Hi Everyone,
I'm new here, but far from new as far as narcolepsy is concerned.
My name is Rhonda, I was diagnosed with narcolepsy when I was 26. I'm now 38. At that time I was falling asleep all over the place, dreaming while talking to people and standing up, not completing tasks at work (and not noticing), and people carried me home from the bar (although I did not drink). I was one of the lucky ones (in the beginning). I told my doctor about what was happening, and right away,she sent me to one of the best sleep neurologists in the country.
When tested, I was told I was rare, even for a narcoleptic; lucky me, I dream 100% when I sleep, which means I'm usually already dreaming before I lay my head on the pillow, and wake up still dreaming. I was also told there was a 100% chance of me developing cataplexy. I was terrified.... He put me on modafinal, even though it was not yet approved by the Canadian health officials - he said it was doing very well in France. So off I went, and for the first couple weeks of being on it, was talking like I was on speed, but then my body adapted. I was also lucky enough, to have a boss that permitted naps, so I was all over them, although it took me 20 minutes to really wake up from my naps, because the dreaming continued for that long.
Before all this, if I look back in hindsight, I can see the symptoms starting when I was 17. I was seeing screaming demon faces in anything with a texture i.e. clouds, wood, tapestry. I had an amazing first year in college (a 98% average), then transferred to university where I developed what I called "sleepy breathing". Not only that, I noticed somehow I was somehow skipping pages in my textbooks and somehow my mind was finding words that would continue the sentence I left off of on another page, so I didn't notice at first, but this phenominom certainly gave the sentences a different meaning. Ha ha! I was also falling asleep whenever I sat down to read. The biggest thing that stood out, was I was teaching people the material, but failing the quizzes and not doing very well on the exams. That's when I knew something was wrong.
So what did I do? I went to see a counselor, and told him something was wrong, describing all this. What did he do? He gave me an IQ test, and said I was average, although my spacial abilities were way above average. Frustrated I didn't argue that I knew the answers to the questions I said I didn't know, because in the moment the answers just weren't there.
Eventually I left university. After dropping out of so many classes and deferring so many papers, I was even more frustrated. I needed 3 classes to get my degree. I try correspondence, but I never did finish.
All this time, my chocolate addiction was growing, I was eating anywhere from 6 to 10 chocolate bars a day. I've now curbed that down to one.
So I worked for few years and found a new job, where a year later, as I told you, I was falling asleep.
Fast forward a 4 years and I had moved across the country. That was when I had my first and only major cataplectic attack. Laying there, I knew what was happening, so I made the decision to wait and not panic. I found a doctor who sent me to a neurologist, who had only ever read about narcolepsy. I felt like a guinea pig to him - he wanted to see if it was epilepsy, an if I had sleep apnea (the two things he works with the most). Dude! I have been tested and have narcolepsy, get with the program! Grrr! He gave me a number to call to make an appointment to get tested, and when I called, no one spoke English, only French, and since I was just learning, I couldn't understand, and in all of my confusion and stress, wa having more narcoleptic attacks, and confused the words Tuesday and Thursday, and well, missed my appointment. Modafinal wasn't covered on the provncial drug plan, and when I asked them to, they said I could use the 40 year old drugs that had a history of severe side effects that was on the list instead. Then I moved a few blocks away, but because I didn't live in the same neighbourhood, I was no longer aloud to use my doctor (apparently it was a community clicic). I haven't had a doctor since.
So I changed my lifestyle, slowed down my social life, learnt about ways to deal with stress, learnt how to listen to my body, and learnt about how diet effects me. Spring and fall weather are hard to deal with, not quite warm, chilly days trigger my narcolepsy because it effects my core temperature, but other than that, I now only have narcoleptic attacks every month and a half or so, and because I'm listening to my body the cataplexy is medium-mild and only happens about every 3 months. And now I make a living teaching other people to listen to there bodies and face their fears, even if they aren't so sensitive as me. So something good has come out of it.
This is long! Sorry about that!
Rhonda
