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Suspected Narcolepsy

Hello everyone!
I have been suspecting I have narcolepsy for a couple of years now and finally began seeking help as falling asleep at my desk is no way to keep a job.
I wanted to share some of my symptoms to see if anyone can relate and also let me know if it sounds like narcolepsy may be to blame.
I first experienced troubles with sleep and staying awake at the age of 16 as I would often really struggle to stay awake on the bus and in class. I went to the doctors about this, ran a few blood tests but they found nothing and then the tiredness reduced on its own.
Fast forward two years to when I was 18 and I had just got home from a sleep deprived week in Magaluf and experienced my first hallucination when falling asleep. I remember being half asleep and seeing what I thought was my brother standing at the foot of my bed and he would not respond or move when I spoke to him. In my dazed state I ended up running at him and the hallucination stopped. I shrugged this off as temporary sleep deprivation.
Soon after this I got my first fall time job working in a call centre and always felt exhausted and stressed out as I could not sleep at night. I don’t remember experiencing many hallucinations or cataplexy during this time but was definitely always tired.
When I was 20 I went to university and this was the stage at which I realised something was not quite right. During freshers I was understandably very sleep deprived and the hallucinations at night were becoming more frequent and more intense. They were reduced significantly when freshers came to an end and I was no longer drinking all the time and had a reasonably good sleeping pattern.
However, despite eating healthy, exercising regularly and focusing on uni work the daytime tiredness remained and I started experiencing random sleep attacks during lectures and seminars. During these sleep attacks it was almost impossible to stay awake and it felt like my head kept falling and I was experiencing minor visual hallucinations. I also began to experience cataplexy as my leg would randomly give way when walking (usually when I saw someone I knew or didn’t want to see).
I finished uni in June and have began working in a job which is mainly office based and struggle to stay focused and just feel tired and irritable all day. Most nights whenever I try to sleep I have weird vivid dreams for about an hour and experience very tactile and auditory hallucinations accompanied by paralysis. I am lucky to get 4-6 hours of sleep per night and it’s very fragmented.

Can any of you relate to any of my symptoms and have any suggestions for how to handle them?
I am currently trying to see a sleep specialist but that could take some time.

  1. Hi , thanks so much for sharing! I'm sorry that you've dealt with these symptoms for so long without any answers. Hopefully others in the community will chime in to share their suggestions but in the meantime, I will link you to a few diagnosis stories:
    https://narcolepsy.sleep-disorders.net/living/tiredness-diagnosis

    https://narcolepsy.sleep-disorders.net/living/finally-diagnosed

    https://narcolepsy.sleep-disorders.net/living/bumpy-diagnosis-road

    Thanks again for sharing your story. I hope that you are able to see a sleep specialist soon and get all of the answers that you deserve.

    1. Sorry for the ramble, just wanted to give a full picture.

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