in the spirit of the guy posting saying his diet change helped put narcolepsy to sleep...
when narcolepsy was kicking in hardcore (and expedited i think possibly because even when it started kicking in, i had no idea about it, and i still tried to sleep 4 hours a day work 50+ hours a week play in a band and party all the time). when narcolepsy set in, i really just could not eat normal, mainly from the whole passing out thing. i mean, even if i passed out for five minutes after eating dinner i was instantly starving again and would especially sugar... really sucked and put a lot of weight on me. i used to be around 210-215, during narcolepsy i slowly rose to 245-250, which is what i weighed before my health foods diet decision mentioned above, so i didnt think much of it. i figured, alrite, well, im gettin older i need to start exercising and cut the sugars out for a bit i guess...
i then moved into my aunts because i was done with a lease and was slowly losing money becuz i was working less and less becuz i just COULD NOT do it. most of you know what i mean in that regards, microsleeps, EDS, etc... so nice aunt that she was, let me live at her place, and eat her food while i looked for another job and also tried to figure out what was wrong with me since i had mental issues that were concerning me as well as physical ones (all narcolepsy related). eating her food DID NOT help me lose weight at all lol
narcolepsy got much much worse, eventually i gained more and more weight until i was around 290.
earlier this year, i was 293, the most ive ever weighed in my life. then, i got a prescription for provigil. that was almost four months ago. thanks to provigil, i was able to start working more and pick up a second job even, am playing music with two bands, AND AND AND AND weigh in the low 260s range at the moment. i didnt even have to start exercising, although i think im goin to start up again just to get rid of the rest of this fat faster. also did i mention the best part?? i didnt...
I SLEEP FANFRICKENTASTIC and wake up ready to face the day each day. i do eat some of the foods on that list, but i can certainly say i notice the results on my body. mainly i end up eating potatoes here or there, or a few of the fruits... the alcohol thing doesnt seem to affect me much except when i drink multiple days in a row and drink a lot.
i recommend a healthy diet, and adhering to it. use the provigil like i did or whatever drug you can get, make some crystal meth in your bathtub if ya have to, but only use the drugs to help get you 'back in the game'. thats the worst thing about narcolepsy i think is it is really nasty in that it slowly sneaks up on you while you are developing it so it kinda pauses your life and makes it difficult to unpause it without the help of drugs of some sort.
no, this is not being typed in a provigil haze either btw. i was prescribed 200 mg of provigil each day, and i take 100 to 200 mg a day... sometimes, like today, i dont take any, and i am fine. i have to be sure to go do something after eating more than a snack however, but nothing more physical than just walking around somewhere will do the trick. ive noticed that coffee still has damn near no effect on me however lol unless i down a ton of espresso at once and even then i end up more jittery than anything.
exercise plus a healthy diet is the key to damn near everything. if you dont believe me, then you havent fully applied yourself in my opinion. you have to stick to it for at least a couple weeks to see the benefits, and the older you are and longer you have lived the more 'western'/american type diet, i would imagine it will take longer to adjust to what your body natural wants as a diet.
for a GREAT place to find out about natural foods and some recipes go to http://www.whfoods.com/
and no, i do not run that website so this isnt one gigantic advertisement lol
oh yeah, did i mention? .. no, i didnt.. i manage to only wake up a few times a night now, and sometimes will go to sleep for 4 to 6 hours without waking up. god it feels good. no matter what though, i dont think ill ever be leaving my favorite narcolepsy forum site alone =)
my pulmonologist told me when i visited him 4 weeks ago, who was surprised that i had dropped to around 270 at that time... i think he never believed me when i said i have never weighed close to the 290s before lol
anyhow, he told me that within ten years we should be seeing an "insulin" for narcoleptics in the form of a synthetic orexin/hypocretin pill. he claims that the ten year estimate is including clinical trials and all that paper work stuff, so good good news.
ALSO - for anyone who read the post about strep, i dunno bout any of you, but i remember having strep throat like a mother effer a couple times when i was younger, as well as tonsillitis once too... curious.
btw, for all of this diet stuff, i dunno how it applies to N w/ C cuz i think i am N without C, so no offense to the Nw/C'ers of the group with me saying you can tackle it if you try hard enough. how do i go about gettin my hypocretin levels checked? i know its in the spinal fluid but i mean do i have to ask for it to be done or is there maybe a research group thing i can get into to get it done? im curious about it and didnt have it done for me.