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
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.