Narcolepsy and the Quad

A couple strengthening each other's weaknesses through God's love and life's lessons.

It’s not over yet. Let me slap you in the face some more.

Thank God, He finally gave me an answer. I finally find out I’m not insane. I’m still a little crazy, but at least I haven’t made all this sickness up in my head. My husband and I had been praying something fierce to finally get a diagnosis and now I have one. Who knew all it took was a simple sleep study to diagnose narcolepsy? Well, it actually wasn’t simple. That sleep study was one of the hardest tests I’ve ever had to take. Serious. They made me sleep overnight, wake me up at 6 AM, make me stay up an hour and a half, take a 20 minute nap, then up for an hour and a half, then another 20 minute nap, and so on for 5 total naps. Do you realize how hard, how DANG exhausting it is to stay awake? In order to be diagnosed with narcolepsy, the average sleep onset must be under 10 minutes and also have REM sleep present in at least two of the five naps. REM sleep was present in three of my naps and my average sleep onset is THREE minutes. So I am good to go right? Got a diagnosis, right? Wrong. It’s not over yet. Let me slap you in the face some more.

I tried provigil, a wakefulness promoting medication. I get sleepy. Go to a neurologist. Get put on nuvigil, which is basically the same as provigil. I remind him I work fulltime and am in graduate school fulltime AND a newlywed. Okay, we’ll put you on the LOWEST dose available of the SAME type of drug that had an ADVERSE effect and made you SLEEPIER and I’ll see you back in a month. Obviously this doctor was WAY too fantastic for me. I know it is hard to pick up on through writing, but that last statement was sarcasm. So, once again, I am visiting a different doctor.

All I wanted to do was take care of my husband. I understood what being married to a quad would entail and I was fully prepared, willing, and excited to take care of Devyn. He deserved that. He deserves the world. But my exhaustion was hindering all my plans. Don’t get me wrong, Devyn is extremely independent and can very easily do without me. I was just hoping to make life easier for him. TOTALLY didn’t happen. In fact, I feel like I’ve only made life 10,000 times harder. Why can’t he just have a beautiful, AWAKE wife? I mean, I got the beautiful part down pat. At this point, I don’t cook for him, I don’t clean, I don’t spend time with the kids, what good am I?

Some of you may think I am horrible for even complaining about ANYTHING considering who I am married to. This was part of the reason I did not share my diagnosis with my church family. Devyn had just given his testimony at church when I was diagnosed with narcolepsy and I didn’t want anyone to look down on me; though I know my church family really wouldn’t have. I soon began struggling with severe depression. And then I started thinking how nice it would be to just never wake up again. My exhaustion was painful, mentally and physically.

I find a fantastic doctor in October to help with my depression and narcolepsy. This time that statement was NOT sarcasm. He was and IS a blessing and really truly understood what I was dealing with. We began a long process of finding just the right medication. Unfortunately, by October, I ended up having to withdraw from my very first semester of the family nurse practitioner program. I was able to keep up with everything until one weekend, I had slept all day and got up at 10 PM. I took my prescribed 10mg Adderall. It did nothing. So I took a second. It did nothing. I take a five hour energy. It did nothing. I’m finally so desperate I grab a leftover nuvigil hoping it may suddenly work. It did nothing. I’m still a tired, exhausted mess slumped over my keyboard. I sat there for hours putting more effort into trying to stay awake than focusing on my paper. At the end of my failed attempt, I had one page written. I was so disappointed in myself. I again became angry. Slapped in the face once again…

To be continued. Life gets better. Promise.

-Hannah “The Narcoleptic”

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Categories: Narcolepsy

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4 replies

  1. Great web blog. Very well said and very well put! Kudos.
    We all fight battles noone knows about, don’t we?. .and saying it how it is, truths, breaking silence. . Keep up the good work in the writing and in your work. It takes guts. Strength. Hope. Faith. Bravery.
    My hat off to you. I will keep reading.

  2. I believe I have narcolepsy also. Never been diagnosed with it, but also have been on provigil. My insurance won’t pay for it any longer because I don’t have a diagnosis of narcolepsy. What’s the best way to go about being diagnosed?

    • Talk with your Healthcare provider and ask them to order a sleep study. Make sure they order an overnight study and the multiple sleep latency test. The MSLT will determine if you have narcolepsy and the overnight study will rule out any other causes of fatigue such as insomnia or sleep apnea.

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