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!

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.

How to Rid Your Home of a Flea Infestation

Nope, you're not in the wrong place. Yep, this is still a blog about narcolepsy. Yes, my husband's narcolepsy did lead to a flea infestation in our home... in a rather roundabout way. Here's what happened:

I research narcolepsy constantly. Every week (at least!) I discover something new and interesting about my husband's illness. Well recently, I did some research about ESAs - Emotional Support Animals. Are you familiar with the term? An emotional support animal is jut what it sounds like; it offers emotional support to someone who desperately needs it. It's more than a pet - it's a friend, confidante, and someone to care for. Of course my husband has our young daughter and me, but I thought an ESA would be great for him. It would be just his, and since he's been a long-time cat person, I decided to ask him about adopting an adult cat. My husband loved the idea and voila! we added an adult female long-haired cat to our family. She and my husband were instant best buds, which was great. Unfortunately, our new friend had a secret problem that she neglected to mention to us: FLEAS.

I admire all of creation, but I must admit, fleas are disgusting, annoying - and in groups - horrifying! I've never experienced a flea infestation, and if you haven't had the pleasure, lemme tell ya - it's a nightmare. (psst... for those of you who have emailed me recently, this post is why I haven't gotten back to you yet! You know who you are...)


No, not that Flea.

That flea.

It started with just one. Well, just one that we could see, anyway. Before we knew it, they were everywhere! By the time we noticed that we might have a problem, we had a problem. Fortunately for our household - it could have been worse, and, our solution worked wonders. So for all pet lovers, animal hoarders, and cat people, here is our guaranteed (almost) method of removing unwanted fleas from your home. (I'm assuming you don't want fleas in your home.)

STEP 1. Get sprayed - I mean you. Seriously, even before you treat your pet, treat yourself. I highly recommend using a bug repellent with a high concentration of DEET, which I wouldn't typically recommend using. However, this is an emergency, and sometimes flea bites can actually make you ill. So get bug spray and treat your feet and ankles and whatever's on them (slippers, shoes, socks, etc.) and the cuffs of your pants every day until the fleas are gone. Remember, fleas need blood to survive. It doesn't matter whose.

STEP 2. Treat your fur baby. Now it's time to treat the animals in your home. If your situation is as simple as ours, it will be fairly easy. We have one indoor cat. If you have multiple pets and/or outdoor pets, your situation is going to be harder to control and more expensive to fix. Just sayin'. In any case, get a high-quality flea treatment for your animal(s). If necessary, take them to your vet to get a thorough flea bath and treatments. If that isn't necessary, use what we did - Flea Killer Capsules! We were impressed with these. You can hide the pill in a treat or open the capsule and dump the contents in kitty's food. Whatever you use, don't skimp on the quality. This is not an area where cheaper is always as good as the name brand stuff. You'll want to treat your pet immediately after you treat yourself. Now when fleas jump off of your furry friend, they won't find their next meal in you. Also, if you use a treatment like the one we like, the fleas that do bite your pet will die!

STEP 3. Start cleaning. This is the part that will take the most time, but it is necessary. You will need to gather or buy the following:

• Ammonia, bleach, Pine Sol, or anything else you prefer to use to wash hardwood, tile, or linoleum floors.
• Carpet powder, soap for a steam cleaner, or anything else you prefer to clean carpeting and rugs.
• Laundry detergent and fabric softener (if you don't already have plenty)
• Black plastic trash bags and ties (they need to be black)
• Flea killer spray (We loved Hot Shot)
• Dishwashing liquid
• Disposable plastic or aluminum pans (like the pans pie crusts come in)

Once you get all of your supplies together, here's what to do:

• Wash anything that has been contaminated, using hot water where possible. (If this overwhelms you, just wash what you need to for now. Store dirty or clean laundry, shoes, bedding, or anything else that you can't get to yet, in black plastic trash bags until you're ready to wash everything and put it back in place.)
• Anything that may have been contaminated doesn't necessarily need to be washed, so you can throw it in the dryer on high heat. The heat will kill both fleas and eggs. (Notice I said "may have been." Better safe than sorry.)
• Anything that can't be washed - place in large black plastic trash bags, tie them closed, and place in hot sunlight. The heat generated inside the bag will kill fleas and eggs.
• Anything that can't be washed, dryer dried, or bagged, spray with flea killer. I had to spray a couch and an easy chair - among other things.

Start on the floors:

• Mop, steam clean, hand wash... whatever will get your floors clean. You'll get rid of lots of fleas this way and disturb their nests and eggs. Do a thorough job so that you won't have to do it again later. We have hardwood floors, so I used hot water and a generic lemon ammonia cleaner to mop the floors.
• Once your floors are dry, start spraying everything with your flea killer. I hate using lots of chemicals in my home, but this stuff works great. Spray whatever you can from the floor to the couch. Don't forget to treat underneath chairs and couches, long curtains, behind shelves and cabinets... try to get something in every nook and cranny. The spray will kill on impact and kill any eggs, but you'll need to spray again in a couple of weeks so that you aren't enduring a second infestation weeks later. Don't forget the litterbox or dog bed - places where your pets hang out too!

STEP 4. Now set out your traps. What traps, you ask? Why, your flea traps of course! No need to spend 13 bucks on one - just make your own.

• Put water and dishwashing liquid (just a drop or two) into a shallow dish or pie pan.
• Set one trap in every room of your house.
• The key to these traps - to attract the fleas - is to set the traps under light. At night, move a lamp to the floor, put a trap beneath it, and turn out the lights in the rest of the room.
• In the morning, check your traps for dead fleas to see if your problem still remains. If you only see a couple of dead bugs, don't fret - this is a good sign! Hopefully it will be empty, but if it's full - uhoh - you may need to go back a step.

STEP 5. Sigh in relief. You're done! You should see either a significant decrease in the flea population in your house or none at all. I found one today, but it wasn't moving too quickly. I got out my spray and covered a corner of my office that I missed. Also, don't forget to breathe. You can always burn your home to the ground. Okay, I'm kidding. But seriously, it's gonna be okay. You don't have to try to rid your home of fleas in just one day. Do what you can when you can. It took my husband and I several days to really make a significant difference. I'm still working on my office and the kitchen.

P.S. If you just don't have the time or energy to do all of the steps listed here, @ least clean and spray your floors. If you prefer, you can even call an exterminator. My method is for the average family, who, like us, doesn't have the budget for an exterminator and just wants the fleas gone with as little chemical interference as possible (that's why I don't mention using a fogger).

If this post bored you to tears, I'm sorry. But this experience really shook me up! I just had to pass on this info to anyone else who might ever go through a home taken over by fleas. The lesson I learned? Once again, narcolepsy interrupts our lives. :o)

That Fine Narcoleptic Line

Narcolepsy can be tricky sometimes.

Everyone makes mistakes, has idiosyncrasies, or experiences periods of forgetfulness. Narcolepsy ramps that up to a whole new level. See, when the effects of narcolepsy are more dramatic (cataplexy, sleep paralysis, etc.), people seem more empathetic. But when the effects of narcolepsy are more mundane, people seem to doubt that narcolepsy is even the culprit behind the symptom. Consider the following:

My husband is often late for work. This is despite my best efforts in helping him to wake up well before he needs to leave, preparing his work clothes and lunch, constant notes and reminders (like the one next to the front door which reads, "Wallet? Keys? Meds?", and warnings from superiors at work regarding his tardiness.

My husband is extremely forgetful. (Is there a word stronger than "forgetful?") If he has a grocery list with ten items in hand, he'll forget one. He forgot to stop and gas up the car so often that we finally decided to fill the tank on the same day every week, but he still forgets occasionally. Often, he's only made aware when his car runs out of gas and stops on the side of the road.

It is impossible for my husband to repeat a conversation that he just had. If someone calls us, it's best to let the answering machine pick up if he's is the only one available to answer the call. He simply cannot relay a phone message. Immediately after hanging up, he'll hold his head in frustration, struggling to remember what was just said.

 

The list could go on and on. They may seem like your everyday idiosyncrasies, but for my husband, they are just more of the annoyances that come with having narcolepsy. For me, it's a reminder that there is a fine line between (stereo)typical husband behavior and a narcoleptic's unavoidable errors. Sometimes the line is so fine... that I forget it's even there. I must constantly remind myself that my husband hates making the same little mistakes repeatedly... and I ain't perfect either.

The Isolation of Narcolepsy

I feel a little down today.

This has been one of those weeks when I'm repeatedly reminded of just how much narcolepsy can isolate a person from the waking world.

Most people just don't get it. They watch your loved one fall asleep and judge. If your spouse isn't by your side, it's assumed that they must be asleep. They make jokes, or ignore you, or interrupt impatiently as your narcoleptic loved one searches for the right words. Sometimes, you get left out of dinners, parties, and anything else even remotely fun.

But it's not always someone else's fault.

Sometimes I decline invitations because I just don't want to deal with narcolepsy in a social setting. I don't want to nudge my husband awake, wake him when he begins to snore, or watch him worriedly as he fights to control a laugh. It can be exhausting, so at times I'd just rather stay home.

Then there are the let-downs: dates aborted because my husband is too tired to continue. Movies left unfinished... until further notice. Intimate moments become awkwardly silent. When one half of a partnership is always tired, the healthy spouse must quickly get used to the old adage, "let's play it by ear."

Much of the time, I'm okay. I have enjoyable hobbies, a few supportive friends, my volunteer work, and of course, my beloved child to fill my days with joy. But sometimes... narcolepsy leaves me lonely. Which leads me to days like today, when disappointment makes me a little weepy and I go to bed early.

Gray days are inevitable. But knowing that they can't last forever helps make it okay.

Adderall Night and Nuvigil Day

Do you know the difference between night and day? I do. It’s my husband on Adderall and my husband on Nuvigil.

My husband is so much closer to normal – our version of it anyway. He isn’t keyed up and agitated, his appetite has returned, and he is able to sleep somewhat. 

Things could still be better, though. Nuvigil is not the perfect solution; if he doesn’t eat when taking it, he gets headaches and he still doesn’t get enough sleep. He also still has mild anxiety attacks every now and then. We’re working on that part.

But for now, I’m delighted with the difference.