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Narcolepsy Diet, Etc


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#1 austeenob

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Posted 20 October 2012 - 08:50 AM

What is a great diet to help help lessen all the narcolepsy symptoms? I currently having ben taking Xyrem for a while and have Nuvigil but I only use this in an emergency to where I didn't take xyrem.. And any, any other information would be awesome.. Like exactly whats going on to create the disorder: narcolepsy.. Let me know suggestions, theories.. stories of getting better etc. I had feeling like crap.

Thanks you, and hopefully there will be a cure soon for all of us.

Austin

#2 DeathRabbit

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Posted 20 October 2012 - 09:15 PM

What is a great diet to help help lessen all the narcolepsy symptoms? I currently having ben taking Xyrem for a while and have Nuvigil but I only use this in an emergency to where I didn't take xyrem.. And any, any other information would be awesome.. Like exactly whats going on to create the disorder: narcolepsy.. Let me know suggestions, theories.. stories of getting better etc. I had feeling like crap.

Thanks you, and hopefully there will be a cure soon for all of us.

Austin


Well as narcolepsy is a defect in the Orexin system in the hypothalmus, it's not as simple as to be cured by altering diet. :/ However, following healthy eating habits always helps promote wellness. I've also heard many people promote gluten-free dieting. I don't think it's going to help you if you don't have celiacs, but hey, you never know. If gluten wasnt in practically all pre-prepared foods, I'd try it. I don't have time or energy to cook for myself, though.

#3 The Dreamer

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Posted 25 October 2012 - 09:17 AM

Well as narcolepsy is a defect in the Orexin system in the hypothalmus, it's not as simple as to be cured by altering diet. :/ However, following healthy eating habits always helps promote wellness. I've also heard many people promote gluten-free dieting. I don't think it's going to help you if you don't have celiacs, but hey, you never know. If gluten wasnt in practically all pre-prepared foods, I'd try it. I don't have time or energy to cook for myself, though.


And if you suspect Celiac...its important to find out first, before going gluten-free. Because the gluten antibodies won't be present for the Celiac test after you go gluten-free.

Yeah...I don't have the time to prepare and bring in my own lunch....whenever that might be, etc. Though I imagine its just a matter of time that options will exist around campus....though it hasn't stopped me from picking up the occasional book on the subject.

The Dreamer

#4 sk8aplexy

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Posted 25 October 2012 - 12:14 PM

The worst part of the Gluten-free, current phenomona, is foods costing double to quadruple the average cost...
I'd state that eating organic foods, as much as possible, and eliminating for instance the cheap 'basic' ingredients for what you cook and eat; can have an impact that is quite beneficial, for anyone.
'Basic' ingredients would be things like Table Salts (try Sea Salt or better yet Himalayan Salt), or Refined Sugars (try Honey or an organic sugar at least), or Vegetable/Canola Oil (try finding non-GMO oils which 50% of Olive Oils today are; but Sesame and Coconut Oils for example)...
Sorry but, GMO's are pesticides and fertilizers within the food, which result in the belly (and whole system) not being, as well; not to mention Growth Hormones and Antibiotics effect/s...
Yes, cooking for yourself and preparing foods for yourself when out and about, is crucial and requires time, practice, plus patience.
But if you can pull it off, it is worthwhile; and you do learn to find alternatives that satisfy your urges, in time...
It's no cure; but food is, or can be, medicine.

Good Luck, to All.

#5 DeathRabbit

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Posted 25 October 2012 - 01:17 PM

The worst part of the Gluten-free, current phenomona, is foods costing double to quadruple the average cost...
I'd state that eating organic foods, as much as possible, and eliminating for instance the cheap 'basic' ingredients for what you cook and eat; can have an impact that is quite beneficial, for anyone.
'Basic' ingredients would be things like Table Salts (try Sea Salt or better yet Himalayan Salt), or Refined Sugars (try Honey or an organic sugar at least), or Vegetable/Canola Oil (try finding non-GMO oils which 50% of Olive Oils today are; but Sesame and Coconut Oils for example)...
Sorry but, GMO's are pesticides and fertilizers within the food, which result in the belly (and whole system) not being, as well; not to mention Growth Hormones and Antibiotics effect/s...
Yes, cooking for yourself and preparing foods for yourself when out and about, is crucial and requires time, practice, plus patience.
But if you can pull it off, it is worthwhile; and you do learn to find alternatives that satisfy your urges, in time...
It's no cure; but food is, or can be, medicine.

Good Luck, to All.

I'm not sure I worry about the GMOs as much, but pesticides and fertilizers do worry me a great deal. Though GMOs do piss me off with the way those assholes at Monsanto use cross pollination as a way to legally wrangle independent growers out of their rightful crops/land.

#6 The Dreamer

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Posted 25 October 2012 - 08:30 PM

I have heard other PWNs praising organic foods, and I did have a bad reaction to fruit once....which was attributed to the kind of chemicals they use during the time of year that I got them. Was coincidence that I was just starting Xyrem....

The problem is organic foods don't last as long as the regular. Its basically 3 or 4 days tops, while I can get a week or more out of the regular fruits and vegetables. Which is important in that I only go to the grocery store at most once a week.....and used to be only on Saturdays. If I missed a Saturday..then I'd have to wait to the next Saturday to go...and there would be times where several of them would go by before I finally make it in for groceries again. I keep pretty well stocked on non-perishables, and there have been times where its either a pizza delivery or a chinese food delivery guy showing up for weeks and weeks straight. Though these days its possible for me to go out on Sundays now....

The Dreamer.

#7 drago

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Posted 27 October 2012 - 03:14 AM

What is a great diet to help help lessen all the narcolepsy symptoms? I currently having ben taking Xyrem for a while and have Nuvigil but I only use this in an emergency to where I didn't take xyrem.. And any, any other information would be awesome.. Like exactly whats going on to create the disorder: narcolepsy.. Let me know suggestions, theories.. stories of getting better etc. I had feeling like crap.

Thanks you, and hopefully there will be a cure soon for all of us.

Austin


There are two things you can do:

1 - get tested for possible neurotransmitter and vitamin deficiencies. When I had a Taurine deficiency, my EDS was awful! Taurine is essential for making GABA, which balances the energy in your system... once I fixed my diet, I felt a LOT better.

2 - ask about a ketogenic diet. Usually only kids with refractory epilepsy will do this, because Ketogenic Diet is GREAT for your brain... not so much for your body. Alternatively, something that is made as a supplement can be prescribed as a medical food. It's called Axona. It's actually prescribed to treat Alzhiemer's (among other things) but this helped me out A LOT.

drago

#8 sandygears

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Posted 25 November 2012 - 09:25 AM

Pretend you are a diabetic and cut out all sugars and refined flours. That includes fruit juices, and reading all labels (even soups have sugar!). Try it for a week or two- the difference should be immediate. I found, on accident, that sugary items exacerbate my cataplexy and narcolepsy.

What is a great diet to help help lessen all the narcolepsy symptoms? I currently having ben taking Xyrem for a while and have Nuvigil but I only use this in an emergency to where I didn't take xyrem.. And any, any other information would be awesome.. Like exactly whats going on to create the disorder: narcolepsy.. Let me know suggestions, theories.. stories of getting better etc. I had feeling like crap.

Thanks you, and hopefully there will be a cure soon for all of us.

Austin