A pharmaceutical company in Denmark has developed "brain-accessible orexin peptides" to treat Narcolepsy 1.

Gubra announces updates to its pipeline. Internally developed brain-accessible orexin peptides for the treatment of narcolepsy, now ready for partnering.

Peptides are strings of amino acids. Amino acids build proteins in the body, but these strings aren't large enough to form proteins.

Lab-made peptides can be used to mimic some peptides found naturally in the body.

So, the upshot of this--and why it is such FANTASTIC news--is that they are going to be able to essentially put orexin in your brain--you know, where it's supposed to be to begin with.

It is too early to get overly excited. There's still getting it to market to consider, as well as getting it approved by the FDA for sale in the U.S. And then, naturally, how much it will cost and whether or not insurance will cover it.

But it's a start.

Also, Jazz Pharmaceuticals is developing an orexin agonist refered to as DSP-0187.

In its First Quarter 2023 Financial Results and Affirms 2023 Financial Guidance announcement, Jazz pharmaceuticals includes the following information under the Key Pipeline Highlights section of the announcement:

--JZP441, is a potent, highly selective oral orexin-2 receptor agonist designed to activate orexin signaling with the potential to be applicable in the treatment of narcolepsy, IH and other sleep disorders.

--A Phase 1 development program to evaluate safety, tolerability, pharmacokinetics and pharmacodynamics of JZP441 in sleep-deprived healthy volunteers is ongoing.

--The Company expects initial proof of concept in healthy volunteers in 2023.

An agonist, by the way, is a drug or substance that binds to a receptor inside a cell or on its surface and causes the same action as the substance that normally binds to the receptor.

Both of these developments are potentially life-changing for narcoleptics. And for the people with debilitating narcolepsy, This could literally give some of us back our lives.

Would anyone object to copying posts over from /r/Narcolepsy?

It would be great to have more content here for people doing a search for "narcolepsy" here and only finding the one thread.

If this is okay, I'll try to move some stuff over (with due credit given) as I can. I'm useless a fair amount of the time, but I'd be happy to put in the effort when I'm able.

Lemme know what you think.

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.