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Anyone Else Struggling With Weight Gain?


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#1 Bexterina

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Posted 15 October 2012 - 03:26 PM

Is anyone else out there with N struggling with weight gain? I suspect I had N for about eight years before diagnosis (which was in 09), but my weight has been increasing since right before I was diagnosed. Now I am at 5'4 and 175 lbs., which is considered obese by BMI standards. I was once a thin girl, and now I have quite a belly and double chin. I admit that I don't exercise like I should between having no energy from N, working full time, and going to grad school. I think I eat healthier now than I ever did, but my weight just keeps creeping up. I understand Ritalin is sometimes used for weight loss, but after four years on it, it hasn't had that effect.

It's really depressing and I don't feel like myself anymore. Can anyone else relate?

#2 DeathRabbit

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Posted 15 October 2012 - 03:45 PM

Is anyone else out there with N struggling with weight gain? I suspect I had N for about eight years before diagnosis (which was in 09), but my weight has been increasing since right before I was diagnosed. Now I am at 5'4 and 175 lbs., which is considered obese by BMI standards. I was once a thin girl, and now I have quite a belly and double chin. I admit that I don't exercise like I should between having no energy from N, working full time, and going to grad school. I think I eat healthier now than I ever did, but my weight just keeps creeping up. I understand Ritalin is sometimes used for weight loss, but after four years on it, it hasn't had that effect.

It's really depressing and I don't feel like myself anymore. Can anyone else relate?


I was the opposite, I guess. I've been overweight/obese all my life, but now I've fallen into the lightly pudgy category. What changed me it seemed was getting hormone therapy. I started being able to lose weight and able to exercise better after they diagnosed me with low testosterone and put me on injections. The stimulants do help too. When my adderall was in full effect, food sounded gross. This may seem contrary to most advice, but I recommend eating out more and keeping less food at the house. I got into a routine where I would go get a small amount of food at the drive thru, then go home and eat it. Even if I was still hungry, I had no food in the house so I didn't have the option of overeating. Obviously, it would be preferable to make fresh food at home and control portions, but I found that if there was food around, it was hard for me to abstain. I'm actually much better at starving myself than just eating small portions. Once I get started, it's difficult for me to quit eating, haha. But starving is really counterproductive in the end cuz you lose as much muscle as fat. I'm 6'0" and I'm less pudgy now at 190 than I was at 175, simply because when I was that low I had done it without proper exercise so I had no muscle tone. Now my goal is just to get down to that 175 again the proper way, without sacrificing any muscle. It's slow going, but I've lost 5 lbs since July. At the end of the day, it has just been eat less, exercise more. That's how I lost from 270 lbs to where I am now. Sorry, you're going through this; I wish I had a better answer :/

#3 LauraL

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Posted 15 October 2012 - 10:13 PM

Yeah, I can relate. Absolutely, definitely relate. I don't have any advice for losing weight, but I do want to recommend the book "Health at Every Size": http://www.lindabacon.org/HAESbook/, which is really helping me get through the frustration surrounding the recent weight gain I've experienced. I'm trying to focus on not worrying about my weight, and instead pay attention to my lifestyle choices and habits. In the past, my weight has stabilized at a place I was comfortable with as a result of those healthy lifestyle choices--now that I'm dealing with multiple chronic illnesses and multiple medications, I don't know if it will stabilize at the same place. I'm trying to be okay with that, and realize that I can still enjoy all the benefits of a healthy and active lifestyle, even if my weight never returns to what it was.

Sorry, I don't think that's really what you're asking for. But that's how I'm dealing. Good luck! Be kind to yourself!

#4 Heidi L

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Posted 18 December 2012 - 06:03 PM

Narcolepsy is a metabolic disorder. It alters our insulin metabolism and we produce more white fat than other people. We also produce less brown fat, which lowers our basal metabolism.
In addition, Orexin cells are glucose sensitive and high blood sugar shuts them down.
If you are eating a low fat diet, your symptoms will increase and you will gain weight. It's a fact.

If only Narcolepsy Network cared enough to share that information....

For all my research on this topic, please read my website: www.zombieinstitute.net

Best regards,
Heidi

#5 Jmac05

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Posted 10 December 2013 - 09:23 PM

I was the opposite, I guess. I've been overweight/obese all my life, but now I've fallen into the lightly pudgy category. What changed me it seemed was getting hormone therapy. I started being able to lose weight and able to exercise better after they diagnosed me with low testosterone and put me on injections. The stimulants do help too. When my adderall was in full effect, food sounded gross. This may seem contrary to most advice, but I recommend eating out more and keeping less food at the house. I got into a routine where I would go get a small amount of food at the drive thru, then go home and eat it. Even if I was still hungry, I had no food in the house so I didn't have the option of overeating. Obviously, it would be preferable to make fresh food at home and control portions, but I found that if there was food around, it was hard for me to abstain. I'm actually much better at starving myself than just eating small portions. Once I get started, it's difficult for me to quit eating, haha. But starving is really counterproductive in the end cuz you lose as much muscle as fat. I'm 6'0" and I'm less pudgy now at 190 than I was at 175, simply because when I was that low I had done it without proper exercise so I had no muscle tone. Now my goal is just to get down to that 175 again the proper way, without sacrificing any muscle. It's slow going, but I've lost 5 lbs since July. At the end of the day, it has just been eat less, exercise more. That's how I lost from 270 lbs to where I am now. Sorry, you're going through this; I wish I had a better answer :/

I had issues with weight gain when taking Modifinil (Alertec) - which is funny because it was also used to treat obesity - I am not on Ritalin - only since a month ago because Modifinil was on back order - and I have experienced a complete loss of appetite. I suppose it goes to show that different people are going to react differently to different medication. It may also be wise to check what other medication you are taking (if any) and consult with your doctor to see if there is possibility that the combination of medications are a potential reason for weight gain.



#6 carrieannburns

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Posted 17 April 2014 - 06:33 AM

You should check out some of these Facebook groups for advice on how to keep it off, or change your diet / lifestyle to possibly become more healthier and there are some people with advice who have Narcolepsy and are trying to keep weight off.. 

 

 

Rockin Bods For Pwn:

https://www.facebook...30270840384216/

 

Gluten Free Pwn:

https://www.facebook...01209643334907/

Lifestlye Change For The Sake Of Narcolepsy:

https://www.facebook...36055773234497/



#7 meemoo

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Posted 17 January 2015 - 08:26 AM

I'm really struggling. Ever since symptoms started I've been steadily gaining weight and just feeling so hungry all the time. I'm fructose intolerant so I don't eat sugar and I.cook.all my good and yet I keep gaining weight. I'm trying to find time to exercise and find an exercise that won't exhaust me too much. Any suggestions? I've read this is common but it would help to know I'm not alone. I don't take catapulted meds and I think a.lot of people lose weight on that. But I just take Nuvigil and some other meds for a mood disorder.

#8 Ferret

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Posted 17 January 2015 - 10:38 PM

What are the other meds for the mood disorder? Antidepressants are notorious for weight gain. Google it.

When I was first diagnosed in '86, I was put on Ritalin for the EDS and Tofranil (Imipramine) for the cataplexy. I gained 50 pounds in six months and it never came off...even after I discontinued both meds at the six month mark.

Fast forward to June 2014 and I started Provigil and the weight fell off for six months, then stood still and then crept back on. I have now discontinued Provigil (last October) because it also became non effective.

Everybody's different.



#9 meemoo

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Posted 18 January 2015 - 10:18 AM

Well, abilify is the one that caused the most weight gain. I finally got off it and the two i am on now aren't associated with weight gain. But now I'm still dealing with feeling hungry all the time.



#10 starfish

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Posted 18 January 2015 - 10:38 AM

My dr told me weight loss on stimulants is very little and that when u build tolerance to the drug the weight usally comes back becuase it mainly alters urs appetite

#11 semontgo87

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Posted 20 July 2015 - 10:53 AM

I grew up slightly chubby thanks to family lifestyle and being on prednisone as a kid (for "asthma" that turned out to be sinuitis). Just as I had started to lose some of the chub in highschool, narcolepsy hit me and I suddenly gained 50lbs. I was told that I was insulin resistant (it does run in my family), and put on a low carb diet that helped. It didn't help with my energy levels though, of course. Later, in college I was diagnosed with narcolepsy and put on provigil and trazadone. My weight didn't really seem to be affected by either of these. I had lost about 30lbs thanks to low carb dieting before those meds. I currently take a small dose of nuvigil and trazodone.

 

Since then its been a constant battle for me. I gain and lose, but I've never really successfully gone below about 175lbs. (I'm a 5'5" female btw). That happened when I was living/working in Poland. As soon as I came back to the USA, I had a bad 6 months of circumstancial depression and gained about 30lbs back. Low-carbing it hasn't seemed to help as much since then.

 

Something else I tried a few years ago was an HCG diet. It can be controversial, but the one I did was medically supervised, and I think I probably had less issues with it than a normal person, thanks to having a low metabolism (also I was eating about 1000calories/day, the standard is 800). In 6 weeks I lost about 25lbs. It stayed off for a long time too, about 1.5 years. I slipped back to bad habbits due to stress and gained about 10lbs back. (I should mention that I live with family members who are less than supportive of my efforts to eat any particular way that doesn't match theirs).

 

Lately I've been interested in thermogenesis. I think part of my weightloss in Poland was due to cold adaptation - we had municiple heating, and I was frequently feeling a little chilly in my apartment. Like mentioned by Heidi L, Narcoleptics are known to have less brown fat, but cold exposure is known to encourage new brown fat formation. I'm not sure how easy it is to acheive when we lack orexin, but I figure it's worth trying as a "complementary" element to diet and exercise. I've also been trying to add some more probiotic foods into my diet... there's some speculation that having the right "gut flora" is helpful in keeping a healthy weight. Miso soup please :)