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.

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.

Narcolepsy and the Roly-Poly

Narcolepsy turns my husband into a roly-poly.

You know what a roly-poly is, right? We have tons of them in our garden. They meander along, perfectly content until you touch them. Then they immediately curl up, hiding themselves away until the perceived danger has passed and they can get back to their roly-poly business.

For my husband, cataplexy - narcolepsy's evil twin - is the worst during times of emotional stress. If you aren't sure what that means, think of the most stressful moments of your day - good stress or bad - and imagine collapsing into a skin puddle every time you react. Whether it's laughter, anger, or tears, you lose muscle tone and slide gently to the floor... hopefully. Most of the time, my husband ends up falling in an ungainly heap that looks fairly painful. It's worse than fainting because the sufferer is still awake! My husband can hear everything when he suffers a cataplectic attack - he just can't do anything about it. So maybe it would be more accurate to say that cataplexy turns my husband into a roly-poly.

Understandably, he is usually very reluctant to get emotional. While any emotion can make my husband get physically weak, the higher the emotional strain, the weaker he gets. But he isn't completely impassive. He’s just a lot more reserved than I think he would be without the constant fear of (literally) falling on his face. This emotional reluctance means that my husband avoids confrontations of any kind like the plague. Confrontations of any kind, including possibly difficult discussions with his wife, me. Now my definition of difficult and his version of difficult are vastly different. I don't think it's always that hard to review our budget or talk about our goals. My husband however, finds those conversations awfully tough. Sometimes he finds them impossible. That's when he becomes a roly-poly and hides until the danger - our difficult conversation - has passed.

Roly-polys hide by curling into a ball. My husband hides by sleeping.

I used to resent my husband's seeming indifference and avoidance of the more tedious aspects of marriage and general grown-up stuff. After his diagnosis, though, I am working to understand that he wants to have those harder conversations... but a lot of times he just can't do it. And the more impatient I act toward him at those times, the guiltier he feels about his inability to participate. The guiltier he feels, the more tired he becomes...

It's amazing to see the change in him, actually. He starts out like a normal person, listening, aware, wide-eyed. But as our conversation continues, his eyes droop dramatically, his face begins to go slack, and within five minutes, he is quite obviously very, very sleepy. He may try to hold out for a little longer, insisting that we continue, but not only is his obvious exhaustion a huge distraction, the conversation becomes more and more one sided. His responses take forever, and then sometimes they don't even make sense. His mood changes (would you be happy talking about your bills while you were falling asleep?) as does mine (frustration, mostly), and just a few minutes after the conversation begins, it's over. When he wakes, my husband is always both apologetic and embarrassed, but I'm quick to apologize too. My impatience isn't directed toward him. It's directed at this exasperating disease.

As I mentioned in a previous post, until we find a better solution, I’ll do my best to keep a firm grasp of the reigns... without making my husband feel guilty for needing me to.

Narcoleptic Does Not Equal Lazy

A narcoleptic may be tired, but that doesn't mean that they can't get things done. The other day my husband did chores, completed a repair on the car, ran errands, took our daughter on an outing, and was able to stay awake at the dinner table.

Image courtesy of Ambro/FreeDigitalPhotos.net

When we moved, my husband pushed himself all day in the hot sun until our large moving truck was empty and all of our furniture was (roughly) in place. Before the group of people we had helping us left, he passed out. Literally.
He collapsed, unable to get up, and slept for hours right where he'd given out. It wasn't until that evening that he was able to struggle to take a shower and collapse again - this time into bed.

So although my husband can at times force himself to keep going when all he wants to do is sleep, it isn't good for him when he does. It only intensifies his symptoms and sometimes makes his cataplexy more severe.

Although the temptation may be to push himself until he drops, it just isn't a lasting solution. The recovery is just too taxing.

Cataplexy Isn't Funny In Person

When our daughter was born, my husband almost dropped her once.

I was enraged. How dare he risk our child's life by not being aware enough to put her down when he realized how tired he was?

Looking back, I can't believe how unreasonable I was.

The first time I remember meeting Narcolepsy's close personal friend, Cataplexy, my husband and I had been dating for awhile. He had this weird habit of taking deep breaths and closing his eyes whenever he was really amused at something. It was like he was trying to keep himself from laughing. Sometimes when I give into hysterical laughter, I get a bit of a piercing headache that goes away quickly. Sort of a laughter-brain-freeze, so I understood his desire to suppress his laughter.

But he wasn't always successful.

One day we were having a great time - dancing, laughing, playing around, and in the middle of laughing, he suddenly fell to the floor. Quite suddenly, actually. This was no slow slump or slide down the wall - he fell down like he'd fainted or something. Still laughing, I went over to him to help him up. I thought he was still joking around. I put out my hand.

From Vector Magz

"Come on, get up," I said.
When he didn't move, I stopped laughing and stared. He was just lying there, eyes open, his face still frozen in a smile. It was creepy. He looked like the Joker.
"Come on, knock it off," I said, and grabbed his arm.
It took a few minutes, but I finally got him to "unfreeze" and take my hand. By now, I was concerned... and confused.
"What's wrong? Did you hurt something?"
He didn't respond.
"Take my hand, I'll help you up," I said.
He whispered, "I can't."
I looked around as if someone could help us, but we were alone. I considered calling an ambulance.
"Why can't you get up?" I asked again.
His hand moved in mine - very slightly.
"I can't make a fist yet," he said.
Several minutes passed. Finally, he gained enough strength to sit up and I helped him onto the couch. Within 20 minutes, he was back to normal.

My soon-to-be-fiance was embarrassed and couldn't really explain what had happened to him. He told me that any strong emotion - anger, laughter, fear, even excitement - could cause him to "feel weak" and sometimes even collapse.

Baffled, I told him that he probably just needed a multivitamin.

Years later, after his narcolepsy/cataplexy diagnosis, I apologized to my husband for yelling at him the day he almost dropped the baby. I know that accidents happen and I also know how much he adores our daughter and would never intentionally put her in danger. He gracefully accepted my apology, but then I told him that I had a confession:

Once when I was changing her diaper, she fell off the changing table.

I swear I don't know what happened! One minute she was on the changing table, preparing for a new diaper, and the next minute she was on the floor, staring up at me with a really surprised look on her face. That's not the best way to discover that your baby has learned to roll over, but it happens. I was frantic but she was totally fine. You know, my husband didn't even get angry - didn't call me a hypocrite... he didn't miss a beat when he said,

"Good thing we had carpeting."