How it all began-High School and Being Diagnosed

I got through my teens uneventfully health wise. During my late teens and early 20's I partied a lot, lots of late nights which is what I attributed my sleepiness to for a long time. I should be grateful I am alive, because I remember many times I should not have been driving, I definitely did the "auto pilot" thing. When you realize you are home, but don't remember getting there. VERY DANGEROUS!

During high school I slept through a lot of classes. I remember I could usually make it until my third class before dozing. For a while I tried taking what we called "white cross", which was an asthma medication you could get at headshops or drug stores. They would make me hyper for a couple of hours and then I would crash. I would get home from school and watch Opera and then usually sleep until dinner and then watch some tv and go to bed. Usually I did my homework during the class before it was due, but this seemed to be what everyone did, I actually was not a bad student, but not spectacular. My teachers always liked me and I only remember one teacher making a big deal about me sleeping, because we were teenagers, we all slept through high school.

Anyway, after I graduated high school I stayed at home and went to a local community college. That is when I really started sleeping through classes. In retrospect I remember doing the "falling thing", cataplexy, a few times during high school, but it always seemed to be when something was really funny, and mostly involved some alcohol so it wasn't so obvious. I was into alternative music and dark clothes. Anyway I had a hippy primary care doctor who wore Birkenstock's with socks. Every time I saw her she would ask me twenty questions all leading to, “was I depressed?” This was because I would complain about being tired. After being diagnosed I realized I was depressed because I was tired all the time, I wasn’t tired all the time because I was depressed. My parents tried to blame me being tired on me becoming a vegetarian at age 15, but my hippy doctor didn't think this was the reason. Finally one day I was there for a typical flu or something and she asked if there was anything else wrong. For some reason I mentioned the falling thing, I think honestly I hadn't mentioned it before then because I had done some experimenting with mind altering substances and was afraid it was an after effect. Anyway, I remember her face when the words came out of my mouth, she was completely still. Then she said anything else, anything at all? And I thought about it and told her about the crazy evil cat that I thought was living in my bedroom and how I would feel it breathing on my neck and walking on my bed and I would wake up but couldn't move to turn the light on. Without saying a word she got up and walked out of the room. She came back with a huge smile on her face and a big medical book. She had it opened to the section on Narcolepsy. I left the office with a referral to a Pulmonologist and with a sense of glee. I remember running home before going to work just so I could happily tell my mom, "I can take a pill and feel better every day." My mother was not as gleeful when I told her my doctor thought I had narcolepsy. She was confused and worried.

She sent me to a pulmonologist because some of them treat people with narcolepsy and other sleep disorders like sleep apnea. I had the sleep study done. My parents were so cute, they bought me a handheld sony game unit to give me something to do. They definitely decided I didn't have sleep apnea so I had to stay for the entire day to do the nap thing. It was done at a small hospital and they were all really friendly and they let me go look at all the computers that showed each of my leg movements, eye twitches, and REM periods. It was pretty interesting. The nurses had to keep coming in to wake me up in between the naps because they could watch me on the camera and see me nodding off while watching tv or playing games. I fell asleep within 5 minutes each time and went into REM the first nap or so, which doesn't normally happen when you take a 20 minute nap. So the sleep study concluded that I had narcolepsy. After a while of being treated by the pulmonologist I switched to a Neurologist, basically because I was mad that he mentioned in front of my mom once that I was on birth control pills, which she did not know prior to that. My mom kept to her theory of parenting; on the ride home she didn't even mention it, which is her way, the denial method of parenting. But that was fine with me. Oh and I started smoking cigarettes at about 18, my parents didn't find out about that for years, they both smoke so they didn't notice. I hated smoking for ever and would bug my friends and parents about quitting for a long time; I blame me starting to smoke on trying to stay awake driving, which I think did play a part in it.

When I switched to a Neurologist he had me get an MRI to rule out a tumor, and he gave me some kind of blood test which I tested positive for, not sure exactly what it was, but it is something that everyone with narcolepsy tests positive for but not everyone that tests positive has narcolepsy? I have been seeing a neurologist since.

Here is another good stopping point, and it is getting late so I am off to bed.

A Sleepy Girl

How it all began-birth through adolescents

This may be boring, but I am going to give a brief narrative of my birth, childhood, etc. Mainly to point out that it was pretty typical.
But before I get to that, this is funny, and typical of my evenings of late. I got home from work at about 6:30pm, very excited to start reading the sixth Harry Potter book. First I had to scoop the cat litter, cover some outdoor plants, and make myself a bowl of soup. I got to page 16 and fell asleep on the couch. I slept "normally" for I don't know how long and then towards 8pm I started trying to wake up. I am never really sure how long these episodes last. But I just could not wake myself up. For what seems like a long time I even had my eyes open and was staring at the coffee table, on the coffee table is a strange stuffed dog that my cats use as a bed. I was hallucinating that it was moving, just slightly as if one of my cats was under it wiggling around. When I finally woke up all three cats were asleep around me on the couch. I used to be afraid to open my nightstand drawer because it was at my eye level so when I would have one of these episodes, sleep paralysis, it is what I would stare at, and I would hallucinate roach antennae coming out of the top of the drawer. No matter how many times I have a sleep paralysis attack, sometimes I still have to reason with myself when I wake up to convince myself it was just a hallucination. Mostly it is frustrating because I often just sit and think about how much stuff I have to do, but can't wake myself up to do it all.

A doctor once explained many of the symptoms of narcolepsy as a problem with my mind/body going into REM at the wrong times. He said that during REM our bodies are paralyzed so we don't act out our dreams and injure ourselves. He said the sleep paralysis thing is my mind snapping out of REM before my body. This was helpful because at the time I swore I was having seizures in my sleep because I would "wake up" and be staring at the spot where the ceiling meets the wall and the line would be vibrating, so I thought I was having a seizure and that my body was actually moving. His explanation made me realize that my eyes were just stuck in "rapid eye movement" mode and that I was not having a seizure.

Back to how it all began. I was born in New York. I remember hearing that during delivery my umbilical cord got wrapped around my neck and at one point they blind folded my poor mom, I can' t imagine them doing that today, it would have freaked me out even more. Anyway, my mom says it was a very long delivery, but no major problems. I was very small, 5 pounds 6 ounces and was in an incubator for a bit. My mother smoked cigarettes while pregnant. I guess I was a pretty healthy baby in general. The only other infant event was that my grandmother fell down a flight of stairs while holding me. My mother was at the bottom of the stairs and couldn't do anything but sit on the bottom step to break her fall. She said it was awful because I didn't make a sound. When unwrapped the blankets I was fine, not even a scrape.
When I was 8 years old we moved to Florida, and I have lived here ever since. In general I was pretty healthy, and if you ask my family I was hyper and never stopped talking from the day I started! I was a very skinny child. I remember my doctors encouraging my mom to give me shakes to gain weight. It was like I had a parasite or something, because I ate and ate, but was very skinny. I also seem to remember having strep throat a lot. My mom tried to get my tonsils taken out, but they wouldn't do it without 10 reported cases in a year. Anyway I remember taking antibiotics a lot as a kid. So much that now I have to take the really strong ones that come in the bubble packs. I seem to have built up a resistance.
The only other odd thing was I remember sometime between the age of maybe 10 and 14 years old I had to get one of my immune shots again because they apparently realized I had gotten it too early the first time, before age two. I have done some reading on antibiotics and immunization shots and it seems there is a correlation between various health issues and the timing of immunizations and antibiotics. It seems they are definitely telling doctors not to give immunizations if the child is on antibiotics or within a certain time period. I remember being on antibiotics so much that it is likely that I could have been on them or had been on recently when I got that immune shot again.

Well here is a good breaking point. I will continue with high school and on later. I have been thinking about future posts and gathering info from other sites and have some ideas for future posts to include: Various medicaitons, sex and narcolepsy, funny cataplexy stories, links to videos on narcolepsy, marriage and narcolepsy, divorce and narcolepsy, work settings and narcolepsy, socializing and narcolepsy, life adjustments that may/may not help, links to other sites, conference info, etc. So keep coming back!
A Sleepy Girl

Welcome to my sleepy world

Hello, thanks for stopping by. I am starting this blog basically to vent a lot of my frustrations with Narcolepsy. But I hope that it may be helpful, informative, and entertaining as well. Let's face it on the surface Narcolepsy is funny. Even just the word itself is funny:

Nar-co-lep-sy.

The symptoms, particularly cataplexy, have provided my friends with hours of amusement. Once I even won $5 on a bet that I could not really fall asleep in under five minutes. Narcolepsy also gave me an excuse to sleep through half of my college classes, especially the ones at 7am (I managed to graduate with honors, but it was in something that was known as one of the easiest degrees around). My friends used to say I learned through osmosis, sleeping on all my books. Often I would wake up to find they had written funny things on my notepads while I slept through a lecture. My notes always trailed off the page as I got sleepier and sleepier. At the time, and I'm sure even more so now, I was able to buy the professors lecture notes at the copy place down the street. I'm really not sure why they made us go at all.

But this is just the intro post, I'll get into more detail on all of these topics as I go.
Enjoy, and please post comments!