Re: Narcolepsy

just to let everyone know, narcolepsy is misdiagnosed a lot. it is said to be a rare disease. it is most likely rarely diagnosed OR sadly, it is given as a diagnosis by doctors that are not sleep specialists. that said, many sleep specialists don't dx narcolepsy. some people are told they have narcolepsy by a general practitioner or holistic / alternative med doctor, and they go on to be "cured." narcolepsy is incurable at this time. the people that are 'cured' did not have narcolepsy to start with. the reason narcolepsy is incurable is because it is caused by the degeneration of irreplaceable neurons. it is caused by the loss of irreplaceable hypocretin a.k.a. orexin. the ability to replace these items via western medication , good diet, exercise, alternative means, or any other way, is akin to an amputee regenerating the missing limb.

narcolepsy is also insomnia. it is eds. it is sleep attacks. it can be cataplexy. it can be sleep paralysis, and the hallucinations. it is disturbed rem. the reticular activating system is controlled by hypocretin. the ras is what controls sleep. when that is affected, sleep is completely screwed up. untreated narcolepsy can be equivalent to a 'normal' person going three full days with no sleep and still performing their daily tasks. it can be horrendous and debilitating. it is isolating.

taking care of your body is 100% good and best advice for helping treat narcolepsy, but to lead anyone to believe that it can be cured is unethical and misinformation. there are some people with narcolepsy (pwn) that do receive benefit from alternative healing and adjusted life style. these people have mild narcolepsy and they hopefully get on the ground and kiss it and thank god for it. it has ruined my life and many others. extremely strict diets, exercise, sleep hygiene, etc, are so very important. body cleansing, etc, is helpful no matter what, BUT it will not cure narcolepsy. at this time, nothing will. if u had narcolepsy and now you're cured, then u never had narcolepsy. that said, prevention is the best medicine. maybe if u dont have it then u never will if u take excellent care or yourself. clease your body of toxins, etc. i don't remember if it was this thread or another one, but someone stated that narcolepsy was genetic. that's a long story, but there are now a few known genetic HLA markers associated with narcolepsy. those HLA markers are plentiful among the human population and most people have them. if u have narcolepsy, SUPPOSEDLY you will have one of those markers. because it is in the genes, you may be protected if you try to keep your body clean of toxins, but what do u do in the case of physical injury? and yes, it can happen that way. there is no way to completely prevent anything, but prevention is a good start to put the odds in your favor. at least that is my opinion. however, once you have narcolepsy, there is no getting rid of it. you may can keep it from progressing, but i don't know that. it makes sense, but i really don't have a clue.

this is not geared toward anyone. i just wanted to express this information.

i couldn't handle xyrem. it is now ungodly expensive and Jazz pharmaceuticals lies about it and keeps the price jacked up. it is ridiculously inexpensive to manufacture and has been tested out the wazoo already. it is currently $2485/month for full dose without insurance. for some people, it works wonders by allowing them to have appropriate rem sleep and is worth every penny that they rob from others to get it. that is a sad and sick joke.

for people with gluten intolerance: provigil/nuvigil/modafinil has gluten in it. it didn't work for me anyway.

i wish the very best to all of you with utmost sincerity and respect.

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