SteffaneGrace

My Time With Xyrem

47 posts in this topic

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?

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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.

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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?

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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.

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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. 

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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.

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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.

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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. 

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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.

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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!

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

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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.

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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!!

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        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)!!

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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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Hey guys, just wanted to give you a quick update over the past few days. I've almost stopped using Xyrem completely (only take it once or twice on mornings when I wake up too early). I also started back on my original regiment of 300mg XL Brupropion and 100mg Lamictal daily with taking 20-30 mg of adderall as needed. I believe I have dopamine deficiency syndrome and the Adderall gives me a must needed boost but I'm going to try to switch from Brupropion to the 300 mg XL brand name Wellbutrin pills.

In relation to my insomnia, this week I've tried taking different numbers of Lunesta, Restoril, Xanax, Rozerem (which is crap) and Melatonin tablets with little to no success. I think my insomnia relates to some sort of Serotonin deficiency in my brain and was thinking of trying Remeron or Elavil.

Anyone have experience with using Remeron or Elavil? I've also tried Seroquel and Trazodone in the past with little to no success. Any feedback would be much appreciated. :D 

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Hey there. Don't know that it will be useful but personally I am on 200 mg of Provigil a.m. and lunch, as well as 15 mg dexadrine two a.m. two afternoon. Also 3 300 mg nuerontin a.m. and pm. For sleep I'm still trying the Xyrem.

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Did you try taking DXM to see how it impacted your sleep? If you do get very sleepy from it and sleep well then my vote would be remeron.

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Ah I totally forgot about taking Delsym. If my pdoc doesn't call me back by tonight (he's been slacking lately) I'll buy some tonight and let you know how it goes tomorrow. Is the ingredient a serotonin agonist or does it act more on the melatonin receptor?

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Hey guys, just wanted to give you a quick update over the past few days. I've almost stopped using Xyrem completely (only take it once or twice on mornings when I wake up too early). I also started back on my original regiment of 300mg XL Brupropion and 100mg Lamictal daily with taking 20-30 mg of adderall as needed. I believe I have dopamine deficiency syndrome and the Adderall gives me a must needed boost but I'm going to try to switch from Brupropion to the 300 mg XL brand name Wellbutrin pills.

In relation to my insomnia, this week I've tried taking different numbers of Lunesta, Restoril, Xanax, Rozerem (which is crap) and Melatonin tablets with little to no success. I think my insomnia relates to some sort of Serotonin deficiency in my brain and was thinking of trying Remeron or Elavil.

Anyone have experience with using Remeron or Elavil? I've also tried Seroquel and Trazodone in the past with little to no success. Any feedback would be much appreciated. :D

 

You gotta be kidding me. I did a double take when I read this post. "Xyrem in the mornings"???? "This week I've tried taking different numbers of Lunesta, Restoril, Xanax, Rozerem and Melatonin with little to no success"?????

IMHO, THERE IS NO ON/OFF SWITCH FOR ANYTHING UNLESS YOU GIVE IT TIME TO WORK. TIME !!! Yeah I know it's a four letter word for some of you young people. You're scatter shooting and I worry that you're going to do some serious damage to yourself. It took me two months to feel the full advantage of one pill...and took me eighteen months to get over two other meds 25 years ago. Please be kinder to yourself.

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Ah I totally forgot about taking Delsym. If my pdoc doesn't call me back by tonight (he's been slacking lately) I'll buy some tonight and let you know how it goes tomorrow. Is the ingredient a serotonin agonist or does it act more on the melatonin receptor?

Nonselective serotonin reuptake inhibitor and NMDA receptor antagonist, primarily. It has nothing to do with melatonin. If you have a Walgreen's nearby you can usually just find a bottle of Wal-Tussin for a few bucks which has just the DXM HBr in it. 15mg per capsule. You would take 2-3 capsules 2 hours before bedtime.

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Hi all, 

 

Have you tried Nuvigil?  I have been on it for a few years and I am pretty happy.  Although I could use  a higher dosage sometimes which my insurance won't pay for, it works great with close to no side effects. 

 

Ciao
R

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