Nuvigil/cpap/narcolepsy help input!

[nearsleep]

Started off as an 11 year old just coming off mono with excessive sleepiness getting reports from school falling asleep in class. Doctor assumes it is left over effects of mono and prescribes *names slips me at this time* a medicine that was some form of what i would assume is speed. I was great on that except every 3-4 months the dose had to get increased as i started getting calls to my parents again just wasn't working anymore. After i reached max dose doctor tests my blood pressure realizes it was sky high *thin at this time in life* immediatly takes me off meds with no real recourse for how to solve my problem other then stopping it and getting more exercise.

Problem continued doctor retired went to new doc a year or so later with same issues *by this time hight jumped along with weight which came right after getting off the meds* *not the height part * this time doctor advised of a sleep study. Did the study said i had sleep apnea gave me a cpap. Continued to have problems they made sure i was using cpap and it was configured right messed with that several times over the course of 3 years never worked never felt any more rested couldn't sleep over at friends houses cause that stupid machine. Doctor advised me to get my tonsils and adniods removed as it could help the sleep apnea. Did so though they where never a problem medically, did another sleep study *at this time i was 17* doctors then said i no longer had sleep apnea got the machine back but never fixed anything just said it was gone you shouldn't feel tierd sent me on my way. Talked to the doctor about this but he never did anything just assumed it was my diet or age and i should grow out of it so i left it alone. Continued to fall asleep at random times, for instance at track practice which was odd. Went to college at started driving, noticed it happened while driving mainly drift in and out to come back and think something was on the road or coming at me and swerve and stuff only to realize nothing was there. I left this alone as well as i personally didn't like school much so when i fell asleep in class i preffered that really. Though after college i got a job and this is where i was left in a really tight spot as i had not focused on getting it looked at and it was starting to interfere there.

I went to my primary care doc advised me to go to neurologist. I did *real nice guy* advised me to go to a sleep study place for a study. Told him the whole story as well. Went to the study place told the doc the whole story she said i would do a 24 hour study day and night starting with the full night sleep period then some sort of napping cycle test. Was ok with this. Did the first 10 hour sleep period slept longer then i was comfortable with because the nurse kept asking me if i could sleep alittle longer as they didnt put the mask on me till about 8 hours in. They stopped the test said i could go home. came for followup said i had sleep apnea would start me on the machine. I normally politly agree with whatever a doctor tells me. I did this time but was furious afterward as i had to pay and arm and a leg plus insurance deductibles for this test to tell me they where going to start me on something that didnt work for 3+ years already. Immediatly scheduled an appointment with my neurologist got in 4 days later *used cpap for all 5 days* advised this just wont cut it i didnt pay all the money for them to tell me that was it again. He looked at the results and said well you do have very mild sleep apnea but from the tests and the sleep doctors notes you have narcolepsy. Said i was in dream sleep after falling asleep in roughly 2-3 minutes. Which i can understand as i always felt i could think about something cool for the 3 or 4 minutes it took me to go to sleep then i dream about it as im sleeping which i always liked.

Long story short doctor proscribed me 250mg nuvigil. gave me a cool card that cuts the cost to 20 dollars for 30 for 12 months and i got a follow up in a little over 3 weeks. The only problem i am having with this medicine is that i work the night shift. I get up about 4-5pm the doctor told me to take the med when i wake up. I have been but around 2 oclock at night *i get off at 5am* i start to crash out. More so then when i was not taking anything and just living through it. I fall asleep now sometimes while mid conversation. Now i must say i was never tierd during the day, meaning i not a tierd person. I wake up feeling good can function fine off even 5 hours of sleep though i regularly sleep 9+. I since being 12 or so have positioned my days off for naps because i have just always liked sleep. i would generally start to get the dozes around the same time so i positioned naps around that time mid day and though this never helped anything as far as the sudden sleep i just liked naps so i took them. I know it sounds controdictory to say im not a tierd person but i take naps regularly, something about sleep where you fall asleep pretty much instatly and dream about things you want to think about is pretty appealing though this isn't set in stone with the dreams it does happen regularly.

My main questions after my backstory and the reason i signed up to post is this. I finally get a doctor to diagnose the problem, where attempting to treat it. The medicine is great with pretty much no side effects until what feels like i crash from an energy drink or something around mid day of my shift. Should i talk to my doctor about this and see what else we could do? I have only been taking it for a short time i think today is my 5th dose. Should i wait it out as i have read it should reach peak performance by day 7 or so? Has anyone else experienced this and has input to this situation or has a similar story they can reflect on so i don't feel like i'm the only one with doctors shoving cpaps down there throat that doesn't fix the problem? Appreciate the input. btw 21y old now for reference of time.

[Julie]

Hi, I'd like to ask you if you are now using Cpap at all on a regular basis or not, because regardless of whether you have narcolepsy or are using Novigil, etc., it might help (especially if you find the 'right' mask for you) to tell you what's going on if you get a machine that allows you to read overnight breakdown of events on your computer. Also, do you keep track of your sleep habits in general, i.e. bed-time consistency, whether you work-out before bed (not a good idea for a few hrs prior to bed), if you drink coffee, whether you're aware of gastric reflux problems (so many of us have them) that might interfere with sleep, and whether or not you do dream, go into REM sleep, etc. routinely? There are so many factors involved with sleep problems and at least getting some idea of your picture could really help -I can tell you're sick of the whole business, but if you can finally get it sorted out you could feel so much better, and there are people on the forum here who've been around for a long time and are so knowledgable.

Go to the User Ctl. link just above the posts on left and then go to Profile... if you fill in (text please, not icons) all your equipment with full make & model #'s it will also allow everyone to see what you're using, or at least have available) each time you post (you can see mine under the note), then come back with other any other information, as mentioned above and whatever 'schedule' you can put together of how things are now. I'm sure you can get some help.... good luck!

[nearsleep]

I have been using the cpap since it was given to me about a week and a half or so ago. Use it the whole night when sleeping and don't mind it anywhere near as much as the one they gave me back when i used it before. mask i'm using now is just a strap that puts nose buds in my nose attached to the hose. I had like a full head mask before which was good as it never moved around but looked funny on my face haha. I have mild sleep apnea but not the obstructive kind, the central kind from what my sleep study doc said. I was previously diagnosed with obstructive when i was younger then rediagnosed as no sleep apnea after my tonsils came out then again re rediagnosed with central sleep apnea on my 3rd round of tests. I honestly... at this point, don't hold weight on anything these people say. Each doctor reads the results and sees what i would assume is there personal opinion as in the process of some 7 years i have gone from having it to not having it to having a different kind of it to my doctor saying i have narcolepsy. I am glad it is getting treated as i never felt the apnea was the underlying problem. Again i feel rested when waking even when not having the cpap for 4 years. I wake up fine functional and ready to go, unfortunatly 3 hours later driving to work i can't guarantee i wont start to swerve from a sudden felt knock out.

Ill follow what doctors tell me to do, if they want me on the cpap ill deff use it, though i bet i could go to a clinic down the street for a sleep study and they'll let me know i have a new as of yet undiscovered sleep apnea that i need a different machine for...

Edit* when i get home from work ill fill out my machine info and so forth, also like i said on my first post i do genuinely love sleeping so i certainly have a set sleep schedule, get off work at 5 30 min drive home by 5:40 or so, sleep by 7:30- 8:00 every night even on my days off. Wake at 4-5 mainly 5pm eat breakfast and start my day. the switch to nights was a little harsh but before the switch i kept the same schedule for several years depending on what i was doing during periods of time it would change as i aged but i have always had a set sleep cycle for long term during those times resulting in 9 hours sleep or more no matter the schedule.

[codinqueen]

I have used both Nuvigil and Provigil before I got my newest sleep study and started back on the hose in Feb of this year. I was prescribed Provigil by my pain Dr several years ago in another state, who thought I might have narcolepsy along with my fibromyalgia, and I had already determined I could not tolerate CPAP, so he did not insist on a sleep study. It's a long story, but I had a lousy CPAP machine/mask back in the late 1990's and never did achieve the right mask fit, so gave up and had surgery instead that was supposed to fix the obstruction, and it seemed to help for about 6 months to a year, with my snoring, according to my hubby, but I was still tired all the time, even after the surgery that was supposed to correct my sleep breathing problems. The Provigil helped the pain of my fibromyalgia, as well as managed to keep me awake for drives weekly of 260 miles to and from my job, where I would spend the week in a motel, and then drive home, falling asleep most of the way until I started on the Provigil, after a particularly scarey wake-up, with me & my car headed off the road & off a cliff that would have killed me and a few other people if I continued to drive without some kind of medicinal help.

Fast forward: I moved out of that state, and my new Dr would not continue to precribe Provigil until I agreed to have another sleep study, but I couldn't afford it (had very high deuctible insurance at the time) so I used it sparingly after he re-ordered it with a promise of me getting a sleep study as soon as I could afford it. I was taking 1/2 of a 250 mg tablet, and took it usually twice daily while I was working, once as soon as I got up around 7 AM and the other dose of 1/2 about 4 hours later, so I was never using more than 250 mg daily on days I worked. Then I got new insurance, and the Provigil co-pay got so expensive I could not afford to buy it anymore at $75.00 for a month, so I just fell asleep routinely throughout the day without it, stopping every day for a 1 hr nap around 2 PM. Then after a few months of that, they came out with Nuvigil and I managed to find the coupon on the internet, & I begged my Dr for it, promising to get another sleep study within 6 months of the prescription. Thank God I never had to drive long-distance again once I moved to the other state. I found with 250 mg tablets, I could take just 1/2 daily on work days and manage to stay alert to work most of the day, with my nap, for several months, then I finally had the sleep study in Jan of this year. Was found to have severe sleep apnea once again, with mostly obstructive apneas/hypopneas and some centrals....enter the new and improved CPAP machine I now have. My current Dr won't order the Nuvigil anymore, although my fibromyalgia is worse without it, and I still have to stop to nap about 6 hours into my day, even after CPAP started back and I wear it EVERY time I sleep. I have a lot of other medical issues now that make ANY medicine given to me more dangerous, so my Dr is adamant I don't take any meds or supplements without his approval, and even have to watch my diet because I take warfarin. So although I would like to have the Nuvigil for my fibromyalgia/myofascial pain syndrome, osteoarthritis, degen disc disease in neck and back, he won't order it anymore since the sleep study. It has not been tested or studied for use in pain or fibromyalgia and he doesn't believe in off-label use, even though I have previously had less pain with taking it. So anyway, see if you can take it twice daily in a smaller dose and see if that will help you, but check with your Dr, since I am not one (and don't play one on TV.) Sorry for the LONG post!

I suggest you ask your Dr if he would be OK with you splitting up your doses so you take 1/2 tablet when you get up and take the other 1/2 tablet about 4 hours later, since that is when the first dose is likely to "peter out" for you. I suggest you do not take the 2nd dose more than 8 hours before you sleep for the night (or in your case, sleep for the day) as it can prolong sleep onset or duration.