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New Diagnosee--Just Started Xyrem


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#1 Jeremy Gore

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Posted 18 February 2010 - 10:37 PM

I was directed to this website by the Xyrem nurse and thought I'd introduce myself, though because of past hypochondriac tendencies, I'm very leery of online medical information and such. Anyway, quick medical/personal history of my battle with narcolepsy.

Teenage Years: Always depressed, always sad, always sleepy. Forced myself to participate and pretend to enjoy normal "teenager activities," not to mention tremendous religious guilt I felt due to the fundamentalist group I was supposed to "belong" to. Came home from school everyday, crashed on the floor, slept through heavy living room traffic--you know, that narcoleptic sleep where you know where you are, can hear people talking, but yet your eyes stay closed and you dream the oddest, most vivid dreams. Often got very dizzy upon standing up; once fell on my mother, knocking her over (could this have been cataplexy?). I had four "fender bender" accidents in my first two years of driving, all in the late afternoon, when my symptoms were/are the worst. I never felt rested, no matter how much I managed to sleep.

College: Got married in school and shortly thereafter suffered a major breakdown, end up in the hospital, diagnosed as major depressive. Start Effexor, stayed on it for 4 years (in and out of therapy), with no real improvement, except for "zombiefication"--I felt very little for those four years, but managed to get through college and graduated at the top of my class with a degree in English Lit (despite constant tardiness--I have no sense of time-- and sleeping in classes that I loved) and started grad school in the same field. Those four years on Effexor did allow for some healthy self discovery and my studies were very meaningful to me. Focusing got extremely difficult for me in grad school, and, one year in, we found out we were expecting, which I used as an excuse to quit the program because I was so burnt out. During that one year in grad school, however, I did have a bit more energy than normal and slept marginally well, probably due to my hobby of mountain biking 20+ miles/week. An Effexor dosage mixup ruined that short-lived bliss.

Recent Time Frame: Moved back to my hometown and began teaching public school (10th, 11th, and 12th grade Lit)--wrong career move. No way I multitask well enough to process all of the threads public school requires of teachers these days. Anyway...I switched from Effexor/Pristiq to Wellbutrin before beginning my time with the sleep doc. Did the overnight thing, testing for apnea...little to none found. Symptoms seem to suggest narcolepsy. Did the "nap test" with 2 REM episodes and fell asleep instantaneously for all five naps, so the doc diagnosed me and started me on Xyrem at night/Nuvigil day. Tonight will be my one week dosage. I have hope that it will help me in the long run. I plan on returning to grad school, completing my M.A. and teaching part time at a few colleges instead of public school--hopefully night classes, when I'm actually awake.

My immediate concerns:

My performance at work right now is not acceptable to me. I lack the energy to control a classroom of 30 delinquents, constantly lose my train of thought, and cannot keep up with my grading/paperwork. When I come home from work, my brain is done for the day. The doc also took me off of Wellbutrin, so I'm dealing with that as well. The stress of the situation is no doubt affecting my therapy. I keep waking up in ancipation of both of my alarms (the second Xyrem dose at 2 and the "hey, its time for you to pretend you're normal" alarm at 6). I woke up this morning at 4:30 and didn't go back to sleep. This troubles me. I'm on 2.5g/dose right now, so I might have to increase??? However, I really feel like its the stress/anxiety of work. We had a long weekend for Pres. Day, and the night before I was supposed to go back to work, I managed to stay awake straight through my first Xyrem dose (that was a painful experience, but the nurse said my symptoms were normal), despite it leaving me completely useless and in sleep all weekend. I need to have some relief to my lifelong exhaustion, but it looks like that will not happen until May, treatment or not...

Anyway, thats my story, and it seems that I've stayed up 30 minutes past my 1st scheduled dose of Xyrem... :P

#2 amazingracie28

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Posted 19 February 2010 - 02:10 PM

Hi Jeremy,

Welcome! You've landed in the right place. With all the troubles you've had and are having at least now you've got a diagnoses. I must say though, you sure have accomplished a lot as an undiagnosed and untreated PWN! Give yourself some credit for that!

I am also on Xyrem and Nuvigil. As you'll soon learn, different things work/don't work for different people but for me Xyrem was a Godsend. I'm currently on 4.5g first dose and 3.75g second dose. After a few weeks of adjustments, I finally got to the point where I really started feeling more awake and rested. I still get sleep attacks during the day here and there even with the Nuvigil, but overall things are much better. Give the Xyrem some time-you're only on your first week and a pretty low dose.

I know there are some teachers on here so hopefully they can share some tips and tricks. Do you have the option of a teaching assistant who could maybe help with grading? I wish I had more suggestions......

You sound like you're pretty hard on yourself....please don't be. Take it one day at a time and keep posting. Hopefully things will start getting better now that you have been diagnosed. Also, check out this blog if you're able to- the author is also an English teacher with N. http://narcoleptickn...itesizelife.com

Amazingracie28
http://narcogirl.blogspot.com