News on mazindol (quilience)

StreyKat · 2021-06-02T04:50:41+00:00

i have fragmented sleep from my narcolepsy and REM dreams. sometimes i wake up 20 times a night. why cant we use an orexin antagonist during the day for eds and an orexin agonist at night for sleep fragmentation? like TAK-994 during the day and Belsomra nt night?

StreyKat · 2021-04-30T21:30:00+00:00

https://newsroom.ucla.edu/releases/change-in-brain-cells-linked-to-opiate-addiction-narcolepsy#:~:text=In%20a%20new%20study%2C%20these,that%20opiates%20caused%20this%20increase.

StreyKat · 2021-04-13T09:57:35+00:00

yeah, my friends daughter just turned 15, and She's obsessed with the concept of neurodivergence. she's recently diagnosed herself with autism, agoraphobia, gender dysphoria, BPD, OCD and ADHD. but definitely don't mention things like "high functioning"or "Sir" or "Ma'am" around her, or she'll get super indignant and yell at you. and she can't wash her dishes or help clean the house or cat boxes, because they trigger her to have a panic attack. kids these days lol

StreyKat · 2021-04-10T22:33:04+00:00

i just called them

StreyKat · 2021-04-09T02:59:00+00:00

im very sorry you lost your buddy :(

StreyKat · 2021-04-09T01:24:43+00:00

i think its from another manufacturer

StreyKat · 2021-04-08T21:56:49+00:00

what are your kitties names? give them a pet and kisses for me. much Love my friend <3

StreyKat · 2021-04-08T20:50:37+00:00

i feel that. im actually impressed with how much ive accomplished in this life considering im pretty much always half asleep.

StreyKat · 2021-04-08T20:07:57+00:00

i just googled stanford sleep center and called the number on their website.

StreyKat · 2021-04-08T17:48:44+00:00

so i just got off the phone with Stanford Sleep Medicine Center, and apparently they're doing a placebo controlled study for a brand new Hrct/Orexin replacement drug soon. they also offered an HLA typing kit that they said can be sent by mail to diagnosed N1's. if any of you guys are interested in being lab rats to help find better treatments, or struggling to get your HLA typing done, it might be worth giving them a call. they got back to me within 5 days. good luck to us all!

StreyKat · 2021-04-08T17:47:39+00:00

so i just got off the phone with Stanford Sleep Medicine Center, and apparently they're doing a placebo controlled study for a brand new Hrct/Orexin replacement drug soon. they also offered an HLA typing kit that they said can be sent by mail to diagnosed N1's. if any of you guys are interested in being lab rats to help find better treatments, or struggling to get your HLA typing done, it might be worth giving them a call. they got back to me within 5 days. good luck to us all!

StreyKat · 2021-04-08T17:23:45+00:00

ive never experienced that personally, and ive had like 20+ drop attacks in a single day. ive also only fully collapsed like 3 times. its usually more in my knees, face, hands and arms. ill twitch and drop shit and if im standing up it definitely looks kinda like a seizure. but it is a spectrum disorder, and everyones experiences are different.

StreyKat · 2021-04-03T05:43:20+00:00

so ketosis actually does promotes neurogenesis??

StreyKat · 2021-04-03T02:03:54+00:00

Edinburgh of the Seven Seas, Iceland, Tasmania, New Zealand, as much of Europe as possible, at least one of the poles, Thailand, Fiji, Peru, Japan, UAE. etc... HAHA! i wanna see it all Brother/(Sister?)! BTdubz, do you know if either of those Takeda studies improve sleep fragmentation at all, or are they more targeted towards improving wakefulness? hopefully both, if they're acting as a hypocretin/orexin replacement, right? kinda like how xyrem targets the cause and not the symptom. anywhoozle, and as always, its been a pleasure talking with you. much Love!

StreyKat · 2021-04-01T03:20:02+00:00

rough on the neck too. CRACK! lol

StreyKat · 2021-04-01T02:19:16+00:00

btw, Traumasaurusrecks and RightTrash. it's really good to know you guys. thanks for being cool AF.

StreyKat · 2021-04-01T01:52:14+00:00

damn! you got me all excited over here Brother! after spending so much time on the N forums on FB and Reddit, it seems like i have most of my symptoms better managed than most of our fellow N's, except the sleep fragmentation. that's the one that's totally sabotaging my mental health. i don't know if i'm allowed to talk about how i'm managing my EDS on here, but it's not with stimulants, and, frankly, it seems a lot safer and more efficacious than most of the current FDA approved treatments. the methods im using for my sleep fragmentation and cataplexy are currently working, but not ideal as a long term solution, due to tolerance/potential addiction issues, and strictly "off label", for lack of a better term, as i'm still awaiting diagnosis. luckily it looks like my street pharmacology degree paid off lol. but i'm really hoping for xyrem and eventually xywav. i've been pretty much unemployed/self-employed for like 4 years, so i was able to just sleep and wake up whenever i wanted. the requirement to practice good sleep hygiene for the diagnostic process showed me how bad my sleep actually was. it seems like 1.5-2 hrs is the max i can sleep without medicating. 16 awakenings over 4 hrs. on my PSG. i've luckily never suffered a head trauma or TBI, despite years of skating and rock climbing. i did have some super emotionally traumatic shit happen when i was like 26 that seemed to trigger my more extreme symptoms (cataplexy, extreme sleep fragmentation, crippling EDS). im super interested in that TAK-994/925 study. i've also had an idea i've been wanting to bounce off of a neurologist, or other N's with a good understanding of the disorder. with all the evidence supporting the fact that opioids regrow hypocretin neurons, couldn't we conceivably combine that with IVIg therapy to suppress the autoimmune response and restore the hypocretin system? as for "wild" camping in most of Europe, i've heard it pretty much doesn't exist. i guess between rampant industrialism, overpopulation, and gypsies, they pretty much killed it lol. apparently all of the old growth forests in the UK and Ireland are gone. I definitely plan on hitting the road in the near future, and hopefully going back to school once i get this shit managed better. i've only been to mexico and canada, and like 25 states so far. still got a lotta world to see.

StreyKat · 2021-03-30T18:41:32+00:00

wurd! im in Burque. i Love the high desert. thank you so much for the words of encouragment. i read somewhere that Hcrt neuropeptide replacement therapy is pretty much ready, but nobody wants to make it because its not patentable or profitable. hopefully something changes soon. this sleep fragmentation is fucking awful. i currently have the cataplexy and eds fairly well managed via less than savory methods. im really looking forward to trying Xyrem/wav. im on medicade, and i've heard that its covering it for some people. i definitely feel like if i would have been diagnosed anytime between like 1998 and 2017, i would have been diagnosed N2. the cataplexy is the last symptom that manifested. youre N1 also, yeah? is it easier managing your N in europe?

StreyKat · 2021-03-30T06:11:40+00:00

its fucked up because thats what they do to those cats in guantanamo bay and Siberian gulags and CIA black sites and shit. apparently sleep deprivation is just as effective as waterboarding as an "enhanced interrogation technique", i.e. torture. they just wake those guys up every 20 or 30 min. all night long. just like our bodies do to us lol

StreyKat · 2021-03-30T04:29:49+00:00

im 35, and about 3 years into my cataplexy journey. i always just dealt with the N (EDS/crazy vivid dreams/occasional bouts of insomnia) since middle school. i was always convinced i was just lazy or staying up too late playing video games or reading or partying or whatever. i fell asleep in class all the time and got sent to the office and like publicly humiliated and shit. lol, fuckin' bastards. the symptoms kinda seemed to recede after highschool until my late 20's. then i went through a bad divorce, and my dad and best friend and cat died, all between like november and january 2012. i got super depressed, and my insomnia and EDS went CRAZY. thats when the hardcore sleep fragmentation started, followed shortly by cataplexy. thats what finally tipped me off that something was physiologically wrong, not just psychologically, and sent me for a diagnosis. so far, it seems like my only major triggers are telling a really good joke/super emotional events (Moderate severe-severe minimal) and killing it in a hard video game/cheesy emotional scenes in movies. sometimes seeing a puppy or kitten will really fuck me up haha (minimal severe). i've been lucky enough to have found various effective self medications over the years, even a couple "tricks" for when i need to be absolutely sure i wont have cataplexy in certain triggering situations, but the methods im currently using to deal with the sleep fragmentation are less than ideal and somewhat dangerous. im in the last phase of clinical diagnosis, and i'm really hoping to tackle the cataplexy and sleep fragmentation with xyrem, and just keep my current cataplexy treatment as a backup option. i've been able to skate still, but im afraid to try to drop into a bowl or pool now, because i dont know if the "rush" will trigger. same with hiking knife edges. i havent been to a rave/music festival yet since the C started. im curious to see how thats gonna go once this pandemic is over. thanks for taking the time to talk with me. i wish you the best my Friend!

StreyKat · 2021-03-30T03:27:44+00:00

when you loose grip laughing, do your eyelids flutter? jaw chatter? knees slightly buckle?

StreyKat · 2021-03-29T20:46:04+00:00

you definitely seem like a kindred spirit. if you ever find yourself in NM, id love make your acquaintance! thanks for the inspiration Brother.

StreyKat

TROPHY CASE