#now if i get a narcolepsy diagnosis in a few months the first thing i'm doing is calling my brother and saying

[fxa]

got my sleep study results. no diagnosis yet, got a second sleep study and an MSLT scheduled for july. the only thing i'm interested in right now is that the sleep study found i fall asleep within 3 minutes on average????? like holy shit that is SO fast. i never could relate to people saying they count sheep or imagine an empty white room to induce sleep, but i thought i simply fell asleep easily, not that it was basically instantly compared to normal people. threeeeee minute average. dude i close my eyes and i'm checking OUTTTT of consciousness. my eyes shut and i'm unconscious faster than a twister heading for an elementary school. omg. i guess i never realized because it's not like i lie awake WAITING to fall asleep. i start dreaming within a few seconds of closing my eyes but before i'm asleep so i get absolutely zero time to sit there and think "yep i'm still awake huh" lol

[samtheflamingomain]

prognosis: fucked

It's been 4 months since I had a drink. My boss wins best joke with "Congrats, let me buy you a shot!"

I've heard that the TL;DRs are popular, so here you are: I've done everything right since rehab, lost 45 lbs, and my fatigue has only gotten worse to the point I'm getting memory loss, and a new diagnosis of Type 2 Narcolepsy. It's incurable and untreatable. I will never wake up feeling awake ever again. I'll probably be unable to work at all within the next few years. No cheery ending, sorry.

Now for those with 5-10 minutes to kill, I'd like to whine a bit.

When I was in rehab, I decided to go against the very solid and science-backed advice that says "don't try to change everything all at once, just focus on sobriety at first" and decided it was time to lose weight, eat better, meditate, exercise and save money all at once.

Well, slap my bald head and call me Jeff Bezos, cuz I'm in the 0.00001% of people who decided to do that and did it successfully.

Obviously it's an ongoing journey, but as of today, I'm as physically and mentally healthy as I've ever been, except for one thing: my fatigue.

Other than these excellent improvements, the only thing that has changed for me in terms of medication is a slow increase in the amount of Adderall I'm being prescribed, without having ADHD, due to a lethal combination of "my psychiatrist is out of ideas, but also won't listen to me".

I did a sleep study a year ago, and it came back "normal", so they just slapped me with a Chronic Fatigue Syndrome label and told me to go fuck myself, it's incurable and barely treatable.

But "barely" was always better than "un(treatable)". Which is what my new diagnosis, Type 2 Narcolepsy, is. It's very new, and the only treatment was approved in the States this year. Adderall and its friends like Ritalin and even actual meth don't work on this kind of fatigue, thus why it hasn't helped me. It also goes by "idiopathic hypersomnia" - "excessive sleep" (hyper-somnia) "without explanation" (idio-pathic).

But the reason my doctor changed the diagnosis isn't because it really matters, but because, despite being on meth-lite, despite all the great work I've been doing, I'm getting worse.

For a very long time, I was stable. Exhausted from the minute I was awake till the minute I fell asleep, every single day, for 7 years. And while this sounds exactly like what Chronic Fatigue Syndrome should be, CFS actually comes with a lot more problems that I don't have, which has always made me question it as my "real" diagnosis.

N2's criteria are exhaustion, sleeping more than 10h/night, and what appears to be a normal sleep study, but when examined closer, involves falling asleep in 12 minutes or less.

But also, in a lot of those with N2, there's a symptom called "sleep drunkenness" that, compared to a control group, a group with CFS, and a group with N2, is unique to N2. And that symptom presenting was enough evidence for my doctor to change my diagnosis.

Sleep drunkenness, named by a scientist who has clearly never been drunk, is characterized as having brain fog, moving slowly, a feeling of heaviness, and in some cases memory loss, when you first wake up. On the surface, I'd understand why some people would read that and say "that's just me before my morning coffee". But this is different. You feel confused and lost, you lose your trains of thought almost instantly. It's the odd combination of feeling like you're just about to fall asleep, but with everything you do, you snap awake, only to repeat over and over.

For most people with N2, this symptom lasts about 30m to an hour. I'm lucky at about 45m. I've always had this symptom, but until a few years ago, it didn't have a name. So when I was given some websites to read by my doctor, I knew this was it. It described me to a T.

And it explains the ways I've been getting worse - the sleep drunkenness lasting longer, sleeping closer to 13h than my usual 10-11. And it explains how, 5 times in the past 2 weeks, I've woken up at noon to find a lukewarm pot of coffee already brewed.

I've been waking up, doing the mindless task of making a pot of coffee, going back to bed, waking up again and legitimately thinking my roommates kept doing it for me to be nice. Only on the 5th time did I realize it had been me all along. And when you tell a doctor you're getting memory loss, they take you seriously. Got on the waitlist for a neurologist, but it's more due diligence than the idea of one being able to help me.

I thought CFS was a death sentence, but no, it does in fact get so much worse. Despite being very under-studied and not widely-understood, CFS has been in the medical books since the 80s. Narcolepsy wasn't separated into 2 types until 2018, and the first "long-term" study wasn't complete until 2020.

I read almost every study on N2 I could find - and it took less than 2 hours. There's just nothing known about it besides the fact that thus far, nobody has ever gotten better. Most get worse.

The Narcolepsy you're likely vaguely familiar with involves muscle paralysis that makes you fall asleep and fall over, called cataplexy. It's pretty much unique to Narcolepsy Type 1 and makes it easy to diagnose. N2 has no cataplexy. They don't even know if it actually has anything to do with N1 at all, since none of its drugs work on N2. They're literally at the point of just naming the damn thing.

It'll be 50 years before they find a cure, if they ever do. It's rare, so there's little incentive to study it and make drugs for it.

Despite having tried well over 50 drugs, done rTMS, ECT, every kind of therapy, inpatient rehab, quit drinking, lost weight... I'm just getting worse. And there's nothing I can do anymore. Nothing left to try.

Leave it to me to have the rarest form of a disease in the field of medicine even less-understood than mental illness. We still don't even know why we need to sleep on a physical level. We can map every neuron, every blood vessel, but this one area has completely eluded us. And because there's been zero progress in that area of science in decades, I have no hope of ever getting better without a literal medical miracle.

Stay Greater.