Monday, September 17

Throwing Good Medicine Down the Drain

A couple of weeks ago, my husband accidentally threw an entire bottle of Nuvigil away.

He had gotten his prescription filled, taken one dose, and later that day, he threw it into a public trashcan with a bunch of other trash. He didn't even realize it until much, much later.

We were not happy.

Our co-pay for this drug is $35. Now maybe that isn't a lot for some families, but if your household is anything like ours, you're on a tight budget. We budget a certain amount each month for doctor's appointments and medications, and our (ridiculously) expensive health insurance. I knew that shelling out an extra $35 for medication was going to sting, but just a little - especially compared to something like a failed transmission (July) or insurance for an unexpected new vehicle (August). The main problem was the hassle of explaining to the insurance company that my husband simply lost the medicine. He didn't sell it, take it all, give it to someone else, feed it to the cat... or whatever else they suspect when this happens. Fortunately, the doctor's office was quite understanding and helpful. Although it wasn't immediate, my husband was able to get his replacement prescription within a reasonable amount of time... considering.

So it was actually a little while before my husband took his Nuvigil and Prozac together. What a difference! One day he actually said, "I feel great!" I was very happy to hear it. Finally, a drug combo that worked perfectly! (Yes, I know, go ahead and roll your eyes.) A short time later, I asked my husband if he was still feeling great, and he was, but... Taking them together seemed to have a few side effects after all (of course). Mild anxiety, appetite suppression, and feeling wired. As we talked, I realized that those symptoms sounded awfully familiar. Sure enough, moments later, he said, "It basically feels like Adderall without the aggression." Immediately, I thought, Oh no! Not again! But he went on to explain that without that Adderall Edge, he actually felt okay, just a little too wired. After a day when he got up at 4am, mowed the lawns, washed the car, ran errands and then started on a major project in the garage, I had to agree. Wired? More like AMPED.

For now, our solution is for my husband to continue to take the Nuvigil daily, and take the Prozac every other day. When he sees his doctor again this month, we'll talk about adjusting dosages. If that doesn't work... back to the drawing board.

Monday, September 10

Narcolepsy + Cataplexy + Depression = Prozac!

The mystery drug that I mentioned in my last post? Prozac. If you just said to yourself, "Really? Hm..." Then we shared the same reaction.

It was almost some sort of joke:

Prozac can reduce the severity of cataplexy!
Prozac can increase the severity of cataplexy.

Prozac can restore a dampened libido!
Prozac can cause a loss of libido.

Prozac can improve depression!
Prozac can increase depression and lead to suicidal thoughts.

"Are you kidding me?" I yelled. Okay, I didn't really yell, but I was baffled. So basically - as with many "solutions" the world has to offer - it was a crapshoot. Either it would help my husband's symptoms... or it wouldn't.

As we researched Prozac, I was shocked at the stigma still attached to it. It's a running joke now of course - want a permanent smile? Pop some Prozac! But, goodness, it's been out for ages - at least since the 80s.

I can see the humor, though. My favorite Prozac joke is a cartoon that I've saved:

The verdict? Well, he has just been taking Prozac for a few weeks now, but my husband is very impressed with the improvement in his mood. It isn't such a significant lift that I've noticed him walking around with a permanent grin (which would be creepy), but he does seem to feel better. More importantly, he is impressed with the effect it's had on his cataplexy! No more extreme weakness after his naps, no more fumbling to turn a doorknob, no nausea or faint-stomach feelings after trying to stand after a nap. So the results have been positive so far. I'm happy for him, of course, and also relieved that it's covered by our insurance. The cataplexy isn't gone, but it's better.

I have a lot more to say about the symptoms of Prozac, but for now, I'm still focusing on the cataplexy information I've discovered. I didn't know anti-depressants can help with cataplexy, and I'm still trying to articulate (for the purposes of this blog & myself) exactly how that works. For those of you who have contributed so much information about cataplexy - thank you so much! It's quite informative and very interesting.

Just when it seems like I couldn't learn anything else about my husband's disease - I do!

Tuesday, September 4

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.