By Sue Cunningham
When I got into see Dr. Nancy Klimas (an expert in ME/CFS), in May of 2008, one of the tests she asked me to do was a sleep study. She referred me to neurologist who specialized in sleep at the U of Miami and I soon did a sleep study at their sleep lab. (If you’ve never done a sleep study at a lab…you are in for a treat, not!) At that time home sleep tests were not available like they are now.
A well person may have 8 or more arousals (awakenings) during the night, however my sleep study revealed that I had over 40 arousals that night. As you can imagine, this is not normal sleep. (According to Dr. Klimas, ineffective sleep is a symptom/result of ME/CFS). I was diagnosed with non-restorative sleep and then was prescribed a small dose of doxepin to help me sleep.
Not long after, Dr. Klimas suggested I ask my sleep doctor to prescribe Xyrem, (pronounced Zeye-rem), a medication approved for treating narcolepsy. He was willing to prescribe it to me in an off-label use. The prescribed dosage is 9g per night, but I started off the first night with just one dose of 2.5g. The morning after I felt better. I mean noticeably, delightfully better. I feel that Xyrem has been the most effective medication I have ever taken for ME/CFS. I worked my way up to a full nightly dose which I divide it into 3 doses of 3g and have been taking Xyrem nightly until about a year ago.
In July of 2020, Jazz Pharmaceuticals which makes Xyrem, got Xywav (pronounced Zeye-wave) approved by the FDA for Narcolepsy as well. The difference in the 2 medications is that Xywav doesn’t have the large amount of sodium that Xyrem contains. It is my understanding that sodium was added to Xyrem so that it could be noticeable in a drink. Xyrem is Sodium Oxybate and can be used as a date rape drug. There is so much sodium in Xyrem that extended use can raise your blood pressure. As my blood pressure had risen a bit in the past few years, when Xywav was approved, my sleep doctor suggested I switch to it to avoid the sodium, which I did. It works exactly Xyrem and I still feel just as rested after waking.
Just this past Aug., Xywav was approved for idiopathic hypersomnia. This may be a boon for folks in Colorado with ME. The approval for it to treat idiopathic hypersomnia may make doctors here in Colorado feel more comfortable prescribing it for folks with ME.
My neurologist, who did his residency under Dr. Klimas, suspected that sleep doctors in Colorado might not be willing to prescribe Xyrem or Xywav for a PWME and when I did a sleep study here a couple years ago, I asked the neurologist if he would be willing to take over my prescription for Xyrem and at that time he was not.
What I’m saying here is, that if you have ME/CFS, your sleep is probably not normal. Getting a sleep study done would be the first step to determine if that is one of your symptoms. With this new approval of Xywav for idiopathic hypersomnia, it’s possible you might be able to get a doctor to prescribe Xywav for you. Xyrem and Xywav are both regulated under the REMS program (Risk Evaluation and Mitigation Strategy) as both can be used as a date rape drug. The REMS program has extra requirements for prescribers and it comes directly to your door from a specialized pharmacy, and is not available from a standard pharmacy.
Like I said before, I have found Xyrem and Xywav to be one of the most beneficial medications I’ve taken for ME/CFS. Perhaps you will too.