Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, June 08, 2011

What is Narcolepsy?

I guess I didn't snore as much as I do at home, because they never came in to make me put on the c-pap mask. I know I was awake a lot because I woke up every time I rolled over. Normally at home I close my eyes for the night, then the next thing I know it's morning and I'm still exhausted! Very symptomatic of two things: Sleep apnea and Narcolepsy.

Now for the naps! Because I have known narcolepsy, diagnosed during a similar test 12 years ago, I have to do a nap test. This is a series of five scheduled naps, taken every two hours, each one lasting half an hour.

Narcolepsy is a problem with the brains ability to regulate sleep cycles. It's common for people with Narcolepsy to skip sleep cycles, and also to have symptoms of Cataplexy and Sleep Paralysis. I've never had Cataplexy, but sleep paralysis is something that I had for years. (it's been several years since I've had  sleep paralysis.) Sleep Paralysis is VERY scary, and would cause me to be afraid to go back to sleep because you feel like you can't breath.

So my overnight study is done, and now it's time for the nap test.

The purpose of the nap test is to check your level of daytime sleepiness. So you wake up for the morning (I fell asleep around 10:30 last night and didn't wake up until 10:00 this morning!) and fill out a questionnaire about how you slept the night before (which they use to compare with the actual information gathered by all the wires and monitors you're hooked up to.) Then two hours later you take your first nap of the day. Most people, those not having sleep disorders like apnea or narcolepsy, will not sleep during this nap. *Some* might reach stage 1 or 2 of sleep, and it will probably take them 20 or so minutes to get there. Sorry though...the nap is only 30 minutes long. LOL You will take five of these naps, spaced two hours apart over the course of the day.

Then there is me. During my last sleep study 12 years ago, not only did I fall asleep within two minutes for EVERY nap, but I skipped stages 2-4 going from stage 1 (which is light sleep) to stage 5 (deep sleep) and stayed there until I was woken up 30 minutes later.  I did that for ALL FIVE naps, and then was also dozing off between naps.

I don't think my narcolepsy is as bad now as it was 12 years ago. I did sleep a little during this first nap, but it's different sleep. I have a dream state when I'm not yet in stage 4 or 5 where dreaming normally occurs. It is very strange, unless you have narcolepsy. ;-)

So I feel like I just woke up and am groggy, but I see that according to the clock, it will be nap time again in 40 minutes. Thats the thing with Narcolepsy. If you are sitting around with nothing to do, you get groggy. Getting up and being active helps, but the narcolepsy makes you have very low energy levels too. People with narcolepsy often do thing like "eat out of boredom" when what they're really doing is trying to stay awake. Needless to say, weight gain is a problem. People with Narcolepsy are often looked up as being lazy, or having no ambition. That's because sometimes it's all we can do to stay awake, much less get anything done. We can get our days and nights turned around VERY easily, and many people with Narcolepsy find they do better with overnight jobs than daytime jobs.

When I was first diagnosed 12 years ago, I was given Ritalin to help me stay awake. I hated the Ritalin, as it gave me HORRID headaches. (but very different from my migraines, which are also awful.) My doctor told me to stick with it just a little bit, because a new drug was coming out called Provigil. It was incredibly expensive when it came out and it took about a year on the market before my insurance would cover it.

The first time I took Provigil, it was like someone gave me speed. After three days I had gotten more done around the house than I had in 3 months. I'd also lost five lbs! What I was feeling is what you normal people feel. I was awake. At age 30, for the first time since I was around 15 years old, I knew what it felt like to be awake.

I took Provigil off and on for a few years. As my jobs changed so did my health insurance and sometimes it wasn't covered. Then I was without insurance for awhile, and my doctor said in order to continue getting my Provigil refilled I had to have a new sleep study done. That was about 4 years ago and I haven't had Provigil since.

And I'm sleepy. I'm sleepy driving, and any drive longer than 15 minutes poses a problem for me. Sitting in a waiting room is HORRIBLE, because I really struggle to stay awake. If I'm in a sleepy phase and I suddenly have to talk to someone on the phone or in person, they might notice my speech is slurred.

Last night when I was getting wired up, the tech was asking if I take any meds for my narcolepsy (you have to be off all sleep meds for the test) When I said I hadn't taken any in four or five years she told me that there are two new meds out that are even better than Provigil was, because they actually replace the chemical in the brain that is deficient. It sounds heavenly.

Being awake sounds  heavenly. Maybe I'd feel like exercising again.

But what about the sleep apnea? Unfortunately, I don't think this sleep study did what Dean hoped it would do, which is get me on a machine to stop my very loud and annoying snoring. Sorry Dean. :-(  My goal in getting this study done was just plain find out why I'm so flipping tired all the time. Yes, I have narcolepsy, but it had seemed a little better the past year or so, making me thing this problem was actually apnea related.

The tech informed me last night that narcolepsy does that. Seems "better" for a year or so, then gets suddenly worse.


I just want to be awake. I'll meet with the doctor tomorrow to find out what I can do to make that happen.

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