The main characteristic of narcolepsy is excessive daytime sleepiness (EDS), even after adequate night time sleep. A person with narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime naps may occur without warning and may be physically irresistible. These naps can occur several times a day. They are typically refreshing, but only for a few hours. Drowsiness may persist for prolonged periods of time. In addition, night-time sleep may be fragmented with frequent awakenings.
In most cases, the first symptom of narcolepsy to appear is excessive and overwhelming daytime sleepiness. The other symptoms may begin alone or in combination months or years after the onset of the daytime naps. There are wide variations in the development, severity, and order of appearance of cataplexy, sleep paralysis, and hypnagogic hallucinations in individuals. Only about 20 to 25 percent of people with narcolepsy experience all four symptoms. The excessive daytime sleepiness generally persists throughout life, but sleep paralysis and hypnagogic hallucinations may not.
Although these are the common symptoms of narcolepsy, many (although less than 40% of people with narcolepsy) also suffer from insomnia for extended periods of time. This is most often from an excess of sleep and/or use of self-medications such as energy drinks, or caffeinated drinks.
The symptoms of narcolepsy, especially the excessive daytime sleepiness and cataplexy, often become severe enough to cause serious problems in a person's social, personal, and professional life.
To imagine what a person with narcolepsy copes with daily, keep in mind that while many are not sleep-deprived (in the classical sense), a major symptom of narcolepsy is akin to sleep deprivation in a normal person; as a normal person, imagine going years functioning off just 3-4 hours of sleep per night. While lifestyle changes and drug therapy can help largely mitigate many symptoms of narcolepsy, there currently exists no complete and permanent solution, therefore patience, empathy and self-education are excellent coping tools.
Individuals with narcolepsy, their families, friends, and potential employers should know that:
-Narcolepsy is a life-long condition that may require continuous medication.
-Although there is no cure for narcolepsy at present, several medications can help reduce its symptoms.
-People with narcolepsy can lead productive lives with proper medical care and lifestyle changes.
-A major physiological and physical effect of narcolepsy is roughly akin to the effects of sleep deprivation; such effects can often be controlled and minimized through a combination of lifestyle changes and drug therapy.
-Individuals with narcolepsy should avoid jobs that require driving long distances or handling hazardous equipment or that require alertness for lengthy periods (especially where the consequences of falling asleep are dangerous to themselves or others).
-Parents, teachers, spouses, and employers should be aware of the symptoms of narcolepsy. This will help them avoid the mistake of confusing the person's behavior with laziness, hostility, rejection, or lack of interest and motivation. It will also help them provide essential support and cooperation.
-Employers can promote better working opportunities for individuals with narcolepsy by permitting special work schedules and nap breaks.
Doctors generally agree that lifestyle changes can be very helpful to those suffering with narcolepsy. Suggested self-care tips, from the National Sleep Foundation, University at Buffalo, and Mayo Clinic, include:
-Take several short daily naps (10-15 minutes) to combat excessive sleepiness and sleep attacks. -Develop a routine sleep schedule
– try to go to sleep and awaken at the same time every day.
-Alert your employers, co-workers and friends in the hope that others will accommodate your condition and help when needed.
-Do not drive or operate dangerous equipment if you are sleepy. Take a nap before driving if possible.
-Consider taking a break for a nap during a long driving trip.
-Join a support group.
-Break up larger tasks into small pieces and focusing on one small thing at a time.
-Take several short walks during the day.
-Carry a tape recorder, if possible, to record important conversations and meetings.
....i think i must have this. greg thinks i just have low iron. that is also a possibility. whatever my problem is, though, it is very real. i slept ten hours saturday night and had to leave church because i could not stay awake. i came home and slept for five hours. then, last night, i slept from 2am until 5:30pm, i am not even kidding. i am going to go to the drugstore and get something to treat it until i can see a doctor about it. i'll get pills for iron deficiency, probably, as well as codeine (they said that is supposed to help) and possibly caffeine pills. i need to stay awake during the day; this is very dangerous for my recovery. being up all night is depressing because i never get to talk to anyone, except greg because he works all night. but he's usually busy working. i haven't been getting out as much recently, either, and this could be very damaging to my schoolwork and job (if i ever get a job). just last week i had to cancel two appointments because of it, and i still had to pay for half the price. it is an expensive problem! and i'm telling you, there are very few things that are more painful than trying to stay awake and knowing it's very important that you do, but not being able to. especially when you're in church clothes and you don't have a car or anywhere to go. it's awful. it'd probably be even worse if i had a car- imagine trying to drive with this problem!
i need to go get this fixed. until then, i shall consult my local drugstore.
greg is so nice. he takes me everywhere i need to go. just tonight he took me to go get bread and milk and soda at the grocery store (i was nice too, because i let him borrow some money to buy milk and butter for himself), and when i asked him if he'd take me to go get some codeine, he said sure. he also takes me to the gym almost every day. it's a good arrangement; he drives me to the gym, and i get on his case to take me to the gym so he doesn't sit around doing nothing all day. if you ask me, i have the harder job. sometimes i am just not motivated. tonight i was motivated to go, but FHE was too long and i missed my ride. how upsetting. oh well. not much i can do about it now.
No comments:
Post a Comment