Narcolepsy Support Group

Do you take any medication to treat your narcolepsy? I was recently diagnosed and am now taking nuvigil. I have a really hard time waking up in the morning also, and since i started taking it, i feel like i can wake up a little easier.

I have horrible issues with getting up in the morning...is there a PWN that doesn't?? If so, I am curious and want to know more...please post your secrets!

I HAVE to get up or my kids will not make it to school...that said, I have missed the bus, chased it down, been late to work SO many times and missed a lot of weekend functions because of my inability to successfully get my body out of bed. I too have different alarms...my current one needs replacing because,although it still functions, you cannot read the time unless you tilt it to see the half inside. Apparently (says my husband) when it goes off I have begun to hit snooze and just chuck it to the floor HARD. It is beat to a pulp. I do not even remember hitting snooze let alone throwing it! About the 3rd snooze I am a little better, I find it on the floor hit snooze again and replace it to the dresser. When it goes off next (50 minutes from set time) I know I still have 20 minutes left...being semi awake,enough to think anyway, I will then set it for 20 minutes later...saving me the minute in between 2 snoozes to sleep. BAD HABIT and everytime I do this I wind up late. You would think I would stop, heck I tell myself the night before not to...then ol'mornin pops up and here I am chucking the alarm clock and then setting it to another time!

So ways to make you get up...well, from all I have tried it seems you have too. lol, we probley all have. It takes extreme amounts of effort on my part to get up and I do add all the force i can on myself to drag my alarm throwing, snooze hitting, self out of bed and out of the room before I re-set "just one last time."

Part of my problem lies in the fact that night time seems to be when I am most alert, paying attention, and able to think clearer. I use it and do alot of things....things that during the day I can't because of work or that never got done over the weekend because I try to take it easy.

I have honesty been quietly searching for something in my line of work where the hours are more at night, I think it would allow me more morning time with my kids as well as after dinner and I might just enjoy it more. WHen you can't think or spend the day like a zombie, it starts to wear on you in more ways then one. Do you have the option of another shift?

Tracy- if you could send parts of the email, id appreciate that!!!!
thnxx. prfctlilangel30@aol.com
just put "DS" or sumthin in the subject so i know when i see it in spam, not to erase it :)

Kim- I actally was takin 1 250mg nuvigil a day. sometimes i take 1 in the mornin and 2 at the same time in the afternoon...along with my adderall & ritalin ... coffee & red bulls..
My DR. just told me to take 1 250 in the AM and then 1 150 in the afternoon (But if need be, i could take the 250 in the afternoon)

Julie- see, at least your partially awake to know u got another 20min. to sleep & re-set the time...lol... and have a husband to help(right? or he cant help?)... i dont know my alarms goin off...i dont hear, dont move, nothing. ..and im asleep. it's not sleep paralysis(bc they are aware of whats goin on) ,, im not! i swear, i must go into coma or be like temporarily dead when i go to sleep. i dont understand it...know what it is or why.... & dunno how to stop it !!! (!(((neither do the DR's!!!!)))) i'll figure it out... soon, i hope. im goin for another sleep study next week.
idk whats gunna happen to mee... but, my Dr. was talkin to mee about takin my driver's license away today.... (which i REEEALLY hope doesnt happen!!!!)
my job does not have later shifts. i think the latest is 3-6 ... which i could do prob!!! i d work 11-2 & 3-6 but, i dunno how theyre gunna handle it when im back..


as of right now, i had a meeting w the boss wed. i think my boss & prog. manager think im a drug addict... they said i wouldnt sit still at the staff appreciation & it looked like i was w/d from drugs.
(awesome. totally NOT true. I DONT do drugs. i said, well... esp. staff meetings & after work when im beyond tired if i dont keep movin, im sleepin!!!) anyway... my boss does NOT wanna fire mee(good!) she wants me to take some time, figure this all out, & get healthy. (she said i didnt look good. another client says i look like shit, oh, and like a heroine addict)
sooo..whatev, i dont care... they assume.im skinny, got bags under my eyes, got bruises everywhere (from walkin into shit - half awake. lol)
im takin 2 wks. off. gunna go to dr's talk to people figure shit out.. maybe take it easy, relax a lil, got sum shit done, etc etc...
hopefully theres an answer out there for mee to be found...
if not, ill hopefully figure it out myself!! i'll keep ya's posted..
as of now... i still got my job... :)

thnxx for your responses everyone =)
have a great weekend!!!!
xoxoxo

Kelly or Tracy. I too would appreciate the letter or anything to do with the ADA. I want to work, but I do need something in place to protect my job from HR dept. The narcolepsy is only getting worse and I feel like I don't have much time left. countrywabbit7@aol.com. Thanks

I've wanted to reply to this blog many times, but I get too caught up in emotions to finish. Over the last two years, I have used every ounce of energy I have fighting to keep my job. I was doing great (I thought) until organizational changes saw me reporting to an eccentric micro-manager who believed anything less than 200% was not good enough for the organization. I was continuously being watched, timed, tested and judged. Eventually after two years, my narcolepsy and cataplexy intensified and I found myself having numerous sleep attacks which possibly led to unknown errors, and my cataplexy increased making it difficult to participate in group discussions; thus making it appear that I was not interested. The cocktail of medications that I needed to take each morning just to allow me to get to work safely and to keep me awaken throughout the day gradually eroded my attitude and level of tolerance making me unapproachable, irritable and frustrated. After receiving two disiplinary letters that were intended to eventually dismiss me, I seeked counseling from my doctor, who immediately forwarded a medical letter to HR explaining that I had a disability and outlined the symptoms and consequences of N and C. This did not go over very well with my superiors and they knew that it was no longer possible to dismiss me. I cannot explain in words how dreadful the next several months were - a textbook case of bullying, humiliation and mental harassment. My boss made it very clear that I did not fit in with the others and it was obvious that my health would be greatly affected if I contindued working under such stress. How could they get rid of me???? Out of good faith (I thought) they offered me a new job that they believed would be able to adapt to any accomodations needed to work around the N and C. Naturally I agreed and I felt this sudden feeling of relief. Imagine, no longer having to hid this terrible secret. What was I thinking!!! Three months into the new position, everything going great, they announced the budget did not have the funds to maintain this new position. The final result was that the position was dissolved, and there was no other position available at that time. So here I am unemployed and now labelled with a disability. I really wish I knew what I could have done differently.

tirednurse, you would most certainly be covered by ADA, and you should be able to get your neuro/sleep doc to write you a letter confirming that you should keep a regular routine, that way if you wanted to only do a particular shift because you feel most alert and able to work efficiently and more safely your employer should keep you on the same shift. Narcolepsy is hard enough to control but even harder if you don't keep your routine regular, and there is evidence of that.

i am going theough emplyment tribunal courts with my employer now because they treated me like shit as soon as N became a small issue at work. all i can say at the moment is to keep anything sent to you, have meetings documented, better still ask for them to be tape-recorded if you have any problems with your memory because of N. keep everything, you may need it if you end up in court as i have

if you ask for any help or adjustments to be made to make your job more manageable because N is causing difficulty, ask for it in writing and ensure any replies are in writing also, or keep a record yourself of any verbal replies.