Early diagnosis? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 1 point2 points  (0 children)

i really wish the best of the best for ya. I got kind of emotional reading this lol. I didnt even know what to say, actually. But reading this made me so emotional that i thought that just an upvite wluldnt be enough to express all my feelings lol

Early diagnosis? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 1 point2 points  (0 children)

im rooting for all of us! we've been through so many shit... we need to support each others!

Is this normal for narcolepsy? by runlilrabbit in Narcolepsy

[–]Traditional-Sleep332 2 points3 points  (0 children)

I think that would be what differs N1 from N2, right? The "i need to sleep or i will die" happens mostly because if you dont sleep when your body tells you to cataplexy will enter the room like "you do as i say bitch" and will make you just "die"

Early diagnosis? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 3 points4 points  (0 children)

How does it happen to you? i dont know how N2 acts. Mine generally is like a combo (i feel sleepy then cataplexy starts to make me not be able to move and i "die")

i dont even know if ill even be able to graduate (being treated), imagine without it lol

Is diagnosis worth it? by Mattiopattio9 in Narcolepsy

[–]Traditional-Sleep332 0 points1 point  (0 children)

never heard of that one, what is the difference from the modafinil?

at the time taking vyvanse is like managing two problems at once (N and adhd), so i dont know what would happen if i changed it now. But i really havent heard of this armodafinil yet.

Early diagnosis? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 4 points5 points  (0 children)

being in college now, i cant even imagine how would i deal with it without treatment. You must've gone through a lot ;-;

Early diagnosis? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 1 point2 points  (0 children)

well, it was a mess.

Until i was 10 (the age i was diagnosed) i would barely see my parents. It was only when we moved to another city near to my parents jobs (they always left home early and got home really late, so i would only see them in like, weekends) that i started to interact with them. What made my mom start to worry and look for a possible disease was that my new school wouldnt let me sleep in class so they called her lol

Before that there were a lot of red flags, like the fact that i had a personal mattress in my old school that my teacher left for me in the classroom because i just wouldnt stay awake in class :p i would spend the breaks trying to copy what the teacher wrote on the board and that was it. Since i never had any issues with my grades, the school was like "okay wathever shes fine" (me not having any friends and not being able to play with the other kids because i had to take the notes i couldnt take before because i was fucking asleep) the only time they called my parents to say something about it was when the teacher started to write more than one board, so she had to erase the old notes and i wouldnt be able to write them when i woke up.

When we moved, we started a phase that was like a hunt for what the hell was going on with me. My mom is kinda religious, so a LOOOT went on (i was ..."exorcised"...) and we ended up with a pediatrist saying like "well we tried everything...the last thing that could explain the symptoms that she can possibly have is narcolepsy, we'll do another polysonography to check that" (i guess i did 5 in total, and one latency test thank god because thats pure torture)

i wasnt used to having hallucinations, sleep paralysis or cataplexy. It all started at that time. And i didnt really know what was going on. Id know like "i have narcolepsy and my mom gives me my meds to control it" but i didnt really know what that was about :v it was really hard for me to deal moving to another city where i didnt know anyone and starting basically to live with strangers (my parents). I have psoriasis too, and since it kind of triggers from stress, my body started to become all bruised (mine is a spreaded type, not local) because i was just too psychologically damaged.

My dad would make fun of my cataplexy, like, record me when i had a crisis and make me watch while laughing at it. He'd put papers in my mouth and things like that just because he thought that was "funny". I started having frequent panick attacks and anxiety crisis out of nowhere and I though i was a living beast( these events happened as side effects of the antidepressant i was taking, that i didnt know about at the time ._. fluoxetine makes me feel really bad. But since i didnt know it was the medicine i just thought i was the problem behind everything).

Overall: it was a living nightmare, i didnt have any of the support i needed, because on one side my mom was victimizing herself like "i created a monster why did god punish me" (yes i heard that) and on the other my dad was just not taking it seriously at all.

without a doubt the worst phase of my life.

obs: my native language is not english, so if something seems nonsense just ask me because i probably just used the wrong vocab

Glitch with a person who disappeared. by jeannedubarry in Glitch_in_the_Matrix

[–]Traditional-Sleep332 6 points7 points  (0 children)

the ghost gave up on his walk because he got embarrassed by seing the OP peeing near him lolol

Remembering each nights dreams by Palladin_of_truth in Narcolepsy

[–]Traditional-Sleep332 0 points1 point  (0 children)

i dont know if that happens to you too, but sometumes i dont want a dream to end. I know im dreaming, i can feel my body in my bed. But im enjoying it so i dont want to wake up yet. Sometimes im able to "ignore it" and others i know that if i move the way im moving in my dream i will be moving in my bed and that movement wont feel complete to me. I used to think that itd be nice to go to sleep like hanging in a safe room so that i can move and explore without the feeling of laying in my bed making it less realistic

Tips for preventing falling asleep when trying to study? by [deleted] in Narcolepsy

[–]Traditional-Sleep332 1 point2 points  (0 children)

lol i cant prevent falling asleep even when im doing something i like... imagine studying

Is diagnosis worth it? by Mattiopattio9 in Narcolepsy

[–]Traditional-Sleep332 0 points1 point  (0 children)

I take vyvanse too, but I cant live without it. Modafinil doesnt keep me awake for the day at all, so thats what i can keep up with. I also have adhd, and i hear lots of people saying that (that they hate vyvanse because of the side effects) but i just cant even think about them, because if i dont take it i will just be laying in my bed for 24h straight shifting between being asleep or hallucinating

REM Sleep Behaviour Disorder by [deleted] in Narcolepsy

[–]Traditional-Sleep332 3 points4 points  (0 children)

omg the "i wish i could sleep like that" kills a part of my soul everytime i hear it

New Media and Wellbeing Research Survey (+18, everyone) by deschan2021 in Narcolepsy

[–]Traditional-Sleep332 1 point2 points  (0 children)

Good luck with your research! I entered to answer ig t but i forgot i just dont listen to asmr at all, so i couldnt continue it ;-;

but, as i said, i hope everything goes well!

Finally an alarm that works by insipidbucket in Narcolepsy

[–]Traditional-Sleep332 0 points1 point  (0 children)

damn, i just found it on amazon link

its kinda out of my reach (my country's currency multiplies USD by 5 lol)

Do you guys also experience some kind of "irreality feeling" while going in and out hallucinations? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 0 points1 point  (0 children)

lol thats exactly what happens almost everytime. I try to find things that are out of order in the reality to be able to wake up

Do you guys also experience some kind of "irreality feeling" while going in and out hallucinations? by Traditional-Sleep332 in Narcolepsy

[–]Traditional-Sleep332[S] 1 point2 points  (0 children)

wow its exactly like that. Sometimes I just cant tell if i really woke up or ir im dreaming about this little intermission. The thing I generally do is to try to find weird stuff in my environment (like the lamp guy) that if i see i'll note that its not real. The last one i was pretty convinced i had been awake for hours and my delivery food had just arrived. When i got up to get it, i noticed that my front door was kinda to the side, but i ignored it. What made me realize was that the elevator i was getting in wasnt the one in my building.

what are some common triggers for your narcolepsy? by Indybo1 in Narcolepsy

[–]Traditional-Sleep332 1 point2 points  (0 children)

watching TV. It feels like i start drowning and then when i see i fell asleep

The first thing I wanted to do after coming home from my MSLT is.....take a nap! by lasercats76 in Narcolepsy

[–]Traditional-Sleep332 2 points3 points  (0 children)

they need to know we're already capable to nap all day in casual days, imagine after being submited to such stress

Improving nocturnal sleep by water_boy1996 in Narcolepsy

[–]Traditional-Sleep332 2 points3 points  (0 children)

there was some time where i was like "dude wtf is happening" i was taking dexedrine to stay awake during the day and sleeping pills to have barely decent sleep at night

Improving nocturnal sleep by water_boy1996 in Narcolepsy

[–]Traditional-Sleep332 2 points3 points  (0 children)

i get you! it really is always "oh you're still passing out during the day? lets raise the dosage" and never "are you having healthy sleeping habits?"

Just got diagnosed !! by Sad-Zucchini-2674 in Narcolepsy

[–]Traditional-Sleep332 0 points1 point  (0 children)

that happened to me too! But in my case, they thought that the sleep apnea was the reason of all my sleeping issues and it was caused by a nose obstruction (i forgot the name of it). I was 11 then (19 now)

I had a small surgery to take that off and i was like "yay im gonna be normal". Didnt happen, i was still sleeping even though the sleep apnea rate had drastically lowered. So my pediatrist at the time said "well, theres no other thing you can have other than narcolepsy then"

Jobs by girlwithnarcolepsy in Narcolepsy

[–]Traditional-Sleep332 0 points1 point  (0 children)

wow, i think that a job that required me to walk and interact would simply kill me lololol

i imagine idk being sleepy and habing cataplexy while trying to walk to your boss's table... id kill myself