Other's Stories

Brian's story Brian is the one who originally had the website, but can no longer keep up with it. Thanks for all the help Brian!

Height: Something like 5'10", depending on how bent over in pain I am.
Weight: Too much, of course but it's coming off

I wear glasses, went the contact lens route for a while but it's hard to do when you have narcolepsy. My eyes change from shades of brown and green, depending on mood, lighting, stuff like that.
I didn't graduate high school. I dropped out in the second semester of my senior year because they had to "lower the curriculum" to meet the incoming students that year. I was forced to take all the same boring classes I took the year before. I got my GED about 3 weeks after getting to my first duty station in the army. My time in the army was for 3 1/2 years at a place called Fulda near the border of east/west Germany at the time. I never could understand why "The Wall" was such a big deal when we had to go on guard duty at the edge of a stretch of fence that was something like 1400 miles. They had fake towns on the other side that only the soldiers on guard duty would be in.
I won 3 Army Achievement Awards, 3 good conduct medals (you have to be really bad to not get one of these, 3 honorable discharges and learned how to deal with people from the whole experience. I learned how petty the politics of the world is. I learned a lot, but not stuff they wanted me too.

I had my first HH (Hypnagogic Hallucination) around the age of five. I was outside playing with my dog on a hot summer day near his dog house. I turned away from my dog to move toward his house to get another toy for him to fetch, as I turned I saw in vivid detail, a leprechaun, I could smell the smoke from his pipe, I could see the texture of his clothing and heard his movements as he brushed against the dog house. He spoke to me, he told me I was special, that there were very few people like me and to hang in there and always remember what he had said and I would be all right. I asked him a few questions and then noticed that my dog had run off and then I turned to find my dog and when I turned back, the leprechaun was gone. I went to look inside of the dog house and as I crawled into it, I fell fast asleep. I woke up as my mother was shaking me, I was drenched in sweat and it was intolerably hot in the dog house. My mother told me that she had been looking and calling for me for about a half hour and finally saw my feet sticking out of the doghouse. I said nothing of the leprechaun because he had told me to keep our meeting a secret , between us.

I was born in Oroville, Ca., Sept. 12, 1960. I have one sister who is 2 years and 2 months older than I am. My mother left my father when I was about 1-1/2 years old and packed us up and moved to Reno. I've lived here the rest of my life except for the 6-1/2 years I spent in Germany on active duty with the U.S. Army.

My symptoms started showing as soon as I entered school. Kindergarten was all right because we took a nap in the middle of the school day and we only went to school for a few hours. I do think it was around this time that it was discovered that I needed glasses. The lower grades of school weren't too bad, I had to sit up front, I was easily distracted and had an extremely hard time with math and keeping up with the work in general. By the time I got to the sixth grade, things were bad enough to bring my mom and step-father in for parent-teacher conferences on a regular basis. My grades weren't too great, I was even more distracted, I didn't seem to be able to play like the other kids did and I was beginning to fall asleep in almost every class. The best thing about grade school was it was only a half block away from where we lived so when I got home I would usually go straight to take a nap.

When I was 10, I had to have my tonsils and adenoids removed, they were swollen so large that I could only consume liquids. They tried a lot of things to get the swelling down but after 3 weeks, it was obvious that it wasn't going to happen. I was a pretty skinny child and not being able to eat wasn't helping matters much. So, into surgery I went. This event is significant towards narcolepsy because after the surgery I slept for 4 days, only waking to go to the bathroom and drink a little, my mom was with me constantly and on the phone with the doctor twice a day until I revived. Many PWN's have a high sensitivity to anesthetics unless they are being treated with stimulants. This was the first time I showed that sensitivity.

Junior high and High school were worse, I knew I was different than everyone but I didn't know how. Somewhere around the age of 14 or 15 when puberty kicked in really hard, I had another vivid hallucination. I was walking down the hall in school and suddenly everyone was wearing Elizabethan era costumes. I was suddenly quite weak and had to lean against a wall locker for a few minutes while I recovered. I guess that was my first cataplexy attack. I used to have strange attacks where it felt like there was a rope in my chest that was constricting tighter and tighter until it bound into a knot. I now know that those were anxiety attacks. Counselors talked to me about why I could pass one class with no problems and in another, I fell asleep almost every day, couldn't pay attention and was barely passing. All I could ever say was that the teachers in those classes were boring. The counselors thought I was "playing stupid" and fellow students thought I was stupid or mentally challenged or something. Now I know I was just really sleepy. I dropped out of High School with only 1 1/2 credits to go. In my senior year, the school district had lowered the curriculum level for my school because testing in the school showed the overall intelligence of the students had dropped dramatically from the previous year. I couldn't stay awake for any of my 3 classes, so I quit and got a job.

My first suicide attempt was around the age of 16, I never really fit in with the rest of kids my age and I never had more friends than I could count on one hand. I couldn't do any of the physical competition or physical education classes because of unexplained weakness. I was always the target of bullies and never really caught on that they were about to beat me up until I was lying bloody on the ground. I couldn't stand the way I had to struggle to just stay at the back of "normal" life so I thought that I would call it quits, all I succeeded in doing was humiliating myself and ended up with a sore stomach.

Updated 11-14-97

I was married the first time a few months after I turned 18, we couldn't keep up with the bills even with both of us working full time so I got desperate and decided the only way to survive was to join the army. There was a painful bump on my right foot since I was about 14 years old. I had to pretend it wasn't there while the doctors at the armed forces entrance and examination station poked and prodded me to make sure I was a whole person. I grit my teeth when they poked at the bump and did my best to walk normal as it throbbed with intense pain. They declared it tendonitis because that's what a few family doctors had said when I tried to get help for it. Mistakenly, I thought that once I was in the army, I might be able to get proper medical care for it. I took my basic training and advanced training at Ft. Leonard Wood, Mo., it was there that I experienced my first ice storm. The morning after I arrived, we awoke to find almost 2" of ice everywhere. I was very sick that day and went to the medics, within a few hours I was checked into the hospital with ARD (Acute Respiratory Disease), a condition unique to mass sleeping environments such as barracks. I spent the next 3-1/2 years in the army in what was then W. Germany at a small town known as Fulda, the combat engineer company I was in helped to guard our part of the 1400 miles of fence that separated W. Germany from E. Germany. Although I was trained as a combat engineer, I spent all my time as a parts clerk for the motor pool because of my high scores on the entrance testing and the fact that they couldn't get anyone with the proper skill training to do the job. I took naps in the parts bins in the motor pool under the guise of doing inventory or re-arranging the parts. Most naps were only 15-20 minutes long and since I usually worked at least 12 hours, 6 days a week, I was never suspected of goofing off. I took the companies' parts department from having no score on the Adjutant Generals annual tests for 3 years to 100% for the last 2 years I was there. For my accomplishments, I was awarded the army achievement medal. It was during this, my first stint in the army, that I learned that I didn't sleep the way most other people did. I slept 3-5 hours a night for 2-3 weeks, then I had to sleep every chance I got for 3-4 days

My first wife divorced me a few months after we returned to Reno after she had a nervous breakdown. While I was in the army she threatened to divorce me if I didn't leave the army and when I did, she decided a divorce was best anyway. I went to work for a local casino, Harrahs' as a change person and after they opened up their own laundry facility, I became a truck driver for the laundry dept. I took naps during my breaks and slept a lot in the evenings, I thought it was normal because I was working 10-13 hours a day, 6 days a week. After 18 months of working for Harrahs' I got tired of barely being able to make ends meet, being single, lonely, having no money and nothing to do so I joined the army again.

I was told that because of my previous experience and my secret security clearance, the only place I could go was back to the border, this time though it was at Wildflecken, a NATO training post, the US ran it but most NATO countries came there to train. I was only 33 kilometers from where I had been stationed before, so I knew the territory well. I had decided to learn to do all the things I couldn't do the last time I was in the army because I was married. I traveled extensively, learned to ski, both cross country and alpine and became quite proficient at both. Wildflecken was at the top of a large mountain range known as the Rhon, compared to the Sierras where I've spent most of my life, they were just hills but for Germany, they were big. One of Germanys' largest nature preserves was there and I spent a lot of time hiking through it, there were swamps and prairies and forests. One thing about Germany that I will never forget, no matter where you go, no matter what time, you will always run into another human. I used to walk the wilderness at 3am and always met another person doing the same.

Updated 11-14-97

Wildflecken was the place where, for the first time in my life, I experienced the phenomena of thunder and lightning during a snow storm. The swirling winds and dry air combined to create the massive static discharges. Because it was a snow storm, you couldn't see the lightning bolts but the air was filled with snow, driving was almost impossible and usually accomplished at 2-5mph, when the lightning would strike, the air would flash bright white as the light from the bolt would reflect off of every snow flake. The lightning was striking very near by as we heard thunder at the same time as the snow would light up.

While in Germany, I stayed in contact with a woman that I had worked at the laundry with, I married her to get her away from her ex-husband who was constantly harassing her and threatening the life's of her and her children. I brought her to Germany for one month and then she went home, soon after, we divorced and went our separate ways. When I got home I saw an article in the paper that her ex had been killed in a shoot-out during a drug deal.

I decided to leave the army after my second enlistment because the lump on my foot was much worse. I tried to get it taken care of for a few years while still in. I got the usual, it's tendonitis or it's a bruised bone and one time I even got an x-ray that showed broken bones in the first metatarsal joint, I had run 13 miles in preparation for a marathon the night before and hadn't even noticed any pain. One month before I was to end my enlistment, I finally had it arranged for surgery to be performed on the bump to see what it was. I had been given a spinal block and because I could hear what the surgeon was saying I panicked and they had to close early. They had removed a lump however but I never got an answer as to what they had found. When I got home in Jan '87, I requested my medical records, when I received them, any account of anything wrong with my foot was missing, no tendonitis, no broken bones, no surgery, no nothing. My health was deteriorating, I was losing weight, having a lot more trouble sleeping. I started going to doctors again trying to get help, trying to find out what it was.

I found a friend that I had known in high school, she and I dated a while and we soon were married. I don't know that it was so much a marriage of love as one where we both knew I was dying, we cared for each other and she didn't want me to be alone. One of her friends told us about a podiatrist she had been to, I had already been to at least 6 doctors in as many months with them only diagnosing the usual. I didn't really want to see another doctor that was going to tell me there was nothing wrong except maybe some tendonitis. I finally gave in and went to see Dr. Cathy Bax. After a few examinations and the usual, try this, try that, she finally said she wanted to do exploratory surgery. I gladly agreed and within a few days, she performed outpatient surgery.

The day before Thanksgiving in '88, I had my mom drive me to Carson City, about 36 miles from our home to see Dr. Bax about what she had found. I went in while my mom stayed in the waiting room, Cathy walked in and the doctor that was usually happy and energetic was pale, droopy and not happy looking at all. I asked her what was wrong and she pulled over a chair and sat next to me, she went into a lengthy discussion of how the surgery went, what she saw when she opened my foot and then said something like this. Oh, Brian, I'm just avoiding it, you've got cancer. It's been 9 years as of this writing and it still makes me cry to think of that day. I cried and cried and when I was done she went on to say that she just couldn't believe the local lab so she sent a tissue sample to San Francisco University Medical Center, they confirmed the other pathology report and she still couldn't believe it so she contacted a friend who worked in another pathology lab in San Francisco that she had gone to school with. She told him that she was sending a tissue sample and she wasn't going to tell him what she had been told it was, she wanted him to look at it and tell her what he thought. He agreed and when he called her, his report was the same as the other two labs. It was a very rare form of cancer known as Synovial Sarcoma. She had checked and there was no one in within 100 miles that would even look at it for me, so she contacted a friend of hers who contacted a friend of his who knew Dr. Richard Lenon who worked at Stanford University Medical center. I called and talked to him and was soon on my way to stay in San Francisco for 2 weeks for a bunch of tests and appointments to discuss what could be done about this thing growing inside me.

While sightseeing between tests, I had an NDE, Near Death Experience. My wife (Cheryl, my third wife) and I were in a book store, just looking around, suddenly I felt very weak and collapsed to the floor. The next thing I knew I was standing by a post, looking over a mans shoulder, watching as one of the book store employees started CPR on me. I wondered why the heck would he be doing that to me when I was just fine, I started critiquing his CPR technique when I saw Cheryl rush over to me. It was then that I realized that I was looking at my own body laying on the floor and I was on the receiving end of CPR because my heart and breathing had stopped. Suddenly, I was sitting up, coughing, a bit irritated at what was going on. I asked, what are you trying to do to me? The man said to just stay still, an ambulance was on the way. Being ever frugal, I said, I'm not paying for an ambulance! I staggered to my feet, Cheryl told me not to move, I grabbed her arm and with me hunched over from the pain, we went out the door and ducked down an alley. I rested for a moment and when I heard the ambulance siren I grabbed Cheryls' arm again and headed for the nearest BART (Bay Area Rapid Transit) station. Once on the train, I was fast asleep. When we got to my chosen destination we got a return ticket and I slept on the way back, we got to the car and Cheryl drove us back to the hotel. I remained asleep for the next 20 hours.

After all the tests, MRIs', CAT scans, blood tests, x-rays, etc., I met with the surgeon, Dr. Donald Nagel. He was one of the countries leading micro-surgeons and the last person anywhere near the west coast to see a case of Synovial Sarcoma. He was kind, calm, obviously knowledgeable and very considerate. I listened as he explained that I had 2 choices, the first was re-construction. They could try to take out the growth on my foot, part of the surrounding bone and muscle tissue, then put in a piece of bone from my hip and fuse it all together. The second choice was to amputate my foot at the ankle. Part of the choice of re-construction was that if they got in there and saw that the cancer was wide-spread, they would have to be allowed the option of amputating anyway. Re-construction would take many operations and many months. Dr. Nagel said I seemed to be pretty weak already and if it were him, he'd choose amputation. I asked if I chose amputation if the pain would be gone afterwards, he said there was no way of telling. I decided it would be best to have my foot amputated.

Two days after Christmas in 1988 they removed my right foot. The type of amputation I had is called a Symes, they take the foot out at the ankle joint, remove the heel pad and the fatty tissues from the bottom of the foot and fold and tuck it under and sew it up to the bone where the ankle used to attach. They also cut and smooth off the bones on both sides of the ankle so that everything is even and there are as few rough surfaces as possible. During the operation there were eight doctors, internists and students working on the amputation, Dr Nagel and 4 others had a hand in doing the final stitches and the difference in the work is obvious. There were also 4 doctors working on removing 3 lymph nodes from my groin area, where the thigh meets the hip. I was told that the nodes were actually right against my back but because of the hip bone, it's easier to get to them from the front. The nodes were suspect because they showed greatly enlarged on a lymph-angiogram that was done a few days before the surgery. If the nodes tested positive for cancer, I could have metastases through more of my body.

I woke in the recovery room just outside of surgery about 4-1/2 hours after the operation began. The recovery nurse was shocked when I started moaning and trying to turn over. My eyes were extremely blurry and goopy and I was trying to move my hands to wipe them. She stopped me and started questioning me right away. She asked if I knew who I was. I said, matter of fact, "yes, just look on my wrist band, that's what it's for". She laughed and said no, I need to know if you know who you are. I said, of course I do, why wouldn't I. She laughed again and said, you've just been through four and one half hours of intensive surgery, you shouldn't even be awake for another hour, most people don't have a clue as to who they are or where they are, now tell me your name. I did and then started questioning her, I asked why my eyes were so goopy, she told me that when they put me under that I wouldn't keep my eyes closed so they filled them with a gel to keep them from drying out because of the anesthesia and oxygen. When I was in the army I had a few roommates who told me that I often slept with my eyes open. I don't know if it has anything to do with narcolepsy but it's always been one of my oddities. I don't do it quite so often now, it's one of the bad habits that Mindy helped me stop. I was in the hospital for 6 days total, I had 3 hallucinations that were probably morphine induced, when I had the 3rd one, I thought I was headed for a 7-11 store, I was a few seconds from stepping out of the bed, onto my extremely swollen stump when a nurse dashed in and stopped me. The next morning they took me off the morphine.

Not long before the surgery I had purchased a single wide 14x60ft. mobile home (trailer) and was buying a lot in a small town called Silver Springs near Lake Lahonton, it was about 50 miles from both Reno and Carson City, lines drawn to the three of them formed a triangle on the map. I spent a long time laying on my water bed with it's high captains pedestal looking out the window, watching the cars and trucks coming down the hill in the distance, my cat often by my side, both of us fading in and out of sleep.

Not long after the surgery I started having strange problems, I was sleeping at least 12 hours every day, exhausted all the time and I started having problems with weakness. One day I stepped out of my house to go for a walk on my crutches and a car backfired. I suddenly felt myself tumbling over, my head rushing toward the ground. I lay there in a twisted heap, I had just dropped off of a set of steps that were 36" high into a bed of blooming tulips, crocus and mud. I couldn't feel my body but I could hear cars in the distance and some birds chirping. I thought, great, I've broken my neck, no one is around I'm going to either freeze from the cold or just die like this. After a few minutes I felt that I could open my eyes, when I did, I saw blood running down my glasses, my chin was in my chest and the back of my neck was pressed into the mud, my glasses were twisted on my face. Slowly I began to come out of it, first feeling my arms, then my legs, after what seemed like hours but was probably a few minutes, I could finally get up.

About a year later, I was still in pain almost as severe as the day I had the amputation. I started having repeated nightmares where I would ride down a long elevator, when the doors opened I was in a large, round cafe, the elevator shaft ended at the back of the cafe, slightly forward of the back wall. I would walk in, see several people and then the cafe would burst into flames, I would trip, fall and my right leg would break into a compound fracture inside my prosthesis, blood gushing everywhere, they couldn't get my prosthesis off, someone said they'd have to amputate, above the knee this time. I told this to my oncologist a few weeks later, he ordered a bone scan right away. Later that day he told me I had another rare condition known as RSD (Reflex Sympathetic Dystrophy). The bone scan showed a bone loss of something like 65% over a nine inch area starting about 3 inches above my stump. Dr. Lenon said that if my leg wasn't in a prosthesis, the bone was pretty close to breaking and it probably would have been in a multiple compound fracture. He asked if I would be willing to go through an experimental therapy that had only been tried on a few humans but was very successful in animal experiments. I said sure and he told me he'd call in a few days with the details.

The therapy was self-injections of a hormone called Calcimar (Salmon Calcitonin). He called my doctor and told him what to do, then I went in to learn how to do self injections. Dr Lenon called me and explained everything and I got a prescription for the Calcimar and a few Epipens (epinephrine auto-injectors), they are used for people who might have anaphylactic shock, a severe allergic reaction that often causes death.
Each day, for the next 30 days in the morning, I would sit by the toilet, prepare my injection and injection site, then hold an Epipen in one hand and the hypodermic in the other. I would inject the Calcimar into my leg and then within 5 minutes, break out in a profuse sweat, start shaking and then throw-up repeatedly for about 15-20 minutes. I'd usually fall asleep on the floor or leaning against the wall after it was over and wake up about an hour later. The Calcimar stopped the progression of the bone deterioration, reduced the pain and now they use it routinely in much smaller doses to treat Osteoporosis and sometimes RSD.

The pain in my leg continued, despite that the bone was growing back but it was more localized to the end of my stump. Dr. Nagel soon told me that it was probably because the nerves didn't retract correctly when they cut them and I was essentially walking on the ends of the nerve bundles. He said they could amputate higher but there was no guarantee that it would improve. To this day, I still have symptoms of RSD and walking is like having a tooth drilled and the dentist hits a nerve with the drill. I am in constant, severe pain. Some days it's worse, some better but it always hurts. I have to take pain meds daily and they don't help the sleepiness.

About 3 years after the surgery, I was still exhausted all the time, couldn't make it to work half the time, and was beginning to grow very thin and frail. I started vomiting every day on the way to work. I lost my job as an office manager at a company called Delta Rubber. I went from doctor to doctor looking for what was wrong and was continually told it was depression, bi-polar disorder, clinical depression and all kinds of other things such as hypochondria. I decided to divorce Cheryl because we never saw each other any more and I couldn't stand the thought of her one day finding me laying dead in the house. I filed for unemployment and was instantly asked if I would like to work there. I explained my situation and was told that there would be no problem with me working odd hours, only when I was able, for only as long as I could each day. That job lasted about a year, I met my present spouse there, her name is Mindy.

Mindy told me once that she wanted to be with me, she knew that I didn't know what was wrong with me, that I was very, very ill and didn't know how much longer I would live. She said that any time spent with me would be a joy, even if it was a few months, a few weeks. Cheryl and I were living at opposite ends of the house, I legally divorced her and asked her to leave, she was glad to. I gave up my four cats, including the jet black Manx that I raised from a 12 week old kitten, Max was my pride and joy but Mindy is deathly allergic to cats.

Soon after Mindy moved in with me she made it clear that she was going to do all she could to find out what was wrong with me and she didn't care if we went broke doing it or had to go to every doctor in the country. A few months later, one of the people at the unemployment office suggested we try her doctor. We made an appointment with Dr. Michele Kiser.

We went in to Dr. Kisers' office and I told her that I didn't want her to know what any other doctor had said, that I wanted to describe my symptoms and see what her objective opinion was. I told her that I thought I was continuing to be misdiagnosed because each doctor was just going by what the others had said. She agreed and I spent about 5 minutes explaining my symptoms, everything, hallucinations, unexplained physical collapses and sleeping 16-20 hours a day, most days of the week. She asked a few questions and then said, we need to have you tested for Narcolepsy. I had only heard of Narcolepsy one time before, briefly on the Oprah Winfrey talk show, they had a narcoleptic Dachshund and they discussed symptoms, treatment and how people are diagnosed. None of what they were saying sounded anything like what I was going through, but as soon as Dr. Kiser said Narcolepsy, it all matched up, made sense, sounded right.

My first sleep study was in the basement of the local emergency medical center known as Washoe Med. It was in the winter, I arrived in the afternoon to get hooked up with all the wires to do the Polysomnogram (PSG) and the next day, the Multiple Sleep Latency Tests (MSLT). I always thought that kind of sounds like a sandwich, I'll have an MSLT on rye toast with a side of fries please. :-) I filled out a form that asked a few questions about my medical history and what, if any medications I was on. I was a bit annoyed by this because they should have already had all this info from my office visits with the neurologist. During both the day and night tests I was allowed to have caffeine, I thought that kind of odd and made sure the tech wrote it on my chart. If anything was going to influence the tests, I wanted it known in writing. When Mindy and I went in to find out the neurologist, he said that there were no apneas on the results, only one hypopnia and no sign of narcolepsy, he then told us that I must have apnea and gave me a prescription of Ritalin, 5mg to be taken twice a day. We wanted more information and to ask him some questions but he kept leaving to do other things and when he came back he would just talk to the sleep specialist and then run out again. We waited over an hour and got fed up and left.

I had become a member of the Narcolepsy Network and in the second newsletter that I received from them was an article about GHB, a sleeping medicine that was being tested as a treatment for narcolepsy patients. There were two doctors (sleep specialists) doing the study, one one the east coast (Dr. Scharf) and one in Denver, Dr Scrima. I called Dr. Scrima and got all the info I could, he said I'd have to do another complete study and I would have had to even if the last one was done correctly because the FDA required one done by him.

In Oct of '94, Mindy and I flew to Denver to get the sleep study done. On the 13th, we first met Dr. Scrima, he told us all that was going to happen, showed us around the sleep center and talked with the neurologist, then we came back the next evening. The technician that was supposed to start the testing had an accident on the way, she blacked out, I later found out that it was not narcolepsy related. So, I had the pleasure of talking to Dr Scrima while he was hooking me up. He hadn't hooked anyone up with all the wires leads, straps, that are used during the sleep study in a couple of years so it took him a few hours, during that time I had a few hallucinations and several twitching motions which I later learned were myoclonus. We got our insurance to pay for this second sleep study because I clearly told them and they documented that I was on Zoloft during the first sleep study. Dr. Scrima wrote a letter explaining that this medication or any of the SSRI type of anti-depressants clearly make a sleep study invalid. The sleep center was very quiet, the rooms well insulated, each with it's own thermostat, I had plenty of blankets and the bed was very comfortable. There was an infra-red camera in the corner of the room to see if I had many movements through the night. I was quite nervous when I got there but after talking to Dr. Scrima for a few hours I had no problem falling asleep right after he shut off the lights. I woke up about 6 hours later and then had to stay up for 2 hours to start the MSLTs, sometime during the night, the substitute tech had showed up and she came in for a few moments to add a few pickups because I was having unusual up and down eye movements as well as side to side. I barely awakened while she put these on.

The next morning I was awakened by the sleep tech at 6 am, that day I would have to stay awake during the 2 hour breaks between each of the MSLT tests. I had no problem with the first two breaks, I was yawning a lot and had to keep busy but no cataplexy or sleep attacks that I couldn't fight off. I went to sleep for the 3rd nap with no problem, it felt as if I went into a very deep sleep right away. Then there was a hard knock on the door, startled awake, I sat up in a hurry, the light came on and the tech, Dr. Scrima and Mindy came into the room, I started to try to stand up but collapsed back onto the bed, I could still hear them talking but couldn't move a muscle, this was my first recorded cataplexy attack. When I came out of it, the tech asked the usual questions. Did you dream? What was the dream about? I was really weak and feeling woozy, they hadn't started to take the electronic hookups off yet. I tried to sit up all the way on the bed again but as I did, I felt the strength rush out of my muscles and I again collapsed onto the bed again, watching the ceiling as it rushed away from me. This time my eyes stayed open, I couldn't focus but I could move them. This was my second recorded cataplexy attack. Then I was given the time to fully come out of it, with only Mindy speaking to me, I calmed down, re-gained my senses and slowly revived to the point that I could sit up, let them disconnect the hookups and then I slowly stood and walked back into the kitchen area. I had a great deal of difficulty staying awake this time, making jewelry didn't keep my interest and when I would try to walk, I had to much trouble doing so, so I stayed seated and Dr. Scrima and Mindy did their best to keep me awake. After about an hour and a half, I just couldn't stay awake any longer, Dr. Scrima decided that we should let nature take it's course and let me take my 4th nap a little earlier. As I walked down the hall, I suddenly felt a wave of weakness come over me and felt the floor rushing up to greet me. Dr. Scrima was in front of me and used his body to block me from falling to the floor, Mindy came to help and they held me up until the attack passed and I was able to get to the bed, I was asleep before the wires were hooked back up to the head harness that feeds the info to the computer. I had one more, uneventful nap, Dr. Scrima wanted to be sure he had enough data because he wasn't sure that what he had would tell him enough so I went the full course of the MSLTs, 5 naps.

About 2 weeks later, Dr. Scrima called with the results, I was then diagnosed with severe narcolepsy and 3 recorded cataplexy attacks. I also have moderate fragmentary myoclonus (restless leg syndrome), very mild sleep apnea only when I sleep on my back and mild bruxism (grinding teeth). Out of 363 minutes of recorded sleep time, I had 73 minutes of awake time, so I was asleep only 79% of the night time testing. I had 9 awakenings greater than 30 seconds (average of 2 per hour) and 98 awakenings less than 30 seconds (average of 21 per hour). Through all that, I had 59 minutes of stage 1 sleep, 178 minutes of stage 2 sleep, 9 minutes of stage 3 sleep, 0 minutes of stage 4 sleep and 39 minutes of stage 5 (REM) sleep. Stages 3 and 4 are the deep, slow wave sleep stages where the body does much of it's healing. With these results, it was no wonder I was so sick all the time. For the MSLTs, I had 4 out of 5 naps with REM and a sleepiness index of 73%, somehow that's figured by how much less than 6 minutes it took to fall asleep during each nap. I was also told that I was dreaming while being hooked up for the overnight Polysomnogram and during 3 of the 5 naps, I was also talking and seemingly awake during those periods, this is what looked suspicious at first on the testing and the reason why 5 naps were needed to make sure of the data. In addition to all this, I had unusual up and down eye movements during REM sleep as well as the normal left to right eye movements.

Sharon's story Sharon is also on the connections page timzebgil@aol.com

One day in late March, 1989, the term narcolepsy forever became a part of my everyday language. I had read of it in my mid-teens, in an Ann Landers column; a woman with narcolepsy wrote about the trials and tribulations of falling asleep uncontrollably, As if that weren't enough, she also experienced cataplexy, the sudden loss of muscle tone, that caused her to fall to the floor repeatedly throughout the day. I remember saying to my mother, "You know when I laugh hard, I say I've 'lost my powers'? Well, what happens to this lady is similar to what happens to my hands and arms." While I had compassion for the writer's affliction, I considered myself fortunate that my problem was "different," minor, and even funny to my family and friends. Little did I know that was my first glimpse into the future.

My first symptom of narcolepsy was cataplexy, beginning at age 7. My younger brother had caused a minor catastrophe beside the table where I was doing homework. Knowing he would be in trouble, he was ready to dodge the arms of my mother. A chase around the table, my brother well in the lead, followed. I laughed so hard it hurt. My brother finally caught (mothers are so clever; she just stopped dead and let him run into her!), I was told to go back to my homework. I could barely pick up the pencil with my limp hand. Gripping it to write was out of the question. This deadness lasted for minutes. (In my mother's version of the story, this was a ploy to get out of my homework.) In my teens, this sensation would occur in my lower arms as well. It continued this way for more than 20 years.

The first recollection I have of daytime sleepiness was in 9th grade accelerated math class. I was an honors student, and math was my best and favorite subject. But to me, the teacher went sooooo slow. It was intolerably boring, I reasoned, and that's why I got sleepy. Although I was always busy with homework, babysitting, playing guitar, giving lessons, delivering newspapers, and leading the 'folk group' that provided music on Sundays at my church, I did get enough sleep. My grades didn't suffer for my sleepiness, and I never even mentioned to my parents that I was having a hard time staying awake in math class. This problem would continue through high school. In my first semester of college, when I did manage to wake up, I routinely fell asleep in my 8 a.m. accounting class (my major!). I learned not to take a class before 10 a.m., after several cups of coffee took effect. Since I lived on campus, I took one or two evening classes, so that there was no need for back-to-back classes. I would often take a nap in the afternoon. I was compensating for my problem, without even realizing it!

After college, it was out into the work world. My first - and only - job was with an international accounting firm in NYC. There was a fair amount of overtime involved in my job during the first two years, but being in NYC was exciting, and the work and people were stimulating enough that I had no problem staying awake at work. I had no problem staying awake on the train during my commute. I used the time to study for the CPA exam My workload increased significantly as I moved up, and there were periods of heavy-duty overtime. Specializing in the tax area, there were deadlines every three months. One Friday in my second year, I went to work, and except for going home twice to shower and change, four of us worked straight through Monday afternoon. That was perhaps the worst, but 60 and 70 hour weeks were common. Still, I loved the work and the clients. I was 100% committed to my career.

I married in 1986, and had my first child in 1988. My division head and I had agreed that my maternity leave was a good opportunity to turn my old clients over to less senior people, and to take on more involved clients when I returned. "Involved," as it turned out, referred more to the time requirement than to the complexity of the work. From August, 1988 to the end of March, 1989, I had deadlines the 15th of every month. I also had an infant, so I couldn't just drop when I got home. I averaged four hours of sleep on the good nights. My sleep became disrupted. By January, I was having bad dreams frequently. One night in mid-March, 89, I experienced sleep paralysis as I was falling asleep. I panicked. "What if I stay this way?" I thought, awake and aware, but unable to even open my eyes or speak. I came out of this state after 30 seconds or so, but it was a warning of what was to come.

For a couple of months, isolated parts of my body had been giving out momentarily: knees, jaw, neck and even back. I didn't understand it, but I also didn't have much time to think about it. I remember it happening when I said something amusing to a coworker. It also happened as I was frantically rushing down the subway steps, knowing that if I missed that train to Penn Station, I would miss my commuter train to Long Island. Luckily, I caught the railing and managed not to tumble down those filthy concrete and steel steps. On Easter Sunday, I had the BIG one. My sister and I were cleaning up after our meal and talking. I tried to pull a fast one on her, she caught me, and we both started laughing. The next thing I knew, my legs started giving out. I leaned onto the counter, my body out of control, moving up and down like a sprung spring, and slowly slipped towards the floor I couldn't talk. It took a few seconds for my sister to realize I wasn't up to my usual antics. She called for our husbands to bring a chair, and they maneuvered me into it. I recovered shortly, only to realize that something serious must be wrong with me.

I was luckier than most. Studies indicate that it has taken up to five different doctors and fourteen years to be properly diagnosed with narcolepsy, once symptoms present. True, I had once seen a GP for low blood pressure (not unusual in narcolepsy) and fatigue. He told me I didn't exercise enough. And I had seen a psychologist once, at the urging of a friend, for the dreams that caused my to yell, scream or laugh in my sleep. He told me it was stress-related, and advised me to practice self-hypnosis. I didn't buy it. I'm an extremely patient person. It takes much more than the stress of my job to get to me. I loved my work. Besides, I the hypnosis was sure to put me to sleep!

I thought my recent muscle problems might have something to do with the anesthesia I had gotten during labor, so I called my obstetrician. He thought it unlikely, suggested perhaps I had a pinched nerve, and referred me to a neurologist. I scheduled an appointment immediately. At the visit, I described these strange symptoms of losing muscle control. I also threw in the few times I had awoken and been completely paralyzed for a short while. He began to ask questions about my sleep quality, daytime sleepiness, dreams, and whether I had had any hallucinations. I told him I had always had intense dreams, always in color, and that I was often sleepy during the day, but it was to be expected, given my work and home commitments. I told him that for years I had difficulty staying awake while driving distances. Diagnosis: narcolepsy! (This was confirmed in a sleep study later on that year.) The good news, he said, was that there were medications to treat these symptoms. I was relieved, and left his office on a lighter note with prescriptions for Imipramine (a tricyclic antidepressant) and Cylert (a wake-promoting medication).

Over the next fourteen months, the doses of these initial meds were increased. Still, I was not getting enough relief to properly carry out my job. In retrospect, I realize that my symptoms were still worsening, but I reached a point where the side effects of these medications far outweighed the benefits. I was switched to Vivactil (another tricyclic) and Dexedrine. Still, my symptoms interfered with my everyday living. My sleep was terribly disrupted. I would wake up after three hours, feeling wide awake. I would get up, only to feel overwhelmingly sleepy within several hours. I would arrive at work feeling so sleepy I couldn't concentrate. I began falling asleep on the train and regularly missing my stop. One Saturday morning, I barely escaped a head-on collision with a fire engine because I was falling asleep behind the wheel. This, with my son was in the back seat! The last straw was the day I got off the train, heading for work, and left my briefcase behind, something I had carried every work day for 9 ½ yrs. I had lost it. After all that hard work and career planning, I had to face facts. My narcolepsy had made it impossible to continue working. Two months later I took a long-term medical leave of absence from my job. Four months later, I was approved for both private disability, followed a year later by the approval for Social Security disability benefits. I have not worked for pay in almost ten years.

My life today is dramatically different from the life I expected to be living. I gave up a lot, but I've also gained much. I've had to learn to live with narcolepsy. I take an afternoon nap every day without fail to ward off sleep attacks. I have been taking Effexor (a new generation antidepressant) for the past six years, which has completely alleviated my cataplexy. I have a new appreciation for being able to climb stairs without the fear of falling, and swim without worrying about drowning. I am now an at-home mother, with two boys ages 12 and 7. Each of them has learning disabilities and difficult behaviors. I often think a higher power gave me these kids to keep me awake! I volunteer at three different schools, which helps me stay in touch with teachers and other adults. I have made an effort to learn as much about narcolepsy as possible. Since signing on to the internet, I've discovered a world of support and information out there, and many really great people who also happen to have narcolepsy. I'll admit, my house would be an excellent Merry Maids training grounds; housework is too boring! I've volunteered for several genetic studies and a spinal tap at Stanford's Center for Narcolepsy (the leader in narcolepsy research). I am currently participating in an FDA drug trial for Xyrem, an investigational drug that has been shown to significantly reduce all symptoms of narcolepsy, most especially cataplexy. I believe that if we want a better life for ourselves, we must be involved. While there is a wide range of functioning among our group, it is important that we do what we can. There's so much to be done in our awake time: volunteering for research projects or drug trials, educating the public on narcolepsy and all sleep disorders, participating in letter-writing campaigns, and helping undiagnosed or newly diagnosed people with narcolepsy to learn about and cope with this disorder.

Katie's Story

I have always had very vivid dreams, & until I was diagnosed with narcolepsy a year ago, I had always thought that this was normal, I knew no different. I know that sounds strange to most people, but when the first dreams that I remember were vivid, & dreams since are vivid, you just assume that's how everyone dreams.
until I was about 8 I would wet the bed, every night. My parents tried everything, no drink after supper, wake me up to go to the bathroom at midnight & 3am, etc. It wasn't until I turned 8, they talked with (I assume a Dr.) & realized that when I slept, that I would go into such a deep sleep, that my brain would not wake my body up, to tell me that I needed to go. After spending a couple of years "training" my body, I no longer wet the bed. Sometimes I wander if this has anything to do with my recent diagnoses, but I really don't know. Life went on, & when I was about 16, I would have these really dizzy spells, that I would feel as if I was going to faint, & for no reason. That is I could have been doing something as easy as reading a book when this feeling would come over me, It was by no means of physical exertion. If I was standing, I had to sit, if I was sitting, I had to lay down. I went to see our family physician about this, & after running the normal blood tests for anemia, diabetes, etc, (which were all normal) he talked to me about having a sleep test done, to see if I may have what he referred to as "Sleeping Epilepsy" I knew what epilepsy was, & told him that I have never had any seizures, or any of those types of symptoms. Doc then told me that I wouldn't with this form, he then asked if I had ever woke up in the middle of the night, sweating, & I had once, recently that I could remember. He told me that this was a symptom. I also told him that I slept in water bed, & perhaps the temperature was just turned up to high, he said no. I went home, told my mother. My mother did not want me to have the test, because she felt that it may have something to do with my diet & eating habits. (I had recently got a job, & must admit, maybe my eating habits weren't so good at that time.)
So we waited to check & see if perhaps this was due to my diet. Strange enough, dizziness went away, & I didn't have the test.
When I was 22, I had recently been divorced with 2 children. I decided I needed a better job, & went to LPN school 40 hours a week, & worked full time too. Every day at school between 1-2pm, I would be writing notes, & "dozing" off at the same time. Of course everyone, plus myself felt that this was due to working 40 hrs, kids, school, etc.
Not long after I graduated LPN school, I was in a horrible car accident, which I received a concussion, & my 6th vertebrae is slightly "out of whack" Not long after the accident I started to notice that when I laughed, my right knee would buckle out from under me. later, both knees, then as time went on, my whole body. during this time I had felt that perhaps it had something to do with my vertebrae that I had injured, & talked with my chiropractor. He said that he had not heard of that happening before, but that I needed to be check for cerebral palsy.
I came home, checked my medical books, & decided that cerebral palsy was not my problem. I talked with my aunt who is a RN, about what was going on, she had no answers for me, not even a clue. About this same time, I had noticed that when I would get ready to go to slept I would be "paralyzed" for a few moments. I even when to the local ER over this, & was told that I must be hyperventilating when I would go to sleep, & sent home. Sometimes during this "paralysis" I would have sworn that hubby had been talking to me, but when I was able to come out of it, he was snoring.
During all this time, my current husband told me I was "crazy' several times, & would repeatedly get upset with me if I laughed in public, & lost control of my body. I kept trying to tell him that I could not help it, but he kept acting as if I could. We lived in a small town of 800 people, & if we were going someplace, I would be asleep before we got to the edge of town. This angered him too. I had trouble driving home from work, so I would take "Viveran" all day. I felt this was probably due to the fact that I would wake up at least 6 times a night, & up to as much as 10. I would sleep when I came home. Tried not to sleep when I came home, so that I could sleep that night. This did not work.
By now my drop attacks have put to the floor more than once, sometimes with no warning, & occurs with all emotions.
I was taking a psychology course, & the current topic was sleeping disorders. when narcolepsy was mentioned, & how many different form of it there was, I decided to do some more checking. Not because I thought that this was my problem, but because I was curious. Upon check the 4 diagnostic symptoms, I realized I had all 4, & called our family Dr. (my childhood doc had long retired) So I explained to him what I thought, & why I had thought this. & that I had not told him before, because I really didn't want someone else to treat me as if I were "crazy". He then referred me to a neurosurgeon, & from there have been diagnosed. My hubby thought I was crazy for going to the DR., & felt it was a waste of time & money to have the tests. I took them anyway. I do not take anything for the drop attacks, & the night spells, but have also realized that these attacks really aren't that bad, as long as I take the Provigil, although they still do happen.
I have now divorced again, in part due to the fact that he would not believe, nor support me before I was diagnosed, although this in itself is not the entire reason for divorce. By the way, for the record, his feeling about this was that, Since this was how he felt before I was diagnosed, & should no longer be an issue.

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