The Nuvigil Stands Alone

As of now, it really does help by itself.

The combinations just haven't worked for us. My husband has tried several, but after the last one, he decided that Nuvigil would suffice for now. While the Prozac/Nuvigil combo gave my husband a manic amount of energy, it also made it even more difficult for him to sleep, and gave him frequent headaches.

Although the Nuvigil isn't the perfect solution, it is working well with limited side effects - which is about all one can ask for, right? Especially considering the side effects that are possible with Nuvigil.

(from the official site:)

• NUVIGIL may cause serious side effects including a serious rash or a serious allergic reaction that may affect parts of your body such as your liver or blood cells, and may result in hospitalization and be life-threatening. If you develop a skin rash, hives, sores in your mouth, blisters, swelling, peeling, or yellowing of the skin or eyes, trouble swallowing or breathing, dark urine, or fever, stop taking NUVIGIL and call your doctor right away or get emergency help...

• Mental (psychiatric) symptoms, including: depression, feeling anxious, sensing things that are not really there, extreme increase in activity (mania), thoughts of suicide, aggression, or other mental problems

• Symptoms of a heart problem, including: chest pain, abnormal heart beat, and trouble breathing

• Common side effects of NUVIGIL are headache, nausea, dizziness, and trouble sleeping. These are not all the side effects of NUVIGIL.

For now, Nuvigil is keeping my husband awake when he wants to be, and his Cataplexy seems to have let up somewhat. Until it stops working, just we'll be content with that.

Incidentally, I wanted to mention something that has been immensely helpful to our family while my husband is out of work. Without health insurance, affording Nuvigil would be impossible for us. After contacting the Cephalon Cares Foundation, they have awesomely provided my husband with the medication he needs at no cost. In case your loved one needs Nuvigil but can't currently afford it, I'd highly recommend contacting them to see what they can do for you.

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.

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!