kimberlyaz

Poll: Narcolepsy And Weight

Narcolepsy and weight   150 members have voted

  1. 1. How has your weight changed since Narcolepsy onset?

    • Stayed the same
      17
    • Increased
      96
    • Decreased
      45
  2. 2. If your weight has changed since Narcolepsy onset, why do you think this has happened?

    • No reason, my weight didn't change
      11
    • Increased, but don't know why
      29
    • Increased, due to food intake
      39
    • Increased, due to activity levels
      63
    • Increased, due to meds
      12
    • Decreased, but don't know why
      5
    • Decreased, due to food intake
      18
    • Decreased, due to activity levels
      9
    • Decreased, due to meds
      38

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32 posts in this topic

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.

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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.

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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.

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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.

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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.

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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.

 

As a child I'd always been a bit overweight - most likely due to it being "family thing" + childhood health issues. But in High School, when my narcolepsy began, I suddenly put on about 50lbs. I remember going to the pediatrician I'd been seeing for years, who had always said I was "healthy". When I told him I was always tired and falling asleep in class, he just said "exercise more!".... Basically he completely ignored all my narcolepsy symptoms. Later I was sent to see an endocrinologist, who was also completely clueless.

 

It wasn't until college that I found a physician who talked to me for about 5 minutes and said "You're probably narcoleptic."  It really made me aware of the fact that not all doctors are created equally :P

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I was diagnosed at 25 in 1997, so yes that puts me at 43 now. lol Anyways, I was put on ritalin right away and then in 2000, I was put on Adderall which changed my life. My weight didn't really change for years.. I was on top of the world. But, since around 2006, I began gradually gaining weight.. and now am at the largest that I've been. 220lbs. OMG! Now though, my doctor has switched me to Nuvigil. I'm hoping that I will drop some weight with this medicine. Please Lord. It's really not helping my back problems and pain.

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