Suddenly stared feeling sleepy all the time, scared of developing narcolepsy

[AutumnLeaves]

Hi all, I'm just wondering if anyone has had similar experiences with symptoms like this or anything like that.

I'm 25 years old and I've never had problems with sleep before, but relatively recently I started to wake up sleepy and groggy even though I had slept 8 hours through the night. Then I started looking into narcolepsy, and that same night had terrible insomnia. Even when I finally got drowsy, my body would jerk and I would be awake. Ever since then I haven't gotten a single night of good sleep. I either spend my time in a weird half relaxed, half awake state where I can hear everything around me and feel my body twitch (my face, finger, foot, shoulder), but time passes like I've been asleep, or in short burst of deeper sleep, usually only 2-3 hrs per night, if at all. I'm exhausted from the moment I wake up and just wish I could take a nap to fix this, but every time I try to nap, I just fall in to the same half sleep/ half awake state as I described earlier and I'm just as tired when I wake up. I don't think I've had any sleep paralysis or hallucinations (at least not visual ones) and haven't had any cataplexy episodes (unless the twitching counts as early symptoms), but I'm really scared I'm going to start developing them. The sleepiness is just so distracting and I feel so spaced out and not like myself at all. I just want to know if anyone has had a similar experience or if you think I should try to see a sleep doctor.

I appreciate any response!​

[MJunderway]

Hi!

Sounds more like anxiety than narcolepsy. I’ve had narcolepsy since childhood (associated HLA allele) and I also have sleep disruption due to anxiety and the two are very different. Sometimes my anxious sleep will make my narcolepsy worse the next day but my sleepiness with narcolepsy is nothing like a bad nights sleep.

When I first started to show symptoms and would fall asleep during the day it would be impossible to wake me up. Early on I had some issues with sleep paralysis but that went away as I got older.

I cant eat super carb-y lunches or I will fall asleep no matter what I am doing or how hard I try not to. I almost always have to take a nap around that time. My current work situation supports that but when I was at school or at other jobs I would try to work around it but it must of been pretty obvious to others if they looked closely.

Hope this was helpful!

[AutumnLeaves]

Thanks for responding, this does help some =j I'm just worried because if feels like this came out of no where and I don't know why. Last night I was able to fall asleep really quickly, though I had some really weird dreams and woke up this morning feeling the same amount of exhausted and sleepy.
Do you remember if your symptoms came on quickly like in a matter of weeks or if it took a while? Have you heard of anyone getting narcolepsy super quickly? Do you have to deal with any of the hallucinations or cataplexy?

Thanks again!

[MJunderway]

Thanks for responding, this does help some =j I'm just worried because if feels like this came out of no where and I don't know why. Last night I was able to fall asleep really quickly, though I had some really weird dreams and woke up this morning feeling the same amount of exhausted and sleepy.
Do you remember if your symptoms came on quickly like in a matter of weeks or if it took a while? Have you heard of anyone getting narcolepsy super quickly? Do you have to deal with any of the hallucinations or cataplexy?

Thanks again!

Glad it helped some! Re-reading my answer, I see that I wasn't clear on the difference between the two. With narcolepsy you don't wake up tired. You wake up feeling normal and then during the day you experience issues with extreme sleepiness. The sleepiness you experience with narcolepsy isn't like struggling to stay awake during a boring post-lunch meeting. It comes over you like you are being drugged while you are doing activities like writing or driving. I don't take meds for my narcolepsy because I don't do well with stimulants but instead I manage it in other ways (previous post). If I don't manage my symptoms the right way I am unable to function during that time.

Very few people have narcolepsy. Many who do have narcolepsy have a genetic mutation which creates low levels of hypocretin. It's part of the HLA proteins, DQB1*0602. Symptoms generally start in people after the age of 10. Mine started around 12-13. Some research has pointed to an autoimmune issue. Other research has shown that it might be associated with strep infections, however that was only a study that involved individuals with the HLA mutation.


I wasn't diagnosed with narcolepsy until I was an adult. My husband thought I might have it and I wound up getting some genetic testing done because autoimmune stuff runs in my family (My mom has MS). That's when I found out I had the gene mutation associated with narcolepsy. After getting the results, I went back and started putting things together. When I first started showing signs of narcolepsy in middle school there were other things going on with me (puberty, bad family dynamics, an eating disorder). They just chalked my sleepiness up to those things. But the sleepiness continued well into adulthood after all of the original stuff had been resolved. Initially when it hit the symptoms were really bad- cataplexy, sleep paralysis, sleep hallucinations. I once fell asleep standing up in the middle of a choir performance. I would fall asleep during the same class at the same time and no one could wake me up. My teacher accused me of being on drugs. It was pretty nuts. But the extreme symptoms calmed down and I've gotten much better at managing them.

It doesn't sound like you are dealing with narcolepsy. It sounds like you have disrupted sleep which is messing with your sleep/wake cycles. I wouldn't worry about narcolepsy.

[AntsyVee]

Yeah... Like MJ said, that's not how narcolepsy works. But anxiety, yes. Your system can stay on hyper-vigilance and overdrive so long that you become extremely fatigued. Often for many people, it will turn into depression if not treated.

[AutumnLeaves]

Thanks. I've just never felt this exhausted all the time before, even when I've had other anxiety flare-ups. No amount of sleep seems to be making this any better, even with sleep medication, and I'm just really worried because I know you can still start developing it in your 20s. I've also Googled and read that there are people with narcolepsy who have had very very similar sleeping symptoms to me.... I just don't know what to do

[AntsyVee]

Here's what I would do if I were you:
1) Stop googling
2) Go see your doc for a physical, just to rule out any issues
3) If no issues, which I'm sure will be the case cause you're young, start treating your anxiety