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SleeplessBeauty

Afraid to start xyrem tomorrow....on fentanyl patch as well

6 posts in this topic

Hi,

Good evening to all :)

So, I had posted here awhile back and received some great responses. I had inquired about being on xyrem as well as opioids at the same time, specifically oxycodone and fentanyl. 

From everything I've read and heard, xyrem wouldn't be administered concurrently with opioids. I asked because my sleep MD had mentioned putting me on xyrem.

He did set me up with the xyrem program, and I actually put off getting the info they needed, as I just knew I would be denied due to interactions with the fentanyl, oxycodone, Clonazepam, and methocarbamol. I spoke to the xyrem pharmacy and discussed all my meds, and they discussed this with my MD. I got the call today that I would be receiving my first shipment of xyrem tomorrow. I was shocked. The agreement is that I will discontinue use of methocarbamol, as well as oxycodone(short acting) and Clonazepam at night. I am allowed to continue my fentanyl patch, which I thought was pretty much basically not possible.

So, I am VERY excited to try xyrem, I've been on all stimulants as well as provigil and Nuvigil, and have had to stop most stimulants due to side effects. I am currently on name brand Nuvigil, with little effect, and I have had to again start taking Ritalin just to stay awake, although I'm still exhausted and I do NOT like the way Ritalin/stimulants make me feel.

Now after the rambling :) here is my question....is anyone else on long-acting, around the clock opioids/fentanyl patch? I'm scared of the combination, just because of the severity of the interaction. I have no sleep apnea or other sleep related problems other than narcolepsy with cataplexy. The Clonazepam was used for me to fall asleep, I have PTSD and anxiety and have previously had to use it to GO to sleep. 

Any info or personal stories would be greatly appreciated, thanks!!

You guys are so supportive here...I don't know anyone personally with narcolepsy and even my family/friends don't understand it(I'm sure many of you deal with this as well). 

 

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No idea. Do you have some sort of comorbid condition? It's definitely true that improved sleep can improve pain. 

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Urm...that sounds like a pretty inadvisable combo to me. Quite frankly, I'm surprised that a physician would even Rx oxycontin and fentanyl at the same time. Not to mention the klonopin. I take xanax, and my pshrink about had a cow when they gave me norco for back pain. But yeah, those two and opiods the xyrem are pretty strong respiratory depressants. What do they have you on the opioids for, if you don't mind my asking?

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SleeplessBeauty

Fentanyl, oxycodone, klonopin and Robaxin is a DEADLY combination Why such strong medications?

Chronic pain issues and sleep are very difficult to treat together, obviously if you don't sleep then your pain will be worse the folllowing day, and if your pain is not well controlled then your sleep is crap, quite a little hamster wheel.

I have always been very leery about mixing opiods and Xyrem, personally, I do not recommend it. The cardiorespiratory effects of these medications could be disastrous.

Perhaps if we knew the focus of your pain better advice may follow. What are the dosages of your medication if you don't mind?

Please be very careful and best of luck

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In the short term, I would immediately question your future doctor-patient relationship with whoever gave you that cocktail of meds. Unless you're terminally ill, there's absolutely no reason why any provider should ever give a combination like that. I currently work with a pain management doctor and there are a number of healthier and more effective options than long term use of opioids. Unfortunately, we'd need to know more about your conmorbid condition to be able to give any advice on your upcoming xyrem use.

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I'm surprised that you were able to get a doctor to prescribe the Clonazepam while taking opioids since that alone can be a deadly mix. But adding Xyrem into the mix just makes it all that much worse. I take a long acting opioid and have been for several years. Because of that, Xyrem isn't an option for me. I don't know what dosage of opioids and Clonazepam you're taking, and that could be the key difference between you and me. But I've had two different sleep doctors warn me against mixing opioids and Xyrem. Not as many doctors as have warned me against taking opioids and Clonazepam, but enough that I believe them. The risk is too great that I could stop breathing and die while I'm asleep.

 

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