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Anxiety With Xylem


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#1 catsmeow

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Posted 01 October 2012 - 09:22 PM

I have been taking Xyrem for about 3.5 months now. I am finally starting to get some sleep. Before I'd wake about 122 times per night, and hadn't gotten into deep sleep for over 20 years. Xyrem gets me between 5-6.5 hours of sleep a night, which is amazing! But, I wake up with extreme anxiety which sometimes dissipates by noon, but often lasts all day. I am not prone to anxiety, but this is driving me crazy. I feel like I am going to jump out of my skin. I am an RN, and cannot do my job when I am shaking like a leaf. I desperately need the sleep that xyrem gives and I am healthier than I have been in years. I have even lost 25 lbs! Will the anxiety eventually stop? My doctor prescribed sonata on top of the xyrem to help, but it doesn't help much and I don't want to become addicted. Any advice?

Also, my muscles all tense up after I take the xyrem while I am waiting for it to kick in, and I feel pain in my bottom, like an anal spasm. :wacko:

#2 Hank

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Posted 02 October 2012 - 06:05 AM

I have been taking Xyrem for about 3.5 months now. I am finally starting to get some sleep. Before I'd wake about 122 times per night, and hadn't gotten into deep sleep for over 20 years. Xyrem gets me between 5-6.5 hours of sleep a night, which is amazing! But, I wake up with extreme anxiety which sometimes dissipates by noon, but often lasts all day. I am not prone to anxiety, but this is driving me crazy. I feel like I am going to jump out of my skin. I am an RN, and cannot do my job when I am shaking like a leaf. I desperately need the sleep that xyrem gives and I am healthier than I have been in years. I have even lost 25 lbs! Will the anxiety eventually stop? My doctor prescribed sonata on top of the xyrem to help, but it doesn't help much and I don't want to become addicted. Any advice?

Also, my muscles all tense up after I take the xyrem while I am waiting for it to kick in, and I feel pain in my bottom, like an anal spasm. :wacko:



Yikes- so sorry. Definitely no fun- you had me at anal spasm.


Having a relaxing bed time is really important to me since on Xyrem. If I feel relaxed going to sleep, I know the next day will start off well. Anxiety is such a drag

Are you on a stimulant also, or Xyrem only. I just reduced my Adderall dose because I felt over stimulated. Maybe not so for you.

Others will have good recommendations for sure. We have a lot to be anxious about. Narcolepsy creates problems that cause can anxiety, and it can become a viscious cycle. As my N and C improve, I have fewer events to be anxious about. My life is beginning to feel easier to manage.

My doctor also prescribed Sonata and Xyrem. I did discontinue Sonata when I moved up to the 9g nightly dose. I still don't fall asleep fast and I don't sleep very well the first 2.5 hrs, but the 2nd half is good- and my EDS is greatly improved. I am sleeping fewer hours before, but getting more from them.

#3 catsmeow

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Posted 02 October 2012 - 08:53 AM

I'm sorry you're feeling anxiety at a time when you should be feeling refreshed. Have you tried any anxiety reducing activities that help? Meditation, deep breathing, herbal tea?


I have, and I exercise as well, but nothing seems to help.

#4 catsmeow

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Posted 02 October 2012 - 08:55 AM

Yikes- so sorry. Definitely no fun- you had me at anal spasm.


Having a relaxing bed time is really important to me since on Xyrem. If I feel relaxed going to sleep, I know the next day will start off well. Anxiety is such a drag

Are you on a stimulant also, or Xyrem only. I just reduced my Adderall dose because I felt over stimulated. Maybe not so for you.

Others will have good recommendations for sure. We have a lot to be anxious about. Narcolepsy creates problems that cause can anxiety, and it can become a viscious cycle. As my N and C improve, I have fewer events to be anxious about. My life is beginning to feel easier to manage.

My doctor also prescribed Sonata and Xyrem. I did discontinue Sonata when I moved up to the 9g nightly dose. I still don't fall asleep fast and I don't sleep very well the first 2.5 hrs, but the 2nd half is good- and my EDS is greatly improved. I am sleeping fewer hours before, but getting more from them.



I take ritilin as needed, usually just when I am going to drive a long distance, or I need to study all day. But the anxiety is from the xyrem. It is there whether I take the stimulant or not. I tried one night without xyrem, but didn't sleep at all, but the anxiety was gone. I am just wondering it that will eventually dissipate?

#5 Megssosleepy

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Posted 02 October 2012 - 10:07 AM

I wish there was a magic cure for all of this. I have recently found out that mixing the meds that help with anxiety may be a big no no for some.

Something I have found to help and you have prolly read this elsewhere is drink a meal supplemental drink right when you wake up, and taking a multi. The Xyrem zaps your body of lots of nutrients/vitamins/minerals and makes us unbalanced in the am. I find helping my body ease into the day with the drink helps my stomach, head, and brain. Also I just recently got some really wonderful tea... they actually have some different ones for relaxing but this one helps with the balance between potassium and sodium. Its called Get Restored (republic of teas) Also you may want to go to your friendly natural food store and see what natural options they have for you.

I have found good sleep helps us become aware of the world... and maybe the anxiety stems from that. I think that in time it will pass, just try to stay calm, take deep breaths often, and drink warm tea! Oh and watch your caffeine intake!

#6 catsmeow

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Posted 02 October 2012 - 10:52 AM

I wish there was a magic cure for all of this. I have recently found out that mixing the meds that help with anxiety may be a big no no for some.

Something I have found to help and you have prolly read this elsewhere is drink a meal supplemental drink right when you wake up, and taking a multi. The Xyrem zaps your body of lots of nutrients/vitamins/minerals and makes us unbalanced in the am. I find helping my body ease into the day with the drink helps my stomach, head, and brain. Also I just recently got some really wonderful tea... they actually have some different ones for relaxing but this one helps with the balance between potassium and sodium. Its called Get Restored (republic of teas) Also you may want to go to your friendly natural food store and see what natural options they have for you.

I have found good sleep helps us become aware of the world... and maybe the anxiety stems from that. I think that in time it will pass, just try to stay calm, take deep breaths often, and drink warm tea! Oh and watch your caffeine intake!



Thank you! That is helpful. I think also, I may be having a bit of a low blood sugar problem when I first wake up because I eat so early. I'll try keeping a supplement drink or energy bar by my bed for when I first wake up.

#7 DeathRabbit

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Posted 02 October 2012 - 01:37 PM

Thank you! That is helpful. I think also, I may be having a bit of a low blood sugar problem when I first wake up because I eat so early. I'll try keeping a supplement drink or energy bar by my bed for when I first wake up.


Try 5-htp. I have found that vitamin supplement to be a good mood stabilizer. It might be placebo effect, I dunno, but it works for me, haha. I think the anxiety might be just from increased mental alacrity. I used to have tons of anxiety issues, but now I hardly have any because I am usually too foggy to identify stressors. On the rare days I have where I feel normal, my anxiety shoots through the roof, even sans Adderall and I havent started Xyrem yet. I think after being so low energy and kind of out of it, the mind has trouble readjusting to complete consciousness.

#8 tdmom

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Posted 02 October 2012 - 08:23 PM

Anxiety and Xyrem....Anxiety is a side effect of Xyrem. My son has narcolepsy, not me. he is 17, was dx at 15. he was on Provigil and Prozac (for cataplexy). He started Xyrem a year ago and had every side effect. Finally 6 months onto it his Dr felt like they could withdraw the Provigil and prozac as the Xyrem was working for both getting enough sleep and the cataplexy.About half way through the Prozac wean my son started getting irritable and I stopped as he had SATs and end of his jr year to deal with. We finished at the beginning of the summer and he was a wreck. Anxious and depressed. the Prozac had been masking this side effect. I spoke to his Dr, and he started Cognitive Behavior therapy. No help. I spoke to Mali, Dr Mignott's assistant at Stamford whom I had met at a Narcolepsy research update. I spoke to the people at Jazz. Upshot is some people can get past the anxiety, some can't, and need to take something like prozac or lexapro. Some people stop Xyrem for a couple weeks and restart at a lower dose and titrate up real slow. I would talk with your Dr and see what they suggest. I am an RN also, best of luck to you!

I have been taking Xyrem for about 3.5 months now. I am finally starting to get some sleep. Before I'd wake about 122 times per night, and hadn't gotten into deep sleep for over 20 years. Xyrem gets me between 5-6.5 hours of sleep a night, which is amazing! But, I wake up with extreme anxiety which sometimes dissipates by noon, but often lasts all day. I am not prone to anxiety, but this is driving me crazy. I feel like I am going to jump out of my skin. I am an RN, and cannot do my job when I am shaking like a leaf. I desperately need the sleep that xyrem gives and I am healthier than I have been in years. I have even lost 25 lbs! Will the anxiety eventually stop? My doctor prescribed sonata on top of the xyrem to help, but it doesn't help much and I don't want to become addicted. Any advice?

Also, my muscles all tense up after I take the xyrem while I am waiting for it to kick in, and I feel pain in my bottom, like an anal spasm. :wacko:



#9 catsmeow

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Posted 07 October 2012 - 06:47 PM

I have been taking Xyrem for about 3.5 months now. I am finally starting to get some sleep. Before I'd wake about 122 times per night, and hadn't gotten into deep sleep for over 20 years. Xyrem gets me between 5-6.5 hours of sleep a night, which is amazing! But, I wake up with extreme anxiety which sometimes dissipates by noon, but often lasts all day. I am not prone to anxiety, but this is driving me crazy. I feel like I am going to jump out of my skin. I am an RN, and cannot do my job when I am shaking like a leaf. I desperately need the sleep that xyrem gives and I am healthier than I have been in years. I have even lost 25 lbs! Will the anxiety eventually stop? My doctor prescribed sonata on top of the xyrem to help, but it doesn't help much and I don't want to become addicted. Any advice?

Also, my muscles all tense up after I take the xyrem while I am waiting for it to kick in, and I feel pain in my bottom, like an anal spasm. :wacko:




An update: I skipped my xyrem for 2 days and took ambien to sleep just to see what would happen. The shaking finally stopped midway through the second day. But after the second night without xyrem, I could barely function. I was so sleepy, I couldn't concentrate on anything, and I ached all over. I had forgotten that is how I felt. I realize now that the xyrem is helping me to get deep sleep and my all over daily pain level had decreased tremendously. I take mobic for back pain, but had been taking the full prescription dose of ibuprofen on top of it for my aches. I haven't done that in months! After taking xyrem last night, my pain is nearly gone, and while there was some anxiety this morning, it wasn't as much as before. So I am going to try to skip the xyrem one night a week to give my nerves a break to recover. I really didn't realize how much of a difference it had been making!