You’ve probably seen narcolepsy on the big screen.
On HBO’s The Sopranos, Janice Soprano’s boyfriend Aaron had it. One of the characters in the movie Rat Race, played by the zany Rowan Atkinson, had it. And let’s not forget the narcoleptic Argentinian from Moulin Rouge!
Time and time again, narcolepsy has been parodied and dramatized by creative minds looking to add a little interest to their fictional worlds and, in most of cases, the audience gets a pretty good laugh out of it.
But narcolepsy is a neurological sleep disorder that needs real medical treatment. What exactly causes these seemingly random sleep attacks? And what does someone with narcolepsy need to do in order to function with a normal daily routine?
The A, B, C, and Zs of Narcolepsy
Narcolepsy is an autoimmune disorder characterized by sudden and severe sleep attacks that usually occur in the middle of the day and during inappropriate times, such as during work or while a person is behind the wheel.
It’s thought that these attacks occur due to a misfire within the area of the brain associated with the regulation of sleep and wake.
Narcoleptics typically experience, in order of most to least common symptoms:
- Excessive daytime sleepiness
- Cataplexy or muscle paralysis triggered by strong emotional feelings (excitement, fear, etc.)
- Hallucinations while falling asleep or upon just waking
- Sleep paralysis or muscle paralysis upon waking
Not every one of these symptoms necessarily needs to be present in order to diagnose a patient with narcolepsy. If any are present, they usually can be traced back to a person’s adolescent years. Most people don’t seem to seek out help or realize that there’s a problem until much later in life.
Where Are These Sleep Attacks Coming From?
As we mentioned earlier, the deficiency is thought to affect the regulation of activity by the hypothalamus, the section of the brain that largely controls sleep. Generally, people with lower levels of hypocretin are more at risk of developing narcolepsy.
Scientists who study chemical ad hormonal imbalances in the body have suggested that narcolepsy has very close origins in genetics. A family who has a history of defective hypocretin neurotransmitters is much more likely to yield family members who grow up to be narcoleptics.
There are several tests that you can undergo to find out if you have narcolepsy. One popular test administered is the Epworth Sleepiness Scale, a series of 8 questions used to measure symptoms of excessive daytime sleepiness. Typically, patients who score 10 points or higher on the test should be checked out by a medical doctor.
If a potential narcoleptic goes to a sleep center for a diagnosis, a polysomnography will undoubtedly be performed to check for any sleep disorders.
To find out if you have narcolepsy–or if your excessive daytime sleepiness and irregular sleep patterns are just a side effect of a medication or other temporary condition–sleep doctors also suggest keeping a diary and observing how sleep patterns change under different circumstances. You’d basically be conducting a small home experiment to try and isolate the cause of your symptoms.
But Doc; What Can I Do?
Narcolepsy can be a debilitating illness if left untreated. Narcoleptics may feel that their symptoms are holding them back socially, professionally and even romantically.
While there’s no official “cure” for narcolepsy, but there are several medications available that may inhibit or reduce your symptoms by adjusting your hormone levels and stimulating the parts of your brain that control alertness.
In addition to modes of self-help, such as seeking out emotional support with a counselor, there are also lifestyle changes that have been shown to help narcoleptics cope with their symptoms such as:
- Avoiding activities that require complete and prolonged concentration
- Maintaining a regular exercise schedule
- Keeping a healthy diet to help regulate your body functions, including sleep.
- Behavioral tactics have also helped reduce sleep attacks during work-time hours.
With the help of friends, family and medical professionals in dealing with this neurological sleep disorder, narcoleptics can free themselves from their symptoms and regain control over their lives.
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{ 7 comments… read them below or add one }
I had a colleague back in the ’80′s who had narcolepsy. Although I never witnessed an “incidence”, I know that he popped small levels of amphetamines (I think) all day long to stay awake. Is this still the case for people with narcolepsy that can’t handle it though lifestyle modification??
Doug,
The underlying issue is that narcolepsy appears to be a nervous system disorder that primarily affects our body’s ability to stay awake when appropriate. More importantly, it seems that a narcoleptic attack can happen regardless how much sleep one has had the night before. Many also have narcoleptic episodes during periods of intense emotion, such as surprise, fear, and excitement.
So what can one do? If you happen to have an increase in attacks when excited, it’s probably best to stay away from situations that would cause a sharp increase in emotions (surprise parties, haunted hayrides, etc.). As such, it looks like stimulants are still seen as a potential treatment and management tool, to at least help keep you awake and override your body’s sudden desire to conk out.
Additional lifestyle changes seem tied to diet, but since scientists think narcolepsy may relate to the brain’s ability to produce hypocretin, it remains to be seen how eating a light lunch would help.
Narcolepsy is a very tough mental issue because it effects the hormones that produce happiness. The hypothalamus has everything to do with happiness and yet everything to do with sleep. It’s quite interesting how people that don’t sleep well just aren’t satisfied with their life.
I have had Narcolepsy for most of my life, and it has been a daily struggle. People have called me lazy and stupid. The fact that Holyywood has made it a joke just makes it worse. I have to take stimulants just to make it through a day.
I have horrible attacks at random and am unable to stay consistent with my job performance or my home life. I have 3 alarms set and am still late for work a lot. My Husband didn’t understand what was going on with me until I got very angry and asked him if he had ever even tried to look it up. He did research and realized just how awful it is for me every single day.
The stimulants help, but are definitely not a cure. Not to mention whenever you go to the hospital for something else, they think you are a meth addict because your drug screen comes back with amphetamines. I actually told a doctor one time “Why the hell would I waste money on street drugs when my doctor prescribes them to me and my insurance pays for them?”
Narcolepsy makes it very hard to stay healthy in other areas of life as well. I catch every cold and have a terrible immune system. Most doctors don’t have a clue about what it is and don’t believe you when you tell them that you hate taking Opiate meds. Opiate medication makes you sleepy and also makes the dreams even more terrifying and real. I cannot tell the difference between dreams and reality a lot of the time.
Narcolepsy is not a joke and it is one of the most debilitating and humiliating disorders. I, for one, am sick of being made fun of and misunderstood. I am highly intelligent and very driven. But there are days that I cannot speak a sentence right or add 2+2. I have had to teach my children not to ask me questions when I am tired, that I am unable to make decisions. I am close to losing my job because I cannot maintain a decent level of performance. I am terrified that I will have to fight for years for SSD, even though I cannot drive and cannot stay awake on a consistent basis.
To stay awake I take Provigil and Ritalin to stay awAke during the day and clomipramine at night to sleep better feel strong during the day and don’t fell weak or ani present of cataplexy
Jenn, please let me know your email address. I’d like to speak with you. maybe I can help…
What is SSD?