it, and so to explain that in a way that people understand it it must be difficult, but you've done a great job of that today and a lot of the episodes I'm having to recall from what people have told me during that time as well, and then piece things together, kind of like if you've experienced being drunk when you've been drunk, and then someone says, do you remember when you've done that?
53:56
and then I'm like, oh okay, yeah, piecing back what has been reality and what's been a dream yeah, yeah, we all know that feeling, yes, more extreme for careless, but the drunk one I can relate to. Yeah, yeah, is there anything that you think you have gained from careless?
54:15 - Imaarl (Guest)
I think the only thing I guess having willpower. I know that I can, you know I have the willpower to say no now, which wasn't so easy in the beginning. But if something's not right for me, then it's not right and I'm able to. Just I have a lot more, I guess drive, because I know that this could have ended up so much worse for me and I've seen what I've been able to do. I mean, I've gone through university with this condition, so I guess I don't really have much excuse otherwise.
54:45 - Liz (Co-host)
Yeah, you've definitely shown that you can get through the hard times, for sure, exactly, yeah.
54:52 - Imaarl (Guest)
I guess just believing that you know this can't be long term and I can do things when a lot of people around me were quite negative about what, what I was capable of. So I guess I've been able to really show my strength in that I am capable, regardless of the diagnosis yeah, and having that faith in yourself as well, yeah, definitely, yeah, amazing.
55:13 - Liz (Co-host)
Well, thank you so much, jImaarl, for sharing your story with us. Thank you, yeah, it's soal for sharing your story with us. Thank you, yeah, it's so important to raise awareness of these things, and you've done it in such a lovely and clear way and really explained it for people who don't understand it or don't know about it, and for people that have care less, yeah, they will love to hear someone sharing that and advocating for them.
55:37 - Imaarl (Guest)
Oh, I hope, so I hope so.
55:39 - Liz (Co-host)
So at the end of the episode we like to get people to say happy napping everyone as a little bye-bye. So after three, one, two, three, happy napping everyone. Yeah, thank you.
55:54 - 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.
