kontxesi

Extreme Weight Loss After Starting Meds?

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I was diagnosed on April 30 and started taking Nuvigil on May 1.

Week 1 (150mg): -3.2 lbs

Week 2 (250mg): -8.8 lbs

This week, I've had no appetite. I can feel that my stomach is empty, but it's not triggering a hunger response. I don't eat anything all day (NOTHING; I've ingested only pills and water), and then some small snack around 6PM. Three days of this in a row.

Has anyone else experienced this when starting on stimulants? I didn't see loss of appetite/weight loss in the side affects list. Not that I don't need to lose weight, but not eating isn't exactly helping my energy levels!

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Yes.

I started 100 mg. of Provigil daily last June. Lost 7 lb. a month for five months. I was delighted...at first. After losing 35 pounds (and I needed to), I looked like death warmed over.

I have gained back 20 pounds and am holding steady there for the last four months.

You MUST get some nutrition into your body. Try Ensure or some other liquid meal replacement served over ice. It's a little easier on the stomach and feels like you're being sinful. :)

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Yes.

I started 100 mg. of Provigil daily last June. Lost 7 lb. a month for five months. I was delighted...at first. After losing 35 pounds (and I needed to), I looked like death warmed over.

I have gained back 20 pounds and am holding steady there for the last four months.

You MUST get some nutrition into your body. Try Ensure or some other liquid meal replacement served over ice. It's a little easier on the stomach and feels like you're being sinful. :)

 

Yeah, I'm definitely going to have to plan to eat now. I've had fruit with me every day this week, but I never get it out of my bag. Guess I'm going to have to set "eat something!" alarms on my phone. ;)

 

Meal replacement shakes are a good idea; I'll pick up a case to keep in my fridge here at work. I decided not to take my meds over the weekend, and I don't think I was having this problem then. My memory is crappy, so who really knows? I'm going to have to keep an eye on it.

 

But hey! At least now that my grocery spending is going to go down, I'll have the money to buy the pills! :P

 

The ladies at Weight Watchers freaked out last night. "Who do I have to pay to get that kind of loss?!" A pharmacist, apparently! I was definitely a little more worried than excited, myself. A 2-week loss of 12 lbs after 6 months of stagnation?

 

Ferret, I'm curious. Did that 35 lb loss bring you to/close to your "ideal" body weight? Did you gain that 20 lbs back after making conscious dietary choices, or was your body compensating automatically, or did you have a drug change? I'm just trying to get a feel for what I should expect with this. I know every body does things differently, but.... Just wondering.

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This is the story...

In '86, I was prescribed Ritalin for the N and Tofranil (imipramine) for the C.

In six months, the Tofranil and put an extra 50 pounds on a slim, trim and "healthy" 35 year old. At that six month mark, my hubby said to get off the meds or it was divorce time...that I was NOT the woman he married. I was irritable, short fused and bouncing off the walls. There were no other med choices at the time.

I went through rebound cataplexy and was pretty much a veg for 18 months. The weight never came off...not in 28 years...and stayed at 180 pounds (5'7")...but at least I was a nicer person to live with.

Last June was my FIRST attempt at meds since the disaster. As a 62 year old, my ideal weight would be 150 pounds...so yeah, I achieved that. However, at 62, your skin just doesn't shrink back the way it does when you're young. I tried believe me but I really looked cadaverous.

I have been making a conscious effort to eat more.

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So after almost a year, you're still having to think about eating, it sounds like. Good to know. At this point, trying to make sure that I eat enough to keep my body running/make sure I don't lose weight too fast seems SO much more manageable than trying not to eat when I'm hungry (bored? emotional? just because food is awesome?) all the time, but we will see how it goes. I definitely need to make sure I still cook dinner somewhat regularly, as my brother lives with me.... He helps with the rent, so I can't starve him out!

 

I gained about 50 lbs when I was 13, when I was prescribed my first antidepressant. (I'm pretty sure this was actually the narcolepsy setting in, disguised as depression. Weight gain can probably be blamed on the meds and the N.) Over the next thirteen years, that 50 lbs slowly built up to 150. I managed to lose 30 lbs last year on WW, but from Thanksgiving until now, I've been on a roller coaster with no progress at all. I was really excited to finally get a diagnosis, because I thought that having pills that would give me more energy would at least allow me to get to the gym more. I wasn't expecting them to actively contribute to my weight loss.

 

 

Anyway. Sorry if I'm rambling on about things no one cares about.... It's only been two weeks since my diagnosis, and I'm still trying to figure out exactly how it all works and what it's going to do to my life.

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I would get protein bars as well as fruit to eat. You're going to be losing a lot of muscle if you're not careful (been there done that, unfortunately). Make sure to try to get at least a few fat calories and good supply of lean proteins.

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Oh, I definitely won't be living on fruit alone, that's just been my go-to breakfast lately. I generally get my fats and proteins in at dinner, and some at lunch on occasion. I'll be keeping a closer eye on it now, though, for sure. I also try to go to the gym at least 3 times a week, so that should help with muscle mass.

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Weight lost has been a big issue for me between Adderall, vigils and Xyrem. I was uncomfortably thin and people thought I had cancer.

I agree with Ferret about Ensure (I always confuse that with Depends) but I would suggest holding on the ice, since cold bevs can trigger sleepiness for some.

The sugar in fruit can give you a spike and subsequent crash. Do keep up with your lean protiens during the day.

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When I started Nuvigil for ~3 months, then switched to Adderall, I lost 30-35 pounds over 4 months. A year later, I've gained back maybe 5lbs, but I look much better. I got a lot of comments about "looking sickly", and "are you okay?" when it first peeled off...

 

I forgot to eat almost altogether during the workday for the first ~6-8 months (and still do sometimes)...

 

I even tried to set alarms to remind me to eat and drink water, but it really didn't work out.

 

Once it wore off in the evenings I sort of got hungry, so I tried to make sure to "make dinner count". Trying to force myself to eat food only made me nauseous and wasted food.

 

And it was cool in a way, because it gave me the occasional freedom to indulge some- not only during dinner, but also all those times at work when someone brings in cake/dessert/whatever- due to all the calories I saved elsewhere.

 

So basically, I just let myself eat (almost) whatever I want whenever I'm actually hungry, and I try to get plenty of protein in. ***Not saying that this is the way to go, but this is what works for me.***

 

These days, I've started getting a tiny bit hungry for lunch (almost a year into my Adderall Rx), but I'm still satiated very quickly.

 

My BMI was right at the middle of normal before, and now it is on the far low end of normal; though with my frame and low fat %//high muscle %, I look better a little heavier. But I think I'm one of the lucky ones, in general.

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I started at 105 in Dec, and I'm 95 today. Two weeks ago I was 92. I'm not short or tall, and what butt I had either fell off or got lost somewhere. Plus my bra's are only about 2/3 full which is awkward. 

 

We asked the sleepydoc about the weight and he said to make ice cream milk shakes. I'm not a fan of cold stuff, and I'm always so cold that I can't do it so:

 

I now drink ensure, and when I say drink ensure I have them on subscribe and save at amazon, and I still have to do a costco run. I'm saying like 3-6 a day. I spike my milk with half and half, or skip the milk and pour half and half on my cereal. I use carnation instant breakfast, never say no when a co worker offers a treat, even if I don't want it, and I CONSTANTLY make sure to make dinner count and snack in front of my kids. My oldest daughter is 11 and she keeps weighing in and talking about weight and being skinny and stuff, so I want to make sure that they see me eating! I eat peanut butter with apples, avocado, anything that has a heavy 'good' fat. 

 

Not only am I not hungry, but I also don't want to eat. It just seems like a lot of work. Then once I get started, it's really not so bad and a bit delicious. My husband has compared this to 'relations' it makes us laugh. 

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At one point I was supplementing 1400 calories a day and making myself eat with no desire or satisfaction. My clothes made me look like Tom Hanks in Big.

My sleep doctor said I was the only Narcoleptic she had treated who was not obese and that I should be happy. I was not.

There is no sympathy from the general population for weight loss. It was really a miserable time for me. I have since been off stimulants and manage my EDS with lifestyle adjustments- radical but necessary. I now look normal, can exercise without further weight loss, feel hungry and enjoy what I eat.

I hope you find something that works for you that is sustainable.

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My sleep doctor said I was the only Narcoleptic she had treated who was not obese and that I should be happy. I was not.

 

That attitude drives me crazy. It's obviously better to be skinny and miserable than fat and not miserable, right? Who cares how you feel, it's so much better than being a fatty.  <_< I don't tend to stay with those doctors long.

 

 

Cooking is one of the things in life that I enjoy, and I do have another person who is expecting me to prepare meals, so I should be okay for dinner. Like rayray, my struggle is going to be forcing myself to eat while I'm at work. I'm going to start with fruit for breakfast and a meal replacement shake for lunch, with timers on my phone to remind me. If it's still coming off too fast, I'll have to step it up and add some protein bars.

 

 

I started at 105 in Dec, and I'm 95 today. Two weeks ago I was 92. I'm not short or tall, and what butt I had either fell off or got lost somewhere. Plus my bra's are only about 2/3 full which is awkward. 

 

We asked the sleepydoc about the weight and he said to make ice cream milk shakes. I'm not a fan of cold stuff, and I'm always so cold that I can't do it so:

 

I now drink ensure, and when I say drink ensure I have them on subscribe and save at amazon, and I still have to do a costco run. I'm saying like 3-6 a day. I spike my milk with half and half, or skip the milk and pour half and half on my cereal. I use carnation instant breakfast, never say no when a co worker offers a treat, even if I don't want it, and I CONSTANTLY make sure to make dinner count and snack in front of my kids. My oldest daughter is 11 and she keeps weighing in and talking about weight and being skinny and stuff, so I want to make sure that they see me eating! I eat peanut butter with apples, avocado, anything that has a heavy 'good' fat. 

 

Not only am I not hungry, but I also don't want to eat. It just seems like a lot of work. Then once I get started, it's really not so bad and a bit delicious. My husband has compared this to 'relations' it makes us laugh. 

 

Half and half on cereal just blows my mind. I'm in a position where I want/need to lose weight, but I just don't it to happen this fast, I want to make sure I get my nutrients in, and I don't want to lose muscle mass. I can't imagine how much I would have to be eating if I wanted to maintain or gain! Which Ensure drinks are you using? (And good on you for worrying about your daughter's relationship with food! It's incredible what kids will internalize.)

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Just whichever store brand is cheapest or on sale. Sometimes the plus if I'm feeling sickly. It's a really expensive habit. Also, half and half is delicious on mini wheats.

We keep telling the kid to chill, she's going to be slender by nature. It would take really bad choices or a medical problem to change that. I hate how hung up on it she is. She'd do better in life if she concentrated on matching clothes :).

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Just whichever store brand is cheapest or on sale. Sometimes the plus if I'm feeling sickly. It's a really expensive habit. Also, half and half is delicious on mini wheats.

We keep telling the kid to chill, she's going to be slender by nature. It would take really bad choices or a medical problem to change that. I hate how hung up on it she is. She'd do better in life if she concentrated on matching clothes :).

 

Ha! Oh, how I wish I'd had someone to help me with my wardrobe when I was that age.... I might have actually had some friends. :P

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Do you know what causes people with narcolepsy to be obese?

 

I've only known two people with narcolepsy (a client, and myself- if that's what I have) and she was very thin.  I'm on the low side of normal and it's a lot of work to be that way.  I have supplements and a meal plan I have to stick to...

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I wouldn't call it extreme, but I've been losing weight little by little since starting Adderall. The medication kills my appetite pretty well. Actually happy it does, I need to lose the weight anyways,

 

Do you know what causes people with narcolepsy to be obese?

 

I've only known two people with narcolepsy (a client, and myself- if that's what I have) and she was very thin.  I'm on the low side of normal and it's a lot of work to be that way.  I have supplements and a meal plan I have to stick to...

 

Probably just the lack of physical activity due to the low amounts of energy most Narcoleptics have.

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Probably just the lack of physical activity due to the low amounts of energy most Narcoleptics have.

 

And trying to find energy through food. Since my diagnosis, I've taken a hard look at my eating habits and noticed that I'm much more likely to go across the street for a honey bun and other junk if I'm really tired.

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I think unmedicated narcoleptics tend (just generalizing) to be the overweight ones, because yeah, less energy, means you're less likely to exercise and more likely to stop by BK on the way home, instead of cooking something for yourself. And then, of course, medicated narcoleptics tend to have the weight fall off them for obvious reasons.

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There are some quite interesting studies about Hypocretin and the way it regulates not only sleep/awake stages but also appetite. You can google them if interested.

As Wabbit said, the stimulants tend to keep the weight off.

But, if you are taking an antidepressant to control cataplexy, then all bets are off. Most antidepressants cause weight gain and I found it impossible to get rid of the weight even when I stopped the antidepressant.

Damned if you do and damned if you don't. Are we having any fun yet?

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I think unmedicated narcoleptics tend (just generalizing) to be the overweight ones, because yeah, less energy, means you're less likely to exercise and more likely to stop by BK on the way home, instead of cooking something for yourself. And then, of course, medicated narcoleptics tend to have the weight fall off them for obvious reasons.

 

Exactly. I mean, cooking is something I'm passionate about, and I think 50% of my meal plans go out the window because I'm just too flipping tired to fix dinner. Also, apparently working out is supposed to give you a burst of energy? I am passed out within an hour of getting home from the gym.

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It clears my head sometimes, which is great, but I've never gotten a "burst" of energy from working out.

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Seriously, what's a "burst of energy"? Oy. I've forgotten. That said, I do get a few hours of relative alertness post-working out. Even if you're too tired to manage cardio, strength training is very helpful for keeping muscle mass and it doesn't feel as draining as cardio.

 

I'm on antidepressants, so even though I take Adderall I've barely lost any weight from it…and that was the one thing I was hoping I'd get out of this crappy situation. It makes me less hungry but it hasn't translated to weight loss. Weird.

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I started my full 9mg dose of Xyrem in April. The weight started to melt off me. I always had curves (150-160) was healthy appearing. I'm now struggling to stay at 129. I'm eating candy bars, cookies, pizza, anything! I have no appetite and feel sick at the idea of food throughout the day. At dinner, I can easily consume 2-3k calories. But I'm still losing. Having always had a little weight on me, I feel unattractive. It's self esteem. No one else would understand, 'oh you are losing so much weigh?' Poor you. That's our society. But it's unattractive after a point. I'm praying the holidays will help me gain something, anything! It's so good to know it wasn't just me. I was af aid something much more sinister was going on.

N/C is an awful disease. Any aspect of it, it reaks havoc on your life.

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So- here's my 2 cents for you. Well flippin' done that you are cooking often and going to the gym. There are plenty of non- narcoleptics who do neither.

Ease up on the high expectations. If you crash after working out, then plan on it. If some nights you need take-away, then dial for dinner.

I did not know I had limitations before diagnosis. I almost ruined myself by demanding so much of myself. I even had cataplexy during a triathlon- but didn't know what it was so I kept going when my legs started working. I am much more humane in the way I treat myself now.

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I've had problems keeping my weight up since I was a baby, and I finally got it stabilized  for several years with a BMI of about 21, then I was put on Nuvigil since Provigil didn't work out. I think I was on it for two, maybe three weeks and went off of it against my sleep specialists advice when my BMI dropped below 18 with no signs of slowing down. That was 20 lbs in about 3 weeks and I didn't notice any helpful effects from Nuvigil either, but maybe I didn't take it long enough. Next time I saw my general practitioner, the nurse mentioned being concerned with how much weight I lost, and the doctor just said, "She should be thankful; I wish I could lose weight."

That was about five years ago, and I still struggle to keep my weight in a healthy range (haven't been on any meds since). I don't know what Nuvigil did, but I just don't feel like I need to eat anymore, but of course I know I do. It's not even like I don't eat because I nearly always eat twice a day plus dessert. 

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