17 replies to this topic

[fishinmom]

My 17 yr old son has narcolepsy and has been on Provigil for one year. He has always been a picky eater and eats much less than his peers. He is a three-sport varsity athlete and is actually losing weight. I know there is a hypocretin/appetite link to narcolepsy, but I often hear it discussed with issues of being overweight, not underweight. Could his eating habits be narcolepsy related, or am I stretching things where there is no connection?

[LisaB]

Hi Fishinmom!
I've been on Provigil for a couple of months and yes there is a drastic change in my appetite. I can no longer eat an entire meal at a restaurant. I always need a doggybag. I haven't been on it long enough to lose significant weight but have hope that this is the case as 10 years ago for no apparent reason I gained 50 pounds that will not budge no matter what diet or how much exercise.
I would also look up information about the hypothalmus, a part of the brain. I found this article helpful. http://www.npi.ucla....earch/sciam.htm.

[bee]

Your son is not alone. Provigil has substantially decreased my appetite as well. Put another way, it seems that Provigil prevents me from realizing that I am hungry; I rarely get "hunger pangs" in my stomach and I don't realize I'm starving until I have a headache. I also now prefer bland food. I'm not sure about the science surrounding it, but I have been on the drug for two years and have gone from a size 4 to a size 0 (not a drop I wanted to make). I have established an eating schedule, and that is helping me put the pounds back on.

[Marinaki]

Provigil sadly has not decreased my appetite... I was always slender I am 5'8'' and initially when I started 100mg a day I was 125lbs. Granted since then I have stopped the gym... (bad choice) and am now 140lbs.

Personally I feel that Narcolepsy it'self is an appetite suppresant in that you are too tired to eat when you want to there for curbing your appetite. If you are taking your naps too late in the day say after 330p and for longer than 10-15 min your sleep for that night will be affected... or at least mine has been... I wake up @ 5am take my provigil work 6:30 take my break @ 11am nap for 40min I am out of work @ 330p go to the gym till 5pm come home and if i have to I will take a 15min nap only because it is so late I try to be in bed by 10 the latest.... I have found that the gym helps me to stay awake until bedtime which helps me to actually sleep through the night. But then again i have my entire life (according to my mother as well ) never been able to sleep more than 6 hours.

[luckychi_3]

I wish I was in the same boat as you all. I do not eat alot in the morning, or afternoo. But if I do not go to bed right after I take my Xyrem, I g et the terrible munchies. I can eat a whole meal about 30 minutes after I take my night-time meds. I used to weigh at the most 125-130 lbs, and I was solid muscle , now that I can no longer work, I have gained so much weight, I weigh between 145-155 lbs, which all the muscle has turned to flab. I hate it, I wish I had the energy to work out....

[Deedee]

Hi. I'm 22 years old, and about 6 years ago i started falling asleep in class, my marks dropped drastically. So my mom took me to the neurologist and they did all kinds of test, all of them negative for narcolepsy....The doctor prescribed Ritalin that really did work. But then i never went back for another dose coz i seemed to be alright after that. Now my weight goes up by almost 5 kilos every year, and i dose occasionally esp at work...HELP! Is this narcolepsy or a thyroid problem....really inconvinient!

[kmara]

I always ate a lot and never really worried about it too much, im 16 and obviously now i worry about it a lot more. my friends at lunch try to get me to eat but either im just not hungry enough or really not in the mood to eat and i can do just fine for the rest of the school day but then eat more once i get home. I was on provigil for a while but now im on ritalin. my weight seems to be going up but i also have just been getting taller. Im probably 5'8 about 140 pounds, i was probably 125 a year ago. So im not sure if this relates in anyway to narcolepsy, i like to say so just so that people dont think i like to skip meals, i just am not as hungry as i used to be.

[flipflop]

Hi Fishinmom!
I've been on Provigil for a couple of months and yes there is a drastic change in my appetite. I can no longer eat an entire meal at a restaurant. I always need a doggybag. I haven't been on it long enough to lose significant weight but have hope that this is the case as 10 years ago for no apparent reason I gained 50 pounds that will not budge no matter what diet or how much exercise.
I would also look up information about the hypothalmus, a part of the brain. I found this article helpful. http://www.npi.ucla....earch/sciam.htm.

I can relate! I've been on Provigil for about 2 months and my appetite has completely changed. I eat close to nothing for breakfast and lunch. Sometimes it is 2:30pm and I realize I have not eaten anything yet! :shock: Unfortunately my hunger returns for dinner (I say unfortunately because it is healthy to eat a large breakfast & lunch, and a small dinner. I'm doing the opposite!). I used to be an awesome cook and now I have no motivation to cook anything fantastic, probably because I'm not craving anything. I now rely on my husband to tell me what he is craving so I cook something besides top ramen :wink:

I still try to exercise, so I've been forcing myself to eat breakfast so I do not pass out from weakness when I'm running. It has only been 2 months so I have not lost a drastic amount of weight but I can tell my face is skinnier and my jeans are a bit more loose. I gained weight the past year because I was an emotional eater, so I'm hoping to loose about 20 lbs.

The information on the hypothalamus is great. 'The hypothalamus controls body temperature, hunger, thirst, and circadian cycles.' Explains why my temperature has been affected as well.

[Helios]

Yeah, I simply forget to eat on Provigil. I went 48 hours the other day...the feeling just isn't there. I have to make myself eat.

I enjoy food, and if it is there and I remember that I need to eat, I'll go for it. I'm a fat kid...I was a football player: I'm 6'3" One bad thing about not getting hungry on Provigil for me is that sometimes it makes me binge. I'll eat half a pizza, just because I'm scared I won't remember to eat again.

I've also experienced quite a few headaches since starting Provigil. The drug also gives me an eerie feeling, hard to explain. Prior to Provigil, I didn’t take any meds since I was a small child. I didn’t even like to take painkillers and I avoided antibiotics…I like my immune system ready to handle my status as a college student. The drug does work for me, even if it is underwhelming, so I keep taking it. I thought it wasn't making a difference, then I stopped for a couple of days. I missed a couple of classes and slept for 18 hour periods...so I went back on.

These days I end up eating one meal a day, which isn't healthy, but there's not much else to do. Maybe Xyrem will change things for me.

[gurlzylla]

I too had the same result from Provigil. The first week I started treatment I was told to ease myself onto the meds. I don't think I ate solid food for about 10 days. I was buzzing around, and not eating on only 100 mg! I am not a picky eater by any means... but nothing was appealing anymore. My husband got so worried that he bought me a case of meal replacement drinks!

My doctor suggested that I eat smaller meals and concentrate on protein when I was looking for a snack. He explained that my body would zap through carbs and that carbs may actually leave me feeling more tired!
Of course, I don't avoid carbs entirely, I am just a bit more mindful of what I am eating.

[Julie A]

I can relate! I've been on Provigil for about 2 months and my appetite has completely changed. I eat close to nothing for breakfast and lunch. Sometimes it is 2:30pm and I realize I have not eaten anything yet! :shock: Unfortunately my hunger returns for dinner (I say unfortunately because it is healthy to eat a large breakfast & lunch, and a small dinner. I'm doing the opposite!).

Yes, I too have the same side effect. When I take my provigil, I take 200mg in the morning and then 200mg at noon. I can't eat all day. Zippo! Around 5:00pm, I get super hungry. As you said, before, typically it is unhealthy, at least weight wise, to eat a large dinner. As we all know, it just kind of sits there and yes, I gain another pound by morning.
I read in some info packet my doc gave me, that Narcos are supposed to avoid carbs throughout the day and only eat them at night as they can make you tired whereas normally, you are supposed to do the opposite. I think that even though it really may be unhealthy to only eat at night, I can rationalize it and therefore I can tell myself that I'm doing the "healthy thing" for my condition.
Hey, it sounds good right?

[Cryopathic]

My 17 yr old son has narcolepsy and has been on Provigil for one year. He has always been a picky eater and eats much less than his peers. He is a three-sport varsity athlete and is actually losing weight. I know there is a hypocretin/appetite link to narcolepsy, but I often hear it discussed with issues of being overweight, not underweight. Could his eating habits be narcolepsy related, or am I stretching things where there is no connection?

Hey there Fishinmom, I belive that your son's appetite may be realated with Narcolepsy, I also have an appetite problem and will only eat specific foods, and I also have N. If your son wants to talk to me just gimmie a pm.

[Chuck Z.]

I've gotta chime in here I have already in another (almost) unrelated post, but --

I have ALWAYS been skinny. I have no urge to eat and i have zero setiety. I find also, if I eat a large meal, my microsleeps get more frequent and severe. My theory is that some "interpret" this in two ways: one - "if I eat i will feel bad and spacey", two - "if i eat i will feel better and cozy sleepy". Its a documented fact that most individuals will gravitate to what makes them feel better (regardless of condition - eg Kleine-Levin Syndrome; folks will almost eat salt out of the shaker to feel better even tho it is oxymoronical and harmful).

Also, I seriously doubt provigil has anything to do with appetite supression. If the med works, I would guess that it will make those that were eating more eat less and I would venture to guess those that were eating less possibly eat more (even tho I have not noticed any change in my own appetite).

Just my two cents -- discard at your leisure

[bagpuss]

EVERY DRUG THAT I HAVE BEEN ON I WAS TOLD BY MY DOCTOR THAT IT WOULD SURPRESS MY APPETITE.AND TO BE FAIR IT DID, SOME WORSE THAN OTHERS .I DIDNT UNDERSTAND HOW MUCH UNTIL I CAME OFF THE DRUGS.IM NOW BACK TO EATING THREE MEALS ADAY.EVEN BREAKFAST .AS NORM EVERYONES DIFFERENT .

[blinkyb]

My 17 yr old son has narcolepsy and has been on Provigil for one year. He has always been a picky eater and eats much less than his peers. He is a three-sport varsity athlete and is actually losing weight. I know there is a hypocretin/appetite link to narcolepsy, but I often hear it discussed with issues of being overweight, not underweight. Could his eating habits be narcolepsy related, or am I stretching things where there is no connection?

I think they are.
Personally, i lost 5 kilo's in the past 5-6 weeks. thats about 12 pounds.
i'm too tired to eat, and before that, i would only eat choclates and stuff to stay awake at school and at my afterschool job.. i used to eat sugar.. now my apetite is low because school's finished and i stopped working too.

[xiola23]

My appetite drastically fluctuates. I did however notice a MAJOR dip in appetite when i was on Provigil...as well as meds for other health issues like PCOS.
I lost 50lbs in one year which is a good thing because I needed to lose weight, but I definitely didn't 'try' to lose it. It seems that 3 weeks out of the month, I can barely eat anything...and each week I seem to stick to one type of food. i.e. hot dogs one week, pizza the next and veggies the next......then BOOM!...the 4th week I can't get enough food...I never feel full during this week and seem to never have a big enough shovel to the get the food in fast enough. I don't know if any of this relates to Narcolepsy, but it's been going on like this for years now....just not as drastic since starting and stopping Provigil and some other types of meds.
I have high testosterone and PCOS, so this could all be due to that....and PCOS (polycystic ovarian syndrome) i am finding can be caused by a damaged hypothalamus.....so could really be all tied into Narcolepsy...who knows.

[nyemvula]

My 17 yr old son has narcolepsy and has been on Provigil for one year. He has always been a picky eater and eats much less than his peers. He is a three-sport varsity athlete and is actually losing weight. I know there is a hypocretin/appetite link to narcolepsy, but I often hear it discussed with issues of being overweight, not underweight. Could his eating habits be narcolepsy related, or am I stretching things where there is no connection?

Well this reply is coming quite a long time after it was posted, but I figured I'd put in my two cents anyways. I have read about the hypocretin link, and definitely think that it plays a big part in N and appetite. I was never on provigil, but I have been on Adderall for about 2 1/2 years now. within the first year or so of being on the medication, I lost 50 pounds. I know in my case I was a little on the heavy side to begin with, so this was not necessarily a bad thing. Anyways, how I look at it (at least in my case) is the lack of hypocretins causes a lack of control over the areas of eating and sleeping. when a medication is taken to counter act this, (regulate the sleep cycle), it also "regulates" the appetite. In many cases, the appetite probably doesn't need much adjusting. This would then seem to me to be a legitimate theory as to a cause of weight loss. Hopefully my ramblings made some sort of sense to you. I'm sorry if they didn't; I can re-type this if you would like. Anyways, Hope this helped!

God Bless!

[Ms.Vanna]

Hello, You know your son sounds a lot like me only a lot younger. But, anyhow I've noticed that when I'm extremely tired I don't have the energy to eat. And, after you eat more than likely you become sleepy. WHat narcoleptic wants that. It's amazing I am trying so hard to gain weight and maitain what little bit I have but, am having the hardest time doing so. I believe they are directly related. I'm constantly losing weight, one dr. told me it's because of my medication. My mother causes it modern day speed and thinks I am going to end up killing myself in attempt to stay awake. But, I don't think it's that badm at leaste I hope it's not.

My 17 yr old son has narcolepsy and has been on Provigil for one year. He has always been a picky eater and eats much less than his peers. He is a three-sport varsity athlete and is actually losing weight. I know there is a hypocretin/appetite link to narcolepsy, but I often hear it discussed with issues of being overweight, not underweight. Could his eating habits be narcolepsy related, or am I stretching things where there is no connection?