Hi guys, I have just learned a bit about narcolepsy in the past few days and realised it's a lot more and different than the idea of it I'd always had and am starting to suspect I may have it. I have yet to see a doctor about this or have any tests, that is of course on my to-do list now, but I wanted to share my experience and see if it sounds likely to be an avenue worth pursuing (I have other chronic health issues and know from experience that simply asking a gp for a test is not always enough to get diagnosed and treated for something)
I've had issues with sleep since my mid teens, transient insomnia and hypersomnia, I was diagnosed with generalised anxiety and depression in my early 20s and medicated (series of various antidepressants) and then later diagnosed with ADHD in my late 20s and put on dexamfetamine which is all I'm taking at present and it is helping me so much more than any of the other medications did, I am able to have energy and complete tasks where before I was often bedridden much of the day. However there are still unexplained and frustrating symptoms that doctors have not been able to help with.
I either have trouble getting to sleep and wake up frequently or I sleep very deeply and feel horribly groggy on waking regardless of length of sleep. I have phases of one or the other. My dreams are very vivid and often very strange, I don't get nightmares per se but I wake up disoriented from the barrage of nonsense information and this can happen even if it was only a short nap. A lot of days I struggle to get out of bed because my mind and body both do not want to shake the sleep off and even once I'm out of bed I will fall asleep on the couch mid-getting ready for work sometimes multiple times. I usually do not fall asleep at work or during the day after this but it has happened rarely.
The most concerning aspect is that sometimes it's like my brain just hasn't fully awoken at all - I am lucid, but horribly spaced out like my head's full of cotton wool, my body feels numb and my limbs weak. I am not paralysed and can still walk around but barely do anything more than that. When this happens it's often for the whole day or until I have a nap which can sometimes "reset" it and I will wake up more fully and alert. I've had a home doctor visit me during one of these episodes and they had no explanation and said I seemed healthy and normal.
Could this be narcolepsy? Does anyone here experience symptoms like this? I am new to learning about the condition. I don't experience anything I would categorise based on my knowledge as sleep paralysis or cataplexy (I don't have physical weakness from laughter or strong emotions) and many of my other symptoms are things that only happen some days, not every day. I want to be able to tell my doctor as much as I can and be ready to advocate for myself if needed. Thank you for reading!