The Role of Sleep and the Successful (Banned) Prescription

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Hi Everyone,

I always mean to write more, but as the years go on I wind up writing less and less.  I have a bit of a pile-up of emails and commented questions, so I want to try to answer some of those questions.  WhileI can’t tell you what to do, and ust tell you to always check with a trusted health care provide, I can tell you what I do, have done, experienced, and have learned.

I get a lot of questions about the prescription that is on a split ban in the US, so lets start there, because it is my sincere hope that you may be able to learn something helpful from my struggle.  The drug is called Xyrem as a prescription.  It is a chemical drug called GHB (Gamma Hydroxybuteric Acid/Sodium Oxybate) and is both a Schedule I and Schedule III drug here in the US, so it must be prescribed by a doctor who is certified to prescribe it (a process they must go through) and will arrive via Next Day FedEx directly to the patient’s door from the one central pharmacy with the license to make it.  Currently it’s only on-label use is “excessive daytime sleepiness” as experienced by people with Narcolepsy.  There was a trial (I believe by Orphan Medical) to make Fibromyalgia an on-label use, but as far as I know this bid was denied by the FDA.

Let’s touch on why I wanted to take this drug first.  In my years of research I found some mentions of a failure to achieve the deep restorative sleep, previously called Delta Wave or Stage IV Sleep, by Fibromyalgia sufferers.  In tests research subjects who’s delta waves were repeatedly disrupted developed widespread pain and fatigue.  One study suggested that the FMS pressure points became activated as well.  Essentially, delta wave disruption seemed to be causing FMS in previously healthy patients, but when the subjects were no longer interupted by teh researchers they returned to normal sleep patterns and the symptoms disappeared.  This was a big flag to me as a person with lifelong sleep disruption and insomnia.  I had been through may years of sleep inducing and assisting prescriptions as well.  As I began researching this idea further…  how to achieve this elusive stage IV sleep… I came across a number of works that suggested that nearly all, if not all, sleep related drugs were disruptive to the sleep patterns, blocking or interrupting the all important delta waves.  This spoke worlds of truth to my tired body that had been so long drugged with sleep assisting pills and was yet, thoroughly exhausted, never refreshed.   It was my father that called me one day to tell me that he had heard a short story on PBS radio about a drug that was being tested to treat delta wave disruption and included a quick note about Fibromyalgia.  It was years later that I finally found the right string of words in my Google searches that gave me Xyrem.

Once I knew the name I was able to take it to my doctor and begin the pleading process.  He did a bit of looking and returned to me with the news that it was roughly $500 per month and that even if he did write it on-label there was a good chance that my insurance company would not pay for it, but after a long discussion we went for it anyway.  A couple of weeks later I finally had the prescription in my hands, but alas, there were no instructions for use.  No dosing information.  Nothing.  It was going to be a stabbing in the dark process with a drug that I had been repeatedly warned could easily kill me.  Fun times, y’all.

It was brutal to put it shortly.  It was months before I found a dose that did not make me vomit, wet the bed, or live in a constant state of nausea and dizziness.  The headaches were long lasting as well.  It was frightening and miserable, but it did eventually work.  The pain slipped away under my distraction with the extreme exhaustion and ever present symptoms.  I lost 60 pounds during the first 3 months, dropping to 105 pounds, and living in a blur of sleep and half sleep.  Ultimately it was a friend of a friend of a friend, who had experience with recreational use of GHB, that suggested that Cannabis/Marijuana might aleviate the dizziness, nausea, and food aversion, enhance the sleep time, and be a safer drug combination than another prescription.  I had talked with my doctor already about an additional prescription, but with so little known in the medical community about GHB, no one wanted to combine anything with it.  I had to turn to the recreational users who had a wealth of information on dosing and combining.

To say that I was terrified would be an epic understatement, but I had a gut feeling and I followed it to success.  My doctor could not comment on what I was doing, and only reminded me that he had nothing to go on that could allow him to advise for or against my choices.  He simply asked me how I was feeling.  Very well.  Like a real person, I told him.  And I did.  Once I found the right combination, a much lower dose of GHB and a much higher dose of Medical grade Marijuana, I had a life.  I was skeletal, no muscle and no fat left, but I had a place to start and learned to jog and start to build strength.  I lived in this way for 11 months until I became pregnant with my second child.  Then the gig was up.  I couldn’t take it while pregnant or nursing, so I was quite suddenly facing years without access to what had finally allowed me to escape this miserable disease.

The video, Healing Fibromyalgia, was filmed just before and after my daughter’s first birthday, when the drug was still unavailable to me, but I could not take the return of the pain or other symptoms.  They were worse than ever before.  This is where the alternative healing treatments entered my life.  Unwilling to wean my daughter to take drugs again my doctor suggested that it was in my best interest to walk away from Western Medical and try something else.  He suggested Acupuncture.  After a few days of crying about the utter unfairness of it all, this is where I began.

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