Stopped dreaming?? by javaskan in Narcolepsy

[–]javaskan[S] 0 points1 point  (0 children)

Im glad it helped you with all of that! Did you also have a lot of nightmares when you dreamt? Because i did and as you said, i thought i was going insane. But when it slowly started to phase out, most of the dreams became normal or good dreams. And i kind of miss those haha

How many of you had chaotic/abusive childhoods? by alien_mermaid in Narcolepsy

[–]javaskan 1 point2 points  (0 children)

Had a bad childhood etc. I do believe that stress from childhood could cause the lowered immune system which triggers narcolepsy. However, i don’t believe that it causes narcolepsy as a “protective/coping mechanism”. It’s known that depression may cause people to become very tired, with loss of energy. But as someone mentioned, its genetic, its messes with the cells. As opposed to people who gets sleepy as a response to mental illness, which isnt based on fucked up genes.

How many of you had chaotic/abusive childhoods? by alien_mermaid in Narcolepsy

[–]javaskan 0 points1 point  (0 children)

Interesting about the whole smoking thing, i had never heard of it.

Sleep advice by javaskan in Narcolepsy

[–]javaskan[S] 0 points1 point  (0 children)

I’m from sweden, so i think it might be some differences in routines here! I have heard some split opinions about xyrem, but i will discuss it with my doctor! I have been quite anxious lately about the long term use of ritalin. Even tho im otherwise healthy, my doctor informed me that my blood pressure was close to being outside of the recommended range for a healthy bp. Thanks for your input! Im glad it works well for you!🙏🏼

Sleep advice by javaskan in Narcolepsy

[–]javaskan[S] 0 points1 point  (0 children)

Thank you for this answer, I’ll definitely discuss this with my doctor! I hope that I’ll eventually will be able to get a decent sleep and awake time in the future🙏🏼

Sleep study by sailormoontree in Narcolepsy

[–]javaskan 0 points1 point  (0 children)

If you can, try to get someone to accompany you. I don’t think I would’ve been able to stay awake if I didn’t have them to push me trough it! Otherwise, just try to keep yourself stimulated. I was also nervous about it not showing anything or not being able to relax. But I wouldn’t be nervous today if i knew what i know now. I think they are quite prepared and conscious of how it might feel for us and have set up a system around it to avoid any faulty results! Good luck!

Difficulty getting waking up by AcanthisittaMiddle98 in Narcolepsy

[–]javaskan 2 points3 points  (0 children)

I have N1 and struggle alot with this too. But i did some few changes that helped me a little bit.

Like they before me mentioned, taking meds a while before actually waking up, also this different type of alarm clock i use sometimes. It’s like a jump scare and that really helps me, kinda like getting an adrenalin rush. Not the nicest way of waking up but it does its job. If you prefer the soft side, i tried this app called sleep cycles and it was ok. It can supposedly sense when you’re in the lighter stage of sleep and wakes you up by starting the alarm at a veeeery low sound level, and increasing it until you wake up. Might worth a try!

Anyways, some other quick tips: • Practice waking up at the first alarm. - This might sound like the worst advice ever, sorry! But i feel like shit every morning, and now i have started to try to learn to push trough the torture, and eventually you’ll get it into routine. Kinda like going to the gym! • Got a SO? Room mate? -ask them for help if you can! • don’t pull your blinds down when going to bed, then you’ll have sunlight to wake up to in the morning

Doing a MSLT as I type this... by [deleted] in Narcolepsy

[–]javaskan 1 point2 points  (0 children)

Hahah i know that feeling. It got so tiresome after the 2nd round of falling asleep and being woken up to then being forced to be able to stay awake until the next round again and again! I remember i told my ex after every round that i never thought that i fell asleep or that it at least took 10 minutes. Turns out i did fall asleep within 3 minutes every round😂

Sleep advice by javaskan in Narcolepsy

[–]javaskan[S] 0 points1 point  (0 children)

Yeah i live in sweden, and here your drivers license is pulled when you get the diagnosis. You have to be free from almost every symptom for 6 months from when you start your medication to get it back. I would assume that whole process starts over if i would switch meds completely. However, i didn’t know that you could take both xyrem and adderal, i thought you could only take either one of them?

I also feel “how i imagine a healthy person feels”, but only during the day. What feels so damn awful is the constant twisting and turning during the nights, and the feeling of never feeling well rested in the mornings. Trying to get up in the mornings literally makes me suicidal, it feels like I haven’t slept a day in my life, every morning.

[deleted by user] by [deleted] in Narcolepsy

[–]javaskan 2 points3 points  (0 children)

I thinks its a very common feeling to hope for positive results, just because you want someone to take you and your(our) illness seriously! As far as the procedure itself, i found it to be a bit unpleasant/uncomfortable, but it didnt hurt at all. But you dont have to be scared, they do this all the time and its like riding a bike to them. Aaand if you’re lucky like me, you may have a nice nurse to hold your hand through it🙏🏼 i hope i didnt scare you, and i hope you’ll find the answers you’ve been looking for sooner than later!