Undiagnosed, and unsure if I have narcolepsy type 2
Hi all,
I'm new to this forum. I have suspected for some time that I have some kind of sleep disorder. I live in the UK and my gp has recently referred me for a polysomnography.
I have had sleep issues for years. I'm 35 and had issues since I was about 4. I used to have awful night terrors and visual hallucinations, in which we were just told I'd "grow out of". They did seem to stop when I started school at aged 5.
Although I remember coming home from school and falling asleep quickly half way through changing my clothes, I'd frequently wake up confused, not knowing where certain people were, even though I remember now they were right infront of me!
I then had other issues, becoming inattentive, struggling to keep my focus, easily distracted, anxious and worried often. I just lived with this and didn't say anything anyone.
During my teens ended up having menstrual cycle issues, easily fatigued, mood swings, feeling low and anxious, but this was all put down to hormones.
I've noticed since late teens/early 20s more sleep issues, so frequently waking up during the night, more sleep paralysis episodes, auditory and visual hallucinations upon waking usually, nightmares/disturbed dreams, waking up laughing, confused when waking up and for some time after, sleeping a lot and daytime sleepiness! I've noticed occasionally recently acting out my dreams, usually when they're stressful in nature and I feel angry about something.
I also find a dream frequently and it seems that I can go into dreams quite quickly after just going to sleep. Due to all of this I'm frequently tired, don't feel rested after a nights sleep or naps, napping frequently, feeling dazed and not very alert and easily depressed and tearful.
If you've made it this far, then thank you! I'm just confused about my symptoms, I'm also on a waiting list for an ADHD assessment, and I'm aware that ADHD and narcolepsy can coincide together. I'm wondering if anyone else can relate to any of this? Is asking for a polysomnography the right move or do I need to be referred for an EEG or something? Any advice and ways of coping with all of this is welcome!
Thanks 😊
Hi
. It has been a few months since you posted, so I thought I would check in and see how you are doing. Did you ever get any diagnosis or are you still undergoing testing? Thinking of you and wishing you the best. - Lori (Team Member) Hi, thanks for checking in! I attended my sleep study on October 16th, I'll receive results on November 16th, so I don’t know anything just yet! I've been prescribed melatonin, which doesn't do anything and zopiclone for when its necessary, I still don't get a full night's sleep even when taking 7.5mg of zopiclone! I am glad you finally got your sleep study done,
, and I hope it leads to an accurate diagnosis and more effective treatment. Melatonin is hit-or-miss. It works really well for some people and not at all for others. Because it is not FDA regulated, there is also no way of knowing exactly how much you are getting each time. You almost have to stuck with one brand and adjust the dose until it's effective. For some brands, it might be 1 mg. For others, it might be 5 mg. I hope Zopiclone at least helps a bit and that you end up with something better when all this diagnostic stuff is done. Thanks for the update. Keep me posted, if you don't mind. - Lori (Team Member)
Thanks so much for inquiring about the symptoms you are having. If you'd like to read an article on narcolepsy and how it is diagnosed you can find more information here: https://narcolepsy.sleep-disorders.net/diagnosis It sounds like you are experiencing excessive sleepiness during the day and other symptoms that would suggest a sleep disorder, such as narcolepsy. You are on a good track right now getting a polysomnography. They will use this to rule out other sleep disorders. It can be a long road but it is worth it to get to treatment and increased functionality. Please keep us updated on your situation, and best of luck!
I also experience ADHD symptoms and narcolepsy has made it worse. If you'd like to read more about the connection between narcolepsy and ADHD you can find an article on the topic here: https://narcolepsy.sleep-disorders.net/clinical/mental-health-disorders Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)
