Monday, May 2

When Narcolepsy Is Not the Only Issue

When you are married to someone who is chronically ill, the illness is rarely the only issue.

The illness and all required to cope with it are a major part, of course.
There are the obvious logistics: the battle to cope with tweaking medications, side effects from tweaking those medications, doctor's appointments, hospital visits, therapies, and the scheduling and travel involved with the whole process.

Then there are the less obvious social aspects: dealing with everyday life while battling constant fatigue, trying to focus at work or school, finding time - and energy - to maintain friendships, marriage, and a quality relationship with your children, all while dealing with the stigma and isolation living with a relatively unknown, incurable illness creates.

Don't forget the extras: there may be financial difficulties, emotional trauma, struggles with family, friends or even medical professionals who just don't understand. The list can be endless.

It's enough to drive even the most patient person to distraction, the strongest person to tears of frustration.

But what if that wasn't all?

What if there was something else lurking at the edges of your life, waiting to upset the precarious routine your family has finally settled into?

That's what happened to us.

Among other things, my husband had to face down yet another illness, I became very ill, we moved, our old-but-faithful car gave up, and worst of all, worst of all... my dear mother-in-law died suddenly, from what we believe were complications related to her (newly diagnosed) sleep apnea. And even more horrible - my husband found her body.

Suffice it to say, 2014 was the worst - and most enlightening - year of my life. Our lives sort of... imploded that year. We stumbled from one struggle to the next with little time to breathe, more less recover. For about eight months, things were... just a mess. But we survived. We endured. And now that the dust has settled, here we are. Whole, intact, and coping.

We are okay.

My mother-in-law is missed everyday, and all of the other issues have resolved themselves wonderfully, I'm grateful to say. But that's life, isn't it? How many cliches have you found yourself living through? "When it rains, it pours." "Well, that's Murphy's Law." "We're being kicked while we're down." It happens.

For those of you who reached out during my absence, thank you dearly. I hope that all of you are well and coping as best you can with the endless struggle of narcolepsy and cataplexy.

It's wonderful to be back. I have so much to tell you.

Monday, January 20

Treating Narcolepsy With Supplements

When my husband left his job, he also left his health insurance behind. Because our family's health care coverage was provided through my husband's employer, we joined the ranks of millions of American families who have a chronically ill family member and no health insurance. Without the health insurance providing prescription drug coverage, we were suddenly faced with a scary prospect - not being able to afford his medications.

Not too long ago, we asked for help paying for my hubby's Nuvigil, but were told that we didn't qualify for help. Yes, we were "poor" enough to qualify, but no, we couldn't have help while we had any type of insurance. Even if said insurance didn't cover the cost of the medication we needed. We were the typical family that falls between the not-enough-income, too-much-health-insurance cracks of the US health care system.

At least without any insurance, we now qualified to receive free medication from the company who manufactured it. Qualifying for the help and receiving the medication would take time, of course. In the interim, my husband's Nuvigil was quickly running out. He skipped taking it on days that he didn't have job interviews, but even so, we knew there would be at least a few weeks, maybe even months without medication for him to rely on.

What were we to do?

After doing extensive research, we decided to try several supplements. It took some juggling, but we eventually came up with a vitamin regimen that seemed to help. It didn't work as well as Nuvigil, but it helped, which is all we had hoped for. I will go into more detail (brand names, cost comparison, etc.) in
From wisegeek.com
another post, but this is basically what we tried:

  • a daily men's multivitamin
  • Calcium
  • Magnesium
  • Vitamin B-12
  • Vitamin A
  • Vitamin D
  • Inositol & Choline
  • 6 mile daily walk (broken up into two 3-mile walks)

The results? My husband said (and I quote), "This is the best I've ever felt without medication." He emphasized that consistent exercise and the supplements truly made all the difference. We now have a goal of getting him off of the medication altogether and back on the daily supplements/exercise to treat his narcolepsy.

Sunday, January 12

When Your Marriage Disappoints You

It's bound to happen.
Not because you're a bad spouse or a terrible person.
Not even because you've fallen out of love.
After all, if you didn't love them, the bad days wouldn't hurt so much.
It will happen because no one wants their spouse to be sick. Yet, that's what our spouses are.
They are ill - chronically so - and that makes being married to them a little trickier sometimes. It requires a bit more patience, kindness, humor, and of course, love.
But sometimes, just sometimes, it's really disappointing to be married to someone who is chronically ill.
Take a breath because, it's okay to feel that way.
Say it aloud right now. Say it with me: "Sometimes I feel disappointed in my marriage, and that's okay."
It really is.
Maybe you didn't handle a situation in a positive way. Maybe you slipped up and blamed your spouse, rather than narcolepsy. Maybe you found yourself envying someone else's physically healthy marriage. Maybe you resented taking care of the kids, paying the bills, washing the dishes, or spending another night alone. Maybe you're just tired of having a spouse who's always tired. Maybe it's everything. Maybe it's nothing you can define.
The point is, it happens. Cry, pray, cry and pray, read this blog post and weep, whatever... and then let it go. The danger is not in feeling disappointed. Everyone feels disappointed in their relationship at some point, ill spouse or not. The danger looms when you dwell on the disappointment. Don't let yourself do that - ever. Fight the urge to focus on the negative! No matter what sort of day you're having, your marriage isn't all bad. Having a spouse with narcolepsy is not the worst thing that can happen to your family. Not by a long shot. So get it out, let it go, and move on.
Get it out.
Let it go.
Move on.
Journal, go for a walk, clean the bathtub, or put on some Ellie Goulding and dance your pain away. Whatever you do, let that disappointment go and get back to focusing on the positive.
If you want to save your marriage, that is.

Monday, January 6

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.

Monday, December 30

How to Keep the Passion Alive In a Relationship With a Narcoleptic

Did you notice that the title of this post begins with How not Should I? This post is for those who want to make sure their marriage stays passionate. If you just ain't feelin' the passion anymore, or just don't care anymore, no worries. I discuss how Narcolepsy drains passion in another post. For now, let's focus on the positive and talk about ways to keep the passion alive!
Take the Lead. The truth of the matter is, quite simply, you're going to have to do most of the work. Let's be realistic. It's hard to feel or act romantic when you're tired. And our Narcoleptic spouses are often tired - extremely tired. That usually means that any initiation of romance is going to be left up to us. Of course, it can get a little old, always being the one to initiate the romance. But remember your focus is on keeping the passion alive - no matter who has to work harder to do so.

Keep It Simple. I used to exhaust myself with elaborate date nights or unique romantic ideas. While the drawn out plans are great, things don't always have to be complicated to be effective. Write a love note rather than a letter, send a text rather than make a long phone call, cuddle before a movie at home rather than hitting the crowded theatre. My hubby and I spend most of our date nights at home, and that's okay. I'm just happy to spend quality time together while he's awake.

Have a Backup Plan. Yes, it will probably happen if it hasn't already. Your Narcoleptic love may fall asleep during a date or other romantic time. It's happened to us repeatedly and although I don't get upset, rarely am I able to just laugh it off. The good news is, when you know that it's a possibility, you can be prepared. If your significant other tends to sleep for a long time, prepare to try again on a different night. If they'll wake after a brief nap, resume where you left off.

Spontaneity Is Okay. You don't always have to plan romance. Can you take advantage of a quiet moment? An unexpectedness tenderness or sharing a sudden laugh can be a great starting point for a quick touch or kiss. Never forget how much power an intense look or warm hug can have, too. Are the kids out of the house suddenly? Did you score a great freebie that you didn't plan on? Take advantage of the unexpected whenever you can. Chores and other duties will always be there, so sometimes, they can wait.

Be Flexible. Can you hang out with your spouse in the morning rather than at night? Reverse that if they're more alert in the evenings. Can you do something outdoors if they have a hard time staying alert during a film? Can you watch a film if they have a hard time being active? Try spending small chunks of time together rather than hours on end. Sometimes my hubby and I will spend an hour playing a board game and listening to music. Nothing exciting, but it works for us.

Do Something Everyday. Look into their eyes when you say, "I love you." Hold hands when you walk together. Kiss them good morning AND good night. Laugh at their jokes and compliment their efforts. When they reach out for you, reach back. Fight for the romance in your marriage every single day. It's simple logic: if you act more romantic, you'll feel more romantic. And then that first suggestion won't be so hard after awhile.

Be Patient With Your Spouse... and Yourself. Narcolepsy is incredibly frustrating. And unpredictable. And inconvenient. And did I mention frustrating? Your spouse chose you. Don't you think  that they want to spend quality time with you? Remind yourself of that - often. You are worthy of love, and romance, and passion, and so is your spouse. Every marriage should be based on mutual love and attraction, so work hard to make sure that Narcolepsy doesn't rob you of yours.

Friday, December 27

We're Still Here

About three and a half years ago, I was desperate. I had been existing with my husband's recently diagnosed illness, but just barely. We certainly weren't surviving, much less thriving. Actually, we were barely making it.

So I hopped online to find... something. And I did. I found lots of information that was quite beneficial and informative. Lots of clinical information, various research analyses, and even personal experiences. But the personal experiences were what appealed to me the most. Specifically, I longed for stories of other people who had spouses with Narcolepsy and Cataplexy. I wanted real life input on coping day to day.

I couldn't seem to find anything, so I decided to vent instead. That was my motivation. I wanted a place to spill my I'm-sick-of-Narcolepsy guts. When I wrote my first post, it was such a relief to say what I was feeling about Narcolepsy! In fact, this blog was private initially. But I wondered if there was anyone - just one - person who would take comfort in knowing that they weren't alone. So I made it a public blog instead. I was amazed - and touched - by the response. People from all over the world told me that they could relate. Emails and blog comments poured in faster than I could reply to them. I was truly grateful for the outpouring of support.

And then I stopped writing.

A little more than a year ago, my husband quit his job. As if that weren't stressful enough, I became very ill and extremely fatigued (turned out it was anemia). This blog was pushed to the back burner until my health improved. By the time I felt better, though, I wondered if anyone was even reading this blog anymore. Again, I was amazed to see all of the messages and comments you've left me! As I was reading some of them aloud to my husband, I choked up. There are so many of us who just don't know what to do. We have to encourage one another, laugh with one another, give virtual hugs and good advice...

My husband and I are still here, plugging away at staying happily married despite the trials of a disease that just doesn't go away. Thank you for motivating me to keep blogging.

From Wikia.





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.