So…what is Narcolepsy?
Narcolepsy is a chronic sleep disorder for which there is, as yet, no cure. It commonly manifests itself during adolescence, although it can begin earlier, in childhood, or much later in adulthood. The condition takes the form of a syndrome, with four main components. People with the condition may have all four of these symptoms, or only one or two, and the degrees to which each individual suffers each symptom can vary greatly.
Most people with narcolepsy suffer from Excessive Daytime Sleepiness. This is usually the first symptom that people notice, (but not always), and for many people, it is the most devastating symptom. For some it means feeling drowsy throughout the day, even though they have had ample sleep the previous night. For others, it can mean overwhelming drowsiness, and sleep attacks, forcing the person to take naps. Often it is impossible for them to control the urge to sleep. The feeling is so strong that sometimes people are asleep before they have time to do anything about it. Attacks can be very sudden. In severe cases of excessive day-time sleepiness, people may have trouble keeping a job because of the need to nap frequently or at inappropriate times, for instance during meetings, or whilst driving. It can interfere with every aspect of their life, jobs, family, leisure pursuits etc. To add to their problems, people with narcolepsy often find it difficult to sleep at night, and wake frequently.
One of the other symptoms of narcolepsy, is cataplaxy. Not all narcoleptics suffer from cataplaxy, but as it is unique to narcolepsy, a person with this symptom is considered to be narcoleptic. The other symptoms can be attributed to other conditions, such as restless legs syndrome, sleep apnea, or insomnia. Cataplexy is a slackening in the muscles, which can be severe, and result in complete body collapse, or only slight, such as the slackening of jaw muscles, making speech slurred. The person with cataplexy may experience a drooping head, or a limp arm, or often a weakness in their legs. Collapsing may result in people being unable to get up or move whatever part of their body is affected, perhaps for a few seconds, but it could be longer, maybe a few minutes. The person remains conscious throughout. The number of cataplexy attacks and the severity varies with each individual. Some experience lots of small cataplexic episodes each day, some only a few each year.Cataplexy seems to be triggered by strong emotions, such as fear, anger, laughter, etc.
Sleep paralysis is a frightening experience for those who experience it. It occurs on the edge of falling asleep. or as the person awakes from sleep and is the result of mixed up sleep patterns…(more of this later). A person may feel awake, but unable to move, and may begin to panic, especially if the attack lasts for any length of time. However, breathing is not cessated, and the sufferer, although uncomfortable, and often terrified, will not die through not being able to breathe. Reassuring once you understand what is happening; the the first few times it happens can be devastating.
Another frightening experience, and again, not all narcoleptics get this either, is hypnagogic hallucinations. These are extremely vivid dreams/dreamlike experiences, very real and often very frightening.They tend to occur whilst the person dozes or is falling asleep.There are many descriptions of dreamlike figures, evil and menacing, crouching over the person, or sitting on their chest and suffocating them…or at least that is what it looks like and feels like to the person who is having the hallucination.
Only about 20-25% of narcoleptics experience all four symptoms, and whilst the excessive daytime sleepiness persists throughout life, the other symptoms may come and go.
Kay said,
October 19, 2007 at 9:08 am
You’re doing a good job here. It’s very informative and evokes the condition well for people who haven’t experienced it. Do you think narcolepsy could get confused with M.E.? I’ve known several people with M.E. and their symptoms appear, to the outsider, to be similar.
kimmikat said,
October 19, 2007 at 11:37 am
Thanks Kay.
ME / Fibromyalgia (many researchers think they are one and the same…just presenting differently in diferent patients) could well be confused. I have Fibro and had I not suffered from the sleepiness before contracting that, I may have though it was the fibro. However, cataplexy only presents in narcolepsy, so people with cataplexy will know it’s narcolepsy. It’s just trial and error, sleep tests etc, that define the condition eventually. And, there is nothing to say that folk can’t have both or several similar conditions at once, thereby complicating diagnosis considerably. Many people do have several concurrent conditions.
I will be writing about diagnosis and treatment shortly.
Thanks for taking the time to comment
PollyAnna said,
February 27, 2008 at 2:01 pm
Thank you for writing your own experiences. This is very informative and in a down-to-earth manner, not boggling us with scientific or medical terminology.
Do you know if research has found any genetic links i.e. can this or the linked ME/Fibromyalgia be inherited from a suffering parent?
kimmikat said,
February 28, 2008 at 1:16 pm
Hi Pollyanna.
The scientists are divided about genetic inheritance. Some say that there is usually someone else in the family with narcolepsy and some say there is no evidence to prove a link. In my own case, I do think ,looking back ,that perhaps my father had narcolepsy. He was always struggling to stay awake, and refused to learn to drive because he said he would fall asleep at the wheel.
As for Fibro links, again, nothing concrete, but it is known that Fibromyalgia patients have disturbed sleep patterns, so perhaps some of the symptoms would appear similar. I have recently taken part in some research by the Edinburgh Sleep Studies team, looking into what other illnesses or conditions are around in folk who have Narcolepsy. My brothers were asked to take part in this too, although neither of them have the condition. Scientists are trying to ascertain if there is a connection between certain conditions, or a prevalence of a condition when Narcolepsy is present.
Sorry I can’t help more. Thanks for stopping by and taking the time to comment
Susie