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Restarting Xyrem?


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#1 N50+

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Posted 13 February 2013 - 10:26 PM

I did xyrem for about 6 months, stopped due to extreme anxiety. Thinking back, I stopped taking klonopin and Effexor at the same time I started xyrem. Wondering if that was what caused the bad anxiety?
Has anyone stopped xyrem for like a year and then restarted? How did it go for you.
Getting by on Ritalin but the up and down emotional roller coaster ride every day gets harder to take with each passing day.
Sure would appreciate any feedback.
N w/o C.

#2 dailee

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Posted 14 February 2013 - 01:23 AM

I took Xyrem for 5 years with great results for several years but less towards the end. I stopped for 18 months, and then restarted. I didn't have immediate good results. At first at the lower doses it felt like I was taking nothing. I couldn't sleep. At higher doses I still couldn't sleep but it made me cry or want to eat everything. When I woke up in the morning I felt alittle nervous or anxious which I didn't experience when I took it in the past. Since I couldn't sleep, I continued taking regular Ambien which only lasted about 3-4 hours then I took 1 dose of Xyrem  at 3 g. When I tried taking 2 doses of Xyrem I had horrible acid reflux.

 

Nothing much improved until I asked to switch from Ritalin to Adderall and from Zoloft to Effexor. Then over time, I started adding 2nd dose of Xyrem a few nights a week and increased at 3.75 g. 18 months later, I am now doing better than I have in the past 3-4 years but still no where near I was when I first began Xyrem for the first couple of years.

 

I have wondered in the past if the Xyrem formula was changed at some point and that is why it no longer works like it once did. However, I just assumed that my body developed a tolerance. I think for me it has taken a year or more to start seeing improvements due to Xyrem and I have lost 30 pounds in the past 6 months due to Effexor and Xyrem.

 

I know this is off the topic from Xyrem but I have frequently had trouble w/varying severity of head pressure and tingling feet. Have others had this also? .     



#3 DeathRabbit

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Posted 14 February 2013 - 02:40 PM

I had a lot of anxiety problems with Xyrem as well. It's a common thread. I'm coming to believe it's strongly contraindicated for people who have ever struggled with anxiety prior to Xyrem treatment. If you have those tendencies at all, there's a good chance Xyrem will cause you to fall off the anxiety wagon again, so to speak.



#4 N50+

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Posted 14 February 2013 - 08:54 PM

Dailee, I had a very similar experience to your second time with my first time. Suddenly crying for no reason while laying in bed before falling to sleep, getting up at second dose time with a voracious appetite and still lost weight (35 pounds in just over 2 months). I have been thinking the extreme anxiety was because I stopped Effexor. Head pressure for me relates to headaches which I have had frequently for as long as I can remember. But they seemed to stop while on Xyrem. Ringing ears however, OMG!! My hands were tingling on and off before Xyrem and didn't change when taking it so for me, I wouldn't consider it causal.

D.R., I never had any real anxiety issues prior, this was serious and scared the crap outta me. I literally could do nothing but hold my head in my hands trying to not completely lose it. It was as close as I ever want to be to a nervous breakdown. That's when I quit Xyrem and I still think it sucks because I actually woke up before my alarm and felt rested perhaps for the first time in my entire life when taking Xyrem!

#5 DeathRabbit

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Posted 15 February 2013 - 10:03 AM

Dailee, I had a very similar experience to your second time with my first time. Suddenly crying for no reason while laying in bed before falling to sleep, getting up at second dose time with a voracious appetite and still lost weight (35 pounds in just over 2 months). I have been thinking the extreme anxiety was because I stopped Effexor. Head pressure for me relates to headaches which I have had frequently for as long as I can remember. But they seemed to stop while on Xyrem. Ringing ears however, OMG!! My hands were tingling on and off before Xyrem and didn't change when taking it so for me, I wouldn't consider it causal.

D.R., I never had any real anxiety issues prior, this was serious and scared the crap outta me. I literally could do nothing but hold my head in my hands trying to not completely lose it. It was as close as I ever want to be to a nervous breakdown. That's when I quit Xyrem and I still think it sucks because I actually woke up before my alarm and felt rested perhaps for the first time in my entire life when taking Xyrem!

I understand. I think it induced an almost Paranoid Schizophrenic type state a few times. I kept on having horrible visions of my skin melting off. Even having been off for 4 weeks now, I still keep having anxiety attacks, though they are less psychotic feeling now.



#6 mckenziee

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Posted 25 February 2013 - 03:46 PM

i didn't stop my xyrem 'for a year' but i did take it inconsistently (one or two doses here and there) due to being in college, and then began again. When i actually was consistent with taking two doses, and getting the rest, i felt like it wore off  way sooner then it should!- like after two hours...because i literally would wake up 2/2.5 hrs later even on 4.0 mg! and toss and turn especially towards the morning. i've consistently been on the same xyrem dosage for about 2 months and i have yet to get the restful sleep for 4 hrs/being able to wake up to/before alarm...and the anxiety/nervousness is rediculous. i tried to explain it to my mom... it was like, even though i knew i wasn't leaving until an hour later, my body still got frazzled like if i were SUPER-rushing or something! weird... and sometimes when i'm by myself and i find something funny or am extremely happy, it's like a giggle i feel deep down in my stomach, like i get really excited even though it's not a big deal... i know that sounds SO weird but dont know how else to explain it. 



#7 Hank

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Posted 23 May 2013 - 09:31 AM

I did xyrem for about 6 months, stopped due to extreme anxiety. Thinking back, I stopped taking klonopin and Effexor at the same time I started xyrem. Wondering if that was what caused the bad anxiety?
Has anyone stopped xyrem for like a year and then restarted? How did it go for you.
Getting by on Ritalin but the up and down emotional roller coaster ride every day gets harder to take with each passing day.
Sure would appreciate any feedback.
N w/o C.


I hope you are doing well now. If you stopped Klonopin abruptly, that would certainly explain your anxiety. This website gives an explanation why www.recovery-road.org. It should be discontinued by a slow taper over at least 6 months. Effexor also requires a slow taper over a shorter period of time. Hope you are doing better.

#8 August59

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Posted 12 November 2013 - 08:48 PM

I think I am going to start it again for the 4th time. The first 2 times were great, but the 3rd time was during a time of great stress. I could take it for 4 nights and would have to quit for four nights. Those nights were Ambien and .5mg of Klonopin. I could still take .5 mg of Klonopin during the day, but not at night with the Xyrem. Even with Klonopin during the day I still could only take it for 4 days.

 

She has me on Cymbalta now, with Ambien and Neurontin. I've had 4 sleep studies and I've went into deep sleep on any of them. The 3rd one I was on Xyrem during the study and only got 9 mins. of Deep Sleep. I only get 4 hours of sleep with the generic 10mg Ambien and 1200mg of Neurontin. I might try to talk her into staying on the Ambein and see if she will prescribe the new Intermezzo (sublingual Ambien that starts in about 10 mins. and last about 3 hours.). It comes in 3.5mg for women and 5 mg for men). It is also available in the UK under the Edluar. I bet my insurance want cover it!!

 

Back to my last Xyrem fiasco. My cortisol had become all out of whack. It suppose to be high in the morning and trend lower till bedtime. Mine was at it's lowest at wake up time and went really high all the way past midnight. That's why I don't go to sleep till 4am or 5am. I have some 5mg. hydrocortisone tablets that I'm going to take in the morning and some phosphatylserine for the afternoon and night since it lowers cortisol. Try it for a few weeks before I stat Xyrem again.



#9 IdiopathicHypersomniac

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Posted 12 November 2013 - 09:51 PM

I started Xyrem this week and it is junk -- I was getting brain zaps at just 1 gram!  They felt like seizures, and the drug didn't even sedate me.  Had to stop.  This is the miracle drug for cataplectic narcolepsy?  Good grief.  Now I really feel hopeless.  I thought this stuff would make me normal again.

 

I would recommend Edluar 10mg and 5mg strengths.  It is available in the US under that trade name.  I use it, but we call it Sublinox.  You can even take 10 and then another 10 after 4 hours, or Ambien CR 12.5mg.  Lunesta, which is going generic soon, is good also.

 

That's a very high dose of Gabapentin you're on.



#10 N50+

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Posted 12 November 2013 - 09:57 PM

On my overnight sleep study, I got a whopping 30 seconds at stage 3! No wonder I'm dead tired when I get up. During my MSLT, I was on Effexor which I've heard is supposed to suppress REM - I had SOREM 2 of 5 naps and was asleep in less than 8 minutes every time. That was after sleeping nearly the whole time BETWEEN each nap!
I'm currently on vyvanse and bupropion. It is not as good as xyrem was at its best but WAY better than Ritalin at its best or xyrem at its worst which was so bad I had to stop. Having a couple bottles left, I find I can take it once a week or so when I am really exhausted and it seems to help for a few days without the side effects as before when taking it every night. It will be all gone soon enough then I will have to decide if I want to have that discussion with my doc again. I guess it depends on how long the vyvanse continues to work as well as it does now.

#11 JCM3654

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Posted 12 November 2013 - 10:55 PM

I stopped taking Xyrem about 6 months ago because of severe anxiety. During this time I also discontinued Klonopin and Remeron which could have contributed to the anxiety increase. I restarted Xyrem a couple months ago because the fatigue just became too much to deal with while working full time. After restarting the Xyrem, I felt the same feelings of anxiety. My doctor had me reduce my dose to 1.5 g twice a night. I gradually worked up to 2.5 g twice a night. I was taking 4.5 g twice a night when my anxiety was so unmanageable. I find that at 2.5 g twice a night I sleep decently enough to function and I don't have unmanageable anxiety. I am able to function without a stimulant (which also makes my anxiety really bad) and without any additional medications for anxiety. Good luck to you!



#12 b.chrissie@yahoo.com

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Posted 15 November 2013 - 10:34 AM

I took Xyrem for 5 years with great results for several years but less towards the end. I stopped for 18 months, and then restarted. I didn't have immediate good results. At first at the lower doses it felt like I was taking nothing. I couldn't sleep. At higher doses I still couldn't sleep but it made me cry or want to eat everything. When I woke up in the morning I felt alittle nervous or anxious which I didn't experience when I took it in the past. Since I couldn't sleep, I continued taking regular Ambien which only lasted about 3-4 hours then I took 1 dose of Xyrem  at 3 g. When I tried taking 2 doses of Xyrem I had horrible acid reflux.

 

Nothing much improved until I asked to switch from Ritalin to Adderall and from Zoloft to Effexor. Then over time, I started adding 2nd dose of Xyrem a few nights a week and increased at 3.75 g. 18 months later, I am now doing better than I have in the past 3-4 years but still no where near I was when I first began Xyrem for the first couple of years.

 

I have wondered in the past if the Xyrem formula was changed at some point and that is why it no longer works like it once did. However, I just assumed that my body developed a tolerance. I think for me it has taken a year or more to start seeing improvements due to Xyrem and I have lost 30 pounds in the past 6 months due to Effexor and Xyrem.

 

I know this is off the topic from Xyrem but I have frequently had trouble w/varying severity of head pressure and tingling feet. Have others had this also? .     

Dailee...how long did it take you to titrate on the Xyrem... I am struggling here.