Parkinson's Fatigue & Narcolepsy

For as long as I can remember, I've been prone to long sleeps. As a kid, I could hit the 10-12 hour point easily. In my early thirties, Friday night meant napping before waking up to confront an uneventful evening. As an older adult, I can sleep and sleep and sleep, but it's punctuated with bouts of nocturia, also known as, excessive nighttime urination.

During my time of understanding the Parkinson's inflicting me, I've gone through sleep apnea testing, and I've battled with REM sleep behavior again and again. Hence, I have my own bedroom. However, after my most recent tests, I discovered my fatigue was something else altogether: Narcolepsy.

Undergoing a nap study

A nap study is essentially a chance to have 5 different nap opportunities. This comes immediately after having a proper sleep study. I was wired for sound and down for the count at 10:00 pm. I slept well - 2 wake-ups in the middle of the night and 1 at 6:30 am, when they would have had to wake me up anyway.

At 8:00 am, an hour and a half later, the first nap opportunity came. My job was to fall asleep as quickly as I could. No problem. Hold my iced cold water! Lights out!

The second nap test at 10:00 am... it took a little longer, but I was out enough to not be up. The third test was at noon. Ba-boom. Out for the count. The fourth test was at 2:00 pm after lunch...of course, I got this.

The fifth and final test at 4:00 pm was a bust. I didn't want to have to wake up from a nap. It takes me a long time to get moving and coherent. Instead, I just laid there in contemplation of life's wonders.

The study results

Gone are the days of 18-year-old Airman Glass. Jumping to his feet and reporting as ordered when he is summoned for corrective remediation in Air Force Basic Training at 6:00 am.

When I went for results, I ended up explaining that I intentionally tried to stay awake during nap 5. The doctor understood, but what he found in the times I did sleep was more important: I could hit a dream state fast (within 15 of being out).

I now have narcolepsy, which is another "free toaster" for playing the game that is Parkinson's. Have I mentioned how much I hate Parkinson's?

The impact of fatigue

When I hit the bed to go down to sleep, my fatigue is in overdrive. If you want to understand fatigue, imagine Atlas trying to hold up the world, but not having done any strength training and conditioning for the entire quarantine period. There are times when I wake up that my legs feel like I walked 22 miles the day before. However, I just sat on the couch reading.

I'll say I'm going to do X, Y, and Z. But when the time comes I feel like ice because of my fatigue. I can't motivate myself to go to the upstairs computer or do much of anything other than read.

It's not as fun as a John and Yoko bed-in for peace when I'm lying around, tackled by Parkinson's, I'll say that. At least there's a name for it now - excessive daytime sleepiness - or simply "more than tired," as the commercial says. This is the narcolepsy symptom that Dr. K went looking for when he ordered my nap study last month. The definition is the name.

Dealing with nigthmares

It's no great secret to say I have problems with sleep, but you may not know I sleep with a night light. After coming out of a nightmare to scream at a ghost, it just seems better than waking up in a dark room to go to the bathroom. Besides, that's the witching hour and my bedroom can get really dark. Somehow, with Parkinson's, this makes the possibility of some non-human entity things "too real."

Side note - if you've never screamed in your sleep before, it's a neat little trick. Imagine being underwater at the pool and trying to yell. That's what my voice sounded like as I moved between being asleep and awake to scream at the spectral shadow standing over me.

I haven't hit or kicked in a while, but I do regularly push buttons gently in my sleep. Falling asleep on an airplane, I once woke to find I was touching a passerby's leg. It would be hard enough to explain that, but imagine a full-fledged kick or balled-fist punch. How do I explain that? This is another reason to get the daytime sleepiness fixed.

My treatment plan

Currently, I'm on Modafinil. Dr. K and I tested the medicine Solriamfetol (Sunosi) to see dosage and reaction. I also signed a controlled substance agreement. This left me waiting on a prior authorization approval from my insurance company, which can take some time.

Fortunately, with my test results included, the approval went quicker than a request containing just a subjective account of sleeping issues. I'd still be waiting on that, and insurance companies don't move faster with doctors' offices calling in, so yeah.

Thankfully, with the blister pack "try me" assistance, I wasn't completely out in left field. After using up my samples, I finally got my meds. Other than a "full belly" feel, I've been more alert mentally. Also, I'm here typing today. After all the blah of narcolepsy, Parkinson's, and fatigue, they aren't fighting me on that... yet (I hope). Some good news from the front.

Talk to your doctor about sleep

If I'm not going to get a solid night's sleep, I'd at least prefer not to worry about reacting to a hallucination or an earthquake while narcolepsy pushes in and leaves me sleeping in a room full of people. As the people watch, they know the stuff in my head is "real", but they never see the "real".

Additionally, I don't want to be too tired to drive. That's just bad. I'd also like to have an outside chance of getting time to exercise so I can do the Great Gallery someday, when Covid ends.

Put simply, anything that is moving and enjoying is better than the routine of: Sleep > eat > bathroom > sleep > TV > read > bathroom > sleep > eat > sleep (repeat after mixing it up and shaking it).

Parkinson's sleep problems are real. If you're reading this, you may already know that, or hopefully, you now feel yours isn't an isolated case. A lot of people get inquisitive and want to know what to do about fatigue, REM Sleep Behavior, different beds, Sleep Apnea (etc.). I can't tell you what to do. There are plusses and minuses for everything. The same goes for medications and sleepiness side effects.

That said, a pretty good rule of thumb is that if you're asking a chat room or a person with Parkinson's, you should ask a doctor. Talk to those in the game with you in day to day reality. Your decision is about more than just you. None of this stuff is fun, but nobody ever solved a problem by ignoring it.

Pleasant dreams, wherever you are.