23 replies to this topic

[Kimberly]

Just thought I'd get us talking about any weight changes since Narcolepsy onset.

For example, since my symptoms first appeared 14 years ago, my weight has dramatically increased. However, once I learned last year that I had Narcolepsy and got medicated, I started watching my food intake and increasing my exercise, and my weight has been slowly but surely decreasing. I was prescribed one funky med for my Cataplexy that halted my weight loss, but once I got off of it I got back on track.

I tend to think of weight struggles in terms of people who have excess weight that they want to lose (since that's my own situation), but have also heard from folks whose weight has gotten too low due to prescription amphetamine usage.

Weight struggles are certainly very personal and can be very emotional. Thanks to those of you who want to share your stories.

[Marcianna]

I myself have been constantly fluxuating. I'll get really big, then reallly tiny. Everyone thought I was on drugs. It sucked. I'm on the bigger side at the moment, but am currently on a downward spiral again... lol... next year I will be buying all new clothes.... again. ugh.... and after that... I will likely go up again. It's very annoying....

[Mike M]

Marcianna,

I totally hear that. I haven't voted in the poll yet because I could choose all three options. I was in the high 180s when I was diagnosed. Then, the Provigil strip weight out of me. My stimulants continued to "help" me drop weight (more slowly than the Provigil). I eventually dropped below 150. THEN, I started on BP meds (since amphetamine sends my BP to 150/100), and the weight came back. I am now in the mid 180s again. So, I have lost weight, gained weight and stayed the same. All of which makes my head spin.

[caitlion]

I wasn't sure if I should respond in the poll either :)

I was about 110 lbs (I think?) when I was diagnosed with narcolepsy in April 2007 and had been between 100 and 115 for years.

Probably due to medication, I had gotten down to around 90 lbs by this time last year (January 2008).

I stopped taking my medication and started drinking tons of energy drinks in the beginning of February 2008 and within 5 months had gained 50 lbs.

In September 2008 I started taking meds again and have lost 35 lbs since.


I think a lot of this probably has to due with medication, but it is very confusing. I have always been pretty small, but have eaten a lot. I guess I just had a fast metabolism. When I got on stimulants I ate just as much if not more than usual because I didn't want to lose anymore weight. When I stopped taking the stimulants, I gained half of my body weight.... which is very strange to me. Could the meds have changed my metabolism or maybe my body just changed at the same point that I was figuring out my meds?

[too exhausted]

I have always been 114 lbs apart from 3 episodes when my N & C got worse. Within a month of one of these periods I would put on 14lbs. I find it really hard to get this weight off. I had one of these periods over a year ago and went up to 126lbs. I have watched my diet (gluten free for 6 months), swam on average twice a week, on amphetamines and xyrem and have not lost a 1lb or an inch. I have gone up two dress sizes and the weight has gone on my bust, back and stomach.

[desertpond57]

I have always been 114 lbs apart from 3 episodes when my N & C got worse. Within a month of one of these periods I would put on 14lbs. I find it really hard to get this weight off. I had one of these periods over a year ago and went up to 126lbs. I have watched my diet (gluten free for 6 months), swam on average twice a week, on amphetamines and xyrem and have not lost a 1lb or an inch. I have gone up two dress sizes and the weight has gone on my bust, back and stomach.

Well now I see its not just me. This time thats where my weight ended up and everytime its more and harder to lose. This is was the worst its ever been and always triggered by something like double pneumonia or a life changing crisis. Thats when my symptoms get worse and stay that way. If that wasn't bad enough, new ones showed up for the party this time and once they do they never leave. I now have episodes where I lose time and have no memory of what I did. I've walked away in the middle of sex, lost 20 min. in the shower and ended up on the exit ramp on the freeway. If I didn't have a sense of humor I don't know how I'd get through each day.
desertpond57

[eightlegs]

apart from 3 episodes when my N & C got worse. Within a month of one of these periods I would put on 14lbs. I find it really hard to get this weight off.

reading all of this I can't help but to wonder... I come from an obese family, yet I've been the sole one who has been very mindful of my weight and health. My weight ballooned during my pregnancies, but through very strict diet I was able to get it back off... slowly, but it did come off...

Now, my health is going downhill, and my weight is creeping back up. I'm still by no means overweight.. but at this rate it won't be long until I am. It baffles me as my eating/exercise habits havent' changed... but I am noticing the correlation between my symptoms getting worse and my weight increasing....

[desertpond57]

reading all of this I can't help but to wonder... I come from an obese family, yet I've been the sole one who has been very mindful of my weight and health. My weight ballooned during my pregnancies, but through very strict diet I was able to get it back off... slowly, but it did come off...

Now, my health is going downhill, and my weight is creeping back up. I'm still by no means overweight.. but at this rate it won't be long until I am. It baffles me as my eating/exercise habits havent' changed... but I am noticing the correlation between my symptoms getting worse and my weight increasing....

I know theres a connection between our symptoms getting worse and weight gain cuz I'm there. I feel like my brain and metabolism quit speaking to each other a long time ago. I went through this when I needed a hysterectomy so between hormones, illness and emotional trauma you get 20-30 lbs. as an added bonus. My knees are shot from falling as it is and the extra weight mixed with arthritis and a Michigan winter is nothing short of pure hell. On the bright side....it'll be like a whole new wardrobe if my clothes ever fit again, HA!

[2muchcoffee]

I've gained tonnes of weight in the past few years. For a while, my weight stayed the same. It started to creep up very slowly as my symptoms got slowly worse. After I had my 3rd daughter 3yrs ago I started different meds. My pregnancy weight started to come off then suddenly it went higher than my highest pregnancy wieght and it hasn't stopped climbing since! I'm only 5' tall and my weight has (almost) always been 120lbs. Now I'm up to 170ish. Trust me- 170lbs on a 5' person is NOT a good thing! I'm not sure if it's due to narcolepsy, lack of energy, medication or just age but I hate being this big! Admittedly, I hate to work out so that could be a big part of the problem! I've altered my diet before, watched what I eat but that seems to make no difference in my case. Every time I switch medications I hope that I get the "may cause a decrease in weight" side affect but I've had no luck yet!

[desertpond57]

I've gained tonnes of weight in the past few years. For a while, my weight stayed the same. It started to creep up very slowly as my symptoms got slowly worse. After I had my 3rd daughter 3yrs ago I started different meds. My pregnancy weight started to come off then suddenly it went higher than my highest pregnancy wieght and it hasn't stopped climbing since! I'm only 5' tall and my weight has (almost) always been 120lbs. Now I'm up to 170ish. Trust me- 170lbs on a 5' person is NOT a good thing! I'm not sure if it's due to narcolepsy, lack of energy, medication or just age but I hate being this big! Admittedly, I hate to work out so that could be a big part of the problem! I've altered my diet before, watched what I eat but that seems to make no difference in my case. Every time I switch medications I hope that I get the "may cause a decrease in weight" side affect but I've had no luck yet!

Speaking for myself I can honestly say its not about food intake. I could eat lettuce everyday and it wouldn't make a difference. Over the years I've noticed that when my system is jolted whether physically or emotionally, the N/C gets worse, weight increases and stays until something jump starts it again. Then the weight would come off and everything would be fine for about 3 years, and it was always the same amount of weight until now. This time instead of 20 lbs. its more like 40 and when your knees are sensitive from buckling or falling the extra weight just keeps me in a constant funk. This is the first time I've had medication and I was hoping that would help. Still waiting.
I think something gets screwed up in the way the brain is supposed to transmit signals to the part that controls metabolism. I let you know if everything starts working again.

[Henry G]

My doctor in Brazil said it is very common to put on weight after Narcolepsy. The body craves for carbohydrates non-stop. In fact, she has a bowl of gummies so patients can nibble away while on consultation.

So my N is atypical really. Not that I lost weight. But I starve off myself frequently. Fasting reduces my EDS, but the moment I eat I feel very very sleepy.

Some people wake up with sugars. Sugar-rush they call it. They go high. Hyper. Gosh even a glass of Lucozade might send me to sleep.

[Saraiah]

I have gained 120 lbs. during the last 13 years. Sometimes I've lost a small - large amount of the weight, but then it comes back. Things are complicated for me, since I have to take a few medications for depression that tend to cause weight gain. N has also made it very difficult for me to stay awake long enough to exercise - during the past 2 years, I was making it through the work day, coming home, and collapsing in bed. When I was younger, I maintained an "ideal" weight. When I was in my teens and 20's, I was a very active athelete in non-competitive sports like swimming, rock climbing, bicycling, running, etc. Now I do very little - if I have the energy to get out and walk for 45 minutes, it's a major achievement.

I felt at least validated when I found out that the loss of the same hormone hypocretin/orexin that causes N ALSO causes problems in regulating appetite and energy/calorie expenditure. Now at least I know that my increased level of hunger has a physiological cause. Not that knowing that makes it much easier to override.

Saraiah

[ejohnson22]

When I went off to College I knew that there was a greater risk of gaining weight for a number of reasons, so I made sure that I stayed active and ate right, but I was still continuing to gain weight. I ended up joining a Boot Camp (work out program) and although I was working out extremely hard it was still hard for me to lose weight and when I would lose it, I would gain it right back. It has been a struggle for me over the past 3 years that I have been at college. I was recently diagnosed with Narcolepsy and the weight gain began to make more sense. Now that I have found a medication that I feel is right for me and I am stable on all my medications I hope that by watching what I eat and continuing to work out that I will begin to see a weight loss.

[eww]

My weight has been up and down like a yo-yo too. At the moment at 145lbs I think I am the smallest I've been since my early teens (I'm 24). My largest was 205. Not good. Like others, I've determined that my weight fluctuations have very little to do with what I eat or how much I exercise. When I had a physical job and was very conscious of my eating habits my weight balooned to it's highest ever. And that was when the N became very noticeable. Also, at another point I was working out
everyday and lost a grand total of 10lbs in 8 months. When I stopped going to the gym for 4 months, I lost 15lbs.

So yeah, there's no way diet and exercise can be behind it. Actually I lost 5lbs on a 3 day "cheesecake and poutine" diet a few weeks ago. LOL. I was hungry and wanted junk. A girl's gotta do what a girl's gotta do.

Modafinil made me lose weight at first but it evened out within a few months. I'm on Dex now and I think that is probably contributing to weight loss. But mostly I think it brain-malfunctions in that I forget. I forget to eat or forget to get groceries so then there is nothing TO eat in my apartment and by the time I get ready to go get groceries I'm asleep again. So that's Erinn's weightloss diet, lose your mind and you'll lose the weight. LOL.


I keep 1/2 a closet of "fat clothes" just in case though, because you never know when the tides will turn again...

[Stacy D]

I was doing pretty good taking off baby weight and getting in shape after I had my daughter 2 years ago, but then I went back on Effexor, had surgery to remove scar tissue from 2 c-sections, and my N got really bad so now I'm back to as much as I weighed the day I had her. I don't exercise any more but I also don't eat much at all because of the Adderall. Luckily I'm too tired to care how fat I am but I would really like to get back in shape and look good. I used to run 5K and 10Ks for fun and back in the day I ran a 7-8 minute mile. Now I'm built for comfort, not for speed. Hopefully once I get treated I will be able to exercise and lose some weight.

Did not know that my insane carb cravings were another N thing. I thought I must be depressed or something. I've always enjoyed eating, but now I could eat pasta all the time and never get sick of it.

[Young_confused]

I am on Nuvigil for the last 2 months, I have lost a total of 20lbs and I am still losing weight. I am depressed which usually makes me eat more but I just dont car about eating now I dont enjoy it. When I stated all I had to do was wait for my stomic to grumble or hurt and I would get really hungry and eat. I would not eat as much as I used to and it would be really hungry and really fast. Now I have not eaten a real meal in 2 days my stomic is always making noises but I dont want to eat. I know it is crazy and that I must. I tempt myself with candy and ice cream. I try to drink a lot of liquids and juice so I at least have calories. But it does not help that I have not had work so I dont have money so I can only eat what is already in my kichien. I know I need help and I am getting it but for night now everything is hard. I am just hoping right now that I dont sleep though my doctors appointments.

[yamirotten]

I'm not sure how long I've had narcolepsy for, but I know that weight has always been an issue with me.

Up until my Sophomore year of high school, I had been chubby - when I hit 167 Lbs (I'm only 5'3", with an athletic build from all the years of dance) I decided that it was time for me to hit the gym. I lost 20 Lbs from a rigorous exercise regimen as well as a strict diet (400 crunches/40 push ups/20 double leg lifts every day, plus two hours at the local gym, plus 1500 calorie diet). At that time, I was probably the healthiest I have ever been in my entire life.

Regardless, I still had symptoms (sleeping on the 15 minute ride from high school to the gym by my house at the time) and I was beginning to get into a lot of young and reckless behavior.

It wasn't until I was prescribed Adderall and Adderall XR that the weight began to shed off. Within just a month, I had shed about 30 Lbs. It wasn't until I began to dip below 130 Lbs that I noticed my body beginning to react to being (unintentionally) starved of nutrients.

Over time, the weight began to creep back on - especially if I was unable to take my prescription for a while.
It melts right back off as soon as I begin my regular dosage.

[Niki V.]

I was just recently diagnosed within the last year but looking back now I know that I have had Narcolepsy for a very long time now. I was 100lbs when my husband and I married in 1997 and I gained a lot of weight when I got pregnant with our daughter. After having her I lost a good bit of the weight. I then started gainging slowly over the years until I reached 160(I think) at the beginning of 2010. I was wearing a size 12. This was the biggest I had ever been in my life, not complaining!

I started losing my hair in large amounts and I was slowly losing weight, 3-4lbs a month. I was tested for all sorts of things and was diagnosed with Prenicious Anemia(B12 anemia). I now give myself B12 shots several times a month for this. Then I was sent for a sleep study and that is when I was diagnosed with Narcolepsy. Since starting Ritalin in October, my weight has dropped to 115lbs. That's a total of 45lbs in less than a year. I lost 5lbs in the first week of taking Ritalin! I am now on a weight check with my doctors and it sucks!!! The meds really work well for me with the least amount of side effects and I don't want to change. I am fighting a daily battle to control my Narcolepsy and now my weight!

Wish me luck I go this week for a weight check and I hope the doctor is happy and doesn't change my meds!!!!!! I am holding at 115lbs, maybe I can weight my pockets down...LOL...just kidding!


P.S. I do want to say one thing....I am tired of people thinking that losing weight is GREAT!!!! It's not, none of my clothes fit, and people treat me different now. I have lost a close friend over my weight loss because of her being insecure with her own weight. And people are always asking me about my weight and I am tired of the questions!!!!!

[blahblahkathy]

You all should check out Stanford University's neurological disorders site. Stanford has gone so far as to consider adding weight gain to the symptoms of narcolepsy. Hypocretin, the protein that narcoleptics lack or have very small amounts of, regulates not only sleep, but also appetite and weight control.

And just for the record, I don't take any medication for narcolepsy, but my weight fluctuates regularly. I'll gain 20 lbs, then lose 20 lbs, then gain it back, and on and on and all without changing a single thing in diet, exercise, etc. When my narcolepsy symptoms are worse, I tend to gain weight. When my symptoms aren't as bad, I tend to lose the weight again.

Also, I've recently tried adding more protein to my diet, and though it doesn't seem to be affecting my weight in any way, I do seem to have a little more energy during the day. I'm a big fan of Dannon's Oikos Greek Yogurt, each cup has somewhere between 11 - 15 grams of protein. Plus, it isn't that heavy of a meal, so I don't get all drowsy after I eat it.

[sueno]

I work abnormally hard at controlling my diet and general environment at all times to keep off easily accumulated excessive weight. Eating several times a day works best for me, small meals. I eat clean whole foods as much as possible. Others around me don't have to be as strict as I have to be and sometimes it puzzles me. My metabolism must be ridiculously slow - not only am I always cold but I have found out over the years the weight gain/loss is not near as impacted if I exercise or not, nothing works as well as strict attention to my diet.