Chapter 3

Nights to Remember

One 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?

Another 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

"What 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."

"Sorry you can't use it for the study," I replied, "it will interfere with the air flow sensors."

"No," she pleaded, "I really need it to sleep. Please let me use it."

Being 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.

Next 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 tight.

"Why are you wearing the waist band?" I asked.

"I have 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.

The 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.

"It is a good idea to bring your own pillow, it usually helps," I said.

I handed 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 becoming!)

"I am 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."

"I have slept with this pillow over my face since I was a child, I can't sleep without it," he responded.

I went 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 his pillow.

All 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?

When 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.

Two 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.

One 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.

"How 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.

"Always," 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."

It's 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.

"I can't sleep lying down now," he said seriously, "It hurts to much to breathe while lying down because of my ribs".

I wasn't 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.

"It still hurts too much to breathe," he said, "in fact the only way I can sleep at home now is in a chair."

I knew 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 sensors.

This 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.

A couple 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.

The 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.

It was 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.

After 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.

Through 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.

One 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.

I'm 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.

Narcoleptic 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.

I was 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.

"Has 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 word.

Finally, 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."

Before 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.

I thought of other stories I had been told by narcoleptic patients.

"Has anyone seen figures of people around the bed when they wake during the night?" I asked.

Once 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.

I starting 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.

They 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 impaired.

One 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 it easily.

"What is the flashlight for?" I asked.

"Nothing," he responded, "I just like to have a flash light available when I sleep in an unusual place."

I didn't 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.

The 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.

He talked 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.

"Did you see people around you last night," I asked.

"Yes," 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."

I tried 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.

All 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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