Questions about people with narcolepsy?!


Question: hey there, i was just diagnosed with narcolepsy today by my doctor. i already know what it is but im wondering if people who have it have had success with the different meds to treat the symptoms? My doc put me on provigil and i just wanted to know if any1 has had success with it....i also have severe depression and anxiety so im hoping treatment for narcolepsy will help with those problems as well....please post any experinces you've had with narcolepsy or how the meds worked for u, im only 16 and alredy having so many darn problems i feel hopeless...and im sure this sleep disorder has effected the way i am at school(im not a great student because i always feel so tired)


Answers: hey there, i was just diagnosed with narcolepsy today by my doctor. i already know what it is but im wondering if people who have it have had success with the different meds to treat the symptoms? My doc put me on provigil and i just wanted to know if any1 has had success with it....i also have severe depression and anxiety so im hoping treatment for narcolepsy will help with those problems as well....please post any experinces you've had with narcolepsy or how the meds worked for u, im only 16 and alredy having so many darn problems i feel hopeless...and im sure this sleep disorder has effected the way i am at school(im not a great student because i always feel so tired)

"a nap is only nice when it's a luxury, not a necessity."

provigil is the only one actually made for narcolepsy, and it often has the least amount of side-effects (like crashing off it when it starts to decline in your system or feeling anxious like some of the other meds might do.) feeling helpless and depressed is really common for this disorder...sleep affects every aspect of the human life, so it makes sense that a sleep disorder would too. but it gets better, really, especially if you give provigil some time to work. it's a good med made specifically for this, so they worked a lot of the bugs out of it that other drugs have. you'll probably find that feeling more awake will carry over and help relieve some of the depression & anxiety too. and some of the meds for narcolepsy (like those used for cataplexies) are often mild antidepressants. if you have cataplexies, maybe that's something to look into as well.

at your age, you can expect that the symptoms will probably get a little bit stronger over time, but it levels out by late 30's-early 40's (yeah, i know, at 16 that sounds like a lifetime away, but it's not that long, trust me, lol). you don't mention which symptoms you show now, but you may find new ones starting over time that you don't have right now (like cataplexies or sleep paralysis). not all narcoleptics have problems other than sleep attacks, though, so you might not develop other ones. i have nap attacks, cataplexies, hallucinations, sleep paralysis, automatic behavior, fugues...while my father only feels tired all the time. every case is different so every prognosis is too.

depending on the severity of it and how well you manage the symptoms of it, you may not find the need to be on meds in the future. i took them regularly for 16 yrs or so (i was your age when diagnosed and have taken cylert, ritalin & provigil at various times), but haven't been on anything for a few years now. i have better control over symptoms now, and that makes all the difference in the world. my father has never taken anything, nor has my brother. (it's a family affair here, lol.)

now for the lecture, lol:
don't make my nephew's mistake and fall into the trap of, "well, i have narcolepsy, i can't control my sleep anyway so there's no point in trying." that's like a diabetic saying that since they have sugar issues, they might as well eat all the sugar they can. it doesn't work that way. he stays up late at night, takes naps for hours at a time, doesn't take his meds regularly. and he is surprised that his narcolepsy is the one in control. there are behavior modifications that may need to be made, but if they are done, you will feel MUCH better and may find that you are able to concentrate better in things like school. that includes not only taking the meds prescribed, but following a sleep schedule and sticking to it. you need to be pretty strict with this, not an easy thing to do on weekends, but your body will thank you for it. go to bed at the same time every night, get up at approx the same time every day - your body will get on a rhythm so make it work FOR you rather than against you. when you take naps, limit them to 20 mins and under - have someone there to wake you or set as many obnoxious alarm clocks all over the room as you need to wake up. it will recharge your batteries like nothing else will. but taking anything longer will have the opposite effect, so don't lie down for a 2-hr marathon nap when you get home from school. eat something high in protein when you wake up for the day, but not something heavy in carbs - it will help give you that extra boost you need to get going. school starts way too early for a narcoleptic, but you can't change that so doing these things may help you deal better with it.

provigil is one of the drugs used for narcolepsy, so if this one doesn't pan out in the end, don't feel too badly...there are others that may help. give it time, take in control of your sleep patterns, and you will probably feel much better soon. now that you have a name for what makes you feel so draggy, you can start to work with it and reclaim some of the life you feel you've lost.

good luck. find a support group, even on-line ones are good. feel free to e-mail if you like. it's not an easy disorder to live with, especially in the beginning...but sometimes talking to others who have been thru it helps.
http://health.dir.groups.yahoo.com/dir/H...
and you can tell the world about it with something cute from here:
http://www.cafegiftshop.com/health/narco...

Provigil was a godsend for me

I was always so tired and never had enough energy for anything, even just the daily tasks in life were hard to accomplish

with kids this lifestyle was hard to manage! My doctor put me on it and I started feeling so much better and always having enough energy...not jittery or feeling like I was crashing.

I haven't been on it in a few years, but it really does help

Good Luck!

great med. i refill that med for patients all the time. it comes in 200mg. he may of said start with 200mg. it too strong you can break in half. it can cause stomach ache, because it gives you alot of enery, and decreases hunger. remember too eat. this med will help with sleepiness. have they ask if you will do a sleep study. you may not be sleeping well at night.





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