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.
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Glad to read your story! I’ve been struggling around sleep\wakefulness for years (over 15. I do have a sleep hypopnea diagnosis, and other diagnoses such as fibromyalgia that cause fatigue), and, as of today, my neuro has put in for a PSG + MSLT, which I am seriously excited for. I’m not so excited about not being able to take my provigil or ritalin the week prior, though it should be worth it to achieve a proper diagnosis. I have cataplexy, nightmares and night terrors, hypnagogic hallucinations, and go straight to dream (or nightmare) land when napping. Narcolepsy just hadn’t really occurred to me as a cause for all this.
I look forward to keeping up with this instance.
I never really thought about how difficult it must be to get a diagnosis when you have other health issues with similar symptoms. That part you said about napping and going straight into dreamland is a pretty good sign that you are narcoleptic, tho. Good luck with your sleep study!
I was suspecting that I had narcolepsy due to a family history along with my increasing symptoms over the last couple of years. In retrospect I’ve also dealt with bouts of it over my life. My GP referred me to a sleep specialist, and we first ruled out sleep apnea with a home sleep test. After way too many months of waiting I had my PSG+MSLT back in April. I got diagnosed with idiopathic hypersomnia since no NOREMs were hit in the 5 naps. At first it felt great having that validation that, yes, I’m not making this shit up. I was prescribed 200mg modafinil per day with some success. But then the effects started waning after about a month. Even when it did do its job it only worked for 4-5 hours or so before I was back in full-on sleepy land. My doc upped my dose to 400mg/day, then after a couple of weeks the dissociation and borderline psychosis kicked in and I was taken off of it. That was 2 weeks ago and I just had another appointment with sleepy doctor. Now I’m waiting for my new script to be filled: methylphenidate. It’s been a bit of a rough ride to say the least. I know that there’s no cure for this narcolepsy-related condition, but man, it’s made work pretty difficult most of the time these days. No matter what, all I want to do is sleep. I sleep for 8-10 hours per night with no issues. I resist taking naps because it makes no difference whether or not I do, but they can easily be 2-4 hours long. I wake up and all I want to do is go back to sleep. I pump myself full of caffeine every day hoping that this time it’ll make a difference. Driving feels sketchy most mornings, so I’m glad my work commute is only 10-15 mins each way. My derealization symptoms have reduced some in the last week or so but a lot of the time my general sense of where and when I am is skewed. Certain days I’m able to cope with it pretty well, but others I just have to be frustrated and be scared about my general future. /r/narcolepsy was helpful because it helped me realize that I’m not the only one dealing with this crap, so I’m grateful that there’s a community here.
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.
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.
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!
Hello. I’m glad you started this up. /r/Narcolepsy has been my best source of information re: Narcolepsy. I got diagnosed last October after 30+ years of trying to figure out what was going on. At the moment, I’m still getting my Xywav dosage dialed in so I’m not shambling around zombified. I have ADHD and depression along with narcolepsy. I manage my energy with generic dexedrine, kratom and coffee. I’d love to try microdosing psilocybin but I’ll have to wait until I can afford that option.
Glad to see you have someone else here posting.
Welcome. I am glad to see you’re on your way to getting treated. I feel bad for all the people in the Reddit struggling with getting the right meds since I had such good luck with mine. I am trying to get Xywave as a supplement to my Methylphenidate because I still have some problems with sleeping that aren’t being resolved with other meds, which I think is causing some daytime sleepiness. But I’m also at the point of medicating that I can sense the signs of a sleep attack and do things to mitigate it usually. Honestly, my biggest struggle is hot days driving home, so it’s a good thing I have a car that makes sure I stay alert!
As for microdosing, I started growing my own, and the Reddit for it r/mushroomgrowers was so helpful. I believe there’s a mycology community on here, but I haven’t investigated it yet. However, I do know there are quite a few other message boards and TONS of info out there about growing your own. I will say, it’s not easy, but it’s not as hard as you may think.
Ayyyy hi everybody!! I missed the ole narcolepsy community on reddit, glad I found you guys :)))
