DeathRabbit

Xyrem Diary

66 posts in this topic

Well, I've been off the Xyrem for 2 days now and will be for one more. Not my choice, SDS keeps screwing up my order. I am about to be seriously upset, as this has probably set me back weeks in terms of progress. I'll have to start back at a lower dose, no doubt.

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Okay, I've been back on the Xyrem for about 5 days now. The first few days back were pretty rough but I'm starting to feel the positive effects again. I still feel kinda spaced out and dissociative. Also, I seem to be havign trouble with long term memory. Hoping that will clear up.

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Okay, I've been back on the Xyrem for about 5 days now. The first few days back were pretty rough but I'm starting to feel the positive effects again. I still feel kinda spaced out and dissociative. Also, I seem to be havign trouble with long term memory. Hoping that will clear up.

I was having trouble for about 2 months after getting up to 4.5, now my memory is improving... like I can say a 6 digit number and remember it long enough to type it where it needs to be... in the past I would have to do 2 numbers at a time lol. Another example is, I run this program and have to save it each time using the next number... now even if its the next day I can remember what the last number was instead of going back and looking... I know these are small steps but its nice to see improvement.

Also, I no longer take any adderall... I cant say that I dont need it, gosh some days I almost give in... I still get sleep attacks but they are more like a deep fog then a slap myself in the face to stay awake kind of thing, and they happen less and less!

Not wanting to repeat things I have said a million times...

But I felt like complete ass when starting this drug even when I reached the max dose... it really took a good long while to not have stomachaches/headaches/and just feeling unwell... it took even longer to start getting a solid 7 hours of sleep... some nights I get 8 hours but its normally 7ish.

Xyrem is hard because we all want to feel better right away! I started in the end of July I think... and I am just now seeing a difference in my EDS... and I know a few months from now I will feel even better even its just a tiny bit at a time. I dont think I will ever get to feel like a normal person, but any improvement is fine by me!

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I was having trouble for about 2 months after getting up to 4.5, now my memory is improving... like I can say a 6 digit number and remember it long enough to type it where it needs to be... in the past I would have to do 2 numbers at a time lol. Another example is, I run this program and have to save it each time using the next number... now even if its the next day I can remember what the last number was instead of going back and looking... I know these are small steps but its nice to see improvement.

Also, I no longer take any adderall... I cant say that I dont need it, gosh some days I almost give in... I still get sleep attacks but they are more like a deep fog then a slap myself in the face to stay awake kind of thing, and they happen less and less!

Not wanting to repeat things I have said a million times...

But I felt like complete ass when starting this drug even when I reached the max dose... it really took a good long while to not have stomachaches/headaches/and just feeling unwell... it took even longer to start getting a solid 7 hours of sleep... some nights I get 8 hours but its normally 7ish.

Xyrem is hard because we all want to feel better right away! I started in the end of July I think... and I am just now seeing a difference in my EDS... and I know a few months from now I will feel even better even its just a tiny bit at a time. I dont think I will ever get to feel like a normal person, but any improvement is fine by me!

I think I am going to back my dosage back down. The 4.5 is just perhaps too righteous for me. It feels like I never completely wake up, and thats what brings on the terrible cluster headaches.

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I haven't updated in a while. Now, it seems like the headaches are abating and the Xyrem may actually be giving me some significant energy. The bad part is depression and znxiety with manic episodes interspersed. I haven't been this badly depressed in several years. My pshrink gave me some lamictal to try to stabilize my mood. I didnt want to take it since there's a 0.1% chane it will literally eat my skin off, but I can't live like this. I'm heading for a career ending crash and burn if I dont do something.

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For me taking xyrem is sort of a balancing act. I've had to keep my dose at 3g (x2) because the anxiety and depression get more and more unmanagable at higher doses. I already took antidepressants. Even at 3 grams I feel much more anxious than I used to be, but for me it is at a level that seems preferable to always being on the verge of sleep. I have to try to balance the amount of wakefulness I need with the amount of anxiety I can handle. Of course you should talk to your doctor, but maybe if you are starting to have more energy it could be because you've caught up with your sleep debt. So, you could possibly go back to a lower dose for a while, for the sake of your mental health, and still have more energy than you used to. And if you wanted to raise it again you could do it more slowly.

 

That's what I've done, but I really don't know what's right. I feel like no one knows what the right course of action is, and even the doctors disagree about it. Maybe I should have stuck with the higher dose to see if the anxiety eventually subsided. It didn't seem like it was going to, but if it would have I would be in a better place than I am now. I'd like to hear all you guys' thoughts on that.

 

At the lower dose of xyrem, I still get a lot of brain fog during the day, especially after the first six hours of being awake. My mind and body still feel exhausted, but I don't get the uncontrollable sleepiness part anymore. I still have to take naps and ritalin if I want to accomplish anything beyond that first 6(ish) hours. I think overall I am becoming a more stable person than I was before treatment, but the progress is very slow. When I started xyrem I thought I'd be ready to go back to school right away. But things got worse before they got better. I've been taking xyrem for about 5 months now, and I think I will be lucky if I feel well enough to go back to school in the summer. 

 

Right now, I think it is important to try to balance all the symptoms and side effects and be as healthy as possible in every way you can. I think this process of experimenting to figure out how to get myself as functional as I can be will continue for a very long time, or forever. There are so many variables to work through. It sucks that this happened to us, but I have hope for things to get better, if we can be patient enough with the process.

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^That post is helpful. You sound like you are in an identical situation. I actually had a small come apart at work today, but I mamaged to keep my cool and let my boss know I had to take an extended lunch break. Now I'm back and semi functional, but yea, I'm thinking I will have to back down the dose majorly. But the problem then is I only sleep like 6 hours, ugh. You are so right. It sucks that this happened to us. I want to know who to punch for Narcolepsy ruining our lives.

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Yeah, but what also sucks is, there is no one to punch. I've been going to therapy and stuff to try to help me to deal with this. I think narcolepsy is kind of a game changer. I don't know if I'll ever be able to be normal at all. Reading Julie Flygare's memoir helped me come to terms with it a bit. I'd really recommend that anyone with narcolepsy read it. It's a quick and easy read, and I think it helps put narcolepsy in a good perspective. It also feels good to see someone else go through a similar process and come out okay. It takes her a really long time to come to terms with her diagnosis. I think she's had it for 4 or 5 years now and is still probably coming to terms with it in some ways. She realizes that she can't be the same person or have the same life she had expected, and then she realizes that's not necessarily a totally bad thing.

 

So, yeah, you could say that narcolepsy ruined your life. It removes the possibility of a life you might have had if you didn't have narcolepsy. But you can still have a really good life, and it won't necessarily be qualitatively worse than the alternative, which is impossible to know anyway and pointless to think about because it doesn't exist. I think we all have a lot to be grateful for, and it all depended upon thousands of random circumstances we happened upon in life, and for which we mostly don't have anyone to punch in the face and/or thank. Everyone in the world just has to make the most of their situation, despite the many things we can't control. I guess that maybe some people end up with better or worse situations overall, but when you think of your own compared to everyone else in the world, you might not be so bad off. That's what I tell myself, anyway. I hope that makes sense.

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Or I could put a big N on my punching bag and wail on it, haha. Yea, it's hard for me to accept my limited cognition because I was an out of shape, weird, social outcast most of my life. And it sucked. But I always told myself at least I've got my mind. That's something that can't be taken away from me, and one day I'll come on top of everyone who ever looked down on me. It just comes as a shock that it was hubris. That my mind was not immutable. That nothing is. Oh well. Maybe I'll learn to accept my derpy existence someday. But at the same time, I don't want to stop fighting. I'm just afraid that if I become complacent I will give up the part of me that wants to stare reality in the face and say "No"

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You don't have to accept a derpy existence or become complacent. You shouldn't. No one wants their brain to be f*cked up. I'm not talking about complacency, I'm talking about acceptance, of your current, imperfect, impermanent situation. You still get to decide what to do with your existence. I think that things will get better. I have to. And I have to work for it. That's not complacency.

 

I'd recommend you talk to your girlfriend, or someone, about feeling like you've lost your intelligence. Maybe the social outcast part too. Other people probably don't see it that way. It can really help to get some perspective.

 

(I've dealt with similar feelings, and it has helped me a lot to ask for other peoples' honest opinions. And, to consider how being a weirdo isn't really a bad thing, especially once you are on your own.)

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Well, I think I have officially decided to terminate my Xyrem treatment. The anxiety, coupled with some other strange psychiatric episodes have made this just too much to bear. Thanks for the support all of you guys have given me. I really wish I could stick with it, since I am having more moments of alertness these days, which has been really nice when they come. But when push comes to shove, I'd rather be sleepy and sane than wide awake and crazy. Coupled with the fact that my work is starting to scale back its labor force, this is no time for me to lose it. I may remove this thread later on, because I don't want to discourage any potential Xyrem takers. It's an amazing drug when it works, but sadly, it's just not for me. Onto the next treatment! (He said with half-hearted optimism)

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I think one of the cruelest parts of this disease is that one drug will work fantastically for one person, but turn the next person into a raving lunatic. If you read the medication poll threads every single one of them has more than one person saying that the drug in question is pure poison that ruined their life. While there are hundreds if not thousands of others who take each of those drugs successfully for extended periods with no side effects, and restoration of at least a semi-normal life.

 

The only thing that will ever really return us to normal function is either orexin supplementation or restoration of the damaged orexin generating cells. It is an unfortunate fact of life that neither of those are likely to come to fruition as they are not particularly fiscally promising for the pharmaceutical companies. For me Provigil is working pretty well. I have only been taking it a couple weeks, and just got a bump in my dose to 300mg at a follow up today. Hopefully it will continue to work for me. Only time will tell. I had the worst cataplexy I have ever had last week. It was also the first one I've had in at least 3 years. It came from a really intense emotional shock, but I really hope it isn't an omen of things to come.

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Well I guess I will leave this thread here for the sake of truthfulness, but to any potential Xyrem patients, do not let my experience discourage you. For every person it hinders, it probably helps 10! Always remember to approach new treatments with an open mind and don't dwell on the side effects, because they can becoem a self-fulfilling prophecy. For all I know, that's what happened here.

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One thing that Xyrem did do that will have a lasting positive effect is that it taught me how to sleep again. I've noticed narcoleptics fall into two categories. That is to say there are those who are always tired and can sleep and those who are always foggy and can't sleep. My theory is that some of us (the latter group) that went untreated for a real long while got so good at fighting the EDS that our natural response to sleepiness is to fight it, even if it is sleep we in fact desire.

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One thing that Xyrem did do that will have a lasting positive effect is that it taught me how to sleep again. I've noticed narcoleptics fall into two categories. That is to say there are those who are always tired and can sleep and those who are always foggy and can't sleep. My theory is that some of us (the latter group) that went untreated for a real long while got so good at fighting the EDS that our natural response to sleepiness is to fight it, even if it is sleep we in fact desire.

 

I was untreated for a decade, and I spent the last two or three years in a sleep and pain fog. My chronic pain is finally almost under control, and now I almost have my sleep under control. I still really can't sleep more than 6 hours at a time, but at least I don't look and feel like a zombie all of the time. 

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One thing that Xyrem did do that will have a lasting positive effect is that it taught me how to sleep again. I've noticed narcoleptics fall into two categories. That is to say there are those who are always tired and can sleep and those who are always foggy and can't sleep. My theory is that some of us (the latter group) that went untreated for a real long while got so good at fighting the EDS that our natural response to sleepiness is to fight it, even if it is sleep we in fact desire.

 

I agree, Xyrem hasn't helped much with my EDS... but sleeping through the night has been a God send.  I can not imagine going back to the the constant tiredness and then waking up all night long, over, over, over, and over again.  It's one thing to be tired and in a fog all day, but then not sleeping at night to top it off!  It was so frustrating.

 

Xyrem also made my depression go away and that in its self is amazing!   

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