Monday, August 23, 2010

My girlfriend has a sleep disorder and is on Xyrem?

First, some background information -
Xyrem is used to treat Narcolepsy. Primarily it was found to be an excellent help to people who have the Narcolepsy symptom “cataplexy” which causes temporary loss of control of specific muscles or muscle groups, which can result in something unnoticeable to observers (like a mild twitch in the bicep), or a complete body collapse. Sufferers are usually awake and aware for these episodes, but unable to communicate for anywhere from a few seconds to a few hours (which is rare).
As well as being one of the best treatments available for severe cataplexy, it is also helpful in improving one’s quality of sleep. The problem with Narcolepsy is that it messes with the body’s ability to regulate sleep and wake cycles, and the various mental and physical controls that apply to each. Narcoleptics may be up most of the night and unable to stay awake all day. When we do sleep, it is often not restorative because the brain does not regulate the different levels and amounts of sleep properly.
So there are two ways to come at Narcolepsy: with stimulants for staying awake at the right times, and depressants for sleeping at the right times. Most sleeping pills will knock you out, but Xyrem is the only solution that seems to actually improve the sleep itself. If you’ve ever taken a sleeping pill, you know what I mean about the difference. You might be out for 8 hours, but you still feel groggy and out of it the next day. With Xyrem, users generally don’t get that next day “hangover” and are able to function more normally.
Now, for your specific situation -
If your girlfriend is on Xyrem, I have to assume she has Narcolepsy. If she has Narcolepsy, she has spent a lot of time not sleeping properly, and sleep deprivation can have devastating effects mentally and physically. It can cause depression, chronic pain, hallucinations, irritability, etc. Already, three out of the four I’ve mentioned would fit with your description of her intolerance and being upset, especially if she experiences pain.
Once we Narcoleptics are diagnosed, we get put on stimulants. Speed. One of the more prevalent medications is Ritalin - a highly addictive methamphetamine that some of us cannot function without. And “uppers” cause, you guessed it, irritability, depression, and chronic pain. So when you have condition that makes you a miserable B**** (and I’m even referring to myself here), and then take medication that makes you feel like a miserable B****, you tend to walk a thin line.
The next questions are how long has your girlfriend had a diagnosis, how long has she been on Xyrem, how much is she taking, and when did she change the dosage (if she has)? The newly diagnosed are probably going to have to try several different medications and combinations to find something that helps. And it can be very hard to wait and hope and wait and then sometimes come to the realization that although certain treatments make you feel better, you may not ever feel normal again.
Depending on how long she’s been taking Xyrem, she may be experiencing temporary side effects that will subside as her system gets used to it. If she has recently gone up a level on her dosage, she may have to go back down to the previous dose for a little while longer until her system can tolerate it. She may have to go up in smaller steps (say .5mg instead of a full 1mg **THIS IS NOT XYREM DOSING, JUST AN ANALOGY**) to help her body get used to this more gradually.
The first thing I would do is educate myself. Learn what you can about her condition and treatments, and show that you really do care about what is happening to her and how she’s handling it. One of the hardest things we people with Narcolepsy have to deal with is the public’s general assumption that we are lazy and unmotivated. If you get her to realize that you know she is not lazy, but has a condition that prevents her from being able to do everyday things, she may be able to relax.
Once you have the knowledge, talk to her about her specific experience. Tell her you’ve read about (whatever treatment) and ask if she’s ever tried it, and what happened? Ask her how long she’s had symptoms and how long was it before she got a diagnosis.
Then you can approach your specific issue. Acknowledge that she must feel pretty crappy sometimes, whether it’s from Narcolepsy itself or the treatment, and that you notice she’s just not herself sometimes. Rather than accuse her of attacking you or going on the defensive, understand that those of us who feel like this need a vent, and that she is not upset with you, but you are the one person who is there that she can lay it on.
Many times, after acting just like you describe to my boyfriend, I end up crying my eyes out because I know he doesn’t deserve to get that from me, but I just can’t help it sometimes. Since he tries to understand that, it is much easier for me to go apologize and say “I’m so

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