Sleep Studies Suck

When I started this blog, I think the idea was just for me to start a new hobby: writing. I just felt like writing.  But, other than catharsis, I wasn’t really sure what the point of the writing would be.  I thought about what sorts of things I know a lot about or have a strong interest in, and I’m sort of all over the place, but I knew my blog was supposed to have some sort of cohesive theme. So, I picked a topic that dominates most of my life:

Morning Grouchiness.

Which is really All-Day Grouchiness, at least in intermittent episodes, but that doesn’t exactly have the same ring to it. So, A Morning Grouch was born – the expert in waking up feeling like shit every day. Being tired every day.  Being kinda grouchy because I’m feeling tired every day. Tired. Tired. Tired. Bitchy. Tired.  I’ve been feeling this way for about 20 years.

I wrote several posts about some of the issues, like my vivid dreams, my restless legs, and my paradoxical reaction to some sleep medications, but after I became pregnant with my first child the blog has largely veered from the original topic, and I’ve just written whatever comes to mind, without holding myself to expectations about the number of posts I publish, or the relevancy of topics I write about.  I refuse to allow this hobby of mine to become work.  I’m not tied to the blog in any way other than it just feels good to write sometimes, and to connect with some other people out there who get me.

But because of the blog, I’ve found myself exploring my sleep issues more and more and I have finally decided that it is not okay that I am feeling this way, and that I am going to do something about it.  After talking with my osteopath about some of my sleep issues he thought I was a for sure candidate for a sleep study. We both thought I probably had sleep apnea, to him my symptoms sounded like a no-brainer.

A lot of people have asked me what my symptoms are since they tell me they had no clue I had sleep issues (especially my grandma, who once she found out I went through a sleep study has been incessanty asking, “How have you been sleeping?” even though I’ve been sleeping the same way I have for the past two decades. Shitty, Grandma. Every night my sleep is shitty).

My sleep issue is such a big part of who I am, and it affects me significantly on a daily basis, yet I guess if you don’t talk about things enough, or in the right way, no one has a clue what’s going on inside of you.  I’m guessing they just thought I was a bitchy asshole for no reason.  But, see? I have a reason.  Maybe I’d be a nice person if I wasn’t so tired all of the time.

Here is a gist of my sleep crapola:

1.  I never wake up rested in the morning.  More often than not, I literally feel more tired in the morning than I did when I went to bed.

2.  I have crazy, vivid, indescribable dreams.  Every night. Every nap.  I dream before I’m asleep, and sometimes after I just wake up.  I’ve put a few of my most normal-sounding and describable ones here on the blog, but most are so bizarre that I can’t really explain them.  A lot of them are violent and a bit disturbing. The crazier and more vivid the dreams are, the more tired I am when I wake up.  I hate dreaming.

3.  I get super exhausted, almost every day.  Excessive daytime sleepiness. It’s a thing.  It sucks.  There are many times when it takes literally all my energy to keep my eyes open.  ALL OF IT.  No energy left to be very productive, no energy left to be nice.  I have to force myself to move, being idle and trying to stay awake is a horror.  I’m dizzy, I’m weak, I can’t focus. I have a horrible memory. Yea, I know. Everyone’s tired.

4.  I can fall asleep any time.  Any where.  I’m a huge fan of the power nap.  It’s not unusual for me to try to arrive a bit early to appoinments, so I can sleep for 10 minutes in the parking lot. I have never fallen asleep somewhere where I really knew it would be unacceptable, such as a work meeting.  Even though forcing myself to stay awake is often torturous, I can do it. But, given the opportunity, I can fall asleep at the drop of a hat. Falling asleep has never been my issue.

5.  I can not find a pattern, or a cause, related to my level of sleepiness and fatigue.  I’ve tried sleeping for different number of hours per night, I’ve tried no caffeine and even (gasp!) no alcohol.  I’ve tried diet changes and exercise and have seen zero differences (exception: running over 20 miles per week really helps with my restless legs. It also gives me a jolt of energy, perks me up and helps my mood).  Some nights I sleep through without waking up, sometimes I wake up every few hours and have significant insomnia .  Nothing. Matters.

6.  Once I had babies I realized it literally didn’t matter what time I get up, or how many times I get up in the middle of the night, or how long I’m awake – I’m always the same amount of tired. This was somewhat liberating, actually, since people often complain about how tired they are after having kids, but for me, it’s been almost exactly the same as it’s always been, except now I sometimes get up in the middle of the night to soothe a child, or to put away dishes, read, write a blog post, or work on my kid’s baby books.  I occasionally get up at 3.45am to go for a 4.00 jog, though even that seems crazy, even to me, when I do it, it works and I feel no difference to the rest of my day. Same amount of tired.

The biggest difference now that I have kids I feel like I should probably be a functional adult, where before I could sort of be a hot mess and it didn’t matter a whole lot.  It is very hard for me to sneak in my power naps when I’m at home and the days of being able to lounge all day louge binge-watching Netflix are soooo long gone.  If I really need a nap and I can’t get one I am RIDICULOUSLY tired and OUTRAGEOUSLY bitchy. One small thing can suddently set me off or can cause me to feel completely overwhelmed.  My husband knows this all too well.  This has been a large factor in prompting me to try to fix the problem.

My first sleep study was a typical polysomnograph.  They put me in a fake-ish looking hotel room where they spied on me with a camera all night long and were able to talk with me through a two-way speaker system. If I had to pee in the middle of the night all I had to do is say, “Jody, I have to pee” and Jody would come over straight away to unhook me so I could carry the cords with me to the (unvideotaped) potty.  They hooked me up to a million electrodes, including some on the chest and legs, and offered me the t.v. remote if you need to watch a bit before falling to sleep.

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See the little camera they spy on you from on the ceiling? (top left)

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Lovely picture. And bathroom with no camera (hopefully)

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The weirdest thing about THIS is that this the room you meet with the nurses in, even during just an office visit. Sleep study.

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Holy hell. Yes, this is what I looked like all hooked up, ready to go to sleep for the night. The wires are surprisingly light and not nearly as cumbersome as they look. The nose thingey measures air you exhale OUT.

After my sleep study, I felt like I slept like I normally did and was fully expecting a sleep apnea diagnosis within the next 7 to 10 business days. When I got a phone call at work telling me that I did not, in fact, have sleep apnea, I almost burst into tears. I might have frightened my coworker with my emotions.

My husband acted confused, “You’re upset because you don’t have sleep apnea?”

“Yes!”

Sleep apnea you can fix. Fairly easily, with a CPAP machine.  Now, I felt hopeless.

The tech who gave me the test results over the phone told me that the doctor would like to meet to discuss some of the other symptoms I had expressed in the sleep questionnaire. Things like the excessive daytime sleepiness and also one symptom I had no idea was at all a real thing, or that had anything to do with sleeping difficulties, until I checked “yes” to it on the questionnaire.

7. Cataplexy (maybe. Or not).  Which I now know means episodes of sudden, involuntary, muscle weakness, typically triggered by strong emotions. Cataplexy can vary greatly, from hardly perceptible facial drooping and shoulder sagging, to complete muscle paralysis and collapsing on the floor. I have no idea if my feelings are what cataplexy is, but based on the description on the questionnaire, I felt my symptoms fit. I even have a sound that I hear in my head when I feel whatever this feeling is.

I had often wondered if that feeling of muscles suddenly draining was normal, or if other people felt it, but figured it was just me being overly-emotional and dramatic and didn’t over analyze it. After I learned that this was a thing, it made me wish I had paid more attention to it before.

Based on these other symptoms, and a few irregularities he saw from the data from my first sleep test, he wanted me to do another type of sleep study – a daytime sleep test called a Multiple Latency Sleep Test (MLST).  This measures sleep latency (how quickly you fall asleep) during the day, and what stage of sleep your brain slips into.  It’s a pretty cut and dry measure for Narcolepsy – you should not be entering REM sleep during the day after you’ve had a full night’s rest (they have you do another nighttime sleep study the night before, to ensure any daytime sleepiness isn’t due to you being out drinking all night the evening before).

MLST day

MLST daytime study – no hoses up the nose, thank goodness.

sleep study 2

sleep study 3

So, I took four naps, every hour and a half after I woke up.  The first nap I was so anxiety ridden that I had a hard time falling asleep.  I was worried about not being able to and I wanted the test to accurately reflect my typical ability to fall asleep at the drop of a hat.  It took 11 minutes.  The next three naps I fell asleep in 5 minutes, 4 minutes and 3 1/2 minutes.  Pretty short sleep latency times.  While I dreamt during all 4 naps, I never fell into REM sleep, so the result =  no narcolepsy.

Fucking fuck.

I seriously sobbed.

My husband asked, in typical jack-asshole fashion, “wait, you wanted to have narcolepsy?”

I wanted a fucking answer.

So, I got some bullshit diagnosis (severe idiopathic hypersomnia!) that basically means I’m really, really, really, tired all the time but they don’t know why.  Ironically the med treatment they suggested is the same as what they suggest for narcolepsy.

So.  Looking to find other answers now.

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9 thoughts on “Sleep Studies Suck

  1. Oh, honey. Being tired sucks, doesn’t it?

    I used to sleep well, but not anymore. No rhyme or reason. I can nap like a champion, too. Except when I really want to, of course. And throw familial migraines into the mix — YAY!

    My BFF has the fabulous combination of narcolepsy, ADD and hypothyroidism. Fantastic.

    You are not alone. I feel you through the numbness that is non-specific sleep issue related. ❤️

  2. I totally feel your frustration. I thought for sure I’d get a confirmed apnea diagnosis too. Rx change helped, but still cranky & tired as ever despite trying so many other things. Going for 2nd sleep study soon.

  3. Wow. Just wow. What you described seriously sounds excruciating. And what’s giving me additional distress is my 17 year old daughter complains of the exact same things. Especially the violent dream part. Every. Single. Solitary. Night. All night long, she says. Is that even possible? Anyhow, I really feel for you. I know my daughter has difficulty separating her dreams (nightmares) from real life for like the first twenty minutes of the morning. Does that part ever happen to you? I hope you get some answers soon.

    • I def feel like I dream all night long. I don’t get the difficulty separating dream from wakefulness but I have heard of that. I have been trying a couple things to battle the fatigue,and one is I eliminated almost all wheat. I think I notice a significant improvement.

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