Wish This Wasn't so Hard

Today I read a friend's post on a support group message board. She is likely having an allergic reaction to Xyrem, one of the best drugs available for narcolepsy. This great woman has already faced a number of struggles, and now she is forced to confront this heartbreaking issue. Sadly, she has already tried stopping the Xyrem once before after having a reaction, so it is likely that the Xyrem IS the cause. Unfortunately, many narcoleptics share similar stories. Rarely do two of us find that medications work in the exact same way. Often, what works incredible well for some folks is absolutely horrific for others.

I happen to be someone who had an awful reaction to the other standard narcolepsy treatment. The American Academy of Sleep Medicine determined in December 2007 that Xyrem and Provigil (modafinil) are the best way to treat narcolepsy. The Xyrem allows the narcoleptic to have a more restful sleep, while the Provigil helps to keep the patient more alert during the daytime. For many patients the combination works extremely well. Unfortunately, my friend is having trouble with the Xyrem, and I nearly lost my mind (and my body) taking Provigil. It made me incredibly anxious, particularly in the morning. I know that it worked better than either of my stimulants at keeping me alert, but I am convinced it simply worked too well. I am convinced that the half hour I spent each morning curled in the fetal position was the result of the current dose interacting with the previous days dose (all while coming out of my night time Xyrem dose). I also lost weight hand over fist. I am not sure what the total weight loss was, but I know that I lost 20 pounds in a six weeks period. For the final three weeks, I ate multiple times during the day, cramming in food until it hurt. I still dropped 10 pounds in the course of those three weeks. When I finally got in to see my doctor, he insisted that I stop the Provigil. The anxiety cleared within 36 hours, and my appetite returned.

Since then, I struggled to function on a sizable dose of methylphenidate (Ritalin) and now get by on 50 mg of amphetamine each day. Friends who know how much amphetamine that I take are stunned when I tell them that it simply lets me get out of bed. It does not give me a tremendous boost of energy. Instead, I simply feel like I can actually survive my day. In fact I fell back asleep and faded in and out during this past Sunday morning after taking the amphetamine. That is insane, but that is narcolepsy.

I know this frustration is on my mind today because of my friend, but learning of another narcoleptic's struggle regularly triggers these emotions for me. I would guess that others with the condition experience something similar. How can I not read about someone else's hardship with this bizarre condition and immediately have my own wounds reopen. Beyond the medication roulette that so many of us play, our physicians often are more troublesome than anyone could imagine. This disease is not well understood. As a result, only a handful of doctors (even those in the specialties that treat it - pulmonary and neurology) learn much about it. My first pulmonary doctor did have the insight to order the polysomnogram (an overnight sleep study) and the MSLT - Multiple Sleep Latency Test (basically, a series of naps). What he did NOT do is tell me to stop taking my antidepressant. I have no idea if my narcolepsy would have been identified three years earlier, but I certainly am suspicious.

In that same vein, many other narcoleptics have had doctors suddenly re-evaluate their conditions. They go to new physicians who question the old diagnosis. Some even have doctors who refuse to believe the obvious symptoms that the patients exhibit and will not order the proper sleep tests. As a result most narcoleptics feel like they are banging their heads against brick walls - ones with big, sharp spikes popping out at random intervals. Certainly, the only choice is to cope, but that can be so hard when fatigue is your constant companion. I am lucky. My narcolepsy, while a huge burden, is not accompanied with cataplexy (at least not yet). If I do develop cataplexy I will likely be unable to drive. Thankfully, I can still do my job, although only part-time. I can also help my wife and play with my daughter. But even today I am angry about what I did not do. I finished my grades and cleaned my classroom. I dropped off items for my summer course and did some shopping. I will even manage to do some cleaning, but it is NOT enough. My wife also had a rough day. She is now out playing ultimate Frisbee, which she needs to do. If I don't get the kitchen cleaned, I will be letting her down, but worse I will be creating more work for one of us down the road.

Narcolepsy is an evil and silent menace. Daily, I feel like I wade into combat with it. Today was hard because it seems to have the upper hand on a friend. Maybe that helped it have the upper hand on me too. I know I have been off today. Some of it is the lack of "teaching" in my day. Of course, I will likely write next Monday that my teaching drained too much from me. Darn, that balance concept keeps popping up. There is no magic pill for this condition. There is no special surgery. Narcolepsy just is. Thus, I will go to sleep at 10 PM and get up at 5:30 AM and do my best to find the routine that will help me stay as balanced as possible.