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Living with Narcolepsy

What it means to actually cope with this disorder


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So…they say you have Narcolepsy. Exactly what does that mean?
For some people, their symptoms manifest as uncontrollable periods of sleep, like the stereotypical falling asleep in your mashed potatoes. For others, their ability to concentrate for any length of time becomes impossible. Some people experience hypersomnia in which they sleep for hours on end. The severity of symptoms can be mild to extreme.

Most people are not diagnosed with the disorder and live their lives thinking they are lazy (everyone tells them so), stupid (it can be hard to think when tired), thinking they day dream too much (feeling they are in a daze), and anti-social (its hard to be sociable because socializing takes effort, and our efforts are spent on the simple act of waking up and getting out of bed).

Most Narcoleptics are obese. Our metabolism tends to be very slow because of the hypersomnia and lack of exercise. Have you ever felt like doing strenuous exercise when you haven’t had a good nights sleep for 10 years or more? Once diagnosed and medicated, the Narcoleptic usually finds it much easier to lose those extra pounds.

When people do not get enough sleep during the work week, they will build a sleep debt. Like all debts, eventually, the debt must be paid. That’s why people often sleep more hours on their days off. Suppose you were a light sleeper, and had a neighbor who played music loud during the hours you needed to sleep. You would build a big sleep debt because of your inability to get quality sleep.

Unfortunately, the Narcoleptic never has very good quality of sleep because they spend way too much time in the REM sleep stage. The human body goes through several sleep stages and cycles through these stages many times each night. In the REM sleep stage, the brain is just as active as it is when the person is awake. Interestingly, during waking periods and REM sleep periods, the body’s immune system is not in operation. As a result, Narcolepsy creates an immune deficiency.

Current research indicates that Narcolepsy is an autoimmune disease. The Narcoleptic has significantly less measures of a chemical known as Hypocretin, also known as Orexin, in their brain. Either the immune system is destroying the chemical, or has destroyed the cells that produce the chemical.

The body produces Hypocretin/Orexin naturally and the chemical acts as a stimulant, helping a person to wake up and motivates them to begin productivity. Narcoleptics have up to 95% LESS of this wonderful chemical.

Through the use of amphetamine or other stimulants, the Narcoleptic is able to cope with the disability of having such low levels of Hypocretin/Orexin. The dose of amphetamine required varies from person to person. Only the Narcoleptic is capable of knowing the dose they need to function as normally as possible. Stimulant prescribed are “Ritalin”, “Dextroamphetamine” (placebo), “Adderall”, “Provigil” (Modafinil), and “Desoxyn” (Methamphetamine).

Another drug used in the treatment of Narcolepsy is known as “Xyrem”, and is the pharmaceutical equivalent of GHB (known as the date rape drug). Xyrems’ therapeutic value is that it is capable of knocking the Narcoleptic out of the REM sleep stage, and into the other sleep stages, thus providing the Narcoleptic with a more normal cycle of sleep, and hence, feeling better rested.

Still, amphetamine is a poor imitation to the far superior Hypocretin/Orexin. The Narcoleptic must cope with uncomfortable and negative side effects of the medications that enable them to function in a manner that closely resembles the lives that other people take for granted.

The normal, healthy population, finds it nearly impossible to comprehend that the Narcoleptic could be experiencing any type of suffering. They are unaware and callous toward the fact that the Narcoleptic is the recipient of regular slander upon their person in the form of negative connotations about their personality and tendencies. Labels such as stupid, lazy, flaky, irresponsible, undependable, and incompetent are a constant in the lives of the Narcoleptic.

This problem can be exacerbated if the Narcoleptic has people in their lives who dislike or are angry with the Narcoleptic (and who doesn’t at some point end up with such people in their lives). The same labels can be used, and situations can be created, that paint a very negative picture of the Narcoleptic.

If the Narcoleptic has managed to have any type of success financially, they become easy targets for family members who wish to gain control over their financial assets. If the Narcoleptic should end up in the midst of an ugly divorce, they become the victims of abusive spouses. Should the Narcoleptic have a narcissistic parent, they can end up being that parents whipping post and tool for the parent to attain personal objectives. They are easily robbed of rightful inheritance if anyone declares them to lack the capacity to use the inheritance wisely. Money has a tendency to make people do the incomprehensible.

People in the normal, healthy population also find it difficult to see past the cultural attitudes about people who use drugs regularly. The Narcoleptic must deal with the same stigma that the mentally ill have to deal with. A major problem for the mentally ill is that the stigma causes many people who truly need to stay on medication to try to go without it. When the patient does this, it creates a dangerous situation for the patient and the society they live in.

The same circumstance is created for the unmedicated Narcoleptic. Unmedicated the Narcoleptic is accident prone. Issues with falling asleep at the wheel and workplace accidents create danger for the Narcoleptic and the people around them.

Despite the danger, there are always those who urge the Narcoleptic to live their life “clean and sober”. These ignorant people fail to comprehend that the Narcoleptic is not using these drugs to “party”, despite the fact that the two drugs that treat their symptoms are often abused and used as “party” drugs. The Narcoleptic is not an addict. Unlike the addict, the Narcoleptic is able to maintain their moral compass.

Unmedicated, the Narcoleptic loses their quality of life. One of the best feelings a human being can have, is that feeling you get after a long, hard, and productive day at work or play. Unmedicated, the Narcoleptic is incapable of achieving that kind of day. The normal and healthy population cannot comprehend the Narcoleptics limitations. Nor can they comprehend that as long as we are medicated, those limitations can all but disappear.

Any cognitive disability we may exhibit when unmedicated, completely disappears when we are adequately rested and adequately medicated. The Narcoleptic is not an idiot or incompetent. The Narcoleptic tends to feel misunderstood…because the rest of the population cannot comprehend our daily struggle.