Meghan1221

Xyrem Has Become Less Effective.

20 posts in this topic

Hey everyone long time no chat!

 

So heres the problem... The past 3 shipments of Xyrem haven't worked very well.  The taste is different as well.  It takes me so long to fall asleep with the first dose and my July shipment I have problems falling back to sleep with the second dose!  

 

Last night I couldn't fall asleep and when I don't fall asleep right away I start thinking too much and then wind up balling my eyes out :( its awful!

 

I guess my questions are... has anyone else had a shipment or two that didn't work?  Or, has anyone built a tolerance to Xyrem.

 

I feel like its the meds (maybe from the heat) not a tolerance issue due to the fact that Junes shipment was not as bad as May's and now Julys.  I was able to use a bottle of June's for the first dose and then used May's for the second and did okay.  I still have one bottle of June left but wanted to see if July was any better.  So last night both doses came from the new shipment and it was the worst night I have has since the very beginning (when the doses were much too low)

 

My EDS is starting to come back and not being able to fall asleep is really bothering me.

 

Ive talked to a Xyrem Nurse, a Xyrem Pharmacist, as well as the person from Jazz none of them helped or gave me a reason or said I could send the crap back!!! I have an appointment with my sleep doc on Monday, so hopefully he will have something useful for me.

 

 

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It might be anxiety issues. I've noticed in cases of anxiety (especially artificial anxiety stimulants create) that the taste of things will change. And we all know anxiety can cause sleeplessness. I remember one time when I was on a high dose of focalin, I went to Chipotle and got a barbacoa burrito, one of my favorite fast food meals. However, when I took a bite, it tasted rotten, like I was eating garbage. I sent it back and got another one. Same deal. I then realized my coke was not sweet, it was like carbonated water to me. So yeah, taste changes can happen with anxiety. It might be a similar mechanism to like when you get the flu and everything tastes terrible. Maybe that's just something the body does when it gets stressed. I've heard of people building tolerance to Xyrem, though I believe it is rare. You might wish to try the 5-htp. It's pretty good at calming with its serotogenic properties, if you don't want to add more Rx meds to the list.

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The thing is DR I was having stress or anxiety issues.  I just hoped in bed took my first dose and waited to fall asleep.  Its when the drug kicks in and I am still wide awake that I have issues.  Like when I was first starting the drug and I wasn't on a high enough dose to fall asleep.  I haven't had to many problem since being on the 4.5x2. 

 

Hopefully my doc will have something to say about it.  I am just not sure what I am supposed to do with the 3 bottles for July... I don't want to take it if I can't fall asleep!!  

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You def dont want to stop it unless you want to redo the titration. I found out that stop and start on Xyrem is a very, very, very (I can't say that word enough) bad plan.

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I def do not want to stop taking it!! It has changed my life, I cannot imagine going back to the way I was before... just with these 2/3 months of it being less effective I am starting to see the fog more and more, and hallucinations are coming back as well.

 

I just can't take it and be awake on that stuff I want to just drift off to sleep like I have been doing for almost a year!

 

:unsure:  :wacko:  :blink:

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Well I was more meaning if you you quit temporarily and then jump back to the max dose, it will cause the same kind of side effects as if you had never titrated at all. I think that was part of the reason I ended up having to quit the Xyrem. I was having issues before, but Jazz was 3 days late getting me a shipment. That first dose I took at the straight 4.5 like usual and I was violently ill and having reality fragmenting panic attacks.

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yikes!  The nurse at Xyrem said maybe I could take a week off?  I have taken a weekend off before and was fine.  I would def not want to start tirating again that part sucked!

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Well I don't know what to believe. I know the 4 days off certainly screwed me up. And my sleep doc said if you miss more than 3 or 4 doses, you gotta start over or risk bad side effects.

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Wow that sounds crazy! Hopefully this new doctor will have some insight for me.  Fingers crossed!

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Meg, I've been having worsening nausea and feeling depressed in the mornings with my July shipment. I just got off the phone with Jazz. It's like I don't want to do anything except escape this feeling. :(

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There are a lot of variables that could be the cause of Xyrem's effect. Hot weather means more sweating. Your electrolite balance of salt and potassium could be off, for example. This can cause nausea.

There is generally little variation in the consistency of pharmaceutical products. Your June shipment could have been produced in the same "lot" as your July or May. And two different people's July shipment could be from different lots. If you think the medicine is the culprit, the Lot #s would be the key there. There is extensive testing to assure lot consistency and, although it is possible, it is unlikely. Has your Xyrem been exposed to extreme heat where it is stored? Typical seasonal heat is factored in to the safeguards for the medication- otherwise it would be shipped in a cooler. I had my Xyrem shipped to a 24 hr Fed Ex/ Kinkos- they usually get their deliveries in the morning so that could minimize its exposure to summer heat if you are concerned.

The most important thing is that how you feel. So, whatever the cause, you still feel off. It is so hard relying on medications and a lifestyle juggle to maintain how we feel. We seem very easily tripped up by small changes that others can manage without notice.

Whatever the cause, I hope you both get some relief soon because it is no fun.

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i am going on a holiday for however long I feel appropriate.

 

Hank, my doc agreed to try Trazodone... like I said this new guy is just amazing.  I emailed him and he got right back to me.  he even showed concern about the extreme EDS Ive had the past two days stating "I hope the adderall is getting you thought the day. Let me know what you want to do"  

 

So I am hopeful I will find something that lets me sleep for 8 hours and doesn't keep me in a sleepy fog all day... I can't take this feeling much longer!

 

Lizz- did you find the taste of the med to be off? less salty?

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Last night I took a night off from xyrem and the nausea and dread/depression wasn't there this morning, so that was a relief...but then of course the problem was I spent the entire morning/afternoon in and out of dreamland.

As for taste, I can't say for sure if I've noticed a difference because I'd been experimenting with doses...tonight I'm starting back at 3.0gx2 and slowly titrating back up to 4.0-4.5g....le sigh. I've really been struggling and I hate how different I feel with different doses. It's like my personality is dose dependent :(

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In the beginning I did a lot of experimenting to find the right dose... Finally I just stuck with 4.5x2 and about 2 months later it worked like a charm.  I think switching to much makes it hard to decide what works and what does not.  The thing about Xyrem is your body needs to become used to it, and that process takes a while :(

 

Having not taken it since Sunday I am miserable!! But that may be the Klonopin... it has such a long half life that I am in such a terrible deep sad sad fog.  I want to crawl under a rock and sleep for days.

 

Tonight I start something new until I can go back on Xyrem. sigh.

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Last night I took a night off from xyrem and the nausea and dread/depression wasn't there this morning, so that was a relief...but then of course the problem was I spent the entire morning/afternoon in and out of dreamland.

As for taste, I can't say for sure if I've noticed a difference because I'd been experimenting with doses...tonight I'm starting back at 3.0gx2 and slowly titrating back up to 4.0-4.5g....le sigh. I've really been struggling and I hate how different I feel with different doses. It's like my personality is dose dependent :(

I think it might just be an N thing in general, waking up depressed. Half the time when I wake up I want to just die for about the first 30 minutes. And I'm not on Xyrem at all. But other days I wake up feeling normal. I don't get it.

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Oh I have the same feeling plenty of time... its almost like it hurts to be this tired although I am not in any pain.

 

It's sad when I want to get up and get out and throw the ball with my pup or just do anything, but sometime I just sit and stare wondering what it would feel like to be awake.  I wish I knew what that was like.  I've had this crap for so long I have nothing to compare it to.  Geeze I need to get out of this funk... yay for Friday!

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I've had to stop taking Xyrem twice in the nine months I've been on it.  I also have sleep apnea and use CPAP.  I had a sinus infection and later, a bad cold.  I couldn't use the CPAP and was told  by my doctor that I then couldn't take Xyrem either. After a week not taking it, I didn't notice a problem starting up at the dose I'd left off at.  P.S. The doctor would have told me to start at a lower dose, but I didn't contact her before starting back up.

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I was told that stopping for a week wouldn't require a slow start up.  I've been off it for a month and a half... I took 2.5x2 last night, tonight I will do 3.5x2, and the next 4.5x2 so its not nearly as slow as I was thinking.  I am just hoping it works for me again... I can't take this EDS!

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As with most drugs, if you use it everyday, it will stop working.  The solution is to take a couple of days off, or more each week.

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