A new study of the drug sodium oxybate for the special sleep problems of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) really caught my attention for several reasons:
- The 2 conditions were studied together.
- It ties our sleep abnormalities to narcolepsy.
- It was pretty darned successful.
1. The 2 conditions were studied together.
FMS and ME/CFS are strikingly similar, and so far the medical community is torn as to whether they're completely separate, closely related, or variations of the same condition. Regardless, studies have shown that we have the same problems with sleep.
Some of us sleep for 18 hours a day while some might sleep for just 4, but what we all have in common is that we don't sleep well. Our deep sleep stages (3 and 4) are interrupted by bursts of alpha waves, which really shouldn't be there -- alpha waves mean the brain is awake. The end result is, no matter how much we sleep, we can't truly be well rested. Ever.
Studying both conditions simultaneously recognizes this strong commonality, which could be a major contributing factor in both conditions. My personal opinion is that FMS and ME/CFS are different points on the same disease spectrum, so I believe pursuing what they have in common gets us closer to the root of the matter.
2. It ties our sleep abnormalities to narcolepsy.
The tie to narcolepsy really intrigues me because I've noticed several narcolepsy symptoms in myself, especially when I eat gluten. In narcolepsy, the brain is unable to regulate the sleep-wake cycles. It leaves you struggling to wake up and extremely tired during the day. (The sleep attacks most of us associate with narcolepsy are actually quite rare.) When I first read the full symptoms of narcolepsy, my first thought was, "It sounds like ME/CFS." (Read more: Chronic Fatigue Syndrome or Narcolepsy?) It's long seemed to me that some people's improvement on sodium oxybate -- a narcolepsy drug -- strengthened the association between these illnesses.
3. It was pretty darned successful.
I get really sick of studies showing a drug made 25% of people better, and the drug companies advertise it like it's a cure-all. In this study, though, a majority of people improved:
- 60% had significant pain reduction
- 75% had significant relief of fatigue
Those pain numbers are impressive, but the fatigue percentage? That's huge. We have precious little that's proven to fight the kinds of fatigue we get, especially in ME/CFS. However, it's important to note that more than 1/3 of participants (30 out of 85) dropped out because of side effects.
About Sodium Oxybate
Sodium oxybate is a central nervous system depressant known to improve stage 3 and 4 sleep. It's the active ingredient in Xyrem, which can help reduce daytime sleepiness and cataplexy in narcoleptics. Jazz Pharmaceuticals submitted an application to the FDA to approve this drug for FMS. It's already fairly common off label for both FMS and ME/CFS, but this is the first time it's been studied in ME/CFS.
However, sodium oxybate comes with a lot of baggage -- especially a risk of addiction and abuse. It's classified as a Schedule III controlled substance, so you can only get it if you meet strict eligibility requirements and your doctor is required to monitor you closely when you're on it. That's on top of possible side effects, which are a concern with any treatment.
Learn more:
- Sodium Oxybate.
- Read the abstract of this study.
- Read the full study.
Have you taken sodium oxybate? How did it work for you? What do you think of this study? Leave your comments below!
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I am very wary of Xyrem because I am concerned about my ability to respond to an emergency during the night if I am that heavily sedated (which is probably not the right word.) I have also hear some horror stories about people’s experience with it–not a lot of anecdotal success.
I have also read a report from Devin Starlanyl that Xyrem can cause insomnia (a paradoxical reaction.)
That said, I have found low dose Seroquel to help with getting more deep sleep. It has side-effects too, but none as dramatic and scary as Xyrem.
I’ll let other a lot of other people try it first before I even consider it.
I’ve been taking Xyrem for narcolepsy (but I also have FMS, CFS, and a recent RA diagnosis) for 2 1/2 years. It really helps me sleep through the night. When I miss a night of it, I have bouts of insomnia or wake up in a mental haze that never leaves all day. Sometimes without it, I can barely function due to pain, too.
I still get sleep paralysis while I take it – but it’s much less common than it was before. I have it maybe once or twice a month – whereas before I’d sometimes have multiple episodes in the same week.
Initially it really helped with giving me more energy in the day and with the pain levels, but that has declined over the years. I still wait up feeling refreshed, but I have to take a nap at least once a day. These could be caused by a worsening of my condition and the RA, though.
My doctor actually discussed the possible link among the conditions when he first prescribed it – and I think he may be working with some of the researchers at the Narcolepsy Network to try to establish a more than anecdotal link.
I took Xyrem several years ago. I had to take it twice at night which was OK since I woke up every night. The worst part was the smell and taste. The manufacturers put a bad smell and taste in it so it can’t be used as a date rape drug. For someone with a hightened sense of smell, it was very, very bad. Think of Valerian only worse and in liquid form.
I was diagnosed with fibromyalgia 6 years ago. As a child, I wet the bed and was treated with a machine that triggered an alarm anytime I began to wet the bed. It would wake me up several times per night. This did eventually work after over a month. My parents were told that I slept too deeply to wake up. I have had sleep problems ever since and for several years did shift work. I was curious if anyone else with fibro was treated as a child with the same machine? Fibro as a sleep disorder is very interesting. I would be afraid to take Xyrem until more people tried it under controlled conditions.
I’ve been using xyrem, (sodium oxybate) for 4 years now, twice a night. I mix it with crystal light lemonade so it doesn’t taste or smell too bad. This treatment has gotten me out of the bed, and given me back a large part of my life. I can read again, do exercises, have memories, shop, go to movies, all in all a small but enjoyable life. Before xyrem I was bedridden and very doped with pain meds. I hope the FDA gives xyrem the acceptance it should have and that more people with fm,cfs, could profit from it.
I don’t believe I have any problems with sleeping well (I feel well rested after sleep), except for sometimes getting insomnia.
While I know some people with chronic fatigue may have this problem, I’m nervous about too much research focus going in this direction as I am with psychological/behavioral approaches. But of course it is great if it helps some people.
I have been taking Xyrem for over 3yrs.
It does have the bad taste to prevent it from being used as a date rape drug, but as abotbensussen I mix it with a non-sugar flavored mix and it is tolerable.
It improved my sleep, which allowed my body to repair itself. As Selena was concerned, waking up during the middle of the dosing is next to impossible. Taking this risk was worth getting rip of the catatonic moment I was having during the day.
With Xyrem and Lyrica, my pain all but disappeared. All drugs have side effects, but if you work closely with your doctor the risk is minimal. Unfortunately, as with most drugs I take, the effectiveness has begun to wane.
I tried several sleeping meds over the course of my illness (since ‘93) and none of them really helped with the unrestful sleep aspect of Fibro/CFIDS. Ambien made me sleep eat. Not good!
But, for the last 8 months or so, I have been taking the new OTC natural sleep remedy Alteril and many of my aches and pains have backed off tremendously. So, I must conclude that my problems are mostly caused by lack of a restful night’s sleep. But, now I have osteoarthritis in my spine and in need of surgery. Seems like we can’t win, eh?
interesting .. i have found that taking 100 mgs of B12 at bedtime really helps the pain at night and am getting more restful sleep. My dr. said i will just eliminate any B12 that i didn’t use in the morning, so don;t have to worry about toxic effects .. I discovered that b 12 really helps with nerve pain during a recent, horrible bout with shingles.
My post could be exactly like Kathleen’s – I wet the bed and my parents had me use a machine that would wake me up during the night if it detected moisture, etc., and also later in my 20’s worked shift work for several years. As a kid, teenager, and young adult I often took naps – long, long naps – like 3 to 4 hours long and they were soooo refreshing. Now, with FM and possibly CFS, I cannot get good sleep for the life of me. I never wake up refreshed and my naps are limited to an hour at the most becuase of Overactive Bladder. I also do not fall into a deep sleep during naps. However, during the night/morning I sleep like a log (without any meds or supplements) and have a very hard time waking up in the morning to an alarm clock. My husband tells me I keep hitting the snooze over and over, but I have no recollection of doing so. If I do happen to get up to the alarm I am not actually awake yet. It takes several hours for me to “wake” up and some days I never get to the point where I do feel awake and alive. I hate it so much.
When I was on Lyrica it worked at first and I thought I had my life back, but then the side effects kicked in and it was way worse than I could ever imagine. The pain was worse and I could not wake up for anything! Even a major, massive storm we went through while camping! My husband was yelling at me to wake up to help him put the awning down on the camper and I would not budge. He was so mad at me and I had no recollection of him yelling at me. So, I got off of Lyrica as soon as I could.
I’ve tried Ambien, but that leaves me feeling hungover in the morning. During the day I take two stimulants – Vyvanse and Ritalin – to help with ADHD symptoms and brain fog and I’ve always wondered if these two stimulants could be causing me to not get into the deep sleep phase cycle during the night or during naps. Any ideas? Anyone else taking stimulants during the day and also have a hard time with their sleep? For awhile I was on Provigil (a narcolepsy drug) and that helped with daytime sleepiness, but the side effects were bad for me. I wasnt on the stimulants while I was on Provigil tho.
Are there any other drugs, besides Xrem or whatever, to get refreshing sleep? I think this is one of the major problems I’m having right now that could be effecting everything else.
As I read all your comments and experiences I just felt so bad for the circus of symptoms, scripts, side effects etc that we all go through. I have had my nights mixed up with my days for some time now. I read from Dr. Tettelbaum’s book that it’s quite common with Fibro/CFS and that we have more energy after 10pm. It is certainly the case with me-I take 10mg Ambien and 40mg Elavil and 600mg Neurontin and even all that doesn’t knock me out till the sun comes up! Then I sleep for 10-12 hours and have a hard time waking up. Any comments out there? Thanks
I have been taking Restoril (temazepam) for about 10 years. I know it isn’t the be all to end all, but it does work.
I have had my doctor increase my dosage from the standard 30 mg to 60 mg (which every other doc questions), but it has been a saving grace for me. I know that when I don’t take it, or I run out I just don’t sleep – at all. I have gone as many as 3 days without any sleep whatsoever – I mean not even a moment where I closed my eyes.
I was one of those people who had a nearly psychotic reaction to Ambien CR when I tried that, so I’ll stick to my Restoril. It may not do anything for my pain, but it allows me to sleep – a good, restful sleep for an average of 6-7 hours. And as we all know – with fibro – I’ll take what I can get!!
Interesting discussion about sleep issues – thanks for the info.
Shelly, I was interested in reading about B12, because
I’ve been taking Folast (brand name: Metanx http://www.metanx.com/WhatIsMetanx) for a couple of years to help with sleep, and it has worked wonders. It is as I understand it, a bio-available form of folic acid, with some B6 & B12. I love that it is a vitamin (though prescription) rather than a narcotic or something else. When I don’t take 2 tabs at night, I do not sleep through the night. I’ve experimented, thinking it’s a placebo effect, but even if it is, it helps!
It is indicated for diabetic neuropathy, but was prescribed to me by my neurologist. Since moving, I’ve had to educate my new doctors about folast – so I suppose its off-label use for sleep is not widely known. It doesn’t eliminate my pain or all of my fatigue, but it was the first step in improving my life w/ FM.
I’m wondering if there is a connection between endothelial dysfunction and FM/CFS. I know I’ve read about irregularities in the fascia, which seems intuitive, but don’t recall anything about endothelial dysfunction or anything blood-related. Oh, to be able to concentrate enough to do research! I thank you, Adrienne, for doing it for us!
I was treated with Xyrem for about 4 months 2 years ago-I show symptoms of both fibromyalgia and chronic fatigue and have been diagnosed since 1987.
It worked very well for me-I would take two doses-one at bedtime and one about 3:30 am. I woke up rested and didn’t even need a nap most days-what a difference-less pain, etc.
I wouldn’t recommend it for everyone however-the sense of falling asleep is completely different and feels like losing control-kind of like falling of a cliff-and it disinhibits some behaviors in dreams-I work up screaming several times-not from nightmares-just from shouting in a dream and woke myself up once reaching for something. It also exaggerated my leg spasm and I had to increase my Mirapex.
Also, once you’ve taken the drug it is extremely difficult to wake up to do anything until the dose runs out-which makes one vulnerable to dangers in the environment. I wouldn’t use it if I lived alone or traveling, I don’t think.
Another drawback is that it is extremely expensive-even when my BC/BS insurance paid, it still cost us $300 for a month supply. I understand that the drug company can help with payments.
Unfortunately I had to discontinue the drug as my husband changed employers and our health insurance changed-no longer paid for the doctor who prescribed it. I tried to get my sleep doctor to prescribe it-I have sleep apnea and chronic excessive daytime sleepiness (I still wake up 6 times an hour even with a CPAP) without success.
First, it has not yet been approved as an FDA approved treatment for chronic fatigue/fibromyalgia/excessive daytime sleepiness. Second, a number of narcolepsy patients my specialist has treated with it have had bad experiences-even psychotic episodes. So she was not willing to risk the liability.
Sigh-so now I’m back to sleeping 18 hours a day.
Anne,
Researchers have turned up some findings about impaired blood flow and blood volume in us, likely leading to oxygen deprivation and vitamin deficiencies in our cells. It’s an interesting area of research that I hope we’ll learn more about in the next few years.
~Adrienne
My doctor explained to me during my last visit with her that sleep apnea plays a large part with fibromyalgia. I have just had 2 overnight sleep tests and have been found to have moderate sleep apnea. I am not getting enough oxygen to my heart and brain. So if you know you may snore, wake up at different times during the night, or wake up always feeling exhausted ask your physician about a sleep test. I just started using a CPAP machine yesterday. I also have decorated my room to help induce sleep. I have darker curtains up and don’t watch television in the room unless I am ill and can’t make it down the steps. I hope this may help some of my fibro friends.