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#1 Lucestrife



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Posted 30 May 2011 - 11:55 PM

A friend of mine who is narcoleptic experienced a very sudden wasting last year that gave us quite a fright. He is already a lean, athletic guy, but for a couple of weeks he lost weight precipitously and seemingly without cause. He stopped running or exercising in any way, he was eating 2-3 times as much as he previously would (we would go to restaurants and he'd order 2 cheeseburgers, 2 cokes, a salad and fries, when he'd normally just get a salad), but we started to be able to see his bones. We were on a cross-country road trip and out in a very rural area for much of it, and by the time we got back to civilization (the burgers were on our way out) he was starting to gain weight back again so his doctors dismissed it. But for 2-2.5 weeks it was pretty scary. I started to be able to see the bones in his arms and legs, and ribs of course. He didn't have any eating disorders and he wasn't exercising, as mentioned. No other obvious symptoms. Has anyone heard of this? It hasn't happened since but it was pretty scary. I know that cachexia is thought to involve the hypothalamus. Could this be related to the narcolepsy?

#2 TeeZZZ



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Posted 08 June 2011 - 05:59 PM

I am no expert, but I have never heard that listed as a symptom or complication of narcolepsy in all of my reading and research about the disease.

#3 utmost



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Posted 08 June 2011 - 11:08 PM

I would also say this is very unusual and merits a very thorough physical exam.

#4 angeline



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Posted 13 June 2011 - 12:02 AM

I wonder if something is going on with his thyroid?

#5 micesneeze



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Posted 27 June 2015 - 08:01 PM


I am not a doc The following may help with an answer.

Road trip? Full symptoms of N, genetic tested.

List all meds including OTC, food suppliments, all food eaten on the trip.

Keep the list. If it happens again make
the same type list.

Compare, look for something different than normal intake.

Have a normal blood test level for TSH and glucose to compare with TSH plus glucose during the rapid weight loss.

N is a hypothalamus metabolic deregulation of homeostasis.

Seek medical attention sooner.

#6 Narc0l3psy



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Posted 13 November 2015 - 01:43 AM

Yes. This actually makes sense. Hypocretin not only affects sleep, but it also affects eating habits/ eating behaviors. (Which I assume also includes metabolism etc. and how your body processes food and whatnot) I have also noticed that I personally seem to experience both rapid weight loss AND rapid weight gain regardless of eating habits and exercise.