I haven't had the spinal tap and I don't plan to! They several years ago, though, that Narcolepsy is caused by a deficiency of a chemical in the brain called hypocretin. They had been doing research on a group of dogs with narcolepsy for some time, when they finally isolated hypocretin as the missing chemical in our brains. The same week (if I remember correctly) a group researching problems with appetite using mice isolated the same chemical and named it orexin!
I was just reading the Winter/Spring issue of The Network from Narcolepsy Network. There's an article "Eating Well in 2010". It explains that people with narcolepsy have special problems regarding weight. It says, "It has long been speculated that there is a connection between deficient sleep and obesity because the brain hormones that control appetite are inhibited when the body is fatigued. Moreover, the body more easily stores fat when stressed from too little sleep."
The article goes ahead and explains about orexin. It then says that a recent study found that "orexin administered to dogs and mice with narolepsy improved their sleep. The study also found that sugar contributes to obsessive behavior and exacerbates cataplexy among mice." (This was of special interest to me because I discovered that if I totally abstain from sugar and caffeine my cataplexy improves greatly.)
The article also quotes a holistic health counselor who says that "Sugar creates a negative cycle in the body. One craves more and more sugar to raise energy levels when they drop." The article suggests eating fruit as a more natual source of sugar.
Hope that helps.
--- In email@example.com, "mirandamarkley" <mirandamarkley@...> wrote:
> Has anyone on here ever heard of a hypocretin deficiency for people with narcolepsy. I seem to gain weight at a fast pace and talked to my sleep doctor about it and he had mentioned something about hypocretin. I did some research on the internet and found that they do a lumbar puncture to test for this. Has anyone had this done and what were your results?