Other Symptoms
There are several symptoms of Narcolepsy. Not everyone with Narcolepsy develops every symptom, and there are varying degrees of each symptom. What one person may have a lot of problems with controlling, another may not consider very bothersome at all.
EDS Excessive Daytime Sleepiness. Whether it be tired all day long, or a sudden attack of sleepiness this is the only common symptom. The urge to sleep is so strong it is described as being up for three days straight and trying to stay awake! It's not get me a few cups of coffee and some no-doze and I'll be fine, it's I need to find a place I can snooze and I need to go now!
Tired Vs. Sleepy. Many of us were not diagnosed
right away because we used the wrong word! Here is a post to the Narcolepsy list
see for a subscription to the list. It's from Donald Schneider who gave me
permission to use here.
Ah those tricky words! Yes indeed, semantics is important. It is
important that words are used correctly, otherwise their definitions become
obscured and lose their meaning. When that happens, it becomes impossible
to think clearly, for the ability to think is based on words, and if the meaning
of words is not clear and they are not used accurately, how can we possibly
formulate thoughts with clarity and discrimination?
Nowhere is it more important that language is used correctly than in the medical
profession. Doctors strive to use language correctly, though even doctors
are fallible. Most doctors biggest mistake, though, is assuming their
patients know the definitions of the words they use. They assume their
patients know the correct usage of the words that they, the patients, use
themselves. And that leads the Doctors to assuming their patients will
understand them when they use non-technical language. Both assumptions are
often incorrect. It is amazing how often even otherwise intelligent people
misconstrue the definitions of words.
Tired and sleepy are words that are often used interchangeably by the vast
majority of people, believing that they basically mean the same thing.
They do not! I might have been diagnosed decades earlier had I myself not
confused their meanings. The actual meanings have become obscured by
generations of incorrect usage. My family, and just about everyone I
have ever known, has said something like: I'm tired, I think I'll go to bed,
when what they really mean is I'm sleepy.
Tired is a physical state, closely related to physical exhaustion, lethargy,
muscle soreness or the resistance of the muscles or physical body to movement.
This is what a doctor thinks when he hears a patient use the word tired.
And based on what he hears, he is going to be thinking things like hypoglycemia,
thyroid problems, depression, Fibromyalgia, or worse. Tired is a physical
state that can affect the state of mind, that's why when a doctor hears a
patient say I'm ALWAYS tired he begins to think a diagnosis of depression is in
order.
Sleepiness is a state of mind, or what we might call mental exhaustion as
opposed to physical exhaustion, or what we might call brain exhaustion, mental
fatigue, but most correctly is the slowly escalating internal pressure to SLEEP.
Sleepiness is the brain telling the body to lay down and sleep, and with
increasing urgency if the message is ignored or the act thereof postponed.
This is what a doctor hears when a patient says I'm sleepy all the time.
This would lead him towards a diagnosis of Sleep Apnea, Idiopathic Hypersomnia,
Narcolepsy, and several other obscure diseases.
Part of the problem for the patients who use these words is that just as Tired
is a physical state that can affect the state of mind, for those with chronic
sleepiness, it is a state of mind or mental state that can affect the physical
state. Let's face it, when one is CHRONICALLY sleepy he tends to have a
certain amount of lethargy, lack of motivation, and resistance to physical
movement. These two separate processes tend to become intermingled and
become one and the same in the mind of the sufferer.
A person can dig ditches all day and upon returning home from work be so physically
exhausted that he can hardly move, even if he is in good shape and up to the
task and not particularly sore. And yet on returning home, he can prepare
and eat a leisurely dinner and watch TV all night long until well past one in
the morning before he becomes sleepy and goes to bed. That's tired.
Conversely a person can stay up for three nights straight getting some software
perfected in order to meet a deadline. He is not the least bit tired at
the end of this time, and could probably go dig ditches for another 8 hours, and
that is probably ALL he is capable of at that point because he is so
relentlessly sleepy that it is no longer possible for him to think clearly
anymore. That's sleepy. And that is how I would put it to PWON,
Narcolepsy is a condition where one becomes repeatedly periodically sleepy
throughout the day to the point of not being able to think clearly, in between
those periods of sleepiness we can think as clearly as any normal person, unless
you are a PWN who doesn't nap when the pressure hits, then you are probably
sleepy ALL the time and probably can hardly ever think
clearly.
Cataplexy. Described better on the Cataplexy page. If you have it and EDS, you have Narcolepsy. The doctors will try to say that Cataplexy can occur in some other diseases but they all have to deal with infants and other symptoms that are nothing like Narcolepsy. Cataplexy is the sudden loss of muscle tone normally triggered by an emotional response. It is a normal function of the body when going into REM (or dream) sleep. The body shuts off the voluntary muscles so you don't act out your dreams. Ingenious don't you think? Anyway, the brains of people with Narcolepsy are missing the chemical that tells the brain if, and when, and how much you are supposed to be asleep. So it is always second-guessing itself by getting information from other sources. An emotion or visual effect is in turn seen as an onset of a dream sequence and therefore it shuts down the muscle control accordingly. Sometimes the exertion of physical activity, or the connection between a familiar smell and a memory can trigger this response. (such as Grandpa's kind of pipe tobacco correlating to missing him and therefore feeling sad.) To some, the muscle tone loss is only a weakness, to others it is a complete loss of function and they fall as if someone cut the strings to a puppet. They are completely conscious, just unable to move. Sometimes certain emotions are stronger than others, or it depends on how tired they are. After the symptoms develop each individual learns their limitations.
Hypnogogic/Hypnopopic Hallucinations (meaning the onset or awakening from sleep). Your brain does not just shut off or come on, there are stages of sleep in which parts are awake while others rest. In Narcolepsy these are all jumbled up. Normally when you sleep and dream, you are unconscious of the fact that you are sleeping. In Narcolepsy, you can be sleeping and dreaming and completely conscious! This makes for some interesting memories if the dreams involve something mundane like going shopping or bill paying or having a conversation with someone. You actually have a memory of doing this even though you didn't do it! Now if the dream involves something completely absurd like turning into a fish or being able to fly then you can easily convince yourself it was a dream and just have fun with it. It can be very frightening though if you dream that someone is breaking into your house, or abusing you, remember you are just as involved as if it WERE happening because your memory function is active! It is not until you awake or come out of it and find yourself, in bed, safe and sound, that you can calm down and realize that it was just a dream. This is where i swear Stephen King has to have Narcolepsy! After a long time of trying to manipulate your dreams many people with Narcolepsy discover they can control where and what is happening in the dreams! Some can even bring themselves out of dreaming! I tend to start to control the dream (go from frightening to something else) and end up just in a race to find the way out! I know I'm a sleep and need to get out, but the dream/HH ends up going from place to place looking for my way out. Often i can hear what's going on outside around me and that just adds to the confusion!
Sleep Paralysis. For many of us this symptom is associated with the hallucinations and is much like the Cataplexy in that upon falling asleep or waking up there is a period of complete paralysis. You are aware of your surroundings but unable to move. Among the common public a periodic hallucination or paralysis is not uncommon as your sleep was just disturbed, but many of us experience this daily or several times a week and it can be quite unnerving! It is humorous to hear people without Narcolepsy go on and on about the "near death" experiences now! We know they are probably just experiencing HH or SP or both at the same time! Often people describe a "lurker" someone who is just out of vision, a presence. No one knows exactly why, but it seems a common experience so don't worry about it too much. Maybe it the subconscious/conscious mind struggling between each other. Also the floating, out of body experiences seem pretty normal as well.
Memory Problems. Especially with nouns (they are doing a study on this correlation). We all know that sleep deprived people tend to be fuzzy headed and unable to concentrate or remember something compared to someone with a full rested 8 hours so it is not a surprise that we have memory problems, but it makes for some interesting and frustrating lifestyle of, where did I leave that? Going to do something that by the time you get there you have no idea why you came! Having a conversation about something you are quite competent in, and suddenly loose track of what you were saying until the connection is made again, leaving you looking like a complete idiot!
Automatic Behavior. I'm sure many of you have been really tired leaving somewhere late at night and driven home and not remembered how you got there! This is basically the same thing, although add in the normal daily routine and mix it up! You have a list of what you want to accomplish and your mind goes on automatic, you end up with the socks in the refrigerator, and the mail in the sock drawer, and the butter in the desk drawer and you wake up eating toast with coffee grinds on it! Yuck! All because you were putting your clothes away and your brain decided to get the list done without asking the mind to oversee the process! You can even have conversations in your sleep mode (AB....next symptom) and look completely awake and have no record of it, or talk in gibberish never knowing you did that. Having friends, family and coworkers that understand and not take it personally is hard! Keeping a book full of notes to yourself and appointments, as well as a watch with alarms on it, and always doing things the same way every time helps immensely.
Florescent Lights. I've noticed that florescent lighting seems to cause some Cataplexy especially in those of us that developed Narcolepsy at a young age, and it developed slowly. Florescent lights pulse and hypnotize. You usually do not notice this unless they are going out and flicker slower, but they do it all the time. There is even a correlation between florescent lighting and ADD or ADHD. Kids with ADD/ADHD actually have a sleep disorder of a sort. The frontal lobe of the brain, where all the concentration and learning activity happens, is the first to go to sleep when not in use and the last to wake up. When the florescnet lights flicker it causes the frontal lobe to go to sleep and therefore the kids cannot concentrate on what is being taught. Because kids are so full of energy they find something to entertain themselves with which is usually disturbing to those around them. It's not that these kids are any more hyper than the others, it's that they are bored and cannot focus on what is being taught. Now does it make sense why these kids are given amphetamines (stimulants)? It's not to calm them down; it's to wake them up! Most of the kids outgrow this but many of us that feel like we have slowly developed Narcolepsy were like that as children even if it was not diagnosed as ADD/ADHD. Now look around and tell me how many schools do not have florescent lighting? Could we be actually causing some learning problems in our children? Also look at the public buildings, grocery stores, and such, how many of those do not have florescent lighting? I have to be feeling really good to make it through a Wal-mart or Meijers without looking like I'm drunk by the end. By the time I finish I can hardly stand up, my speech is slurred, and I'm disoriented. This is only something that I personally have noticed and passed along to the researchers. People with Epilepsy also have problems with these lights, they can trigger an attack! On Discovery Wings channel I watched a special on new airplane maintenance where they use a visor that uses flickering light patterns that the mechanic looks at a box to go to the next page or the menu page by just looking at the box, each box flickers a different pattern. The brain patterns the flickering and signals that they are looking at that particular box and the visor changes pages. It takes just a second or two to change. It keeps the mechanic's hands free, they don't have to drag a checklist or book with them, but it shows the powerful ability in just flickering lights and how our brain's adapt! For most they can deal with it, but many people talk about getting a headache or sleepy after being at work for a few hours, much of that is probably the type of lighting used!
Similar Disorders. Undiagnosed sleep apnea can lead to congenital heart failure and death! Fibromyalgia that many see a hoax is actually a deep sleep disorder in which the body will not stay in the deep healing sleep stage and process muscle waste and therefore the waste collects on the muscle lining and forms knots shortening the elasticity and therefore causing pain and fatigue when using the muscles. In the news they are noting that even the tendency towards being an early bird or night owl is an inherited genetic factor, and many people have problems with overcast/rainy days or winter blues (which is called Seasonal Affective Disorder). These are not excuses; it is a chemical imbalance that they have no control over.
The vast majority of the population (including the regular family doctors) do not understand Narcolepsy enough to notice when people complain about the symptoms. There is a text book example of Narcolepsy and in medical school they spend a whole 5-15 min on the disease that affects so many. And we have to get past them to get to a doctor that does understand it! Of course the education of sleep disorders is becoming much more common place in the medical school today as we understand the importance of sleep and healing as a benefit for a health individual. Education is the key! Educate your doctor and have him pass around the new information about Narcolepsy to his peers!
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