Panic - re: xyrem, fibro and bipap

[kittychick]

I've had fibromyalgia for 5 years now and the insomnia part is out of control. Saw a new sleep doc, and I don't know how I can do what he wants me to do! I did a sleep study - I had, as they put it, extremely light apnea only when I had nightmares. But since my doc wants to try me on xyrem, he said I have to use a bipap - and just found out yesterday that he needs what he calls "full compliance" - which in his words is having it on 7 hours straight, every night, no matter what. I've tried to explain to hiim that even though the bipap is set extremely low (probably because of the fibro) it immediately gives me storng headaches and makes my ears pop. Plus, as a fibro sufferer, lying in bed for 7 hours straight is horrid. I thought xyrem was my last hope - but am really wondering (after panic attacks all night last night trying to do 7 hours) if it's worth it. I've tried almost every sleep med out there - and I'm hard to medicate - so things only work for me in higher doses than recommended. I guess I'm asking everyone if "full compliance" in my case is even possible - let alone worth it for a drug that won't allow me to be on any pain medication, etc. I need help and advice!

[KatEyes]

It's not the usual for a new bipap (or cpap/apap/vpap) user to be immediately comfortable and able to keep the mask on 7 hours a night, but it is possible to achieve this goal. I thought I'd never be able to do it, and now I'm perfectly comfortable. If the mask you have doesn't work for you, talk to your supplier and tell them. Don't suffer in silence or give up.

Without knowing the full results of your sleep study, I'm not sure what very light sleep apnea means. Did they say the nightmares caused the apnea or the apnea caused the nightmares? My apnea caused me to have horrible dreams. Even if you have mild sleep apnea, that diagnosis indicates a need for treatment.

It is possible to do this.

[kittychick]

They told me at the sleep clinic that the nightmares caused what they called "very light apnea". The person I spoke with there actually said that the issue was virtually non-existent and that if they weren't looking at putting my on Xyrem, they wouldn't have even put me on a bipap. I'd never exhibited any signs of apnea - my insomnia issue didn't even begin until my fibromyalgia began. I completely expected to take some time to get used to the mask - just having something on my head, and I can honestly say that isn't even an issue. I've already tried three masks - and while the one I have is the most comfortable, I can honestly say that the pressure (even though it's set as low is it can go according to the sleep place) - perhaps because of the fibro? causes severe, immediate headaches. And they pulled me off of all my pain medications in preparation for the Xyrem. And I just talked to the nurse to double check - and they said that even one day of "non compliance" (minimum 7 hours a night) will pull me off of it (not on it yet because I just can't do 7 hours - I haven't been able to lie in bed for 7 hours for 5 years!) and I'll be without it for 30 days again. Your comment about being able to achieve it - I believe that - if I were allowed to work up to it - and the pain of the pressure were able to be addressed. I'm just so frustrated - I'd looked at this Xyrem as one of my major hopes of "getting my life back", and now I'm feeling that it's just not going to be a viscious circle of working up to 7 hours, finally being put on the drug, having a bad night and then starting over. Is there anything you (or anyone) can suggest that helps with the pain of the blower pressure?  Thanks....

[scarlet37]

The reason your doctor wants full compliance is because using xyrem with a person who has even the slightest apnea could make it worse. Xyrem is a complete sedative to help your body reach each proper sleep stage and make your sleep more efficient.

I'm sure it is uncomfortable having the air blow in your mask just hang in there one good night sleep with that combo and you'll feel like a million dollars!

Best Wishes~