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Narcolepsy

sleepysunsleepysun Posts: 4Member Connected
I haven’t seen a lot about narcolepsy on here, and considering that’s the condition I have I thought I’d share some experiences to get some conversation going because it’s always helpful to see others you relate to. I am only young, and I have narcolepsy with cataplexy. For those of you who don’t know, narcolepsy is a sleep disorder which affects your ability to control your wakefulness and results in sleeping in very inappropriate situations. Of course everyone’s experience is different; some people struggle to sleep at night but sleep lots during the day and are often misdiagnosed with insomnia, some don’t suffer with cataplexy etc. But I will be talking about my personal experience, which is not any of those. 
My symptoms first started at around 11, with not being able to be in any moving vehicle without sleeping almost instantly. My first doctor dismissed it as me being a lazy teenager, and my family made jokes that I had ‘car narcolepsy’, but never believed I could actually have the condition.
Over the next year or so, these symptoms worsened and began to affect my school work. I would fall asleep in almost all of my lessons- missing out on vital information, getting laughed at, and misunderstood by both peers and teachers. Still, nothing was properly done and it was viewed as a result of teenage years and stress. 
This continued to progress and cataplexy began to emerge. I would now sleep in most lessons, sleep through exams and get bad grades to every teachers confusion because of my normal high ones, sleep with my one year old sister on my lap while feeding her, sleep while watching TV or reading books or writing, even sleep at parties and concerts while standing up, and sometimes while walking on the street (though I would continue to walk and often be confronted by concerned passers by). 
For those of you who don’t know, cataplexy is a symptom of narcolepsy that isn’t universal but occurs in some cases, and it involves muscle weakness/loss of muscle control/lightheadedness etc. as a result of intense emotions such as laughter (what I had) or anger. Whenever I laugh, I temporarily lose aspects of my vision until I stop, and in less severe cases my knees buckle and I feel lightheaded but after holding onto something and composing myself I am normally able to regain control. In more severe cases, I have been rendered unable to properly move for around 20 minutes on my own sitting down with my head flung back, vision in fragments and dizziness, or have had to have people surrounding me hold me up as I threaten to collapse/stumble unable to compose myself. In my opinion, cataplexy is one of the most awful parts of my narcolepsy along with, of course, how much time I waste sleeping and how it affects my ability to interact with the world and do things I love and know I should be able to do if I could stay awake. 
There is virtually no positives to the condition in my eyes, other than never having a difficulty sleeping (because unlike some people, I can always sleep at night no matter how much I have slept in the day), and my vivid lucid dreams. 
Because of these vivid lucid dreams and my ability to sleep so easily, sleeping has become a huge coping mechanism for me when I am in a bad place and struggling emotionally. It is a quick and easy escape which is accompanied by interesting dreams that in good cases I can control and I know are dreams and am able to do anything I wish with, and in bad cases are vivid and disturbing nightmares that I remember and are often described by others as very unpleasant and concerning. 
This in no way, however, means I enjoy having the condition or that I wouldn’t like to sleep less. All it means is that I have began to shut the world out so much and feel so dissatisfied with the lack of control I have over whether I am able to remain awake to do things, that I have begun to turn to the one thing that is taking over my wakeful life for comfort and release from the difficulties that it is bringing itself. 
Which when worded like that, doesn’t sound comforting or healthy at all.
I would like to make sure to say that this condition hasn’t rendered me incapable of living a happy life. I am currently on ADHD medication for my narcolepsy (there is nothing to help the cataplexy, and narcolepsy medications aren’t developed and tested well enough for someone my age but this medication has been proven to improve alertness and wakefulness in narcolepsy patients as well as being safe and accessible) which isn’t removing the symptoms by any means but is making them easier to manage.
I was concerned about my eligibility to obtain a lisence and a job in an area of psychology, but every professional I have spoken to is confident that although it will make things harder, it is most definitely possible for me to achieve the same things anyone else would.
To anyone who thinks they may have it, my best advice would be to talk to someone as soon as possible, but also not to trust your first doctor because as you saw mine was not correct by any means. You know your body better than anyone, trust it if you think something’s wrong. I would also say that if you do have the condition, it isn’t as detrimental as the term ‘incurable lifelong neurological condition’ makes it sound. You can live happily and achieve your dreams no matter how large they are, and there is hope out there. Keep thriving as who you are! And if one treatment doesn’t work, don’t be afraid to try more, everyone is different and it doesn’t make you any less valid to be seeking help or be on medication. 
Who knows, if you have vivid interesting dreams like me, you could become a bestselling author adapting your dreams and educating those on the condition along the way. Your condition could fuel your career and become an inspiration! Stay optimistic. 
I hope this helps at least one person and everyone feels welcome to share their stories. I’d love to read them. 
Best wishes
sleepysun 
xxx 😴

Replies

  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Thank you for sharing this with us @sleepysun- I've definitely learned something from it, and really interesting to hear how it can act as a coping mechanism too! 
  • BeccamoonBeccamoon Posts: 1Member Listener
    I have narcolepsy, i was diagnosed a year and a bit ago after ongoing investigations into my tiredness and a missdiagnosis with M.E. I am 17 and currently doing a levels and struggling a lot. As well as struggling with a levels I’m also struggling with my narcolepsy and feeling completely alone, I have tried to explain to my friends numerous times but they still call me lazy and I was wondering if you knew of any sites or anything to get in touch with others with narcolepsy Because I believe it’s time I found some support from those who understand. Another question I have is around what age your cataplexy started to develop, because like you from very young I’ve never been able to stay awake in a car. At 14 I started falling asleep in lessons and by 15 I couldn’t stay awake in them and ended up leaving secondary to be home schooled. I currently do not suffer from cataplexy but I’m aware it’s something you can develop and I’m scared I might. 
    Thank you for listening 
  • dolphinsdolphins Posts: 4Member Listener
    Hi there. You folks are amazing with your courage. I have Narcolepsy. After glandular fever at 13 it left me with narcolepsy. Being Irish nobody had a clue what was wrong with me at that time back all those years. (I am now 43!). For years I was passed around in the mental health sector cos they thought it was all my own doing or something like that. Until I was 21 I saw a program on telly and knew that was me. I had to pay lots of money to see a private neurologist in Dublin. Medicine available never did much at all for me. I struggled in school, slept through exams, can't imagine all the jibberish I must have been writing in some papers...cos that's what happens to narcoleptics, they dream while still half awake and everything comes out on the paper! Tried to complete my exams from home liason papers but was not able to. Years of feeling so lonely. Cataplexy was worst through early years but into my 30's it lessened, though I still get it when very tired. Dreaming really only fully set in for me from age 17, horrible nightmares, uncontrollable dropping off in all kinds of places. Still the same today. Difference now is that I learned to accept it, to acknowledge that I have something not right and to adapt my lifestyle around it whenever possible. That's not always possible!! It has a mind of its own and decides whatever it wants. I embrace good friends who are considerate. I don't mind the odd giggle over it though. They don't mean to be rude. But regarding different types of Narcolepsy...definetly affects people differently. So many people have it harder than me. I have been off the medicine for 10 years now and it hasn't been easy. But taking it into my system when it's not doing much is pointless to me. DVLA refused me driving license too. I hope you are all keeping well and not letting it drag you down. It does restrict us in our social life and work enjoyments etc. But it's best to adapt as much as possible. Make sure those closest to you know what is wrong, do not be embarrassed either. 
  • sleepysunsleepysun Posts: 4Member Connected
    @Beccamoon Hi! I’m sorry that your family are being less than understanding- a vast majority of mine are the same, even now that I have a diagnosis and medication. In terms of websites I’m not sure what I would be able to provide. I’m not sure where you are from, but for me I just spoke to my local GP a few times before they gave in and realised it might be something, and referred me to a sleep specialist. Whatever does come next for you I hope everything is okay. 
  • sleepysunsleepysun Posts: 4Member Connected
    @dolphins Hi! I wasn’t aware narcolepsy could stem from something like glandular fever, as mine is purely type 1 and biological, but that’s very interesting to know about. School is very difficult, though I was lucky enough that my meds are helping. My cataplexy isn’t wearing off- in fact since I last wrote I experienced which was undoubtedly the worst I’ve ever had, and resulted in me being on the floor unable to get up for a while- so I sincerely hope it will begin to deteriorate with time (the professionals I have spoke to have said that should be the case). My dreams, as I mentioned before, are still a key part of my daily life and happen frequently. I think my initial post was before this but I’ve had a sleep study now and I entered R.E.M. sleep in a whopping 3.5 MINUTES! For those looking to compare, the average for someone without the condition is 60-90 minutes, and the average for a narcoleptic is 15. I will have to wait and see in regards to driving, as it isn’t something I’ve actually looked into yet. I wish you luck and I’m astonished that you’re still holding on strong without medication. Hope everything is well!
  • dolphinsdolphins Posts: 4Member Listener
    Good morning! If yer awake! Not to worry if yer not, yet probably away in another world. About my glandular fever at 13....it is a surprise really isn't it. But it's actually well known that episodes of fevers like this kill off that important chemical that us narcoleptics lack now unfortunately. In fact, listen to this....in Ireland, after getting a flu injection (pardon my memory but I think it was the swine flu one years back), several innocent people were left with Narcolepsy!! The debate is still in the courts over whether it totally was the injection that caused it. I was very sad to hear that, because I wouldn't wish it on anyone. I pray ye all find ways to adapt and accept and not let narcolepsy get ye down. Be strong, I know it's not easy. I will never forget my past! For me I spent too many years not accepting it. There still is too much ignorance around it. I still can't get over the looks I get when I fall asleep in the middle of socializing. Anyone else feel this? I don't know where ye all live, but there is a Narcolepsy UK website. Check it out and see if ye can get any benefit from it. Have a good day my friends.
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