June 4, 1999
Narco l

Narcolepsy

This word means attacks of sleep.

The illness was first described by Dr. Gelineau in 1880. He listed it as having a Tetrad of symptoms namely:

Sleep attacks in boring situations,

Cataplexy--weakness of muscles with sudden strong emotions, Hypnagogic Hallucinations, nightmares in the first 1/2- 1 hour after going to sleep often accompanying the REM (Rhythmic Eye Movements) stage of sleep.

I have found that patients with early and/or late nightmares all have other symptoms of Narcolepsy. Sleep Paralysis, awakening with complete muscle paralysis, and inability to move, until touched by someone else, or it gradually wears off.

When I first saw a patient with this illness in 1948, they considered the Sleep Attacks to occur in 90% of the patients, Cataplexy in 75%, Early nightmares in 75%, and Sleep Paralysis in 50%.

The present criteria for the diagnosis of Narcolepsy are too restrictive. These insist on the patient having Sleep Attacks 100%, Cataplexy 100%, and SOREMPS (Sleep Onset Rhythmic Eye Movement Periods) 100%.

I have sent 80patients over the last 16 years to several Sleep Laboratories, for their all night polysomnography (sleep test), and only 35 were ever tested, while they only found 5 (6.5%) who had SOREMPS. This means that all the other (93.5%) patients were unable to get alerting medication like Ritalin, and/or Dexedrine to help them stay alert and be able to carry on a reasonable life, without going to sleep in unusual places or at work, etc.

I have noted that ADD, ADHD, & ADWOH have occurred in the histories of 1427 patients with Narcolepsy 409 of 709 (57.6%) had ADHD, and 21 (2.96%) had ADWOH. Many patients had very poor memories of their childhood and it has been my conclusion that "Every ADD child is a Narcoleptic waiting to grow up". This means that the incidence of Narcolepsy which was stated 10 years ago to be 1:5000, 5 years ago to be 1:2000, and more recently to be 1:1000, seem to be much more than this and I am of the opinion that it is 1:4 (25%).

After taking the a/m number of histories, I developed a story of how this occurs. The child finds he cannot pay attention to others at about 4-5 years of age, and is told (and often abused) by parents and teachers, "If your can't pay attention you will not get anywhere in this world". He/she then makes several decisions:

1. He has to be nice to everyone.

2. He has to do every f avour anyone asks him to do, and he becomes a doormat, and has not time to do his own work for the rest of his life.

3. He cannot answer back to anyone.

4. Because he is responsible for the other person's feelings.

The result of this is that he never learns to express his feelings and when he does he over expresses them.

He also, because of being and feeling different from other children becomes depressed, and this feeling lasts all his life. I think that this is the source of most of the Dysthymia that is diagnosed, and it is not a disease that starts later in life at all, but it is necessary for the doctor to ask enough questions to find the sleep history of symptoms of Narcolepsy.

At about 7-10 years of age he gets teased (criticized, or disagreed with). This leads to Cataplexy- which may be only a funny feeling in the head or the chest and possibly some muscle weakness and also finds his thinking is confused. He knows that the teaser can tell something is wrong with him and so he quickly learns to raise verbal or physical hell with the teaser. This activity stops the cataplexy while it occurs, and when he stops it, the cataplexy returns more severely and last longer, and if he opens his mouth then he puts his third foot in it, and causes himself more trouble.

When he has little or no ability to express his feelings easily, (as I describe in teaspoonfuls instead of buckets); then he has great difficulty in assessing the motives of strangers. One has to assess what the stranger says, what he does, and the play of emotion on his face and then he can assess what the stranger is like inside, and decide whether the stranger can be trusted or not. When one cannot express oneself easily then one makes mistakes and gets conned (taken advantage of all the time). This may last for years and years.

I cannot understand how so many of these patients have never thought of the fact, that if they are being conned all the time, they better learn to express their feelings easily and be able to say "NO". If they do, they get rid of all the people bothering them and find they have no friends at all and are very lonely until they get talking to other people and learn to get along with them much better.

I told one of my lady patients that she had to express her opinions in teaspoonfuls instead of buckets, and that this would allow others to know what she was like inside, and be able to trust her. She replied in a complaining weepy tone, "They can pull my strings"! I then said to her that all she had to do was to give them another teaspoonful, as she was not responsible for their feelings, but only responsible for her own feelings. She left my office apparently unpersuaded as she never returned. However, when other patients learn to do this, they get along with others much better, and have less difficulty and lose all the people who were conning them. This process sometimes takes years to develop.

If one of the patients with ADD applies for a job, and they notice this the man does not get the job. If they don't catch him at this, then he gets the job. When he is instructed what to do, he often can't recall what he was told, and perhaps only recalls where he is to go. There he has to ask the other workers what he is supposed to do, and if they are helpful (and don't fun him by telling him to buy a yard of milk or whatever), he works, but then since he gets bored easily, he slows down, makes mistakes, and may hurt himself. The foreman will come and criticize him for these things. If he has a bad quick temper he will quit the job, before the foreman fires him for any of the above four reasons, and if they get in a fight he has another reason to fire him. I have a patient who was fired 16 times, and quit 14 times for these occurrences.

It is obvious that this illness is hereditary, and since many of the patients only talk to people who have ADD as other without it may criticize them (put them down, where have you heard that in the last month--when the reporters talk about the school shootings) . It seems obvious to me that the Narcoleptic realizes that all people in society think differently, but still want them to think the same. (This is like the planners in the Ministry of Health who want all the patients with an illness to use the same pills at the same dosage, and it is supposed to work correctly).

Since ADD patients only talk to each other, it is inevitable that they marry and have children, and therefore the percentage of the heredity of the syndrome increases, which leads me to think that the occurrence of ADD and followed by Narcolepsy is 25% on the population.

There is some thinking in the CAS (Children's Aid Societies) that these mothers with Narcolepsy are not able to look after their children. How come these ladies grew up looked after by Narcoleptic parents, without the help of the CAS.

ADD and Narcolepsy are lifelong difficulties, which vary considerably from person to person, and require medication or various kinds, Ritalin, Dexedrine, Benzedrine, and others, Valium to reduce their bodily and emotional tension when trying to listen, and when they can't get the Valium they may drink alcohol which tends in small doses to relax them, enough to listen. Admittedly they often keep drinking too much and get into more trouble. Many require antidepressants which cut down their chronic depression and reduce the number of severe nightmares.

Some patients with bad tempers, are helped by various tranquilizers for short times or continuously, depending on their clinical stories at the time.

Apr 21/04

I have noted in the histories of my patients over the years that the ones with ADD at some time in their young lives developed the idea that every one thought alike. This resulted in the child being disagreed with many times a day. Then the result of this was their anger, followed by Cataplexy and confusion in thinking, and weakness of muscles to varying degrees, which they quickly found out could be stopped by Verbal &/or Physical violence. If this were repeated frequently enough, it became a habit, and resulted in them being dangerous, and lately the girls have now engaged in this violent behaviour as well, and still no one ever takes a sleep history of these children.