Any Narcolepsy sufferers out there?

I have narcolepsy, too. I take 30mg of Adderall, plus 200mg of caffeine in tablet form, every four hours, four times a day. I still nap throughout the day - sometimes for just a few minutes, but usually for at least an hour or two. Provigil did not work for me. When I do exercise, I am shot for the day afterwards. I do not have any suggestions on how to beat the sleep, but, as someone else recommended, I keep reading that scheduled naps throughout the day may help. I also would recommend another sleep study, if you haven't had one in awhile, as you may have additional sleep disorders that could be affecting your energy levels. I had one recently, and I found out that in addition to the narcolepsy, cataplexy, and sleep paralysis, I have upper airway respiratory syndrome, periodic limb movement disorder, and REM sleep behavior disorder, all of which can cause excessive daytime sleepiness. I am in the process of getting a CPAP machine to keep me breathing at night and to stop waking up so much during sleep (the test showed I had 136 arousals in 6 hours and stopped breathing 72 times), I kick my legs and flail my arms during sleep, and I also have ZERO stage 3 and stage 4 REM sleep, which means I'm basically getting no sleep at all! Good luck to you!

narcolepsy sucks, huh? without my provigil I"m basically useless.

(the test showed I had 136 arousals in 6 hours and stopped breathing 72 times),

i don't not think this means what I think it means.... :ohwell:

Are you taking any other meds? Something for blood pressure, anxiety...etc?

(the test showed I had 136 arousals in 6 hours and stopped breathing 72 times),

i don't not think this means what I think it means.... :ohwell:

Bwaahahaa!

How many onset sleep REMs did you have in your study? Many years ago they first thought sleep apnea was why I had so many arousals but when I did another sleep study with CPAP machine they realized that didn't help; so although I still have mild sleep apnea, it wasn't breathing obstructions that caused the arousals. I also didn't go into REM. My diagnosis has gone back and forth between Narcolepsy without Cataplexy and IH but most recently has been IH because I didn't go into sleep-onset REMs in my most recent MSLT ( i've had many sleep studies over past few years).
I know it says you have upper respiratory syndrome - are they sure it's that and not sleep apnea? Also, to have REM sleep behavior disorder, you would be going into REM (which contradicts your statement that you don't go into REM) and would just be acting out your dreams instead of being in paralysis (which conflicts withy our other diagnosis of sleep paralysis). Not to contradict what your saying because I do believe your physicians diagnosed you with those things but I honestly believe your provider may be incorrect. I don't know your history and obviously haven't seen your sleep studies, and am not an expert myself so this is all speculation, but I recommend going to another physician. I had to see 5 before I found the right now that gave me the correct diagnosis and treatment (i.e. one of my providers jacked me up on methlyphenidate and told me that's all they could do for me, that there were no other options. Boy were they wrong!)
Also, have you tried Xyrem? That has helped the most for me. I also take methylphenidate ER and methylphenidate (regular release) and modafinil- they work well together (but did not work separately). We had to find the right combination and I am in the process of decreasing my dosages since starting Xyrem. Also, Xyrem should really help your cataplexy. I wouldn't recommend doing the caffeine pill. There are so many other options out there for medications that sometimes you have to just keep trying different combinations and different dosages to find right one. Mine still isn't perfect after 8 years but I've felt the best now than I ever have.

I also recommend anyone contacting Narcolepsy Network if they need any help or want to find support groups - they have them all over the country.

Best of luck!

I have narcolepsy, too. I take 30mg of Adderall, plus 200mg of caffeine in tablet form, every four hours, four times a day. I still nap throughout the day - sometimes for just a few minutes, but usually for at least an hour or two. Provigil did not work for me. When I do exercise, I am shot for the day afterwards. I do not have any suggestions on how to beat the sleep, but, as someone else recommended, I keep reading that scheduled naps throughout the day may help. I also would recommend another sleep study, if you haven't had one in awhile, as you may have additional sleep disorders that could be affecting your energy levels. I had one recently, and I found out that in addition to the narcolepsy, cataplexy, and sleep paralysis, I have upper airway respiratory syndrome, periodic limb movement disorder, and REM sleep behavior disorder, all of which can cause excessive daytime sleepiness. I am in the process of getting a CPAP machine to keep me breathing at night and to stop waking up so much during sleep (the test showed I had 136 arousals in 6 hours and stopped breathing 72 times), I kick my legs and flail my arms during sleep, and I also have ZERO stage 3 and stage 4 REM sleep, which means I'm basically getting no sleep at all! Good luck to you!