The original post that I wrote this comment response to was someone posting about how they’d not had success with Modafinil and they were very discouraged, questioning their options.
The person had been diagnosed recently, back in July, and the way they came off was as though they were at the end of the line, of what medications are available.
My response is long, I end up doing this a lot because well, so much is hardly if at all ever really presented and/or mentioned, and so much that is commonly presented is shallow, it is oversimplified messaging that does not tell into the broader reality out there of both the disorder, nor of the options that exist.
There are a lot of meds that get prescribed to people with narcolepsy. The disease is not typical in how generally most disorders will benefit from one or another medication, across most patients; rather there are handfuls of different medications, types of medications at that used to try and treat narcolepsy, while nothing has yet actually been shown to work across most all patients.
There is a common pattern of people with narcolepsy (PWN) having to juggle from one med to another (even back and forth over time), some take multiple daytime meds, some take nighttime meds, some take both, some over time juggle back and forth taking tolerance breaks, some like myself have never found any of them actually benefit them and/or actually find ourself much worse off when on them (either not tolerating and/or benefiting).
We will see how the new Orexin Agonists Overporexton/Orzeyful and soon others will be getting through the clinical trials and potentially released, the hype is that these will be the best thing available, on the table for a PWN. PWN have been the testers and targets of this new medication as it was discovered the Orexin (which is not simple – it has taken ~30 years) is very much at the root of the disease and no med currently prescribed is actually what so ever directly working on that underlying root matter.
Bare in mind too that the ‘sleep disorder’ hallmark element of (type 1, especially) narcolepsy is only the acknowledged/presented/familiar part, there is so so much more going on across not just neurologically but across the body systems. It’s crazy how little ‘yet,’ is presented up-front-like and even is at all commonly familiar to most doctors out there when it comes to the disease – in fact no specialists sort is guaranteed to have studied or learned much of anything when it comes to the disease, 3 paragraphs of required reading material in med schools for common doctors, within the one and a half hour spent on all of sleep medicine over the 4 years…
Many doctors learn about the drugs they prescribe, more so than the actual disorder and not all doctors can prescribe all of the narcolepsy medications – often they won’t even mention that there are other drugs out there, when they’re not the one’s able to prescribe such, leaving patients in the dark with a label that essentially leaves the patient within a narrow box.
It is very easy to delve into what has been for around 3 decades now, what for the initial decade of, was referred to as ‘the infancy of understanding into narcolepsy.’ Such basically began in the late 90’s with the discovery of a giant lack of Orexin/Hypocretin in the Hypothalamus, thanks to research into dogs with cataplexy then analyzing brain’s of deceased humans who had narcolepsy with cataplexy. The medical literature, science around narcolepsy and orexin has come a long way, and by learning just how much more there actually/absolutely is to the disease going on, and at play, neurologic systemic dysfunction is not just dysfunctional REM – really sheds a lot of insight and clarity into the lived experience, which is far from actually always even taken into consideration while the science in labs is being researched (I digress but am simply being ‘real’)…
It is expected that these new Agonists will become over the next decade blockbu$ter medications used across especially psychological matter from ADHD, depression, mood disorders, anxiety and more, to things like sleep apnea, addiction prevention/recovery, potentially weight loss (though that has not appeared to be the case as much as it was expected to be), etc.
That may have been a lot you aren’t trying to read and/or hear.
Personally, as like I said no med has benefited me and I will say I’ve not been able to try the Oxybate’s (nighttime med) due to a comorbidity respiratory matter that has also been un-treat-able. Lifestyle adjustments/adaptations over time, combined in with learning about both the science and others’ lived experiences has been pivotal to my survival. I struggle very much but compared to where I once was and the struggles I dealt with for well over a decade, which completely altered my life dramatically due to harsh devastating impacts, without the clarity into what that invisible puzzle is – rather than being exactly that as it once was for decades – allowed me to figure out what specific things, adjustments along with adaptations, work helping improve my overall balance of health which directly plays into the severity extents of the core symptoms of the disease. It ain’t easy, it’s walking a fine line, tight rope, with giant cliffs and consequences, it’s hard on other people close to and/or around me in that I must live in a peculiar way, in-particular to a lot, I cannot necessary do what all many manage to do in what are expected ways across most people or rather culture and society norms…
Hope you can find something that helps you, to each their own, there is a path that will work for everyone though we must all be careful with expectations and most importantly accepting, while being familiar with certain limitations and boundaries can be a huge piece of managing to get by, perhaps a bit better.
Enter the rabbit hole that I exist within:
I’ve been doing this sort of response and interaction with people – anonymously – online since 2008.
Initially it was me asking questions, explaining my situation, trying to make sense of so much that was not even on my radar of the map of what all was absolutely on the table, at play. The interactions with others taught me so much, the only reason I can discuss the subject and lived experience as I do, going far beyond just my own while I try very hard to not purely speak at and/or of my own, is because it’s been nearly two decades of doing this almost daily, to some extents. Often times, if not each time, there is some extent of my repeating something and in time that which I say has evolved, I’ve reworded, added to, taken away, filtered, expanded, reframed and/or recalculated the responses.
This is ‘Subject Matter Expertise’ developed from my lifetime of living with the disease, combined with being deeply immersed in both the medical literature/science and different online patient communities.
As I mention within the post, doctors are not always as familiar with neither the science into the disorder nor the lived experience, as they are with what are the medications – which is exactly what the doctors really are there for, their role is to prescribe ‘treatments’ which in today’s world equates mostly to ‘medications.’
Doctors really are not there to necessarily spend time actually educating the patient to the lived experience nor other options that should be part of the ‘treatments’ equation but are difficult because, like discussing the lived experience, there’s elements that are incredibly touchy and involve vulnerabilities to the ‘comfort-level’ of the person (patient to a doctor).
Note – please do not read that as an attack on any specific doctor, I am speaking openly, up-front-ly, honestly at what is the reality out there. There definitely are great doctors who do go out of their way to spend the necessary time, take the necessary steps to educate their patients and I will add that the few very great doctors who do such will often also educate themselves to further extents than many – this disease is not simple to understand, it takes devotion, time, interest, an open-expansive-mind, along with a willingness to recognize, comprehend, and acknowledge a lot that is difficult to piece together.
I do get it there is a reason, and/or there are actually many reasons, that there exist the common messaging as it is, I am blunt and refer to it as oversimplified and even often also, filtered, because that is how not just how I see such but have absolutely experienced such in how things go, being presented out there.
I’ve stepped into and participated within it, I try to do what I can to help others, not as a doctor, not giving medical advice, rather offering perspective, perhaps breakdowns into both experiences and observations around what not.
For now, I am still engaged, I am always trying to keep up to date and immersed, though I am also feeling constrained by just how little reach that I manage to have, outside of anonymously in online patient communities.
Really, I want to discuss and offer what not that I can into depths that are avoided, it seems, to help broaden the conversations, to bring further insights and clarity to helping others, to go away from leaving an incredibly complex puzzle invisible to so many, to combat the stigma along with marginalization and ruthless tainted stereotype that impacts every PWN in absolute real harsh ways.
For a long while I’ve considered myself an ‘independent advocate’ and sometimes it feels like I am almost some sort of ‘activist’ just in that many seem unwilling to speak outside of those common messages and filtered lines that exist in the mainstream.
I’ve failed at so many things, hopefully I’ve along the way learned some things out of such, I know that I have, but being real it is very hard and discouraging, defeating really but I do know if nothing else I’ve documented my perspective and I’ve helped a lot of people out there, people who I’ll never know, meet or have any awareness of.
This disease is something so fierce for so many, while for some it is not all that much.
The giant pie that revolves around it, as gniche as it is, is plentiful though few hold hard to hoard the gains of that pie, while many out there will give and give to receive nothing, not even crumbs of that pie.
While simultaneously keeping the broader, bigger, deeper picture of the reality that exist out there, limited and simplistic because why would you touch on something complicated, burdening or negative – regardless of well, it being exactly such…
I appreciate all other persons out there trying to help others, however they choose to go about it. I don’t want to come off like I’m attacking anyone, really it is a systemic framework (dysfunction), a mentality around profit, and matters far beyond any single person’s fault and/or single execution, it is just how things are in where we are at; and it is in my opinion quite gross.
What am I saying in this, I know that I have deep ‘Subject Matter Expertise.’
I don’t know where I belong, I am a loner, but I must do what I can to try and survive.
I must somehow be able to make a living and sustain myself.
Currently, the walls are closing in and I do not have an income, I do not really know what to do.
Attempt after attempt to figure out how I can do what I do, what I am capable of, what I am passionate towards, while I live with not just the type 1 narcolepsy that I largely focus on but a wicked combination of comorbidities, too has been really hard and also expensive.
Appreciation only goes so far while I could use real help, guidance, a hand, and support.
Hopefully something will come my way, some door will open, and/or I’ll succeed in one of my ventures – this life has been a roller-coaster and I’ve gone down a very winding, bumpy, narrow path, the only one I’ve been able to weed out enough to manage.
Disclaimer: The information provided in this article is intended for informational and educational purposes only. Seek a qualified medical professional with expertise in Narcolepsy for diagnosis or treatment. I am not a medical professional.
Created by: Solomon Briggs
(aka Narcoplexic)
October 20th, 2026
A post, comment response that I left someone (anonymous) recently. And some words about the rabbit hole that I exist within. © 2026 by Solomon Briggs is licensed under CC BY-NC-ND 4.0
To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/4.0/
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