First, the major reasons for this blog:
I want people who do a Google search for both “Xyrem” and “Interstitial Cystitis” to find something to read. (If that’s you, feel free to skip down to the paragraph beginning with “Finally, for the really bad news.”)
I want people doing research on what to do about their Fibromyalgia to find another “something” they might be able to try (xyrem).
But no matter your reason for being here, please know that I AM NOT A MEDICAL PROFESSIONAL OF ANY KIND. I’m just a regular person struggling with some not-so-regular challenges and searching for some answers.
So now, a little bit about my story to put things in context:
After spending years being exhausted and in pain, I was diagnosed with Fibromyalgia in 2000. If you’ve found this blog, I don’t need to define Fibro for you! So in the last 11 years I’ve been chasing the elusive drug / cure/ treatment / diet that makes MY symptoms go away, or at least get better. You know the drill well by now. Try this anti-depressant, try that tri-cyclic and, of course, the FDA-blessed Lyrica, Cymbalta and Savella. It seems like “the next new thing” helps 25% of the people who try it, but I’ve never been in that elusive percentage. UNTIL NOW!!! This year (2011) I started seeing yet ANOTHER new doctor and after a rocky start in our relationship, I think we’re actually communicating. Both ways. She’s teaching and she’s listening. After making me try one more obligatory anti-depressant and seeing that it made me sick, she wanted me to try this crazy drug that is so controlled it’s available in the US through only one central pharmacy. So before committing, I went home and researched XYREM (sodium oxybate). And with trepidation and after jumping through numerous but easy hoops, I started taking xyrem.
First, the AWESOME news. In the last 10 days, I’ve gotten more ACTUAL, deep, restorative, sweet SLEEP than possibly I’ve had in the last 11 years combined. (It’s kind of fun dreaming like a maniac!) During that 10 days, I’ve cut my pain meds in half and am beginning to remember what it feels like to live in a semi-normal body! There are no cartwheels in the street yet, but maybe, just maybe, I can imagine a life where that might be possible someday. Only the seriously sleep-deprived can know just how profoundly wonderful sleep is.
Now for the nominally bad news. There are some side effects. The first two have to do with the “sodium” part of sodium oxybate. As you know, the simplified name for sodium is salt.
- There’s the diarrhea, but it’s not the worst I’ve ever had. I read about taking potassium to counter the effects of the massive dose of sodium in Xyrem. That sounds like an easy fix. (Gee, it might have been nice if someone had told me about that easy fix up front.)
- Retaining water–my hands are so puffy in the morning, my palms are red and I can hardly move my fingers. Also a result of the sodium. But that goes away as the day wears on.
- Headache: But it was just one day–a doozey, to be sure, but just one day in bed. It felt like what I imagine a migraine might be like. Can’t move–no sound–no light!
- Burning sensation in the upper torso–it was pretty major the first few days, but it’s tapering off and I’m hoping it is going away.
- HANGOVER–Again, hoping this one will lessen with time. Unfortunately, for me the hangover is lasting until the late afternoon, which gives me just a few hours of productive day. But that’s a few hours I haven’t had in a long time and it’s giving me HOPE that there is an actual LIFE waiting for me!
Finally, for the vewwy, vewwy bad news. And the reason Xyrem is likely not going to be an option for me. I have interstitial cystitis (IC). Fibromyalgia and interstitial cystitis frequently occur together. The technical definition of IC is “a painful condition due to inflammation of the tissues of the bladder wall.” What it really feels like – your bladder is an open wound. It feels like somebody took a piece of broken pottery and just went in there and scraped around on the inner wall of your bladder. It’s sore. So very sore. And it feels like that ALL THE TIME. Not just when you need to pee. Okay. Now. You remember that Xyrem has massive doses of sodium in it. (You’re smart; you see where this is going, don’t you?) Now imagine throwing salt on an open wound. It stings like a son-of-a-gun, doesn’t it? Well, I was probably naive to think the stinging wouldn’t get worse as time went on. But you figure the xyrem/sodium goes through the kidneys and other bodily processes so that not ALL that salt gets thrown on the sore bladder, right? Well, partly right. But by about Day 11, my bladder said, “Nope! Can’t handle this!” and it went into spasm. All day. I probably don’t need to tell you how painful muscle spasms are. And this is one you can’t put a heating pad on, or ask someone to press on until the muscle stops spazzing out. *sigh*
So, maybe the miracle drug xyrem isn’t the miracle I have been praying for. Maybe my bladder just can’t handle the amount of sodium in Xyrem.
But, I am not deterred! We fibromyal-giacs are nothing if we’re not researchers. We read everything. We look everywhere. We turn over every rock and pray to God that he’s placed our miracle under one of the rocks we’ll touch one day.
And we hope someone out there will respond to our blog and tell us where they found their miracle rock so that we can share in their joy.