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.

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.

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.

Narcoleptic Insomnia

Most narcoleptics don't sleep well.

Ironic, isn't it?

A common misconception of the disease is that a narcoleptic must get tons of sleep - in fact, too much sleep. Almost like a "too much of a good thing" syndrome.

Wrong.

Narcolepsy isn't about getting too much sleep, it's about being sleepy at the wrong time - among other things. At times, my husband can't sleep. It's really like a form of insomnia sometimes.

It took me years to get that. Did I say years? I meant YEARS. As in, recently I finally said, OH! Okay, I get it.

My husband gets up around 3am almost every morning. Regardless of what time he goes to bed, he wakes in the wee hours of the morning, stumbles around half conscious, and eventually crashes again. He tosses and turns, talks and moans, and finally wakes, nearly just as groggy as when he dropped off the night before.

Narcolepsy is sad that way. Just imagine, you're always sleepy, but when you can sleep, it's lousy. How messed up is that? We're in the process of finding medication that will help him to sleep, but in the interim, he suffers sometimes. We find that it helps to have:

• A quiet, cool, dark bedroom
• An alarm clock set well in advance
• Permission for him to fall asleep whenever he can (meaning I don't get mad if he falls asleep unexpectedly)

With things already in place, whenever he falls asleep, it's okay. Of course, this only works when he actually falls asleep in his bed. Many times he dozes where he is - a chair, the couch, the kitchen table... I hate waking him. After all, he needs whatever sleep he can get, no matter where it is.

Narcolepsy and The Medication Nightmare

I think we've established that there's no cure for narcolepsy. 

There are however, several medications that are used to treat narcolepsy and it's friends. My husband has only tried a few so far, but the differences between them are astounding... and  a little scary.

Upon his initial diagnosis approximately 2 years ago, he started on Provigil. This was a drug that we'd never heard of, but then again, we didn't know a whole lot about narcolepsy either. I liked my husband on Provigil. He seemed like himself. That may sound silly, but it's the most accurate way I can put it. You see, narcolepsy often turns him into a different version of himself. He's muted and distant, like a faded photograph that you have to hold at an angle to see. It's like he's not all there - and in reality, he isn't. But with Provigil... wow, what a difference! Suddenly the photograph is in color, sharp and clear - it was great! For me, anyway. For my husband, it was just OK. The side effects included headaches and stomachaches which were quite bothersome, but went away over time. We thought we'd found a viable solution.

Then our health insurance got in the way. 

With insurance, the amount of Provigil my husband was prescribed amounted to about $400 per month. The cost was way beyond our modest budget. Just in case you didn't catch it before - that was with insurance. Suddenly, Provigil wasn't the answer anymore.

Next up, Aderrall.

Initially, it didn't seem  so bad. It kept him awake and alert and we didn't notice any side effects right away... It definitely wasn't like Provigil, but at least he was awake, right? That was when I learned that there's a lot more to treating narcolepsy than keeping a person awake. I've already gone into detail about how much I hate Aderrall, but I can never say it enough. At least it was cheap, I guess. With our insurance, it comes to about $12 a month.

Most recently, my husband was prescribed Nuvigil. He said that he felt the difference right away. Although I'll go into more detail in a different post, suffice it to say I loved him on it... but it didn't last long.The drug, I mean. The amount that he was prescribed was a free trial, and after that, we were on our own. Unfortunately, insurance doesn't cover it - at all. Fortunately, we're not the only ones who can't afford it. Drug manufacturers of Nuvigil have created a prescription assistance program that will help cover the costs of the medicine. We're in the process of applying for that.


It is a nightmare, finding the right medication to treat a chronic illness. With narcolepsy, one has to be so careful. A drug that may keep you awake might also trigger attacks of cataplexy. A drug that helps with cataplexy may make the night binges worse. It's such a delicate balance...

...but so worth it.

I Hate Adderall... and It Hates Me

So last night I finally told my husband how much I hate his medication.

Adderall.

If you could hear the loathing in my voice when I spit out that word...

My husband has narcolepsy. That means he is often sleepy, tired, or mentally drained. The solution to that would simply be to wake him up, right?

Wrong.

The solution actually does not currently exist as narcolepsy is incurable (for now). But there are several treatment options available, including a variety of medications that can help alleviate or lessen symptoms. Unfortunately, I don't believe Adderall to be one of those for him. Although it does keep my husband awake sometimes, the side effects are so extreme that the moments when he is lucid aren't even worth it.

Here are some of the benefits of Adderall:

• Improved concentration
• Mental alertness
• Appetite suppression (some may consider that a benefit)

That's the effect I can see it has on my husband. Here are the side effects:

• Irritability
• Inability to sleep
• Teeth grinding
• Loss of appetite
• Agitation
• Mood swings
• Depressed moods
• General anxiety
• Increased desire for nicotine (in ex-smokers)

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

See the difference? I'd rather have my un-medicated, sleepy husband who is at least normal to a certain extent than the alert but antsy, unpredictable guy Adderall makes him. Last night when I told him exactly what I thought of his medication, I felt like I was confessing to hating one of his close friends or something. His reaction was similar. He sighed, admitting that he knew it wasn't the best for him, and he was already considering letting it go. Like telling the friend who isn't good association, "Sorry, man. We can't hang out anymore."

So now as he weans himself off of this drug, we're going t figure out what to do next. Until then, good riddance.

The Narcoleptic Parent - Dangerously In Love

Image courtesy of arztsamui/FreeDigitalPhotos.net

Can someone with Narcolepsy really be a good parent?

My husband and I have one child. We adore her, dote on her, and watch the sun rise and set on her. She is a precious, genius child - and I say this with absolutely no bias at all of course. She is 3 years old. Because we have planned for just one child, ours is a very relaxed family in which she is the centerpiece. She's like the playing card that makes that cool sound as the bike's spokes turn 'round.

Notice that I said that we adore her.

I know that my husband loves our daughter. I'm also proud to say that he's a very good dad. He's never hesitant to get down on her level to play with her, read with her, or make up silly songs. I like seeing them together. As any mom would understand, it does my heart good. When Narcolepsy takes over, he struggles to treat her with love and kindness, even when he's tired or irritable. Sometimes he fails at this, but then again, sometimes I do too.

But I've never left medication within her reach.

This is a recurring problem for us that started about a year ago. When my husband was taking Provigil, this never happened. It was when he was switched to Adderall that the issues began. One evening, I was washing dishes when my then 2-year-old walked into the room chewing something. Immediately, I opened her mouth and wiped out tiny pieces of something orange and chalky. The color looked familiar, but I just couldn't place it. I investigated - checking each room, looking under furniture, going through her toy box... nothing looked even close to what had been in her mouth. I saved the fragments in a napkin and considered calling Poison Control. Because she was acting completely normal, instead I called my mother. Hours later, my daughter was still acting normal - except... she seemed a little hyper, she refused to eat or nap all night, and then she started to move her mouth in a weird way. It was barely noticeable, but eventually I realized that she was grinding her teeth! Then I knew. She had eaten one of my husband's Adderall pills.

That night was terrifying, but it could have been so much worse. Because I had wiped most of the pill out of her mouth, it was determined that a hospital visit wasn't necessary unless she started exhibiting certain symptoms that would indicate she was having an adverse or allergic reaction. I was instructed not to leave her unattended, and when she did fall asleep, to watch her breathing for several hours. Suffice it to say it was a long night. My daughter wasn't able to fall asleep until the next day. By then, my whole family was exhausted but relieved. She was OK.

Although I was initially furious with my husband, I got over it. It was an accident. He dropped a pill on the floor and didn't notice. Our daughter was fine, he would be more careful, life would go on. I let it go.

Until it happened again.

This time I found several pills on the floor of the car and got to them before our daughter did. The next time they were in-between the cushions of the couch. The next time the bottle was on the living room table. The next time I found a pill on the floor of the bathroom. Most recently, the bottle was on the sofa in the living room. Because no pill bottle is truly, absolutely child-proof, I consider leaving a bottle of prescription medicine within her reach just as dangerous as leaving a single pill.

We've had several discussions about my husband's carelessness. I know that he doesn't mean to put our daughter in danger, but that isn't the point. He resists any suggestions I make to keep his medication in one particular place because he prefers to keep it on his person. This also means that he sometimes leaves his medicine at other places and then doesn't have it when he needs it. Narcolepsy makes my husband incredibly forgetful. Believe me, if you aren't familiar with narcolepsy, you can't imagine. He literally forgets things all the time. It drives him nuts. Lists and nagging don't help - so his frustration with his memory is hard to watch. That's why he prefers to keep his medicine with him at all times. Otherwise, he might forget to take it. I'm sure there's a solution that will work for our family - we have yet to find it but I know it's out there.

As for my question - can a Narcoleptic really be a good parent? I think the tone of that question is a little inflammatory. Would I ask, can someone with cancer be a good parent? Can someone suffering from depression be a good parent? Can someone with any kind of chronic illness be a good parent? How about, Can someone out-of-shape, undereducated, poor, or ______________(Fill-in-the-blank) be a good parent? To me the answer is obvious. My husband knows that he can do better keeping our daughter safe. And he's willing to try. So no, maybe not everyone with a chronic illness is a good parent. Maybe they simply can't be because their illness is too debilitating. For others, maybe they do the best they can and are willing to try. To me, that's a good parent no matter what sort of health they're in - that willingness to try.