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Xyrem Diary


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#61 DeathRabbit

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Posted 24 January 2013 - 02:37 PM

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)



#62 MINItron

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Posted 24 January 2013 - 10:56 PM

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.



#63 DeathRabbit

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Posted 25 January 2013 - 06:03 PM

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.



#64 DeathRabbit

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Posted 25 January 2013 - 06:15 PM

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.



#65 MINItron

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Posted 25 January 2013 - 10:58 PM

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. 



#66 Megssosleepy

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Posted 30 January 2013 - 03:59 PM

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!