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Any other Narcoleptics here?

Saber44

Saber44

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Joined
Jul 29, 2011
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Little Back story here. For the past 6-8 months I have been incessantly sleepy and it has been exceedingly difficult to fall asleep at night. I thought that maybe the drugs I was using (mostly mephedrone) were fucking with my sleep. I eventually went clean for 9 weeks and the problems did not go away. I also had regular hypnogagic hallucinations and (less frequently, but still often) sleep paralysis.


So I got the results of my sleep study and nap study back the other day. The sleep study showed that I had sleep apnea (which I already suspected) as well as restless leg syndrome.

The real shocker was that the nap study revealed that I had narcolepsy. In a nap study, you are given an opportunity to take a 20 minute nap every 2 hours. If you enter into REM sleep during these naps, it signifies narcolepsy (so I was told). I entered into REM sleep in 2 out of the 5 naps. The doctor put me on Nuvigil (neither of us expressed any wish to use amphetamines. The last thing I need is a new addiction).

I am finding it difficult to process this information. I assumed if I had narcolepsy I would have known about it. I can't help but wonder if I was misdiagnosed. The Nuvigil seems to be sort of effective. While on it, at times I feel awake, but at others sleepy and wired
 
I feel that I was misdiagnosed myself. I did have a redo of the sleep study done at the state university hospital and they found no narcolepsy while my first one done locally did. Do you really have lots of trouble staying awake during the day, especially while you are doing something active, not just watching TV or riding passenger in a car? Supposedly Narcolepsy is pretty overwhelming and its easy for people with it to pass out out of nowhere. My problem was and still is drug withdrawal recovery. Benzos, alcohol, pot, cigarettes, prescription narcotics, but not uppers like in your case. I've gotten a little better on and off by staying clean and sometimes I sleep and live normally.
Nuvigil is some sort of stimulant. I don't think having dreams while taking short naps is necessarily a problem. Even before my sleep and drug issues I would dream during a nap here and there. I used to get bad Hypnagogics too but with time that has thankfully lessened. HAving your brain fried on dope and then subsequently rapidly withdrawing can cause your brain to function strangely and like me it seemed to mimic narcolepsy symptoms minus the cataplexy and sleep paralysis.
 
There was never really any times when I was more tired than usual, it was more of just a constant fatigue.
I noticed that the Nuvigil he gave me only lasts 3-4 hours instead of the 8 that it is supposed to, and when it wears off I have a nasty crash
 
It sounds like withdrawal from regular use of stimulants, I used to smoke meth and when I quit I was tired all the time for soo long. Even after 3 months I'd usually end up having a nap around 7-8pm. By about 6 months, probably, I was mostly back to normal. I don't know how often you were using meph, but maybe that's it?

There was a girl with narcolepsy at my university, once she just crashed out on the floor of the lab for about 30 min, people had to step over her to go get equipment.
 
Could be. I took a very long break from stimulants. I wasn't doing TOO much meph. Maybe 2-3g every other week
 
Yeah, withdrawal deffinately fucked up my sleeping habits. I used downers...you used uppers...the two worst for fucking with sleep.
The Sleep Latency test is highly unfair these days. They force you to turn the TV off and lay in bed with the curtains closed and the lights off. They make it too easy to fall asleep. I heard from another doc that the older MSLT tests consisted of people being forced to sit up during the day in full light and not fall asleep. A true Narco would be passing out randomly while sitting up in broad daylight. ^^skillet "layed" a nice example out above.
 
Yeah. I feel that I was misdiagnosed. Plus the medicine doesn't help much. It gives me awful headaches and exacerbates the fuck out of my HPPD. I'd rather just be tired all the time.
 
Sorry to drag up such an old thread, but recently I have been back on my bupropion and I have noticed that my symptoms have all but disappeared. Improvement via NDRI would suggest that the cause was stimulant
abuse, correct? My sleep patterns were just so weird though...It must have been a huge coincidence with me getting frequent sleep paralysis and being able to slip into REM sleep that quickly
 
Do you have any other physical symptoms? Maybe a quick background of your medical history, including any psychiatric diagnosis's? Wellbutrin does have stimulant like effects such as alertness.
The reason why I ask is because I'm in the process of being diagnosed with either lupus or rheumatoid arthritis and I believe my constant exhaustion is related to this. I read somewhere that you can develop sleep disorders when dealing with autoimmune diseases. I can literally fall asleep basically at any given time. For example I literally slept a day and a half, for no reason.
Is it a symptom of narcolepsy if you dream while taking a short nap?
Also, sleep apnea really can have an effect on sleep quality.
But yeah, any other physical symptoms?
 
Yeah I could take a nap at any given time. I don't have cataplexy, which is really the only blatant physical symptom in the diagnosis of narcolepsy.

I'm not sure what's going on honestly. When I first went back on the medication it made me uncomfortably jittery (coming from someone who frequently abused stimulants). Those effects have tapered off. The doctor subbed prozac for my old citalopram (celexa) prescription. It's been about a month and I don't really feel much better. I was having some awful mood swings the first couple weeks with the prozac.
 
That can happen with prozac sometimes. Can cause episodes of mania obv followed by down swings.
What other meds have you tried for your narcolepsy? Or any other meds actually.
 
Addiction to stims and narcolepsy don't usually occur together due to deficits in the orexigenic system. Its a pretty big point since most narcoleptics were on amphetamine till the mid 2000's. Looks like protracted stim withdrawal to me.

Addiction and arousal: The hypocretin connection
Benjamin Boutrela, Luis de Leceab, ,
a Center for Psychiatric Neurosciences, Department of Psychiatry, University of Lausanne, Switzerland
b Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, United States
Received 14 September 2006. Revised 2 November 2007. Accepted 2 November 2007. Available online 22 November 2007.
Click to expand...
 
Does your doctor know that you have a history with stimulants? Insofar as he or she does not, the diagnosis might be mistaken.

ebola
 
Sorry. Been a while between visits.
No my doctor doesn't know about my stim history. I intend to keep it that way. After a lot of thinking and asking some of my professors (I'm a neuroscience undergrad), I am also convinced it was just stim withdrawals coupled with the fact that I didnt do fuck all last summer. I'm sure there is a certain degree of hypochondriasis involved.
I have resolved to stop with the stims again. They make me motivated, and interested in what I am doing for awhile, followed by a shitty comedown, fiending, and spending all my money on drugs. I can't ignore how neurotoxic meth is anymore. I've noticed I'm starting to occaisonally stumble over my words. Fuck that.

Shady Kaity said:
That can happen with prozac sometimes. Can cause episodes of mania obv followed by down swings.
What other meds have you tried for your narcolepsy? Or any other meds actually.
Click to expand...

Oh and I quit taking the prozac, exercised 3-4 times a week strenuously, and quit doing drugs for 30 days. It was the best 30 days in years.
 
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Yeah I definitely sympathize. It isnt as bad right now, but last fall was pretty awful. Slept through nearly every lecture
 
These sleep doctors usually write narcolepsy on their reports on you when they are really looking at Excessive Daytime Sleepiness. Usually the confusion is related to the doctor not giving you enough information and exaggerating the paper work he has to send to your insurance in order to get pre-certification on the tests (my doctor has steered me in the right direction, but I get confused as fuck when he hands me the booklet for Xyrem and tells me to talk to my psychiatrist, like, am I supposed to ask my psych to prescribe it or just make sure it happens to be safe?).

Excessive Daytime Sleepiness is pretty serious in its own right, but you don't have narcolepsy.


EDIT: Didn't read the update you made but I'll leave what I put up there all the same.
 
Yeah, mine did the same. Gave me pamphlets on xyrem, talked about prescribing it, and then never getting back to me.
 
Thought I'd bump with my recent experience, my sleep doctor almost put me down as narcoleptic and bipolar due to my chaotic sleep cycle.

Imagine going for 2-7 day periods with only a hour of sleep a night followed by a equal time almost falling asleep standing up. So like phasic narcolepsy or hardcore energy swings without the corresponding mood swings.

But, for what it's worth I still am diagnosed with sleep disorder NOS.

And as an aside, I really am starting to prefer the term hypocretin to orexin, It's sort of like calling a endocannibinoid a "munchin".
 
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