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Old 07-04-2012, 22:46
baZING baZING is offline
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On Xyrem, Sleep, and Uncomfortable Positions

Browsing around the GHB forums I invariably see questions posed every so often about getting Xyrem prescribed for insomnia. Once in a blue moon, these questions are directed right at me. Perhaps I have made a mistake by trumpeting about that I am on this medication for an off-label use but some people are aware of it so I feel as though I need to address a few things in this post.

First thing's first. I can't help you find a doctor. I believe that doing so would be source discussion and regardless, it makes me uncomfortable. The most helpful I can be is sharing stories and giving advice, which I will always do gladly either here or via PM.

If you can't sleep, I feel for you… I really do. One thing has to be said, though, and I can't tell you how many times I see this happening. This applies to all conditions, acute or chronic, physical or mental but is especially true of ongoing sicknesses: You have to avoid falling into the mindset of "I need x solution for my problem(s)." If you can't open yourself up to all the options available to you, I promise that whatever ails you will never go away. Furthermore, becoming so convinced that nothing will help you but one or two specific treatment plans can turn somewhat psychosomatic and just make things worse. You need to figure out if you're craving sleep, or craving GHB.

As for me, two years before going on Xyrem, I was diagnosed with BPD (Bipolar Disorder). I was constantly switching medications, suffering horrible side effects, and not getting any better. The mania was keeping me from sleeping for up to 5 days at a time; the combination of sleep deprivation, mania and depression, and being a teenager was driving me near to full-blown psychosis. My psychiatrist knew the sleep had to be addressed and we tried a wide range of treatments including medicine, acupuncture, massage, meditation, biofeedback… the works. I even completely redid my room at home to try and create a more comfortable sleeping environment.

All that work went on for years with no success. The BPD became progressively less of an issue, but the insomnia raged on. My mental illness destroyed my circadian rhythm and, frankly, my ability to fall asleep naturally. I went to see a sleep specialist and had two or three sleep studies done to see if we could come to a conclusion.

There was no conclusion, though… or at least nothing pointing as to why I wasn't sleeping. No restless legs, no sleep apnea, nothing other than the fact I simply wasn't getting any restorative sleep. At that point, after I had spent so much time not sleeping and being driven to the brink of losing my mind and then some, the sleep specialist was the one who brought up Xyrem. Not me. So really, it just fell into my lap.

So, now you know a bit of background on me, or perhaps a bit more if you already knew some. A lot of my prescription had to do with comorbidity of other illnesses, extenuating circumstances and admittedly, a giving and sort of whackadoo doctor. But if you are suffering from insomnia there are a few things you must realize. The first I already told you: keep yourself open to options. Something out of left field may surprise you. Solving any chronic condition is a journey, and it's one that's hard to take alone. You need a HCP (health care professional) that you like, trust, and generally connect with. If your insomnia is severe enough, you need a sleep specialist. If it's not that severe, you certainly don't need Xyrem anyway.

I also certainly hope that no one here believes Xyrem to be some panacea. It's really not. In fact, if I could be on almost any other medication for sleep, I would. I'm sure if I were in the spot I used to be in and still sleeping so poorly I'd be jealous of me, too, but it's so easy to just gloss over all of the difficulties that come with being on a medication so strictly controlled.

Per year, Xyrem costs over thirty thousand dollars. Yep, you read that right. Over thirty thousand dollars. My old insurance company has a picture of my face with a red line through it reading "do not treat." Because it's an Orphan Drug, many insurance companies won't want to pay for it-- and certainly not for off-label use. If they do decide to cover it, chances are once a year they will tell you they're going to stop covering it. Then you need to call your doctor and have him or her contact your insurance company and try to get an override or write a letter expressing medical necessity, which insurance can still deny. Even when things go well, it has to be shipped to you via FedEx overnight from their centralized pharmacy once a month. You have to be home on the morning of delivery before 10:30 to sign for the package, and if you miss it you have to run over to FedEx to pick it up. The drug itself is very short-acting, so your sleep hygiene must be impeccable and if you have trouble both falling asleep and staying asleep, there will be nights you'll be happy to get 4 hours between your two doses (not such an issue with narcoleptics).

When I sum up the issues like that, it doesn't sound all that bad... more like minor inconveniences. I've had a few too many battles with insurance agents, though, and after a number of years, those things really wear on you. By no means is it all sunshine and rainbows, and should never be viewed as such. It's an extreme solution to a problem that for most people is more easily solved via more palatable alternatives. Keep in mind that Xyrem is (as of now) not intended or approved for insomnia and most doctors will not use it for that except in the most extreme of cases, and/or in cases where other things are going on that really warrants its use. In fact, because of its Orphan Drug status, I'm not even sure all doctors are licensed to prescribe it, at least in the US (can anyone confirm?). Laws do vary by country, however, including what it's approved for, so if if you're an international user check Xyrem's status in your country.

I hope this helps shed some light on the situation, even for just one person. If you're hoping for Xyrem just for sleep, I don't want to burst your bubble... but my advice is to not hold your breath, keep on looking for something else, and find a doctor you trust to help you get better. Things may change, but that's how it is for now.

Post Quality Evaluations:
An interesting story, and thoughtful considerations on how to treat chronic diseases and on being prescribed an exotic drug...

Last edited by baZING; 08-04-2012 at 20:44. Reason: minor clarification

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ghb, ghb (xyrem), insomnia, xyrem

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