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Cant Get Xyrem To Work


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#1 iwant2sleep

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Posted 11 November 2012 - 02:32 AM

I have woken up every hour since i was 16. Never thought it was narcalepsy because i can controll when and where i fall asleep during the day, even though staying a wake for more than 8 hours at a time is excruciating. I thought i was tired during the day cause i didnt sleep normally at night. I got a positive narcalepsy diagnosis on my MSLT about 9 months ago. I went to a neurologists, who doesnt ever actually see me, he just sends in his Nurse Practitioner, and he(her) gave me Xyrem. I thought I would finally be able to sleep through the night. Well, after trying for 4 month on the 9 mg total per night, i gave up. I sometimes would sleep for 3 hours, but then i would wake up and couldnt get back to sleep for hours and i would just be not sober, or i would just start waking up every hour again if i did fall back asleep quickly. Then there were nights that i scared the hell out of my husband. It seemed i would wake up and go outside to smoke and start being in a convulsive like state where i would have a hard time responding to him when he tried to get me to come back to bed, even though i could barely keep myself in the chair, like i just didnt want to go back to bed for some reason. I know when i slept on xyrem it was better sleep because i could stay awake with my 250 mg of Nuvigil so much easier during the day. Too many bad things happened on xyrem though. It was harder for me to get up for work in the morning because i would sleep a couple hours at a time sometimes so i didnt have that internal hourly alarm clock anymore. Im just sad and depressed that nothing will ever seem to work for me. I just have to go back to trying hard to function during the day again. At least that way im making it to work on time and not scaring my husband at night. Just depressing that i thought i might get better and be more functional, and it was all just a huge insane roller coaster that i finally had to get off of. At least there was some stability before....
any comments or suggestions for me would be awesome. Dont really know what to do anymore. Pretty sad about things at this point.

Thanx

#2 Megssosleepy

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Posted 13 November 2012 - 02:47 PM

I have woken up every hour since i was 16. Never thought it was narcalepsy because i can controll when and where i fall asleep during the day, even though staying a wake for more than 8 hours at a time is excruciating. I thought i was tired during the day cause i didnt sleep normally at night. I got a positive narcalepsy diagnosis on my MSLT about 9 months ago. I went to a neurologists, who doesnt ever actually see me, he just sends in his Nurse Practitioner, and he(her) gave me Xyrem. I thought I would finally be able to sleep through the night. Well, after trying for 4 month on the 9 mg total per night, i gave up. I sometimes would sleep for 3 hours, but then i would wake up and couldnt get back to sleep for hours and i would just be not sober, or i would just start waking up every hour again if i did fall back asleep quickly. Then there were nights that i scared the hell out of my husband. It seemed i would wake up and go outside to smoke and start being in a convulsive like state where i would have a hard time responding to him when he tried to get me to come back to bed, even though i could barely keep myself in the chair, like i just didnt want to go back to bed for some reason. I know when i slept on xyrem it was better sleep because i could stay awake with my 250 mg of Nuvigil so much easier during the day. Too many bad things happened on xyrem though. It was harder for me to get up for work in the morning because i would sleep a couple hours at a time sometimes so i didnt have that internal hourly alarm clock anymore. Im just sad and depressed that nothing will ever seem to work for me. I just have to go back to trying hard to function during the day again. At least that way im making it to work on time and not scaring my husband at night. Just depressing that i thought i might get better and be more functional, and it was all just a huge insane roller coaster that i finally had to get off of. At least there was some stability before....
any comments or suggestions for me would be awesome. Dont really know what to do anymore. Pretty sad about things at this point.

Thanx


Before Xyrem I was like you waking up pretty much every hour, sometimes more then once an hour. I have been on 4.5x2 for a month now, and Last week I FINALLY started sleeping a solid 4 hours on each dose... I didnt need to used any alarms until last week, because I would wake before my dose was due... now I have to set the alarms... and my puppy acts as a back up alarm if for some reason I don't wake.

If you read some of my earlier post on Xyrem I complained of not sleeping long enough ect ect... It does suck to go back to having to peel myself out of bed in the am but I do so knowing I got a solid 8 hours!!

Have you talked to a Xyrem nurse about the sleep walking? You definitely should bring that up! You should not get out of bed while on Xyrem until there is an emergency!

I do want to mention my EDS has not gotten any better... its actually worse many days... but that could be due to being stressed

Good Luck!

#3 iwant2sleep

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Posted 14 November 2012 - 08:48 AM

Before Xyrem I was like you waking up pretty much every hour, sometimes more then once an hour. I have been on 4.5x2 for a month now, and Last week I FINALLY started sleeping a solid 4 hours on each dose... I didnt need to used any alarms until last week, because I would wake before my dose was due... now I have to set the alarms... and my puppy acts as a back up alarm if for some reason I don't wake.

If you read some of my earlier post on Xyrem I complained of not sleeping long enough ect ect... It does suck to go back to having to peel myself out of bed in the am but I do so knowing I got a solid 8 hours!!

Have you talked to a Xyrem nurse about the sleep walking? You definitely should bring that up! You should not get out of bed while on Xyrem until there is an emergency!

I do want to mention my EDS has not gotten any better... its actually worse many days... but that could be due to being stressed

Good Luck!



I am glad that it started working for you like that. I really dont care about the tiredness during the day, its just so metally aggrevating to wake up over and over again.

I did however try for 3 months on the 9 g, with still no good improvement. It is so engrained in me to get out of bed when i wake up, that i cant stop. I seam to not have the ability to make a decision not to get out of bed when im being pulled out of sleep like that, im up and out of bed before i even think about how i should not get up and out of bed. Im not sleep walking though, I am fully awake and i remember everything that happens.

My EDS was better, but i still wanted to take a nap because that too is engrained in me. I just have to work hard to change habbits i guess. I apreciate your reply. I do feel quite alone in this. My Husband is so sweet but he tries to compare his tiredness dring thye day to mine, and that i should just try to fight through it like he does. Maybe he does get as tired as i do, i dont know. I just feel like maybe i am just week- sometimes.

#4 Megssosleepy

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Posted 15 November 2012 - 12:00 PM

My EDS was better, but i still wanted to take a nap because that too is engrained in me. I just have to work hard to change habbits i guess. I apreciate your reply. I do feel quite alone in this. My Husband is so sweet but he tries to compare his tiredness dring thye day to mine, and that i should just try to fight through it like he does. Maybe he does get as tired as i do, i dont know. I just feel like maybe i am just week- sometimes.


Unless your hubby has N he prolly isnt as tired as you. I find its just hard to know how tried we are when they have never experienced it... you are not week! You shouldn't be so hard on yourself!

I understand your frustration... the reason I went to the sleep doc was because I was waking up constantly... never ever thought of N, even when he said N I was like :wacko:

I am trying to think of a way to train yourself to stay in bed... what if you put a lock on your bedroom door (where you need a key to open it) I bet if you popped out of bed and went to open the door you would remind yourself to go back to bed! Maybe others will have better suggestions. You defiantly need to figure out a way to stay put... It is all about training, I think thats why it took me so long to fall asleep and stay asleep... now that Ive trained myself it just happens.

What do the people at Xyrem say? Where they helpful at all?

#5 iwant2sleep

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Posted 20 November 2012 - 02:44 PM

Unless your hubby has N he prolly isnt as tired as you. I find its just hard to know how tried we are when they have never experienced it... you are not week! You shouldn't be so hard on yourself!

I understand your frustration... the reason I went to the sleep doc was because I was waking up constantly... never ever thought of N, even when he said N I was like Posted Image

I am trying to think of a way to train yourself to stay in bed... what if you put a lock on your bedroom door (where you need a key to open it) I bet if you popped out of bed and went to open the door you would remind yourself to go back to bed! Maybe others will have better suggestions. You defiantly need to figure out a way to stay put... It is all about training, I think thats why it took me so long to fall asleep and stay asleep... now that Ive trained myself it just happens.

What do the people at Xyrem say? Where they helpful at all?



I tried tieing myself to the bed- which is actually kind of rediculous- hopeing i would realize what i was doing and go back to bed, but i would just go and smoke anyway. i dont know why its so hard to just give into sleep when im on this stuff. I talked to the jazz pharmacy and gave them all the information about my trouble. They recomend possibly taking a larger dose first then a smaller one for the second dose. I dont have a neurologist right now though, cause my other one never saw me. So my perscription is on hold untill i find someone. Hopefully i will figure this out soon. Thanks for your help too. i probobly wouldnt have talked to them if you hadnt suggested it.