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#1 gutterpunkprincess

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Posted 04 November 2012 - 09:24 AM

Hi everyone!
I'm 25 and I was just diagnosed with narcolepsy a couple of days ago. I've had symptoms for probably about 13 years or so. I had a sleep study done in September and when I went back to see the doctor he said that I have narcolepsy. He prescribed Lexapro 20 mg/day and Provigil 200 mg/day. I've taken the Lexapro for years because I kind of found out by accident that it helps with the hallucinations and cataplexy.. I had stopped taking it for a couple months and the hallucinations were out of control. I would be getting up for work in the morning and there would be people just walking around in my apartment for whatever reason. Sometimes they seemed harmless but once this guy showed up with an axe.. Anyways.. So that's what the Lexapro is for. The modafinil, I've never taken before.. Today is my second day taking it and I decided 200 mg was too much so now I'm gunna try half that dose.
My boyfriend is in denial or something. He thinks I just scammed some doctor to get drugs. He's one of those people who thinks that you can treat any disease just by eating healthy or whatever. He also has some bizarre notion that if I just start sleeping less, I will need less sleep. We haven't been together that long though.. It's not like he knew me when I was a teenager and was first starting to figure out how to cope with life while requiring 12+ hours of sleep a day. At this point I've gotten really good at functioning despite my constant need for sleep. So I could see how it might not be totally obvious that the way my brain functions is abnormal. Plus.. he's kind of right about me being a drug addict, as much as I hate to label myself that way. I function way better with some kind of stimulant.. If I don't have nicotine gum, or stackers, or some kind of energy drink, or.. whatever... I can't really do much of anything. At some point about a year ago when i was unemployed, I stopped all of that stuff for about a month, and it got to the point where I was only getting out of bed maybe 2 or 3 hours a day. It's kind of hard not to be dependent on substances when you need them just for basic survival. I hope this Provigil stuff works..
Anyway.. if anyone bothered to read all of that.. lol
Have a nice day!



#2 gutterpunkprincess

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Posted 04 November 2012 - 10:53 AM

My doctor said something about Xyrem but he didn't want to throw so many medications at me all at once. I think right now the idea is to try the Provigil and see if it works and then go back in a month and possibly start with the Xyrem.
The Lexapro actually does control the hallucinations and sleep paralysis, I just stopped taking it because I had to for my sleep study, and then I didn't start taking it again because I wanted to see if I could function without it. Which I basically was, except for all the hallucinating.
Thanks for your reply, btw. It's nice to have someone to talk to who actually understands what I'm going through.



#3 DeathRabbit

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Posted 04 November 2012 - 11:27 AM

My doctor said something about Xyrem but he didn't want to throw so many medications at me all at once. I think right now the idea is to try the Provigil and see if it works and then go back in a month and possibly start with the Xyrem.
The Lexapro actually does control the hallucinations and sleep paralysis, I just stopped taking it because I had to for my sleep study, and then I didn't start taking it again because I wanted to see if I could function without it. Which I basically was, except for all the hallucinating.
Thanks for your reply, btw. It's nice to have someone to talk to who actually understands what I'm going through.



I was on a lot of different SSRIs and Lexapro was my favorite. However, I have a dim view of that pantheon of drugs in general, due to the way the permanently restructure your brain chemistry after long term usage. Until recently, many SSRI makers were issuing completely disavowals of the dependency the drug creates and SSRI discontinuation syndrome, which has actually been shown to give ppl a de facto narcoleptic like state, due to a permanent promotion of REM sleep. In other words, I agree with you staying off the Lex if you can. They're good in the short term, but taking an SSRI for longer than a few months is like making a pact with the devil.

#4 DeathRabbit

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Posted 04 November 2012 - 11:34 AM

Also, sorry to hear your bf is a skeptic. That's rough and a lot of us have to deal with skeptics that are close to us :/ . I would say though, that it's perhaps not a bad idea to sleep a little less. I've told this to other people on here, but I dialed it in and found that 8.5 hrs is the best amount of sleep for me. If I get much more or much less than that, I feel like carp. I believe it's because if I sleep 9+, my body scales the metabolism back, which makes my low energy level even more abysmally low. I will say that if I sleep like 9+ or really Rip Van Winkle it out to 12 or 13 hrs, that I find it easier to arise. But then usually about 30 minutes later, I get a terrible, terrible brain fog. Every once and a while I'll really have a crapton of sleep to help recover some sleep debt. But during the week days when I have to be productive, I find keeping an consistent sleep schedule and not letting my sleep go on for too long actually helps, even though it's damned tough to roll out of bed after only 8.5 hrs. And yea, it annoys me when ppl tell me that I should just eat healthier or follow a fatkins diet or some crap and it'll fix me. Eating healthy is always a good choice, but it can't reverse brain damage.

#5 gutterpunkprincess

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Posted 04 November 2012 - 04:59 PM

I was on a lot of different SSRIs and Lexapro was my favorite. However, I have a dim view of that pantheon of drugs in general, due to the way the permanently restructure your brain chemistry after long term usage. Until recently, many SSRI makers were issuing completely disavowals of the dependency the drug creates and SSRI discontinuation syndrome, which has actually been shown to give ppl a de facto narcoleptic like state, due to a permanent promotion of REM sleep. In other words, I agree with you staying off the Lex if you can. They're good in the short term, but taking an SSRI for longer than a few months is like making a pact with the devil.


I started taking Lexapro at the beginning of 2009. So about 4 years now. I am aware that there can be some adverse effects with long term use but it has been a miracle drug for me. I'm convinced that I would have never finished college without it. Much less been able to hold down two jobs. Also, I just stopped taking it for about two months without noticing any adverse effects as a result, other than the reappearance of the symptoms which I was using it to treat. I've heard of people having a hard time getting off lex but for me it wasn't anything, but the hallucinations and sleep paralysis came back and also the sleep attacks and cataplexy got worse. Maybe it depends on the person.

#6 DeathRabbit

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Posted 04 November 2012 - 05:17 PM

I started taking Lexapro at the beginning of 2009. So about 4 years now. I am aware that there can be some adverse effects with long term use but it has been a miracle drug for me. I'm convinced that I would have never finished college without it. Much less been able to hold down two jobs. Also, I just stopped taking it for about two months without noticing any adverse effects as a result, other than the reappearance of the symptoms which I was using it to treat. I've heard of people having a hard time getting off lex but for me it wasn't anything, but the hallucinations and sleep paralysis came back and also the sleep attacks and cataplexy got worse. Maybe it depends on the person.


Oh yeah, anything relating to brain chemistry is always pretty variable. Some people never have any issues at all. Others, like one guy I read about, have been permanently chemically castrated by them. Just depends on the person's neurochemical structure. I guess it just chaps my butt that I wasn't told these meds could be dangerous. In general, I think they're marketed as life-long treatment option, when I really think it would be more optimal to just use them to get over a rough hump.But hey, if it works, it works. Glad somebody gets some benefits from those. I wish I had at least stayed on the Lex and never gone to Paxil. I've not talked to one person IRL or online that doesn't have a horror story to tell about Paxil.

#7 gutterpunkprincess

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Posted 11 November 2012 - 01:22 PM

I had the worst sleep paralysis this morning! It was horrible! It lasted for about 45 minutes. I was awake but I couldn't move.. Every now and then I would be able to move some part of my body, but not in any kind of coordinated way. I was basically just lying there twitching for 45 minutes. It's a good thing I didn't have to be at work or anything.
I hate this. I want to be "normal".
I can't decide if I should keep trying to fight sleep all the time, or if I should just admit to myself that I need to sleep 12 hours a day and try to build some kind of life around that. That's what I did for the past three years or so, and it sucked, but for the past 2 months I've been attempting to not sleep as much, and it also sucks. Maybe my life is just meant to be super difficult.

#8 Ciraeyna

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Posted 11 November 2012 - 05:51 PM

Hey GPP,

Thankfully I don't have sleep paralysis, and I'm sorry that you do. It truly sounds horrible. :(

But I do know exactly what you mean about just wanting to be normal. I was diagnosed in October this year, and I'm still struggling to come to terms with it. It sucks. We try and try and struggle and struggle, and nobody around us really gets it. Having a disorder that nobody understands (or worse minimizes/blames us for), is just...SH*TTY. I am thankful to have found this forum, because there are some really nice people here and the vast majority of the posts I read are very positive and supportive. At least we can support each other virtually!

Anyway, I wanted to echo Austin's post about the Xyrem. I don't know yet that it's going to work out for me, but it has helped so far. I'm still titrating (at 3g x2 right now but I think it's not enough). The issue I keep running into is that I can't sleep long enough on it. That's a subject for another post (in fact, I think I already read a thread on that here). But what I wanted to say was that overall because of the Xyrem, I can't sleep as much - it's the way the drug works - but I am sleeping better so it's still kind of okay. (I would dearly love to figure out how to get more than 6-6.5h of sleep on it though!!!) On the positive side, I no longer feel like I need to sleep 12h a day and still take a nap. Xyrem isn't perfect, but it might be worth trying.

Hang in there - it's about all we can do.

*hugs*
Cira

#9 manicpanic

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Posted 12 November 2012 - 01:20 PM

Like everyone else has said, I'm so sorry that your bf doesn't believe you have a sleep disorder that is NOT your fault. Before I was diagnosed (but strongly suspected that I had narcolepsy), and shortly after I was diagnosed, my partner expressed doubt as well -- he kept saying that I wasn't "trying hard enough" to stay awake, and that I gave in too easily to sleep attacks. It's unfortunate that so many people just don't understand how powerless a narcoleptic can be to fight the ESD alone (let alone sleep paralysis, hallucinations and other symptoms). Hang in there! I hope you're able to find a supportive friend or two that believes you and recognizes that you're struggling with a sleep disorder.

#10 gutterpunkprincess

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Posted 13 November 2012 - 02:21 PM

Like everyone else has said, I'm so sorry that your bf doesn't believe you have a sleep disorder that is NOT your fault. Before I was diagnosed (but strongly suspected that I had narcolepsy), and shortly after I was diagnosed, my partner expressed doubt as well -- he kept saying that I wasn't "trying hard enough" to stay awake, and that I gave in too easily to sleep attacks. It's unfortunate that so many people just don't understand how powerless a narcoleptic can be to fight the ESD alone (let alone sleep paralysis, hallucinations and other symptoms). Hang in there! I hope you're able to find a supportive friend or two that believes you and recognizes that you're struggling with a sleep disorder.


He's gotten better about it lately.. Like, he'll ask me if I'm tired.. And tell me it's ok to go to bed at 5pm if I want.. We had this argument/conversation the other day in which I told him that this relationship is doomed to fail unless I'm able to get more sleep. And that I have an incurable neurological condition and it's not going to get any better and he needs to figure out whether he can deal with that or not. And stop trying to cure me by depriving me of sleep. For whatever reason, he thinks that if he just keeps me awake more that's somehow helping me. In addition to my narcolepsy I have a pretty stressful job and I work a lot of hours, usually somewhere between 40 and 52 hours a week.. and sometimes I have to work 12 hours in a day, or wake up at 3 am and go to work, or work until 11pm... I love my job though.. And it's actually kind of easy for me to deal with the odd hours cuz if I know i have to be at work at 4 am, I can go to bed at 6 pm with no problems. My co workers have a hard time falling asleep that early..
But anyway.. Obviously anyone who wants to date me is going to have a lot of b.s. to deal with. I get that. My life is kind of complicated. I feel like this one is starting to understand.. It's a work in progress though.