night as I was hooking up a patient I noticed the smell I was now accustomed
to with apnea patients during the night. I also noticed he was already
sweating. This was the first time that I had really noticed the smell
during electrode application. The fact I could detect this odor above
the strong smell of the acetone and collodion, used to apply the scalp
electrodes, surprised me. Normally I would notice the smell after the
patient was asleep. I made a note of this in the journal I decided to
keep for my personal research. I also noted that his oxygen level dropped
to about 20% of normal and his apneas lasted for over 90 seconds before
he would arouse and breathe. Could there be a relation between the intensity
of the smell and the severity of the apnea? As I continued my experiment
I realized that 90% of the time I could predict the severity of the apnea,
the stronger the smell the more severe the apnea it seemed. But why was
everyone's odor the same with just differences in intensity?
interesting night came when I was monitoring three insomnia patients.
The first was a pleasant middle aged lady who worked in a hospital. After
applying the electrodes and getting her ready for bed she reached into
her purse and pulled out a surgical mask
is this ?" I asked.
"Oh, I always wear this mask while I am sleeping," she responded.
"If I don't my sinuses will dry out and I will not be able to breathe
through my nose."
you can't use it for the study," I replied, "it will interfere
with the air flow sensors."
she pleaded, "I really need it to sleep. Please let me use it."
a kind and willing patient, I really felt sorry for her, so I tried to
reassure her that I would do my best to make sure she was breathing through
her nose without the mask. I mentioned to her there were some saline nose
sprays in the lab she could use if she had a problem. She broke into a
big smile and thanked me for understanding. I finally left as she decided
she would go without it one night. I had seen and heard wilder things
so I didn't make much of it at the time.
I went into a room with a young man in his late 30's and he immediately
started talking about having been divorced for a year. He reported this
was when his insomnia started. He got into his pajamas for the hookup.
I found it somewhat amusing that most patients had new sleeping apparel
and I wondered what they really slept in at home. He complained of severe
insomnia and didn't think he slept at all except for a few hours a week.
When I got to the point of attaching his breathing sensors I found a rubber
elastic band around his waist about 1 foot in width, it looked really
are you wearing the waist band?" I asked.
been wearing it since I got my divorce," he replied.
"You don't wear that while you are asleep do you?" I asked.
"Yes, I wear it all the time," he responded, "the only time
I take it off is to shower. I am trying to lose weight and look better,
you know how it is when your single."
"I'm sorry but you can't wear it tonight," I said. "I need to
apply sensors to your stomach area and monitor the movements during the
night." It took some persuading but I finally got him to agree not to
wear the waist band. The night continued to get more interesting.
last patient was from Saudi Arabia and he had traveled to the lab just
for this sleep study. He was in his early 40's and had piercing blue eyes
and curly brown hair. He also stated that he felt that he rarely slept.
After I had applied all the sensors for the study, he was getting into
bed and asked for the pillow he brought with him.
is a good idea to bring your own pillow, it usually helps," I said.
him the pillow and instead of putting it under his head he placed it over
his face covering up his eyes, nose, and mouth. (What a night this was
really sorry but you will not be able to keep the pillow over your face
tonight," I said, "it will interfere with the monitors for airflow."
have slept with this pillow over my face since I was a child, I can't
sleep without it," he responded.
through the similar explanations as I had with the first two patients.
After a long discussion I was finally able to persuade him not to use
three patients were complaining that they hardly ever slept and would
go for weeks with only a couple of hours a night. As I turned out the
lights I prepared myself for an active night. Insomniacs seemed to toss
and turn a lot and ask for things during the night so I expected to be
busy. However, these three patients went to sleep in about 20 minutes
and slept throughout the night without even one bathroom visit. My brain
started ticking. Could their insomnia be a result of a problem breathing
caused by what they were using to help them sleep at night?
I went to wake them up, the lady and the man from Saudi Arabia couldn't
believe that they slept as much as they did and the patient with the waist
band didn't think he had slept at all. In later conversations with the
medical staff of the sleep lab I found that there had been a paper published
recently reporting that some people suffering from sleep related breathing
disorders, which usually causes sleepiness, also complained of insomnia.
I began my investigation of the link between breathing and insomnia the
following week. During my research on the subject of breathing I found
in some eastern medical books that the control of breathing was a powerful
tool. Many different feats could be accomplished with controlled breathing.
It was so powerful that if you were to breathe perfectly you could walk
on sand without leaving foot prints. I began to dream of the power that
could give someone.
months later I was monitoring three apnea patients. I had been keeping
my journal on the smell during hookup and comparing it to severity. I
would predict the severity every night and my predictions were running
about 90% true. I had been talking to the other techs about it and on
several nights they came by just to observe for themselves. Most were
amazed at my accuracy, my nose was becoming a fine tuned instrument of
diagnosis. The rare, mild cases were more difficult to detect. In fact,
I had to start with my smell test before starting the hookup to keep the
odors from the collodion and acetone from interfering.
night a patient came in from Denver. As I started with the hookup I quickly
noted the smell test which predicted very severe apnea. During the process
of applying the sensors I would ask a set of standard question.
many hours do you average sleeping during the night? How many times do
you usually need to get up and use the bathroom during the night? Do you
ever wake up with a headache or sweating heavily?" I would ask. These
questions would help me prepare for the night. I then asked him if he
ever had problems staying awake during the day.
he said, "in fact the reason I am here is because I fell asleep while
I was standing and talking to someone in my living room. I ended up hitting
the coffee table and broke some ribs. After this incident my wife finally
persuaded me to come in for a test."
not uncommon for something dramatic like this to happen to a person before
they realize they need to be tested in a sleep lab. I finished the hookup
and started to get the bed ready for him.
sleep lying down now," he said seriously, "It hurts to much to breathe
while lying down because of my ribs".
sure what to do. I raised the head of the hospital bed as far as it would
go up but that wasn't going to work.
still hurts too much to breathe," he said, "in fact the only way I can
sleep at home now is in a chair."
we had a lazy boy chair in the room so I contacted the on call physician
to explain the situation. He didn't like the idea but we decided to record
him in the chair. It wasn't an easy task to get everything right for the
night. But I did get him in the chair and comfortable even with all the
was the first night that the smell test failed. He did not have one apnea
and he had good quality sleep. My mind started racing. Could sitting up
and sleeping in a chair be a treatment for some sleep apnea patients?
Most patients didn't like the idea of a tracheotomy which was the only
effective treatment at the time. We brought the patient back in 3 months
and had him sleep in bed. His test showed very severe sleep apnea as my
nostrils had first detected.
of weeks later it was apnea night again. There was nothing unusual in
the beginning. Normal hook-ups started with applying the electrodes on
the patients' head to monitor brain activity so we could detect different
sleep states. Next the EKG (heart) sensors were applied, followed by the
leg monitors, and finally the airflow sensors. Most non-EEG (brain) sensors
are taped on with a hypoallergenic tape. The entire process was taking
around 45 minutes. I could have made it shorter but I liked talking to
the patients and making them feel comfortable. This information I gathered
could also help me take better care of them during the night.
night started as expected. After lights out everyone went to sleep very
quickly. My nasal sensitivity was right on target. They were all having
fairly severe apneas lasting for more than a minute at a time. As I was
reading I would occasionally look back at the polygraphs to make sure
the pens hadn't run out of ink and check for any electrode problems. It
was about 2 AM and I noticed one of the patients was sleeping soundly
and breathing normally. Flipping back through his recording for the night
I saw regular long apneas. This was the first time I saw the disappearance
of severe apnea during the night. My curiosity moved me to look through
a porthole to his room. Each room had a small porthole so we could read
the values from the instrument measuring oxygen levels. I noticed the
patient was lying on his right side. On this same side, he was wearing
a huge earpiece for the oximeter. Most patients never slept on the side
with the monitor. They always slept on their backs. We never encouraged
them to sleep on their side because of the possibility of some sensors
coming off when they moved. A few minutes later he rolled over on his
back and the apneas returned and were as severe as earlier in the night.
I began making notes about which position he was in at various times during
the recording. I noticed when he moved on to his left side the apneas
continued but they were not as severe. This patients position during sleep
became an standard observation and was given the name 'position related
apnea'. All sleep techs in the lab were required to encourage patients
to sleep on there sides and back during the night, noting the position
on the recording paper. The patients who had a position which improved
their sleep would be asked to sleep on that side as much as possible.
Soon after, some patients were treated by sewing tennis balls into the
back of pajamas to keep them off their back. We learned from this, that
apnea patients were most vulnerable while sleeping on their back.
1979 and times were changing and discoveries in sleep were happening at
a rapid rate. Narcolepsy was the most difficult disorder to diagnose and
there was no cure in sight. Most patients had to take stimulants to stay
awake and REM sleep suppressants to manage the cataplexy.
feeling I was able to contribute some help to insomnia and sleep apnea
patients, I was now becoming intrigued by narcolepsy. I knew this would
be a challenge. They loved to sleep and slept well.
different conversations with some of the narcoleptic patients my readings
went from sleep disorders to a subject I thought was bogus. I started
looking at books on alternate worlds and psychic phenomena. Someone recommended
Carlos Castaneda's books about don Juan. I found them very interesting.
night I was hooking up a narcoleptic patient who's husband was with her.
They were a very interesting couple and told me that they had a photo
called Kirlian photography of her entire body while sleeping. Everyone
involved in the photography experiment was shocked. He would not tell
me the results. I mentioned that I was trying to learn as much as I could
about similar topics I had heard from many narcoleptic patients. The husband
recommended reading G.I. Gurdjieff and P.D. Ouspensky's "In Search of
the Miraculous" which was a journey Ouspensky made with Gurdjieff.
not sure if it was the staying up all night or just the times but I found
the books remarkable. I was so fascinated that I had to read Gurchieff
himself. This was not easy reading, but he was someone who was considered
a contemporary, enlightened person. None of these readings really connected
to narcolepsy but I was really enjoying the literary journey.
patients also had to take a test called the Multiple Sleep Latency Test
(MSLT). This is a series of naps that allowed an understanding of how
sleepy they were. Severely affected patients fell asleep quickly during
a series of naps given throughout the day. One thing you had to do when
giving a narcoleptic an MSLT was to make sure they didn't fall asleep
between naps. Five naps were given 2 hours apart and the patients are
allowed 20 minutes to fall asleep. Once they fall asleep they are allowed
to sleep for 15 minutes. Narcoleptics will usually have at least 2 naps
with REM sleep within 15 minutes of sleep onset. If they do not go to
sleep the session is ended in 20 minutes after lights out.
doing the MSLTs for a group of 4 narcoleptics one day that were severally
impaired. They would beg for 2 more minutes of sleep at the end of the
nap. None could keep their eyes open for more than five minutes so I had
to get all four patients in the recording room where I stayed between
naps. I had them hold each other's shoulders and walk around in a circle.
Their heads were bobbing all the time, but they were able to keep awake
as long as I watched and they kept moving. During one of the breaks between
naps I realized they were all really tired of walking so I asked them
to sit in a circle in the lab and talk. I started the questions based
on some of the stories I had heard from other narcoleptic patients.
anyone here ever had an experience where they felt they were out of their
body?" I asked.
Silence moved in, everyone was looking at each other without saying a
Mrs. P spoke, "I have noticed when having cataplexy there are times when
I can see myself lying on the floor. One time there was someone there
trying to give me mouth to mouth resuscitation and I was watching him
from above. I wanted to tell him that I could breathe but I couldn't speak."
I knew it all 4 patients were talking about virtually the same sensation.
Mrs. P stated that she has had these episodes while asleep and had to
be careful if she floated out of the house. "I can get tangled up in the
telephone and electrical wires and get stuck until I wake up," she said.
of other stories I had been told by narcoleptic patients.
anyone seen figures of people around the bed when they wake during the
night?" I asked.
they started on this question the stories flowed with much more detail
than I had ever received. They all had similar but different experiences.
Some would just see one figure, usually at the end of the bed. One patient
would see several people in a circle at the end of the bed and one usually
saw a sparkling gold person standing right next to their bed.
thinking that there had to be a connection. So I came up with a standard
set of questions I would ask the patients as I would hook them up. After
some small talk to get them comfortable I would ask, "I am just curious,
do you ever see what looks like someone around your bed when you wake
up?" Most of the time I would get a flood of information. "I have never
talked to my doctor about this because I have been afraid he would lock
me up, but ........." and the stories would flow.
reported not just seeing people but many had out of body experiences.
Some would continue to open up. Many were known in their family to have
premonitions and could see things in the future. Some were professional
psychics or palm readers. They could detect auras, etc., one patient could
learn a foreign language in days and be fluent, he told me that the CIA
had hired him to translate Russian news. In any other setting you would
think you were dealing with some kind of psychosis, but I had access to
their history and medical records and knew that they were not mentally
night there was a patient being tested for narcolepsy who was a retired
clergy from San Francisco. As I was hooking him up I asked my usual set
of questions. This time all I got in return was, "No sorry I haven't had
any unusual experiences". Just before turning the light out he reached
for a flashlight he had in his bag and placed it where he could reach
is the flashlight for?" I asked.
he responded, "I just like to have a flash light available when I
sleep in an unusual place."
think much about the flashlight at the time but I knew he had the classical
symptoms of narcolepsy. The absence of unusual stories bothered me. So
after I got all the patients in bed and asleep I took out his chart. I
started to review and I couldn't believe what I read. Before coming to
Sandfort he had seen 3 different eye specialist concerning the visions
he had when he woke up. He told them there must be something wrong with
his eyes because he would awaken seeing people standing around his bed.
No one could find any problems with his eyes. He had seen two psychiatrists
and a psychologist and nothing could be found. It was noted that he would
wake his wife up and point to people standing between the bed and the
wall. His wife would tell him she couldn't see anyone so one night he
got a flashlight to put by the bed to prove to her they were there. He
was sure they were not shadows because they seemed to be three dimensional
in appearance. The next time he woke and saw them he shook his wife, woke
her and turned on the flash light, to his amazement when he turned on
the light they disappeared.
following morning as I went in to unhook him I didn't know whether to
let it go or say something. But before I could ask a question he said
"I am sorry, I wasn't honest with you last night, I use the flashlight
to help me check if there are people standing around the bed when I wake
up." He was in tears as he spoke.
about the eye doctors and everything in the chart and talked about his
out of the body experiences which were not mentioned in the chart.
you see people around you last night," I asked.
he responded, "and I don't think I have ever seen as many as I did
last night. There were at least 10, usually I see 2 or 3 figures, I think
I am losing my mind."
to make him feel better. "Everything you have told me about is common
with people who have narcolepsy," I said. "I hear these stories
all the time. Most patients don't tell their doctors because of fear but
for some reason they tell me. Many patients fear they may have a mental
disorder but it is part of narcolepsy which can be controlled." I tried
my best because I could sense that he really felt lost.
night techs were discouraged to talk to patients about results or symptoms
but I felt this was a special case and went into a little more detail.
He left feeling better, knowing that what he was going through had a name
and there was treatment. I felt lucky to be able to interact with some
of the most severally affected narcoleptic patients in the world. Little
did I know that they were going to be an integral part of one of the greatest
adventures of my life.
Go to Chapter 1, Chapter 2, Chapter 3, Chapter
4, Chapter 5
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