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My Time With Xyrem

xyrem medication prescription esd bpd

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#21 IdiopathicHypersomniac

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Posted 23 September 2013 - 05:02 PM

You have to use a stimulant while using Xyrem, and it can take up to 8 weeks for EDS to improve.  Just stay on the same dose and give it time.



#22 DeathRabbit

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Posted 23 September 2013 - 05:24 PM

So with my doctor's permission I've been on 3.5g 2x a night for the past 4 days and I feel completely different from when I was taking 3.25g 2x a night last week. First off I'm only getting a little over 6 hours of sleep on this new dose (was getting almost 8 hours of sleep on the 3.25g 2x a night), have no energy and feel nauseated when waking up. I also have no sex drive and I feel completely numb to the world. I'm afraid I am either seriously depressed on this dose or becoming psychotic so I will go back to taking the 3.25g 2x a night. I also called my doctor to schedule an appointment later this week but has anyone ever had a complete change in symptoms when changing Xyrem doses?

 

This is kinda the exact sorta type thing I went through. I felt like I was going insane. I first felt it when increased my titration schedule, and then when Jazz was late with a shipment and I had to do without for 3 days, when I restarted I really went off my nut. All of January was utter misery. Could barely get 6 hours a night and then when I woke up I felt like slitting my wrists and then would have panic episodes for the rest of the day. You are of course free to do as you like and everyone is different and has different experiences and responses to drugs, but if I ever attempt Xyrem again, I'm starting at the base dose and spending a month at each level.



#23 DeathRabbit

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Posted 23 September 2013 - 05:25 PM

You have to use a stimulant while using Xyrem, and it can take up to 8 weeks for EDS to improve.  Just stay on the same dose and give it time.

You don't have to, but many people supplement with stimmies. However, some patients feel the Xyrem works well enough on it's own. It's another one of thsoe "it depends" situations. I cannot tolerate stimulants at all as they make me completely manic until I promptly crash into utter stupefaction.



#24 EskewCG

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Posted 23 September 2013 - 05:34 PM

DeathRabbit, how did you recover from the symptoms you experienced when you got the new shipment of Xyrem? I am really lost right now because if I take more than 3.5g 2x a night I'm afraid my symptoms will worsen but if I go back down to 3.25g 2x a night I won't get very much sleep.

Saying I'm frustrated is an absolute f***ing understatement. Within the last two weeks I went from feeling so great on the Xyrem that I cried at night (because I was getting restful sleep) to now feeling almost not human because I feel no emotions and don't want to deal with anyone (thank god my parents are gone for the week).



#25 DeathRabbit

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Posted 23 September 2013 - 05:47 PM

I didn't. I quit the Xyrem and I'm on trazodone and still taking 1mg of Xanax daily to combat what Xyrem did to me. Not saying it was a bad drug, but it certainly didn't work for me and I think it gave me an almost PTSD response which I believe is why the anxiety is still here. Damn anxiety feedback loops. Sorry it isn't working out for you :/ . All I can say is that by and large, most successful experiences with Xyrem were when people titrated extremely slowly and and steadily. Doesn't always hold true. Meg seems to be able to mess with her dosage without any repercussion, and I have known bodybuilders that illegally absued GHB in a sporadic manner and none of them had issues. But I believe the tortoise usually beats the hare in the case of Xyrem. With any luck, all the gov't funding being dumped into Orexin agonists will soon pay off and all this todo abotu Xyrem will be a moot point. But you might try perhaps a low dosage of one of the vigil drugs in the morning perhaps. Perhaps a non benzodiazepene class anxiolytic like buspar could be used to help you sleep more at night. I think you are doing the right thing by heading back to the doc. You might even decide to temporarily drop the Xyrem and then maybe try again when you get your head screwed back on again.



#26 EskewCG

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Posted 23 September 2013 - 06:06 PM

Wow man, thanks for the great feedback. It's just terrible how one minute a medication is working then a few days later all hell breaks loose. Over the past year I've tried trazodone, flexeril, seroquel, lunesta, ambien and xanax and all were unable to get me adequate sleep at night. Ambien CR was able to knock me out for 8-9 hours a night but gave me severe brain fog and I still had no energy on it. When I didn't have xyrem last week for a few days I wasn't able to fall asleep on my own so I took ambien to go to bed and was back to feeling like my *BEEP*ty old self again. 

When you stopped taking Xyrem at night were you able to fall asleep on your on or did you have to take other medications?



#27 DeathRabbit

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Posted 23 September 2013 - 11:32 PM

Over time, I've gotten better at sleeping. I think part of it you have to learn not to fight sleep. We spend so much time fighting sleep that I think it eventually becomes hard to lay down our sword at bedtime and give in to the sandman. TBH, I've been on and off a host off different meds sicne Xyrem. A lot were geared towards controllign my headaches but they finally seem to be going away all on their own.



#28 EskewCG

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Posted 24 September 2013 - 08:52 AM

Gotcha. Well last night I decided not to take the Xyrem but still had to take two 1mg Lunesta and 0.25g of xanax in order to go to sleep. I actually feel much more "normal" today than the past few days and am going to see my psychiatrist within the next two days. I personally feel I am done with Xyrem due to the f***ing ludicrous price that it costs and also the fact that I've seen what negative symptoms it can cause me.

Luckily, I decided to take this semester off from school so I have time to sample other sleep medications and see which ones work for me. I am gonna ask my doctor for some samples of Silenor, Sonata and Restoril whenever I meet with him next. Anyone have any experience with trying these medications?



#29 DeathRabbit

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Posted 24 September 2013 - 10:47 AM

The price is pretty obscene. It's like latinum from Star Trek. I'd be lying if I said that didn't play a role in my decision to quit as well. I figured that 6k a month could only go on for so long before my job trumped up some reason to fire me. If it had been the miracle cure, it might have been worth the risk.



#30 Megssosleepy

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Posted 24 September 2013 - 03:25 PM

When I first started Xyrem it was a very slow and painful process.  It took months to tirate.  I think I mentioned in my earlier post that I took it for a year before I had to stop.  If I could take it again every night I would, but my body wont let me.  I know that it is best to take it regularly.

 

I was more or less trying to say there are other options that can be discussed with a Doc if needed.  

 

 

 

When I was off Xyrem I had a terrible time sleeping on my own, but that was normal before my Dx.  I tried a few different drugs but decided on Trazodone.  It took a couple of weeks to really sleep well on it, but once I did I could stay asleep most of the night.  It also didn't get me medicine head the next day. 



#31 EskewCG

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Posted 24 September 2013 - 06:01 PM

Did either of you stop taking Xyrem cold turkey or did you slowly taper off?

My psych doc hasn't called me back yet but I'm feeling very apathetic and numb with this being my first day not taking Xyrem in over three weeks. I really don't want to take any Xyrem the rest of this week and see how I feel but god damn it is a *BEEP* trying to titrate different medications.



#32 EskewCG

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Posted 25 September 2013 - 05:34 PM

Hey DeathRabiit, when you missed those 3 days of Xyrem and then got the new shipment, did you go back on the dose you were regularly taking or did you take a slightly lower dose? I've been off Xyrem for the past two nights and still feel very strange. I was reading stories of people and their Xyrem experiences and I think I'll go back to a lower dose tonight and see how I feel. Like I said last week I was on 3.25g 2x a night and tonight I'm going to try 2.75g 2x a night and see how I feel. See you guys on the other side.



#33 Megssosleepy

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Posted 26 September 2013 - 02:51 PM

Its okay to go cold turkey (I worried about that too).  When I started back (after two months) I was told to start at 2.5x2 and then 3.0x2 the next night ect... 

 

If you have only been off it a couple of days you should be good to start back at your normal dose... but it sounds like you may want to stay off it till you can talk to your doc. 



#34 DeathRabbit

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Posted 27 September 2013 - 10:47 AM

Hey sorry I didn't reply. Yeah, when I went off and back on was when I started to have serious issues. But everyone is different. By all means, my fate is not guaranteed to be yours.



#35 EskewCG

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Posted 27 September 2013 - 01:02 PM

All good. I went back on Xyrem the last two nights and got decent sleep (woke up slightly tired but still able to function) but man do I feel weird. I think I can finally say I am officially done with Xyrem. I'm meeting with my psych on Monday to discuss alternative sleep meds and hopefully I'll sample a few different ones and find the one that works the best for me. Thanks for all your support/knowledge everyone!



#36 DeathRabbit

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Posted 27 September 2013 - 02:11 PM

Sorry it didn't work out. Really sucks if your one of us few that it isn't just an absolute miracle drug for.



#37 Chemist

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Posted 01 October 2013 - 11:56 AM

All good. I went back on Xyrem the last two nights and got decent sleep (woke up slightly tired but still able to function) but man do I feel weird. I think I can finally say I am officially done with Xyrem. I'm meeting with my psych on Monday to discuss alternative sleep meds and hopefully I'll sample a few different ones and find the one that works the best for me. Thanks for all your support/knowledge everyone!


Do not use a sleep medication long term, especially anything of the benzodiazepene class. They will severely screw up your sleep architecture in the long run. The exceptions are xyrem and antihistamine class sedatives.

Assuming xyrem was all you were taking and you have no other health problems, please try this first: Go to the drug store and buy a cough suppressant which has dextromethorphan HBr as its only active ingredient. Make sure you are buying the HBr and not the polistyrex equivalent. Generic version should only cost about seven dollars. Go home and take 45mg 1-2 hours before you go to sleep.

Take note of how sleepy it made you and how deep a sleep you felt you got along with how drowsy you still were in the morning. If it made you sleepy and you got a deep sleep you would probably greatly benefit from an serotonergic antidepressant. This is true even if you were still drowsy from the drug in the morning but felt you got a deep sleep and felt refreshed later in the day once the drug wore off because a large percentage of the population are slow metabolizers.

#38 AnnieJoy

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Posted 01 October 2013 - 04:55 PM

So it sounds like everyone who has taken xyrem has taken a while to notice a lot of benefits... I am taking 13 hours at a college as a high school senior but I live at home. All of the medication attempts have been hard to deal with on top of school this new school venture but I NEED solutions. 
My doc is approving Xyrem and tomorrow my parent goes in to approve and order it in. It will take about 2-3 weeks to get to me, but I am worried about what I should expect when I first start taking it. 
How should I expect the side effects to mess with my classes? 

I'm on Concerta at the moment but it, like xyrem for DeathRabbit makes me want to slit my wrists. Maybe not that extreme. But the anxiety at night causes horrid sudden depression what with all the panic and worries, and so I'm going to ask for something not extended release and on the xyrem sleep won't be a problem. I'm just not sure how many more nights like last night I could do on that stuff. I think if it has a "meth" in front of it I should stay away from it... 

But what should I expect from the xyrem itself? 
Any tips for school? I've got big tests coming up (ACT, SAT, SAT subject tests, finals) in the next couple months. Should I go ahead and ask my doctor to get the paperwork started for accommodations like longer test time just in case I need it?
I wasn't really sure where all to post these questions. Just a shot in the dark. Thanks!!



#39 EskewCG

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Posted 01 October 2013 - 05:45 PM

        Thanks Chemist, I actually decided to stop taking the Xanax at night and am now trying Rozerem (it's a melatonin receptor agonist) to give me some steady sleep at night. In the past I had tried Ambien, Ambien CR, Lunesta, Benadryl, Trazodone, and Flexeril and all to no avail. I think taking the Xyrem has somehow reset my sleep cycle so now I can tinker around and see what works best. I just picked up the Rozerem tonight and will also scoop up some Delsym on the way home and see which one works better for me (I'm not taking both the same night).

        Hey AnnieJoy, I'm sure you've read this online but Xyrem can cause a range of side-effects and it all differs person-to-person. I was not taking it for narcolepsy so I'm sure you'll have a different experience than what I experienced when you take it. Being on the beginning dose of 2.25g 2x a night for the first week is a *BEEP*. I only got about 5 & 1/2 hours of sleep on that dose and I woke up in the mornings feeling nauseous and spaced out. It was tough sticking it out but when I got to the dose of 3g 2x a night the next week, I was getting about 6 &1/2 to 7 hours of sound sleep and woke up feeling rested.
      That's weird that it arrives in 2-3 weeks for you because Jazz pharmaceuticals usually tries to ship the Xyrem on next-day air. I would probably call them back and see if they can ship it to you sooner. Also, if the Concerta is making you feel that way I would recommend switching to generic Adderall since it quickly leaves the body and it really does help with studying. Good luck with the Xyrem and don't let the negative reviews get you down (it really is a game-changer for some people with narcolepsy)!!



#40 Chemist

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Posted 02 October 2013 - 12:17 AM

Yeah definitely don't do the DXM test when you have any other drugs still in your system or the results might not be meaningful. If you can stand it you might even want to wait two days between taking any other drug and DXM. Good luck.





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