My name's Rhonda, I'm 40, and was diagnosed 14 years ago.
I'm not having a good day, so please forgive any spelling mistakes or if things seem a bit messed up.....
1. How did you feel when you first got your narcolepsy diagnosis?
I was terrified, and relieved. Relieved because I had an answer, and terrified because I was told I had a 100% chance of developing cataplexy.
2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy?
I first went to a counselor at my university when I was 21, because I was teaching everyone else the courses, yet barely passing them, because I got major brain block whenever I tried to take a test, and noticed something in my brain was messing with the word order of what I was reading when studying, which messed with the meaning. His response was to give me an IQ test, and tell me I'm fine, and I should be getting the grades I was getting, despite my not being able to answer questions I knew I knew the answer to ex. I had a minor in Religious studies and grew up Catholic, yet could not tell him what the "Book of Genesis" was about.
It wasn't until 5 years later (?) that I began falling "asleep" at work, even while talking to people, and wasn't completing tasks, that I mentioned it to my doctor. She got me into see a sleep neurologist immediately.
I say, "asleep" because it's not really sleeping the way other people sleep. It's more like being drugged and passing out. So it really pisses me off when doctors use the word "sleepy" to describe one of the symptoms. It's not sleepy at all, it's drugged.
3. What is your current treatment plan like?
I'm not on any medication at the moment, and haven't been for about 10 years. A lifestyle change helped dramatically. So I only socialize a maximum of twice per week, eat whole, mostly organic, foods, never set an alarm, sleep when I'm tired, eat when I'm hungry, work for myself, creating a fairly slow paced day, spend a lot of time in nature, do energy work (I do this for a living) on myself, and stop if I notice any symptoms whatsoever, no matter what I'm doing. And since a major trigger for me is a low core body temperature, I make sure I never get that 'cold-to-the-bone' feeling.
I was on Modafinal years ago, and it kept me from sleeping, but there was a shadow self in me that I could feel was sleeping. It felt fake, and I was more exhausted being kept awake in the end. I stopped more because the drug plan I'm on refused to cover Modafinal and insisted on my taking 40 year old drugs that have ten times the side effects, despite Modafinal already being proven to "work" for me.
4. What is the hardest part of dealing with narcolepsy?
Dealing with my ego, really, especially if a particularly bad day happens following an exceptional week, or even month where I was productive like "normal people". On the other hand, when I'm not paralyzed, I appreciate my body as though a miracle has happened, and when my brain is working at what feels like lightening speed, compared to brain-fog narcoleptic speed, and is clear, I totally take advantage.
Money can be a problem, because I can't work full time for a long time, otherwise I will crash for weeks at a time, having ongoing cataplectic attacks mixed with heavy narcoleptic attacks continually the whole time. If I pace myself, and know my limits, I won't experience this, but I won't make as much money either. I choose the latter.
Really though, now that I think about it, it interferes with me being able to pursue my real dreams. In interferes with me living the life I know others would take for granted.