June 22, 2000
Glossary2
*: This denotes the items which have been the Tetrad of symptoms for Narcolepsy since 1880. During the late 1940's and early 1950's when I was reading all the literature of the time about Narcolepsy, the presence of all four symtoms were never all required in the same patient to make the diagnosis. Today the Sleep Research groups seem to require their Triad of symptoms to make the diagnosis, or if these are not present, the patient cannot be treated with alerting medication.
ADD: This is Attention Deficit Disorder, ADHD-Attention Deficit Hyperactivity Disorder, ADWOH- Attention Deficit Disorder Without Hyperactivity (and possibly with almost continuous Fantasy). This may occur when listening to others, when telling stories to others (lack of attention to their own conversation or thinking) or both. I regard this as the earliest symptom of Narcolepsy, and it seems to occur very early. The child gets told he/she is never going to get anywhere in life, is stupid, lazy etc. The child then feels he/she is different from others and makes 4 decisions:
1. He/she becomes depressed as they are different and it lasts lifelong.
This means they have a chronic depression and fit the diagnosis of Dysthmia;
only the diagnosed all but my dysthymic patients have never had the sleep history
taken to find the presence of Narcoleptic symptoms.
2. He/she has to be nice to everyone else.
3. He/she has to do every favour asked of them.
4. He/she must never answer back, as it would upset the other person.
This means that they never learn to express their opinions, (feelings), resulting in them becoming unable to recognize normal feelings as well as they should, and then misinterpret other people’s behaviour. This makes the patient have numerous behaviour difficulties, and causes many difficulties in human relations everywhere they go.
EEG:This consists of a number of electrodes being attached to the head leading to amplifiers and recording pens to put lines on paper to record the electrical activity of the brain, and is sometimes called "Brain Waves". These can be interpreted according to frequency, voltage. Normality or abnormality, and the amounts of each. I read a paper in 1958 at the Eastern EEG meeting in Toronto, in which I had found a number of the patients who went to sleep during their EEG's and also a number who had nightmares of their teeth. At that time I stated that doctors should take a sleep history on any patient with these symptoms. Today I am of the opinion that these are diagnostic symptoms of Narcolepsy.
EDS: * A term which means that the person had Excessive Daytime Somnolence (Sleep Attacks). These usually occur in boring situations, e.g. long jokes, long stories, conversation about subjects the person is not interested in, after lunch, or dinner, or when they are driving and doze at the stop light and hear the car behind toot the horn to get them to go. These are necessary according to the criteria for the diagnosis of Narcolepsy. However in my 1340 patients with Narcolepsy I have 243 who do not have EDS, but have numerous other symptoms of Narcolepsy.
REM * Rhythmic Eye Movements: Movements of the eyes during sleep, at times accompanied by nightmares and/or dreams. About 80% of dreams occur in REM sleep, which means that 20% likely occurs in NonRem Sleep.
Hypnagogic Hallucinations: * These are dreams which occur in the first ½ -1 hour after the onset of sleep, and when they occur are suggestive that the patient has REM sleep at that time. These are considered to be necessary for the diagnosis of Narcolepsy.
Hypnopompic Hallucinations: These are dreams which occur at other times during the night, and may occur in NONREM sleep. These are not considered to be significant in the diagnosis of Narcolepsy. I have a chart comparing these types of nightmares showing the other symptoms of Narcolepsy, and they are very similar. I am of the opinion that both types of nightmares are equally diagnostic of Narcolepsy.
Some people are violent during their nightmares, throwing their arms/legs about and may strike their sleeping partners, occasionally blacking the partner’s eye. One of my patients dreamed a policeman stood by his bed and became so angry he struck him, only he struck a cement block wall and damaged his knuckles. These are also called Perpheral Leg Movements, which one Sleep Lab Director said caused all the EDS, mentioned above.
DREAMS: These are called normal dreams by the public. However I have many patients who have normal dreams, and have many symptoms of Narcolepsy.
Cataplexy: * This is a term to describe the "sudden loss of muscle weakness with sudden strong emotion" It also can mean the loss of muscle weakness with lessor amounts of emotion over longer periods of time. It is my opinion that "anticipation" can lead to muscle weakness, palpitation, sweating, and therefore cause the patient to develop phobias to going out of the house or in various other situations-that they fear, and panic states as well for the same reason. The period of Cataplexy is also accompanied by mental confusion, and resulting poor decisions and behaviour. Most patients with this have found out between 7-10 years of age that when they are teased and feel Cataplexy, that if they engage in activity-usually verbal and/or physical violence to the teaser that the weakness disappears. This then after many repeats, trains them to become very violent toward others who disagree with them. They have told me many times that they feel "Put Down". I have noted that many of the perpetrators of recent time shooting other school children and/or teachers, are quoted as making this statement that they were "Put Down". Does this mean that they had other symptoms of ADD and Narcolepsy, and never learned in their young lives that every person thinks differently, and that they must learn to tolerate this difference, and not shoot all the other people in the world? It is my opinion that these bad behaviouring children and grown ups should have their sleep history taken, and if positive for Narcolepsy, should be treated for it.
Anger Management Programs: Numbers of my patients with the above history of family and other persons abuse are sentenced to have anger management. I have talked to numbers of them after the program, and they do not seem to have become less angry. This means that these programs are less than necessary and less than useful.
Sleep Paralysis: * This is awakening from sleep and the patient finding that he/she cannot move or open their eyes. This is very frightening and in Newfoundland is called "The Old Hag" as if there were a black witch sitting on their chest and going to kill them. I have asked each patient who had this symptom how they got out of it. Some say they move their eyes, jump off the mattress, scream. Their sleeping partners say they only make a very small noise, and do not jump 1 foot in the air off the mattress. Many have to go back to sleep and wake up later with no paralysis. I have seen 6 patients who could open their eyes and look all over the room about them and it did not stop the paralysis. I have told their sleeping partners that, if they heard the patient to have unusual breathing that they should touch them gently and it likely would stop the paralysis. For one lady this worked better than awakening her boy friend which would cause him to be verbally and physically violent, so I told her to get rid of him, which she did.
This may also occur on the way into sleep and I have called these "Sleep Trances". The few patients I have seen with this symptom cannot get out of the paralysis until it goes, or they go to sleep and awaken without it, or until someone touches them. One of my patients of 18 yrs of age with 3 children would lie down after lunch, go into this Sleep Trance, hear the children getting into all sorts of trouble in the house, but could do nothing until one of the children touched her, and then she was able to act.
Sleep Apnoea: * This is the descriptive name for persons when they stop breathing during sleep, and may occur many times, lasting a few seconds, and I was told that it was unimportant if it lasted less than 30 secs by one of the sleep lab directors. As a result I do not believe this 30 second requirement, as it is much too long, and is like the Pearl Divers in Japan. One report at a meeting of the EEEG Association was of a man who stopped breathing 560 times using this test. Many of these patients snore, and usually very loudly as they return to breathing again. This may wake the neighbours. The case reported above was a neurosurgeon who gradually forgot where his office was and could not practise. He was treated using a tracheotomy which he plugged in the day so he could talk, and removed the plug at night so he could continue to breathe all night, and he stopped snoring. This was until the new Criteria for the Diagnosis of Narcolepsy, considered to be one of the Triad of symptoms with which one could make the diagnosis of Narcolepsy. However the new Criteria has not included this, apparently as the Sleep Researchers consider it to be a different illness entirely. I disagree and the patients of mine with Sleep Apnoea, also have numerous other symptoms of Narcolepsy. .
Counselling sessions: These are frequently suggested for the patients to increase their ability to react according to someone’s correct rules for social behaviour. The narcoleptic patient with his/her ADD cannot pay attention, may go to sleep, may not answer a question, and get accused of not paying attention, not being cooperative, not wishing to improve, and get sent out of the session or program entirely. I regard this a characteristic behaviour for a narcoleptic patient as they get bored easily.
Furthermore I think that having all the group tell all their problems to the others is an invasion of their personal privacy and none of the other members of the groups business. This is one reason why there are so few patients with improvement.
Sleep Talking: This seems to be very prevalent in the patients with Narcolepsy. It is interesting that I found that more women swear when sleep talking than men, One man denied he talked in his sleep, so one of his friends the next night tape recorded a complete conversation with him. Some people are also violent during their period of sleep talking.
Sleep Walking: This occurs and the patient may have no recall of any of the happening. Sleep walking is said to be normal before 13 years of age. However this age group shows similar numbers of sleep symptoms of Sleep Paralysis as the people who still sleep walk at a later age.
One of my patients got up at 2am dressed, and went to the nearby coffee shop and had a coffee, could not pay for it, and said he would later. He went back home, undressed and got up at his usual time, went to the coffee shop about 10:00am, and the waitress asked him to pay for his 2:00am coffee. He had no recall of this at all.
One lady went to bed with her bathing suit on, got up about 1:00am left the apartment, and returned 1 hour later, had no key, knocked on the door, and her roommate let her in. She had no recall of where she had been. This lady called me Apr 18/04 in desperation, that she after a bad day had horrible nightmares, and after a good day the dreams were better. She had found that the previous week she had gone out and could not recall anthing as to where she had been in the afternoon, and had acquired some longerie, and apparently had not paid for it.
Violence after waking: A number of patients are violent when awakened. One man with sleep apnoea when awakened would become verbally and physically violent. His lady friend would then lightly rub her leg against his, and he would start to breathe without beating her up. I advised her to have nothing to do with him and she did so.
Another man sleeping was awakened by 4 policemen. In the next 15 seconds they were all on the floor with black eyes. He was taken to jail and charged with resisting arrest. The next day in front of a judge along with the 4 policemen with black eyes, he was sentenced to 90 hours of community work to train the 4 policemen how to defend themselves. I would like to congratulate this Judge.
Another man had drunk a mickey of vodka, was in the hall near his apartment, cleaning his fingernails with his pocket knife, when a black man walked past. He said something to the black man who went to his own apartment and called the police. The patient had gone into his own apartment laid down and went to sleep. T he police arrived, broke into his apartment, woke him up and he fought with them. He was taken to jail, and I had to send his lawyer an article on this subject written by Dr. A. Bonkalo, and he got off. This has occurred since 1120 A.D. on several occasions, and still does.
Violence during sleep walking: This has happened several times in the past 10 years, and hit the newspaper, and the courts. I will not repeat them.
Automatic Behaviour: This is behaviour of the patient who may suddenly do some usual or unusual behavious, who later may or may not recall any of it. This may occur in many differing situations. One man was insulted by a black man. The patient took the larger black man down in the intersection pounded his head on the pavement several times and came too when a truck driver blew an air horn repeatedly, at which time he thought "What am I doing here?" stopped his behaviour and ran away before the police arrived. The traffic had been stopped for some time, and the patient had little recall of what had happened.
A lady patient was told that her friends had seen her on the back seat of a motorcycle yelling and waving her hat, and the lady had no recollection of it. Another day she called me and said she had a leather jacket on the chair in her kitchen, but had no recall how it got there. Others have no recall of driving some distances in their cars, walking along the street going somewhere, eating a second meal and forgetting they had already had one very shortly before.
One young man drove daily to Waterloo to take his MA. Frequently he would drive past on the 401 highway, and have to come too later and turn back to Waterloo.
Dr. Mitler in an article suggested that this should be added as a symptom typical of Narcolepsy, to allow a Pentad instead of a Tetrad of symptoms.
Tetrad of Symptoms: These consisted since 1880 as described by Dr. Gelineau of Sleep Attacks, Cataplexy, Hypnagogic Hallucinations, and Sleep Paralysis.
Triad of Symptoms: ^ This is the NEW (TRIAD) CRITERIA for the diagnosis of Narcolepsy since 1975. This was voted unnanimously (?) At a meeting of Sleep Researchers in France. One of the attendees stated in an article that this vote was not unanimous, and if I had been there I would have also disagreed with it. It is my opinion that this has prevented many patients from getting the necessary diagnosis of Narcolepsy so the regulators could allow them to get alerting medication. This is due to their obsession of the regulators with the idea that the patients will abuse the medication. As an aside: It was reported that 17 patients in the U.S.A. had abused Parnate, and it should not be given to patients. They never mentioned how many patients used Parnate and got relief of their depressions. This is reprehensible decision making, writing, and publishing.
Polysomnography: This is taking an EEG all night to see if the patient will go to sleep with REM during the first ½-1 hour, which the Sleep Researchers have decided is absolutely necessary to prove that the patient has Narcolepsy. It is my opinion that this only proves that this patient with Narcolepsy is a SOREMP (Sleep Onset Rhythmic Eye Movement Periods) producer. I have many other patients with similar histories, and clinical symptoms who do not produce SOREMPS. The SOREMPS occurred in 5 of 35 of these tests, out of 80 patients sent for the test. I regard this test as unnecesary for the deiagnosis of Narcolepsy, and it's best use is to test for Sleep Apnoea: the occurrence of cessation of breathing during sleep.
MSLT: This is a daytime test consisting of 4 ir 5 periods of 20 minute attempts by the patient when the EEG is being done to see what the Minimum Sleep Latency is in minutes, and supposedly is more significant if it is less than 7 minutes, as well as to see if the patient shows SOREMPS during 2 or 3 of the 20 minute periods out of the 4 or 5 sessions of trying to nap during the day. This test was done on 9 of the a/m patients, and none of them showed SOREMPS.
MWT: A new Minimum Wakefulness Test, which consists of attempting to lie down and stay alert for 15 minutes and not doze, for 4-5 times a day. I have an old patient writing to me who is having one of these Apr 23/04, who thinks it is a foolish test. I agree with him. I will report the result when I get it. He tells me that he passed the test. I haven't heard yet if the Neurologist has allowed him to get his license the drive back. He emailed me that he passed the MWT test, and has got his license to drive back.
Dr. E. B Cahoon.