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I've been taking it for 19 months. It does something but not enough by itself. I also take Methylphenidate to stay awake during the day.
Cold and dark I will never get up. I'm from the tropics. So the heat does not make me sleepy.
From my experience people are usually very judgmental and rude, even tho I have explained my condition, they still just think I'm lazy and uninterested, even though I have explained why I'm more tired and sleepy then the other people around me. i think it's because in my country only about 30 people are officially diagnosed with narcolepsy, so many people don't know what it is and refuse to learn about it and acknowledge that it is a real and seriously life changing.
I constantly feel judged and very misunderstood. It frustrates me that people donāt realize that it is a true struggle to live with narcolepsy. We can educate others and we can spread awareness but weā¦ read more
The doctor takes care of the enrollment with the pharmacy I think the biggest part about waiting is getting the insurance authorization to cover it. Once approved I think a rep and a nurse orā¦ read more
Even a 30 minute conversation absolutely drains me. But if I spent that same time doing something else, it's not as tiring???
Seems like most time it's the same for me
My doctor wrote my school a not explaining my situation, and that I need small breaks during the day and to get excused from stuff like public speaking because that triggers my anxiety and panic attacks which also triggers my cataplexy, but the school doesn't care, they say I don't need any special accommodations, I feel so angry and hurt by this because it just feels like they are laughing in my face and calling me a liar for asking for help
The school has to follow those accommodations by law , they could get in big trouble by not following. I would remind them of this law .
Sometimes I think I'm a special kind of crazy. I totally donāt understand how I make it through some days/nights.
Today was one of those weird days I literally fought all day to stay awake and thatās basically all i accomplished.
Now its 2:19am and Iām trying to not get upset because I get exhausted from fighting to stay awake and struggling with 2 years into trying to get used to legs not working but also spasming and cramping.
My head starts thinking about the mass of things i needā¦ read more
Try meditation! I use an app called Insight Timer and it has a ton of free guided meditations and calming music. The guided ones really help me take my mind off the merry-go-round! Let me know how itā¦ read more
Its like a shotgun blast, or door slam right about the time āI check outā
It used to scare me, but now not much even makes me flinch (except spiders).. I can still out scream a girl when meeting an unexpected spider. š
Now that I'm thinking about it, I would say the sound I hear would be a very loud "slam".
Interesting question š¤...?...
My cateplexy is becoming more frequent as time goes on.
George W.
Narcolepsy 2, adhd, addiction but lives in sober living & sober, sees sleep dr, hoarder, raised by her grandparents. Uses excuse not her fault because of her narc. Doesnāt seem to want to change. Any ideas how to make her want a better life?
Wow! You have a wonderful outlook. Very wise. I know this disease is so hard to live with and my prayers for my granddaughter (my husband and I raised her from 4 yrs old so she is our daughter) thatā¦ read more
