Straightening out the Symptoms

July 17, 2011 in articles, blogs, facts, misdiagnosis, narcolepsy, Response

A Blog Post on Narcolepsy from Disease Prone, at Scientific American

@NarcolepsyNews was kind enough to suggest this blog’s author, @JB_Blogs, look to Planet Narcolepsy for more information and support regarding narcolepsy. Of course, I had to read the post that prompted their discussion, and I am pleased to report that JB was not only more accurate than 90% of the articles and blogs I’ve seen on the subject recently, but he even cited his sources! For that alone, I have to recommend the article. I also enjoyed the personal flavor James added, making the piece easy to read as well as informative.

I feel the need to expand a little on certain aspects of the post, however, to get a little more in depth and help dispel some common misconceptions that often come up when we first start researching our conditon.

First, “cataplexy” is NOT separate from narcolepsy, nor are there any “seizures” involved with the condition in the most understood sense of the word.

Cataplexy is currently ONLY associated with narcolepsy. You can have narcolepsy without the cataplexy symptom, but if you have cataplexy, you DO have narcolepsy.

Cataplexy, in combination with other narcoleptic symptoms, such as micro-sleeps, automatic behavior, and the like certainly resemble seizures, but they are caused by a misproduction and misregulation of certain hormones, to which the body responds appropriately, but which should not be being utilized at the time.

The common cause for actual seizure activity is electrical misfiring in the brain, caused by any number of reasons, and producing similar symptoms. It is the reason narcolepsy is so often misdiagnosed originally as epilepsy or another seizure disorder.

That being said, people will notice both narco-lepsy and epi-lepsy contain the Greek “lepsy,” which is loosely translated to “fit, or seizure” meaning a more general definition of “a short, sudden period of…” in narcolepsy, “narco,” which is “sleep.” Sleeping fits.

Secondly, don’t forget symptoms 3a and 5. Hypnagogic hallucinations are only half of the symptom involving these sensory hallucinations around sleep. While both involve the period between wake and sleep, “hypnagogic” refers to the period in which you fall asleep (think hypnaGOgic, GOing to sleep), whereas hypnopompic hallucinations occur upon waking (think hypnOPOMpic looks like OPENing your eyes).

Number five, although apparently relatively new to the list of symptoms, is automatic behavior. Just as cataplexy is the is the body paralyzing itself to resist acting out dreams at inappropriate times, automatic behavior is essentially the body acting out dreams at times it is not entirely asleep. And while cataplexy is the other side of the coin from sleep paralysis (when the body turns the paralysis mechanism on too early or turns it off after waking), automatic behavior is essentially a waking form of REM Behavior disorder (acting out your dreams).

Narcolepsy is essentially the body completely mixing up all parts of sleep. Those of us that have the condition tend to have increased REM sleep, decreased deep and restorative sleep, and often find ourselves tired at times we should be awake, and insomniac when we should be sleeping.

A “normal” sleeper enters the first stage of sleep generally within 15 to 20 minutes of lying down. The first REM cycle occurs approximately 90 minutes later. All told there are five stages of sleep, all with different purposes, the majority of which science is just beginning to untangle and understand.

In someone with narcolepsy and certain REM disorders, the sufferer may completely skip stage 1 sleep, and goes directly into REM sleep. This, combined with shorter cycles and frequent arousals, is part of why we narcoleptics seem to have so many and such vivid dreams.

In diagnosing narcolepsy, a “short sleep onset,” meaning the time between laying down and falling asleep, is less than 10 minutes. This is also referred to as a short sleep “latency.” In the daytime nap study to diagnose narcolepsy, sleep latency is measured, as well as REM latency, which is the time between sleep onset and REM. I, personally, did not have any REM sleep on my tests, due to certain medications I take, but my sleep latency averages about 3 minutes.

I won’t comment on anything related to the genetic studies or specific medications, because I do not focus my personal research in those areas. However, one should understand that one of the biggest reasons anti-depressants (SSRIs, SNRIs, tricyclics) appear to be useful in treating certain symptoms is because they actually repress REM sleep. No REM, no hallucinations (waking dreams), no acting out “dreams” (automatic behavior), and no reason for the body to paralyze itself (cataplexy, sleep paralysis). Now, that is a HUGE oversimplification, and there is no guarantee any medication will work on any individual’s symptoms, as we all react to different medications differently.

As for Xyrem, it is the only medication that actually IMPROVES sleep quality, as opposed to sleeping pills and anesthetic agents that only sedate. It does not suppress REM, but does seem to significantly reduce cataplexy in some patients. It seems to operate on the principle many sleep physicians work by, that improving night-time sleep will improve daytime symptoms – which certainly seems to be a reasonable expectation, and supported by the symptom improvement many of us show when we are able to follow a nap schedule or get that rare “real” night’s sleep. Currently, Xyrem is an “end of the line” treatment, and so far, insurance companies will not pay for the medication until anti-depressants and stimulants have been tried.


Food for thought:
Did you have some of these misconceptions when you started looking into narcolepsy? Do you find that people who are interested in learning more about your condition fall into these traps? Why do you think these confusions continue to persist?