Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
I'm in my junior year of college with N w/ C. Sometimes the hardest part of it is when I have a cataplexy episode in the dinning hall or public building on campus and even though my friends will tell bystanders I'm fine and not to call 911 or campus police, for some reason they always seem to think they know whats best for me even though they don't know me. Then I 'magically wake' up just like my friends say I will and all I want to do is leave and go back to my room to hide, but I have to wait around for campus police or an ambulence, answer 8 billion questions, listen to these people who have no idea what n w/ c is tell me what I should do to prevent this from happening again, and then sign a bunch of papers. All the while being surrounded by a bunch of curious onlookers.
Sometimes I just hate how much people 'care' on this campus. Yes I put that in quotes because they aren't calling for me they are calling because they are scared/worried/uncomfortable. Like I'm sorry my disease makes you uncomfortable? I would stop it if I could?
Last week, in response to one such occurance, I recieved a follow up phone call from one of the nurses at the Health Center at school. She asked me if I was doing all right and what happened. Then asked if I was on any medication. I told her that because insurance denied the medication xeyem that my doctor prescibed I wasn't on anything. Her response "I'm not satisfied" As if I wasn't doing enough to take care of myself. Like there is litteraly nothing I can do about this, and you don't have a right to not be satisfied, you don't live with this you don't have to deal with the humiliation or any of it.
After that at the end of last week, I had another doctor's appointment and he prescribed adderall. I haven't been able to get the prescription filled yet but will probally be started sometime this week. A couple months ago he had me try nuvigil but I ended up stopping it after only a week because it made me feel absolutely terrible. Like I was still just as exhausted, didn't help with cataplexy, made my veins feel like they were running on electricity, also got pretty depressed to the point where I just layed on my floor from friday night though sunday afternoon not moving except went to the bathroom once or twice. The only thing I found positive was that it kept me awake during class.
Has anyone had negative reactions to nuvigil and then ended up feeling better with adderall? Or just anything about adderall? I'm nervous to start a new medication because I don't know how it will affect me.
Thanks,
Laura
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I haven't written in my diary on my computer since May because I thought that my computer was dying. I got away from writing but my computer is hanging in there. I think that I will start writing in it again. It's so therapeutic.
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First, I hope everyone is doing well, and continuing to fight that good fight! Keep up the great work on yourselves; I'm rooting for all of you!So, I started doing therapy at the beginning of the year, when I was in my most depressed state, but with my therapist, I made big changes and steps in the right direction. But, over a month ago, she couldn't take my insurance anymore, and I had to stop...
I'm pretty confused on the pharmaceutical end, but if you try it and don't like it, you have the option of ending the experiment.
Is your dog a trained service dog or a pet that has started alerting you? After reading online about how service dogs have helped people with narcolepsy, I've applied to get a service dog because I think it would give me a lot more independence than I have now. Though, it will certainly take forever, it is at least something I can hope for now.
As a non narco I want to say, a lot of people DO care, they just don't know what the hell to do, and why someone that "passes out" doesn't seem more concerned about themselves. The avg onlooker probably thinks you need water, food or something, and you "passed out" from dehydration. And they might assume you don't want help or aren't taking care of yourself cause you are an abused girlfriend...which sounds like a weird jump, but the need to not draw attention to yourself might actually raise a flag for people that does just that.
Maybe just firmly tell people I HAVE A CONDITION. At least they will not worry someone is beating you, and your decisive tone will clue them in to your strength.
Sometimes I think people believe other people want help but don't want to be a bother. In your case you don't WANT help....just say so maybe.?
Brave on! You guys are amazing!!!
The adderall didn't have any effect and the next drug Ritalin gave me really terrible migraines. So I still don't have anything that's helpful right now. I've been trying to go through a patient assistance program for the xyrem but haven't gotten very far yet.
I'm super excited though to have been accepted into a service dog program. While it will still be a long time till I get a pup to help me, I am looking forward to it very much and the independence having a service dog with me will grant.