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Author Topic: Narcolepsy  (Read 8610 times)

Offline Reezy (OP)

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Narcolepsy
« on: December 13, 2015, 09:18:44 PM »
I was doing the ole random internet adventure and the topic of the day became narcolepsy.

I found this poor girls videos on youtube:



The video is her studying for some test/exam, showing how narcolepsy really is.

Which is inspiring considering how hard it would be to study, learn, read and take tests randomly falling asleep then trying to figure out wtf you were doing and once you figure that out you have to find where you left off at.

Ofcourse most know the main medication prescribed is stimulants. Adderall, Ritilan, Dextroamph, ect. but what i found really interesting on the Wiki page is Codeine is also a medication prescribed.. even though it is a sedative. I do NOT have narcolepsy but Opiates always did get me "going" unless I took a nod dose.

I just made this thread because it is very interestingly crazy how this disease effects people. They kinda know how it works which is crazy in itself because it breaks down to a certain kinda cell. out of the billions of cells in the brain there is only like 20,000 of these. hows that for a ratio lol. A shortage of these cells is whats linked to narcolepsy, but not required. I wonder if they where too many? Would you not sleep. they do have a disease like that and its fatal, but I'm not sure what causes that.

Quote
There appeared to be a correlation between individuals with narcolepsy and certain variations in HLA genes, although it was not required for the condition to occur. Certain variations in the HLA complex were thought to increase the risk of an auto-immune response to protein-producing neurons in the brain. The protein produced, called hypocretin or orexin, is responsible for controlling appetite and sleep patterns.[24] Of the billions of cells in the human brain, only about 10,000 to 20,000 cells secrete hypocretin molecules.[16] Low levels of hypocretin have been correlated with a past history of infection, diet, contact with toxins such as pesticides, and brain injuries due to brain tumors or strokes.[16]


Do any of y'all have, or know anybody that has narcolepsy. discuss it here!
« Last Edit: January 17, 2020, 12:47:38 AM by Chip »
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Offline Narkotikon

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Re: Narcolepsy
« Reply #1 on: December 14, 2015, 02:23:05 AM »
Another interesting med they use for narcolepsy is Xyrem, which is sodium oxybate. It gets converted into GHB in the body.  I think the goal is to give the person a restful, full nights sleep so the patient can stay awake longer during the day. 
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Offline St. Theresa

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Re: Narcolepsy
« Reply #2 on: December 14, 2015, 02:50:14 PM »
I have a friend who has narcolepsy ...and he's one of us! He bangs dope which makes me wonder when he's just nodding or if he went narco dreamy?  He also drinks 30 beers a day. Lol
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Offline Opus

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Re: Narcolepsy
« Reply #3 on: December 14, 2015, 03:03:03 PM »
Another interesting med they use for narcolepsy is Xyrem, which is sodium oxybate. It gets converted into GHB in the body.

Sodium Oxybate IS GHB, no conversion about it.

GBL and 1,4B get converted in the gut, but Xyrem is the real deal pharmaceutical GHB.

Also about "a full night's sleep" (I'm not trying to shred your post Nark, I just think this is worth responding to) -- my chief complaint about using GHB/GBL to sleep, is the waking up after 4hrs thing and having to redose. That stuff will definitely save me from being completely wrecked from lack of sleep -- so it works, but I rarely feel really completely rested from using it to sleep. For me, benzos actually bring much better quality of sleep; but that's me and I'm not narcoleptic.
« Last Edit: December 14, 2015, 03:12:31 PM by Opus »
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Offline Reezy (OP)

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Re: Narcolepsy
« Reply #4 on: December 15, 2015, 02:15:57 AM »
Yea GHB supposedly has a rebound effect on dopamine. so when the sedative effects where off you get wired.(well not wired but yea)

Alcohol also has a dopamine rebound effect also if i remember correct.
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Offline Narkotikon

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Re: Narcolepsy
« Reply #5 on: December 15, 2015, 03:28:52 AM »
Another interesting med they use for narcolepsy is Xyrem, which is sodium oxybate. It gets converted into GHB in the body.

Sodium Oxybate IS GHB, no conversion about it.

GBL and 1,4B get converted in the gut, but Xyrem is the real deal pharmaceutical GHB.

Also about "a full night's sleep" (I'm not trying to shred your post Nark, I just think this is worth responding to) -- my chief complaint about using GHB/GBL to sleep, is the waking up after 4hrs thing and having to redose. That stuff will definitely save me from being completely wrecked from lack of sleep -- so it works, but I rarely feel really completely rested from using it to sleep. For me, benzos actually bring much better quality of sleep; but that's me and I'm not narcoleptic.


Thanks for the correction.  You obviously know more about Xyrem than I do. 

When I briefly read about Xyrem over a year ago, I thought using a med that requires you to wake up and take again during the night was odd too. 
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Offline shoybs

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Re: Narcolepsy
« Reply #6 on: March 02, 2016, 11:10:34 PM »
I always found narcolepsy to be a fascinating topic. And actually just recently found out that I am, in fact narcoleptic. I don't have cataplexy, just the sleep disorder part. And it has royally fucked me.

You mentioned the use of codeine for narcolepsy and to me this makes perfect sense. Whenever I used with other people I always noticed everyone else nodding like crazy, and it just never did that for me. Rather than opioids making me more tired, it's more like they "modulated" my sleepiness/alertness. If I was tired, they gave me energy and kept me alert. If I was feeling kinda wired, they would mellow me out. I had no idea for years I was self-medicating a condition I didn't even know I had.

About 10 years ago (before I started using) I started feeling tired constantly. A year or so later I woke up in the middle of the night, not breathing. So I went to my doctor and she had me do a standard overnight sleep study, and I was diagnosed with sleep apnea. Once they had the sleep apnea diagnosis, they never bothered to investigate any further. I was put on CPAP (continuous positive airway pressure) and told to use it every night. So I did, and the not-breathing episodes stopped, but I was still tired all the time. I could sleep for 20 hours straight, wake up for two hours, and then take a 5 hour nap. Eventually I figured out that opioids give me enough energy to get through the day - and if I dosed right before bedtime, I could sleep a normal 8 hours and wake up refreshed. I went for a long time on pills bought on the street and never had a problem with dependence or detoxing. Then out of nowhere my pill sources dried up, and I decided to give heroin a try. Since it worked, obviously, I kept using it. You can see where this is going...

Then a little over two years ago I got a full-time job with great pay. I was doing what I loved, and not wanting to fuck it all up, I decided to get clean. Now clean again, my constant fatigue and sleepiness came back. Over the course of a year I got three write-ups at work for falling asleep at my desk (stone-cold sober, mind you). I decided that there must be something else that can be done, and I decided to go back to my doctor. I explained what was going on and she told me that it was possible that I had both sleep apnea AND narcolepsy if I'm not getting relief from using my CPAP. She referred me to a neurologist who I had to wait FOUR months to see. When I finally saw the neurologist, he gave me an exam and referred me to a sleep lab for a sleep study and a multiple sleep latency test. He explained what was going to happen if it was found that I was narcoleptic. They were going to give me an initial prescription for Provigil and Xyrem, and after a while if I was still having issues, they were going to look at amphetamines.

Before I ever got that study done, however, I had a particularly bad day at work, and I fell asleep while on the phone with a client. Even though I had explained my situation to my bosses and kept them up-to-date with my doctor's appointments and everything, they fired me. And therefore I lost my health insurance. I can't even collect unemployment, because they are claiming that I was fired for "misconduct", so I can't even afford the Cobra continuation coverage they offered.

And now the icing on the cake - I had the multiple sleep latency test done and was found to be narcoleptic - five days AFTER the cut-off date where I could have FOUGHT the allegations by my employer that I was fired for "misconduct" and could argue that I was instead fired for a medical condition. And even better, I went back to the neurologist thinking "well, at least I'm finally going to get some relief, and fuck it, maybe I'll have a little fun with that Xyrem." But nope, he tells me that he sent a prescription to my home medical equipment supplier for a VPAP (variable positive airway pressure) machine. I said, "Okay, what about medication?" and he replied "No medication. The VPAP should work better for you, but I'm not giving you ANY narcolepsy medication until you try the VPAP for at least six months and then have another sleep latency test done." Apparently my doctor told the neurologist all about my opioid addiction, so now he's scared to prescribe me even fucking Provigil for god's sake. And of course, without insurance my VPAP machine is $4,000. I can't even afford to get it to begin with.
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Offline Chip

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Re: Narcolepsy
« Reply #7 on: March 03, 2016, 03:43:02 AM »
if you are Narcoleptic then they would prescribe stimulants - is that what you really want ?

I find it interesting that you are a mild Narcoleptic ... I'd still try to see if your old employer would reconsider you now that you know why you fell asleep despite being too late.
« Last Edit: March 03, 2016, 03:45:09 AM by chipper »
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Offline shoybs

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Re: Narcolepsy
« Reply #8 on: March 03, 2016, 05:32:10 PM »
I mean, I've never ever enjoyed taking stimulants, per se. But that's probably a good thing. I'd be more likely to use them as prescribed rather than abuse them. Really I just want some relief and I'm willing to try anything. I'm tempted at this point to go the IOP route and order South African/Indian Modafinil.

And I doubt seeing it making a difference at this point with my employer. They knew for months that I was seeing a neuro for symptoms of narcolepsy and they fired me anyway.
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Offline Roman Totale

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Re: Narcolepsy
« Reply #9 on: March 03, 2016, 11:19:48 PM »
I'm 99% sure you're in the US, and you may know all this but: imported modafinil is (or at least has been) pretty common on a lot of domestic or non-IOP sites, ones that wouldn't otherwise sell a regulated drug; even more places sell adrafinil, which is a modafinil pro-drug, though the quality went down generally after France stopped production of Olmifon.
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Re: Narcolepsy
« Reply #10 on: March 04, 2016, 05:42:56 AM »
I've never seen IOP's selling amps but I have seen them selling ritalin. Dunno if that might be too crack like but it's out there.
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