Sunday, February 21, 2010

Linky Love: What Are Other People Saying About Xyrem?

Mixed media Sleeping BeautyImage by melanie_hughes via Flickr

After spending several years trying to treat my pain, I have come to believe that I should be aiming at the target of sleep. My current thought process is 'if could just get some deep, restorative sleep I might feel a significant difference in my fibromyalgia and fatigue symptoms.' Unfortunately, as I have chronicled here on OMA&P!, even with religious use of my CPAP machine to treat my sleep apnea, other sleep disorders like delayed phase disorder and a lack stage 4 deep sleep every night thwart my best effort.

My revelations impress upon me the fact that fibromyalgia is truly a brain disorder that affects both pain regulation and sleep. I think the medical specialty of neurology is better suited to treat fibromylagia than rheumatology. Current, I see a neurologist who seems to have a lot of ideas about what we can try. I found her after I felt like my rheumatologist had no more treatment options to offer and I decided to stop wasting my time seeing him.

After receiving a comment from Jolene at Graceful Agony: Living your best life despite chronic pain who happened to write a blog post this week also about Xyrem, I decided to check out what other people are saying about Xyrem.

Xyrem: Some Questions and Misperceptions

This is an article from the Talk About Sleep website, which I frequent for information about CPAP tricks and tips. Apparently persons with narcolepsy use Xyrem to help treat this condition. It seems that some people are having good results with Xyrem for this condition, but fibromyalgia is not narcolepsy.

There seems to be a lot of chatter over the the Daily Strength Fibromyalgia Support Groups about Xyrem being a promising new treatment for fibromyalgia. Interspersed are some accounts about side-effects and negative experiences as well. The main point being made is that fibromyalgia disrupts sleep patterns and person with fibromyalgia typically do not get enough deep sleep, which worsens pain and fatigue.

I also stumble across some older articles at ProHealth.com and the National Fibromyalgia Association websites, but nothing within the past year or so. There are some recent message board comments at ProHealth about Xyrem--to check it out click here.

I don't know that I am going to be trying Xyrem any time soon. My little trip around the Internet today has raised the issue that my medical insurance may not pay for this medication since it is not currently FDA approved to treat fbromyalgia. Right now, my neurologist is not convinced this is a good option for me. When I last saw her at the beginning of February, she planned to call my sleep specialist and discuss this and his other recommendations for me. I guess I'll find out what she decides at my next appointment in a month or so.

On a more happy note....

Today's post is brought to you by Happyneuron.com. Did you know that something as simple and easy as playing games can help the cognitive problems experienced by persons living with fibromyalgia? So why not have some fun beating fibro-fog by playing brain fitness games at Happyneuron. Their scientifically developed games stimulate your attention, language and memory skills. Try their games for free by clicking brain fitness and sign up for a risk-free 7 day trial membership.

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Dot said...

Hi Selena, I'm really glad you wrote this blog post about Xyrem Sodium Oxbate! The news this week that the FDA has accepted the filing of JZP-6 Sodium Oxybate for the treatment of fibro got me too thinking about whether or not I'd try the drug.

I actually wrote a post this weekend too looking at the risks and benefits of Xyrem! After researching the side effects, which are indeed severe, I'd think I'll still consider it once it's approved for fibro since it's said to be effective in all three major fibro problem areas: pain, fatigue, and sleep.

Unknown said...

Thanks so much for linking my site, and for posting on Xyrem... it'll be interesting to see what happens over the next 10 months or so with the FDA.

Did you hear about the MASSIVE fraud in the news in regards to medical studies and research? Lyrica was one of the drugs named... It's up on my site if you are interested in reading about it... There is no doubt that health has become about $$ and less about people... very sad.

HUGS and love Selena, hope you are doing well today!

Selena said...

Thanks for your comment Dot. I am headed over to Fibroworld to check it out. You are a brave girl to consider taking Xyrem. Let me know when you start so I can get some more feedback about the experience. I remain on the fence about it all.

Mandy said...

Hi Selena,

I'm writing a post on restorative sleep poses and when I was looking for a photo, I returned back to your site. Pleasant surprise :) I suffered from many restless nights and took some lessons from my restorative yoga classes and a polarity healer I see now. I've been sleeping in this pose for two months now and have never had such sound sleep in my life. If you're interested, I'll tweet you the link when it's done :)