I'm back...

I know I have been MIA for a while...let's just say my life will hopefully pick up in the next 1-2 months as I figure out my health issue(s), finish treatments, and get a job! I'm looking forward to being able to be useful and work full time!

The past few months have been an interesting journey for me. I have learned a lot about my limits, about patience, about the Lord's timing, and about giving people the benefit of the doubt. Not being able to frankly talk to people about many of my trials has really made me realize how you NEVER know what people are really going through. "Judge not that ye be not judged" (Matt 7) has a whole new meaning for me now. I think this is one of the most important things I have learned through this whole experience.

Now...on to Xyrem. Through my whole narcolepsy research I relied heavily on word of mouth, anecdotal evidence from people on blogs and discussion boards who have been on the medication to make judgments about if it was right for me. I feel that it is time to give back and tell my story and let others take it for what it's worth.

First of all, I am a relatively small person, never taken any serious medication in my lifetime. This was my first experience with a serious drug, or anything mind-altering, for that matter. Having never drunk alcohol or experimented with any kind of drugs...this was definitely an eye opening experience for me. My dr started me out on a very small dose given my size and adverse reaction to my very first "normal starting dose". (I had an emotional episode in which I was laughing and crying uncontrollably for 20 minutes. That should have been my first red flag.) The way that Xyrem affected me in my first two months of two dosages (1.1 g, then 2.25 g) is how I imagine it feels to be drunk/high. Within about 5-10 min after taking it, I start to feel very numb, I feel like I'm floating, my head starts spinning, mental fogginess, slurred speech, and if I try to get up I lose my balance and fall. I usually am able to get a good 3-4 hours of sound sleep before waking up to take my second dose.

Interestingly enough, the Xyrem occasionally seemed to exacerbate some of my N symptoms- the first time my dr raised my dose, I had my first ever cataplexy attack, and the second time, I had a series of very vivid dreams and hallucinations, as is characteristic for people with N. She has been unable to explain to me why this happens.

After a while on the 2.25 g, I felt like I was sleeping well, but I awoke physically drained, like I'd just ran a marathon. Even though I told my dr that I had felt more alert after the very first 1.1 g dose, she nonetheless raised my dose to 3 g twice nightly. For three nights on this dose, I slept fine through the first one, and upon taking the second dose, I just laid in bed for hours, numb, but in no way drifting off to sleep. Having read of this happening to other people who were trying to readjust their dose, I became suspiscious that my dose was too high. After Day 5 of the 3 g dose, I had a full-fledged panic attack in the middle of the day- chest pains, difficulty breathing, rapid prolonged pulse throughout the whole day. Not connecting the dots, attributing the attack to my family history of anxiety, I remained on the dose. Two days later, I had a second panic attack, accompanied with extreme depression. After some research, I found that others had similar experiences with Xyrem inducing extreme anxiety and depression. I called my dr, who advised me to return to the 2.25 g dose.

After some more research, I found that the main ingredient in Xyrem is a controlled substance that is sometimes sold on the street as a date rape drug, and a rave drug (surprise, surprise) and that "the precise mechanism" by which it works "is unknown". Oh good. Also this drug has been out on the market for less than 10 years and I am an active part of the research they are doing on it now, as I am to report any and all side effects to the company for legal purposes. Basically, I am a human guinea pig.

Instead of returning to the 2.25 dose, I became so freaked out by the extent to which this drug altered my mind, I opted to discontinue my use of Xyrem for now. Upon starting the program, they told me that there are very few problems with dependency on the drug, so if I were to ever skip a dose it would not harm me in any way. so that night I opted not to take any. well since I had been on too high of a dose (I speculate), my whole body went into withdrawal mode. it was really scary. I was shaking and sweating uncontrollably, and had laid awake the whole night in a lot of pain until about 6 am, when I woke mitch up and asked him to go get his dad. so they gave me a blessing, and IMMEDIATELY after the blessing I crawled back in bed and passed out. no pain, completely at peace, etc. it was such a relief. last night was my second night without the meds and I fell asleep just fine, no problems. anyway that's my little testimony (just one of many experiences with the priesthood) that the priesthood WORKS. I've always known it does, but it was just a powerful reminder.

Mitch's mom and I talk a lot of about medicine. pretty much everyone in their family has ADD...and she said something really interesting the other day about how she refused to let her kids go on ritalin or any of those freaky drugs, because the side effects are so COMMON and so bad- hallucinations, depression, difficulty breathing, mental fogginess, physical dependency- why would you deliberately put something like that into your body that CREATES DEPENDENCY, ALTERS YOUR MIND, AND TAKES AWAY YOUR FREE AGENCY. anyway just through a lot of research I've been doing about pharmaceutical companies and stuff...a lot of these prescriptions are little more than a huge racket for the doctors and drug companies to make people dependent on medicine so that they can rake in the $. heck, a lot of "antidepressents" actually GIVE people suicidal thoughts! and look at the drug that I was just on- which was basically a narcotic disguised as a legal drug to make me sleep!

I'll get off my soapbox but the more research I do, the more I realize how careful you have to be these days in taking care of your body. just because the government puts their stamp of approval on some drug, that does not necessarily mean it's a good idea to take it. Obviously drugs affect people differently, so if you can receive the benefit of that drug without the side effects, good for you. I just wish I could have come to this conclusion without my freaky experiences.

Basically, it looks like I will be dealing with my N the good old fashioned way, whatever that means. Whether it means restricted driving, doctor-sanctioned naps, or just dealing with being tired all the time, that beats letting mind-altering drugs take over my body, thankyouverymuch.