Xyrem Is for Cataplexy... Unless You're My Husband

For me, cataplexy is one of the scarier aspects of my husband's illness. Although not every narcoleptic suffers from cataplexy, it is a fairly common symptom of the disease. I've been living with narcolepsy for several years now, but I still remember the first time I ever saw cataplexy in action like it was yesterday. My husband's cataplexy is much better since his illness was diagnosed, but it is still a problem. It also still scares me. You've never seen two people stop laughing faster than the two of us when we're amused, lemme tell ya. That reminds me...

...many years ago, my husband and I went to a comedy show while on a trip. It was really fun and the comedians were pretty funny. One in particular was hysterical; I laughed until my stomach ached. During the evening however, I noticed my husband didn't laugh much. At times he gave a short bark of laughter and then put his head on the table. I assumed that he just wasn't that amused. After the show, when asked, he insisted that he had actually had a great time. He certainly sounded sincere, but I just didn't understand why he didn't laugh much. Now of course, I shake my head, imagining what torture that must have been for him! Prolonged laughter makes my husband collapse, where he remains frozen for several minutes. So suppressing his laughter for a couple of joke-filled hours would have been the only way to prevent a cataplectic attack - which I'm sure would have led to a huge scene and major embarrassment.

In my mind, my husband's cataplexy is pretty bad. But apparently, not bad enough. On a recent visit with his sleep specialist, my husband again asked about the drug Xyrem. Xyrem is used to treat cataplexy, and since my husband still has attacks, we thought we should look into it. To our surprise, his doctor seemed extremely reluctant to prescribe it. He mentioned that it was a "pain" to take, and really only prescribed to patients with severe cases of cataplexy. My husband and I were both taken aback. Sure, we know that there are those whose cataplexy is much, much worse, but we were shocked to hear that my husband's cataplexy is actually considered "mild." After further discussion, he recommended a different drug, which my husband is now taking and with much success so far (more on that drug later). We were intrigued with the information about Xyrem, though. That visit prompted me to do a little research:

Xyrem - "XYREM is a medication approved for the treatment of excessive (too much) daytime sleepiness and the treatment of cataplexy (weak or paralyzed muscles), both in patients with narcolepsy." That description is from the website. From those I've spoken to who currently take Xyrem, they admit that taking it before bed and then waking up to take a second dose can be troublesome. I also didn't know that it was a liquid drug.

I'm also now researching more extreme cases of cataplexy. I know of a few, but they are still very similar to my husband's. If you know of anyone whose cataplexy is a constant interruption, email me or post a comment here.

So for now, Xyrem isn't an option. After the research we've done however, maybe that isn't a bad thing.

Ten Things I Wish I Had Known Before I Married a Narcoleptic

This is my 50th post!

Pretty neat, huh? I wasn't exactly sure how long I'd write here, really. I'm pretty excited to publish #50. In honor of that, I thought it would be cool to post something I've been mulling over for awhile. I’m often asked about this: what do I wish I had known before I married a man with narcolepsy? A few things come to mind...

Ten Things I Wish I Had Known Before I Married a Narcoleptic 

1. A “good” doctor is key. Narcolepsy isn’t like any other illness. It isn’t just about sleep. It’s also about mood, self-esteem, daily functioning – quality of life. I wish that I had known that any old sleep specialist won’t do. The doctor needs to care. 
2. Finding the right plan takes time. Several different medications are used to treat the symptoms of narcolepsy and cataplexy. Not all of these medications affect narcoleptics the same way. Not all narcoleptics even have the same symptoms. Not all treatments (sleep schedules, dietary restrictions, exercise programs, psychotherapy) work for every sufferer. You’ll have to put in time and research to find the right treatment for your situation. I wish that I had known that trial and error is just part of the process.
3. Be careful not to let narcolepsy isolate you. Yes, it can be embarrassing to be with someone who always falls asleep in public. A narcoleptic’s occasional sluggish thoughts and speech can be awkward in a social setting. A cataplectic attack in front of others might be humiliating. Although it might be tempting to avoid these experiences altogether by separating yourself from the rest of the world, don’t. Narcolepsy can be isolating enough. Positive association with friends and family is key to maintaining normality. I wish that I had known just how important staying connected is to my family’s well-being.
4. Not everyone will be supportive. There will be those who just won’t understand your loved one’s illness. There are those who won’t even believe it’s that big of a deal. There are those who will make impolite jokes, insensitive comments, and generally get on your nerves when it comes to their lack of sensitivity about narcolepsy. Although you may want to try explaining the gravity of your situation until you’re blue in the face, don’t waste your breath on those who don’t care. I wish that I had known that I’m not obligated to defend our choices about narcolepsy to anyone, especially those who are unsympathetic.
5. There are worse things. It’s not cancer or AIDS or some other fatal malady. Yes, my husband struggles with his illness and it certainly affects our entire family. I don’t take it lightly and I wish that more people understood what a devastating disease it is. That said, it could be so much worse. I wish that I had known that "it could be worse" is a cliche that actually helps to keep things in perspective.
6. People without narcolepsy need care too. Maybe even more so. Sometimes we get so focused on my husband’s medications, sleeping habits, appointments, and general health that I lose sight of my own needs. In order to better help my husband and take care of myself, I need to stick to the obvious: get plenty of rest, maintain a healthy diet, exercise regularly, and find time to relax. I wish that I had known that sometimes it’s better for my whole family if I put my health first.
7. Hate the disease, not the person who has it. I've mentioned it before, but it's so true: I often view narcolepsy and my husband as two different people. This view goes a long way toward helping me to remember what's behind my husband's lethargy, disinterest, or forgetfulness. I wish that I had known that making the illness our mutual enemy draws my husband and I closer. 
8. Bad days are inevitable. We live in an imperfect world, so nothing will ever be perfect. With or without narcolepsy, no marriage or family is without problems. Narcolepsy will probably lead to some crummy days, but it doesn't have to mean anything more drastic than that. I wish that I had known that having a bad day isn't a sign of failure. 
9. Humor helps. Really, it does. Some of my husband's crazy sleep-speak is pretty hilarious. Every now and then, his cataplexy can even be funny. I wish that I had known that being able to laugh at narcolepsy is a healthy way of coping with a sometimes overwhelming disease. 
10. All you need is love. The Bible said it first and the Beatles sang about it. Just imagine if your love for the narcoleptic in your life was stronger than your impatience, your frustration, and your anger over this exasperating disease. I wish that I had known that with real effort, love really can surpass all of the negativity narcolepsy can generate.

In case you didn’t notice, I didn’t say that I wish that I’d known my husband had narcolepsy. I left that out intentionally. It doesn’t matter, really. Even if I'd known that he was ill, I would've fallen in love with him anyway. But a list like this would've helped me to know what I was getting into.