I’ll start. I wasn’t diagnosed until I was 30, triggered by me crashing my car really bad (no one was hurt! and only my car damaged.). I spent 11 years in college because of my Narcolepsy and depression, the latter only diagnosed at the tail end of that stint. I got reprimanded at two jobs for this - one of them, it was part of my dismissal. However, this was right when I found out I had narcolepsy so luckily the job took pity on me and parted ways while giving me a good reference. That lead me to the job I have had the last 5 years, that I love (mostly)!

**So here’s the story of my diagnosis:

I had a long commute, but I was ashamed to tell my boyfriend that I was falling asleep while I was driving. Plus I had done it for years with only a few accidents! Until this one, it was bad - I hit a median at highway speeds in moderate traffic, and my car (which still had many years on it) was toast. It was still lucky because nothing and no one but my poor Chevy Bolt was injured. This was my wake up call, as it were.

My boyfriend was mad, but when I told him about what I was experiencing, and how no amount of caffeine will fix it, he was worried - about me, and about my job. He was problem solving, but I thought I already knew the answer, so I said, “I think I have narcolepsy.” He scoffed, “You don’t have narcolepsy, you don’t fall asleep randomly!” I said, “I know but it’s like that, just only during certain times! Maybe I have pre-narcolepsy or something?” He asked me why I thought that, so I showed him this video (ugh, I can’t find it, stupid algorithms!) of a girl in her room filming herself doing yoga or gymnastics, while having a sleep attack. She explains in text what is happening to her at that time, and it strikes a chord - I’ve experienced all these things! Boyfriend is convinced, luckily I have good insurance, so I get all signed up for a sleep test.

I did the full test - stay overnight to look for sleep apnea first, then the day-long “don’t take naps until I tell you to” test. Bad news is I failed that part - I fell asleep while reading and trying to color - but good news is I passed the narcolepsy affirmative test. My sleep doctor - an old man - was surprised at my low sleep latency numbers (even with naps! I didn’t tell him that). And then he asked if, whenever I laugh, tell a joke, or have extreme emotions, if my joints, like my knees or arms, “gave way”, and I was like “uh…yeah, I do! I was wondering what that was.” and he said “Cataplexy” and I was like “Fix me with Medicine!” and he was like “Sure!”

I went up the doses of Methylphenidate until I felt pretty good about it, and then stopped on 52mg. It has worked for me since, but I was the kind of narcoleptic who, not knowing she was narcoleptic, had really bad habits for a narcoleptic - really bad sleep hygiene, overweight, bad diet, sedentary lifestyle. When I changed those things around, I recently decided to take the dose down to 36mg. I am also microdosing psilocybin, which I think also helps.

  • @PandanticOPM
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    21 year ago

    Methylphenidate worked for me. I take ER 36mg ER (extended release - one pill for the whole day), but I was on 52mg ER before and it gave me anxiety. I’ve been trying to get on a non-amphetamine narcolepsy medicine, but my insurance company keeps denying my claim. >__<

    FYI, there is a methylphenidate shortage going on right now. I had to switch pharmacies because my two main ones couldn’t fill my methylphenidate. If you’re having trouble with that, look for smaller chains, or non-chains for your Rx refills (Medicap is one where I live).

    Glad to have you here! I really love the validation that other people sharing their experiences gives. And hopefully we’re able to help each other out too.

    • @BuckWylde
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      21 year ago

      I just popped my first methylphenidate about 20 minutes ago. It only took an extra day or so to get the prescription filled, so not too bad. I hope it gives me at least a little bit of respite.

      • @PandanticOPM
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        11 year ago

        Glad to hear it, but if it doesn’t work, there are other options. I got lucky and methylphenidate worked for me first try. Hope you get lucky too!