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Poll: Narcolepsy And Weight

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Poll: Narcolepsy and weight (140 member(s) have cast votes)

How has your weight changed since Narcolepsy onset?

  1. Stayed the same (16 votes [10.81%])

    Percentage of vote: 10.81%

  2. Increased (88 votes [59.46%])

    Percentage of vote: 59.46%

  3. Decreased (44 votes [29.73%])

    Percentage of vote: 29.73%

If your weight has changed since Narcolepsy onset, why do you think this has happened?

  1. No reason, my weight didn't change (10 votes [4.76%])

    Percentage of vote: 4.76%

  2. Increased, but don't know why (26 votes [12.38%])

    Percentage of vote: 12.38%

  3. Increased, due to food intake (37 votes [17.62%])

    Percentage of vote: 17.62%

  4. Increased, due to activity levels (58 votes [27.62%])

    Percentage of vote: 27.62%

  5. Increased, due to meds (12 votes [5.71%])

    Percentage of vote: 5.71%

  6. Decreased, but don't know why (5 votes [2.38%])

    Percentage of vote: 2.38%

  7. Decreased, due to food intake (18 votes [8.57%])

    Percentage of vote: 8.57%

  8. Decreased, due to activity levels (7 votes [3.33%])

    Percentage of vote: 3.33%

  9. Decreased, due to meds (37 votes [17.62%])

    Percentage of vote: 17.62%

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#21 flutterbye_xo



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Posted 25 September 2011 - 11:28 AM

Being a short young girl it can be devistating to gain any weight especially when you aren't considered "big". When I tell someone I need to loose weight they usually reply from where you aren't overweight. I need to try the small frequent meals thing but I never seem to have enough time to eat being in school and busy all the time. I deffinitely gained weight due to fatigue and decreased activity. I'm grateful my treatment negates that and now I'm loosing weight. As a healthcare professional I have faith in management through diet and exercise and treatments. Now if I can just stop falling asleep after running.

#22 NetiNeti



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Posted 29 September 2011 - 11:43 PM

I became vegetarian when (or around) the onset of narcolepsy in HS, although I wasn't aware of it at the time. I gained a lot of weight in college, but that was because I started weight lifting. I went from 140lbs or so entering to 185lbs at my max. I have dropped 20lbs in the last year or two because I started running, but my weight has remained at 160lbs or so, plus or minus 2lbs (and I am 5'5''). I still lift though and I have a high protein intake, so a lot of it I think is due to that.

On the Ritalin though I do find that I forget to eat sometimes. When I first started it I dropped 5lbs quickly.

#23 katiepineighty



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Posted 18 March 2013 - 11:57 AM

I was diagnosed with N about 6 months ago, and my Dr. Immediately put me on Ritalin. Before I was diagnosed I weighed 132 lbs, and now 6 months later I now weigh 115 lbs on a good day, my activity level hasn't changed much, although my eating habits are completely different. I find that I have to force myself to eat because I get to focused on my daily work that I just forget to eat. In the past my stomach would growl to let me know and now nothing... My mom is constantly on me about my weight and I don't know what to tell her when I dont know how to change it. I feel super skinny, and almost. I have started to eat healthier foods, and a lot more protien to increase the amount of nutrients I am taking in, and still I'm not seeing any results no matter how much I work out and try to build myself back up.


Is this something that will change over time? Does anyone have any ideas on what I can do to feel stronger or anything I can tell my mom to get her off my back?

#24 DeathRabbit



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Posted 02 April 2013 - 06:09 PM

Eat a late, large supper. Eating in the evening is exactly what you don't want to do if you are wanting to lose weight because it's the best way to gain it!

#25 AZsam7



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Posted 20 November 2013 - 08:09 PM

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.

Thank you for posting about this..I have been doing a lot of research on this exact connecion between the affects of  low Hypocretin on not only sleep patterns,  but appetite and metabolism.  My main focus now is on the Leptin hormone which is associated with appetite suppressant or also known as the satiety hormone and Ghrelin or the appetite stimulating hormone.  My research is explaining that inadaquate or reduced sleep hours will cause a reduction in the Leptin Hormone and will elevate the Ghrelin hormone.  This makes sense as I've noticed that I can eat more than normal and still not feel satisfied and will also frequently (especially upon waking in the middle of the night or early morning) wake up with very strong hunger pains then I have ever experienced before and probably shouldn't be feeling at these hours.   I'm looking into supplements that might combat this hormonal imbalance and hopefully curb these abnormal levels.  Still trying to put it all together with not a lot of help from my allopathic doctor and neurologist, so will soon be consulting with a natropathic doctor and see what input they might be able to offer.  My weight gain has been apporximately 35lbs in the last two years of the 3 since being diagnosed with N.  It is very frustrating as I try and eat very healthy: low carbs, no gluten, no meat and low dairy (for hereditary high cholesterol and avoidance of going on statins).  I'm in the process of eliminating sugar as well, but this is very hard to do.  I do exercise, but recently went off all my meds for N and am really struggling with energy/motivation.  I'm seeing another neurologist next month and going to go from there.  Just don't like the side affects of the stimulants and the Effexor for cataplexy, so starting over. 

#26 caitlincc123



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Posted 28 January 2015 - 11:56 AM

I have had narcolepsy all my life but as a child my mum just thought I was tired.When I was about 8 it was actually me who asked my mum to call the doctor.Reason being I was old enough to know that sleeping in class,after I ate my lunch,when I was eating,on the phone e.c.t wasn't normal and this was when the weight gain began.I'd get up during the night to eat and was constantly craving food especially sugars.I used to be the strongest and fastest in my class until my symptoms worsened and my legs collapsed after running.My cataplexy got worse and left me exhausted.The doctors had no idea what was wrong.I was officially diagnosed in 2011 after years of negative tests and failed theories.It was doctor in Australia suggested narcolepsy and a simple blood test proved I had the gene and all of a sudden every thing I did made sense to me and my loved ones.funny how the sleep tests were negative before I was put on medication and then taken off for the tests.It must have been highlighted when deprived of the meds.I have almost all of the symptoms which is apparently rare but I'm used to them.I'm on 36mg of concerta XL(methylphenidate hydrochloride) slow release in the morning and a booster in the afternoon and evening and I would never go back.I'm 16 now Although I still experience the symptoms they are a lot more controlled and everyone who knew me without meds says I'm a whole different person.Ps I was born sleeping too and we think I inherited it from my grandad as he is the same and always has been.

#27 girlboheme



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Posted 14 April 2015 - 06:26 PM

I was about 115-125 lbs up until I started feeling excessively sleepy at about 20 years old.  Now I'm 275 lbs, I'll admit that I've had a lot of life happen in 20 years but once I stopped having the energy to hike and work out like i did in my late teens/early twenties and the more I struggled with being more tired instead of more energized afterwards, the easier it was for the pounds to pack on.  

I am now diabetic and eat much better than ever but I barely have enough energy to put one foot in front of the other, much less exercise for any length of time, because my body is just so weary.  Not just achy or winded but weary from anything that takes exertion.  Trying to fix that.  


Ten years ago I was told if I exercised more I would be less tired. I was trying everything. I hired a personal trainer for 6 months.  I dropped $2400 and 30 lbs but I could barely stay awake.  I don't know. I don't like placing blame on my weight and I've been told I was lazy for so long, it's really hard to not believe it.  But I do feel that Narcolepsy has played a big part in my weight gain.

#28 slo.mo.a.go.go



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Posted 23 April 2015 - 08:55 PM

I am curious what the future holds in terms of my weight. I have lost a majority of my core muscle strength as I can no longer be active (1 round trip to get groceries of 1 city block & I have to nap after) so I am conerned abt this playing out the same for the next 40 yrs, how can I not gain weight? In theory... however, I am very very lucky to have always been on the low bmi side.

I take no credit for being a healthy steady weight. Genes but I give majority of credit to my parents.
I was taught by examples set by my mom & dad. They taught the hard lessons to a very picky eater to eat & prefer a good nutrient rich/ but not calorie dense diet. No tv, exercise. (not able to do that anymore but grateful that when I could exercise, I was.)
Plus, I "won" the genetic lottery, I take after my lean grandparents.
Plus, a food allergy to gluten, & those are my favorite foods.
Plus poverty diet.
Plus stim meds. Which I think will wear off.
Plus still a picky eater & I can't cook (anymore).

But concerning the study at hand, unhappily and embarrassingly, I have been known to uncontrollably pig out, esp when not on stims &/ or pre-bedtime & very drowsy. Every night bf sleep, I can eat large large portions, & I have bad cravings if there is some food that I crave in the house. Fridge raider. I really don't have control so all prevention, boyfriend hides the snacks. Or they gone. Too sleepy is always the key elemwnt when I pig like that though so I think a plausible N issue at play there as mentioned like the OP referenced.

#29 Enginerd



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Posted 25 April 2015 - 10:03 PM

Ten years ago I was told if I exercised more I would be less tired. I was trying everything. I hired a personal trainer for 6 months.  I dropped $2400 and 30 lbs but I could barely stay awake.  I don't know. I don't like placing blame on my weight and I've been told I was lazy for so long, it's really hard to not believe it.  But I do feel that Narcolepsy has played a big part in my weight gain.


This. Everyone (doctors included) keeps telling me that if I exercise more, I'll be less tired. It's damn near impossible for me to work up the energy and enthusiasm to exercise in the first place--which people can't seem to understand--but then I feel impossibly tired afterward, regardless of whether I've been exercising for a week straight or for the first time in a month. I've definitely gained weight since my diagnosis because I'm no longer very active, though part of this weight gain is probably because I've noticed I eat more if I haven't taken my stimulant. The scientist in me wonders if a lack of hypocretin may be causing my brain to tell me to continue eating so I have energy?...I know hypocretin is involved in appetite, I'm just not sure how. Either way, I'm hoping I can force myself to be more active in the future so I may lose weight.

#30 everythingthatshimmers



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Posted 26 April 2015 - 11:23 AM

I was never truly overweight but was told for years to exercise when I complained of tiredness, fatigue, low energy. Interestingly enough, I was only told this after test results came back negative. Much like how I was prescribed an antidepressant only when I became upset when I felt my hypersomnia treatment wasn't effective. I feel like healthcare providers in general are too quick to say "The narrow and likely inadequate things you were tested for came back negative so YOU must be the problem. YOU should exercise more, YOU should prepare and eat more nutritious foods, and there's a good chance that there's a psychiatric illness fueling this anyway because who can really be that tired?" And as a patient, it's really hard to say to this person who barely knows you, this professional, that you struggle with your diet and exercise because some days you can barely get out of bed. That can be a very hard and shameful thing to admit and so you continue to believe that you are indeed the problem.