Insomnia 2 - Electric Boogaloo

On February 16^th, I posted a piece to the blog entitled “Insomnia”.  I was really hoping that my doctors would find a treatment or better yet cure for my problem.  I was hoping not to need to write a follow-up to that post, but… here we are.   

Prelude to a Sleep Study

The day after Bricks Cascade 2022, I had an appointment at the Willamette Sleep Center here in Salem.  A consultation to schedule a sleep study.  I’d had a sleep study conducted on me once before, back in the late 80s or early 90s, when my CFS was still undiagnosed, and they were busily eliminating medical conditions that I ‘might have had’.  I did not care for it, and was really not looking forward to another one. 

When I was called back into one of the doctor’s offices, she explained to me just what a sleep study entailed.  We talked about the medical reasoning behind why I might have sleep apnea.  We talked about some of my other medical problems. 

And I brought up the fact that I sleep sitting upright in a chair, and haven’t been in a bed since late 2009 or so.  She made a note in my chart and said that it wouldn’t be a problem, they’d just make sure to put me in a room with a comfortable chair. 

They scheduled me an appointment for about a week later.  I went home, called medical transport to arrange a ride for me to the sleep center and then back home the next morning. 

And then I just waited, continuing to not sleep for most of the night, most nights. 

The Sleep Study

When the evening of March 22^nd rolled around, medical transport ferried me to the sleep center.  My appointment time was 7:00 pm through 7:00 am the next morning. 

I brought along my walker, which is a very good thing, because the first thing they did was make me walk down what seemed like a six mile long hallway to get to the room I’d be using for the night. 

Once there, they ushered me into the room.  It was a very nice room.  Much bigger than I was expecting.  Hospital bed against one wall, with a bank of electrical equipment to one side and a nightstand to the other.  And across the room, next to a small writing desk, was indeed the promised comfortable looking chair. 

I was told to just hang out here in the room until the technician was ready for me.  So, that’s what I did.  I sat in the chair – which was as comfortable as it looked – and waited.  I had brought along my kindle, but instead entertained myself with my phone. 

I didn’t have to wait very long before the technician came and got me.  And led me back down the impossibly long hallway I’d just walked down shortly before.  And then down what was an equally long hallway in the other direction where they were going to cover me head-to-toe with sensors. 

Once we were in the sensor-attaching room, the first thing that the technician said to me was, “You have a beard.”  So, she was observant.  Okay.  “Yes I do,” I replied.  Her response to that was, “We’re going to have to shave that.” 

I don’t think that I actually gave any thought to formulating my next words, they just came out of my mouth unbidden.  “The Hell we are.”

“You aren’t going to let me shave you?” she said with great incredulity.  I said, “No.”  It was a ‘No’ with a great amount of finality to it.  Which she picked up on. 

So, after letting out the single most exasperated sigh I’ve ever heard, she said, “Fine,” and was just a little bit bitchy for the rest of the night. 

Next came the attaching of the sensors.  Most of them being sensors attached to little white circles of sticky-backed tape, so you could just press them on wherever you needed them.  Sensors on my legs.  On the side of my stomach.  On my chest.  On my forehead.  Probably other places I can’t remember.  Then she had to dig around in my facial hair to find applicable spots to glue two more sensors to my face. 

Then I had to walk alllll the way back to the first room that they’d put me in.  I was told that I had to wait while she went and wired up the other patient getting a sleep study that night, and told me that I WAS NOT allowed to fall asleep before they were ready to start the study. 

So, once again I sat there and let myself be entertained by my phone.  (YouTube videos, this time.)  She would periodically startle me via the speaker in the room, asking if I was still awake.  I kept assuring her that I was.  At about ten minutes to ten her voice came through the speaker again, this time to tell me that we were about ten minutes away from getting started. 

I dug out the bottle containing my nighttime pills from my pocket – which included my very recently prescribed sleeping-pills-of-the-month – and took them with a bottle of water they’d provided me with. 

And about ten minutes later, she came in, stood by the side of the hospital bed, and told me to get in.  I told her that I sleep sitting upright in the chair.  I may have even patted the padded armrest of the chair I was sitting in as I said it. 

“Yeah,” she said, “I saw that in your notes.  But, no, you’re going to sleep in this bed.” 

Hmm.  I explained my respiratory issues.  She didn’t budge.  I explained the issues with my back.  She didn’t budge.  I told her that the doctor in charge of my case here in the sleep clinic had authorized me to sleep in the chair.  She.  Didn’t.  Budge. 

I sat there and thought for a few minutes.  What if I just refused to participate in the sleep study that night?  Would the insurance company be pissed off at me?  Would I be charged a ‘no-show’ fee?  And if I refused, how would I get home this late at night?  Medical transport wouldn’t come pick me up until morning.  My sister was most likely in bed already so I wasn’t about to call her for a ride. 

It looked like while I had won the battle to keep my beard, I was losing the battle for my choice of where to sleep. 

So I went over to the hospital bed.  Played with the controls until the head of the bed was as straight upright as it would go.  Then slid in.  She went around to the other side of the bed where the bank of electrical equipment was, and then attached cables to every sensor on me.  Those cables were all plugged into a box that looked like it was from late 80s sci-fi.  And that box had a bundle of cables that hooked into the equipment bank. 

She then attached miscellaneous other stuff to me, went to the door, and told me to go to sleep.  Yeah, right.  I was in a weird almost-but-not-quite sitting position on a remarkably uncomfortable hospital bed, wired up six ways from Sunday, had a pulse oximeter both velcroed and taped to one of my fingers, and an oxygen tube in my nose.  Yeah, I’ll fall right to sleep like this. 

But, because my body hadn’t yet burnt out the functionality of the current sleeping pill, I did manage to fall asleep. 

And was then rudely awakened by her voice over the speaker one more time.  At 5:30 in the morning. 

So I got up, used the bathroom, and then sat at the desk where I had to fill out paperwork regarding my sleep study experience.  How long do I think I slept?  (Not only were there no clocks in the room, but the technician stole my phone when she put me to bed so I couldn’t check the time.  So, how the Hell was I supposed to know?)  How fast did I fall asleep?  (Again, no idea.)  Did I dream?  (Not that I can recall.)  What do I remember from that dream?  (Yikes.  What dream?!)  And so on and so forth. 

Eventually I was informed that my ride was here, and I fled the sleep clinic thinking, “Thank God that’s over!” 

The Results

My follow up appointment with the doctor was several days later.  First she read me some stats from the study report. 

I apparently slept for 305 minutes.  (That’s five hours and five minutes, assuming my math is right.)  During those 305 minutes, I stopped breathing an average of 21 times an hour, for anywhere from 10 to 45 seconds a time. 

“You have sleep apnea” she then informed me. 

“And that’s what’s causing the insomnia?” 

I wasn’t thrilled with her answer.  “Probably, yes.”  Only probably.  She went on:  “The likelihood is that your brain, being aware that breathing is important and that it keeps stopping while you sleep, is simply keeping you from sleeping as a defense mechanism.” 

“So… I’m going to need to use a C-PAP machine?”

It was a simple yes/no question.  The very last thing I expected her to say was, “That’s what we need to determine.  We’re going to schedule you for another sleep study.” 

Inside my head, my interior monologue then used every curse word I know. 

The Sleep Study – Round Two

My second sleep study this year took place in the exact same room that my first one did.  All the way down at the end of the longest hallway in the world. 

This time though, things started out with The Fitting Of The Mask.  There was a C-PAP machine on the nightstand next to the bed, and a box full of C-PAP masks on the bed.  The technician (yes, the same technician as before) would hook one up to the machine, then strap it to my face.  Turn on the machine, and ask me inane questions while checking for leaks in the mask. 

Then, she would repeat the procedure with a different mask.  After trying on the fifth mask, she determined that the fourth mask would be the one we would use. 

The rest of the study went more-or-less how the first one had gone.  Long walk.  Sensors.  Long walk back.  Sit and wait.  Then climb into that stupid bed again. 

“See?” she told me.  “You wanted to sleep in a chair last time, but you tried the bed and found out that it was comfortable and you got a good night’s sleep.”  It seemed like she was gloating. 

“Well, comfortable is probably the last thing I’d call it.  But yes, I did eventually fall asleep.” 

From this point on she seemed much angrier. 

She hooked me into the bank of equipment again, leaving off the oxygen tube and affixing the mask to my face.  Then once again ordered me to go to sleep and left the room. 

Two hours later she returned.  “What’s the problem?” she asked me. 

“I haven’t fallen sleep yet,” I told her. 

“I know that.  Why?”

“I have insomnia.  That’s the whole reason I’m here.” 

She glared at me somewhat menacingly.  “You fell asleep last time.”  There was actual accusation in her voice, like I was staying awake to spite her. 

“Last time the sleeping pills I was taking were prescribed recently enough that my body hadn’t yet burned out their effectiveness.” 

She probably stared at me for a good 30 seconds before handing me my phone.  “Play with your phone.  Wear yourself out mentally.  And get some sleep.” 

So, I played with my phone for about an hour, then put it down and tried to sleep again.  Which worked this time. 

The Results – Round Two

And several days later came another follow up appointment. 

This time I only slept 197 minutes.  (Three hours, seventeen minutes.)  There was no listing for how often I stopped breathing or for how long. 

“The C-PAP machine worked.  Your breathing was MUCH better for this test.  So, I’m going to write you a prescription for a C-PAP, and send it off to the medical supplier.  You’ll need to come back here periodically so that we can check your C-PAP and make any necessary adjustments.” 

And that, I thought, was that. 

The Waiting List

A week after the second sleep study, I got an email from the medical supply company that had received my C-PAP prescription.  They wanted to inform me that they had received my prescription for the machine and that the insurance had approved it, so yes, I would be getting one. 

However…

Since there’s currently a national shortage of C-PAP machines, I’ve been placed on a waiting list.  And they hope to get one sent out to me in five or six months. 

This was not exactly the news I was hoping for.  Pretty much a guarantee of continued insomnia for another half a year?  (Deep sigh.)  No thank you. 

I now get an email from them once a month informing me that I’m still on the waiting list, and that my C-PAP machine is still “more than a month” out.  So very helpful. 

Sleep Deprivation

I’m currently getting an average of two and a half hours of sleep in any given 24 to 36 hour period.  Which is not enough for a human to survive on.  (Certainly not enough for a human suffering from CFS.)  I have thus entered the realm of sleep deprivation. 

I found a list of systems of the body that have increased risks with insufficient sleep.  Mental health disorders, diabetes, obesity, pain, immunodeficiency, cardiovascular disease (all six of which I already have), and hormone imbalances.  None of that sounded good to me.  They also make mention of increased chance of death. 

Symptoms of sleep deprivation include:  slowed thinking, reduced attention span, worsened memory, poor or risky decision making, lack of energy, and mood changes.  And ALL of those symptoms seem very, very familiar to me right now. 

I’ve got an inability to concentrate (which, now that I think about it, is just the two symptoms ‘slowed thinking’ and ‘reduced attention span’ combined).  This inability to concentrate effects me in every aspect of my life, but what’s most frustrating to me personally is that it has robbed me of my ability to read. 

I can still skim.  But I can’t really read.  I can get basic information out of a webpage.  I just cannot transfer the story told in the pages of a book into my brain. 

I had been so busy with LEGO stuff leading up the Bricks Cascade this year that I hadn’t even been trying to read.  So I don’t know exactly when I lost that ability.  But trying to read after I returned from the con simply didn’t work. 

Insomnia During the Flupocalypse

I may have mentioned in my last post that I was down for 58 days with the flu.  Being that sick took a lot out of me, and my body kept saying, “Screw this nonsense” and started sleeping more.  Not a lot more, but a noticeable amount. 

It still took me forever to actually fall asleep, but once I was, I was asleep for longer than I had been in the before-flu times. 

About halfway through the flu, I had a thought occur to me, and picked up my Kindle once again.  And, as it turns out, I was sleeping just enough to be able to concentrate on reading. 

So, for the last half of the flu, I read.  I read thirty one books.  Well, thirty-one and a half.  When the flu left, so did my ability to read.  And I am once again stuck in the middle of a book. 

Continuing Adventures With Prescription Sleeping Pills

I see a nurse practitioner who specializes in psychiatric/mental health medication anywhere from every two weeks to a month.  And each time I see her and explain that her previous sleeping pills were ineffective, she prescribes me something different. 

At one point she prescribed me Ambien, with lots of warnings about the more interesting examples of the potential side effects.  (Not that I cared at this point.  I didn’t think I’d mind waking up in my kitchen in the middle of making an omelet or discover myself hurtling down the freeway in a stolen car, if only the Ambien would allow me some sleep.) 

The bottle said take one or two, and I decided to start off with one.  I took it, climbed into the sleeping chair, and… slept.  I slept for something like 12 hours.  Got up, did my morning stuff, saw no evidence of sleepwalking or other nocturnal activities having occurred.  And about two hours later climbed back into the sleeping chair for a four hour nap. 

There is nothing in my medical history that should have made me think my problems were over, but for some reason, that was my attitude.  “Oh, thank God, at long last my insomnia is cured!”  Yeah, I know.  It was an incredibly stupid thought for me to have. 

The next night, I took my one Ambien and climbed into the sleeping chair expecting the same success.  But sadly, taking that pill on that night had the same effectiveness as taking an M&M for insomnia would have.  I got no sleep that night, and didn’t get any sleep until a two hour nap the following afternoon. 

So, on night #3 I took two Ambien.  Which once again, had no demonstrable effect on me.  I continued taking Ambien for several more days, at which time I had an epiphany.  “Hey,” I thought to myself, “I wonder if this intense stomachache and these muscle cramps that I’ve had for five days now could be a side effect of the Ambien?” 

And according to my good friend the Internet, stomach pain and muscle cramps are indeed listed as possible side effects of Ambien.  So, I didn’t take it that night.  Or indeed, at anytime since. 

The next couple of sleeping pill prescriptions went eerily the same way.  Not the horrible side effects, but the fact that they each worked at most one night and one night only. 

Currently I have six different bottles of sleeping pills on my desk.  (It would be seven, but the Ambien went straight into the garbage once I quit taking it.) 

And each night, before what I am hoping will accurately be called “bedtime”, I take the recommended dose of one of them.  Never the same medication two nights in a row. 

This is an experiment (approved by my medication prescriber) that I’m only a few days into right now.  But I’m not unhappy with my results.  I’ve slept through the night once.  I’ve gotten five hours of sleep another night.  I count both of those as major wins.  We’ll see if it continues in this direction. 

(In addition to pills, I’ve also tried counting sheep.  But they’re LEGO sheep, and I’ve only got the five of them.) 

 

There Must’ve Been Apples Involved

Sometime in early July, I got a letter from Willamette Sleep Center.  I stared at it for a few minutes before opening it.  “What do they want now,” I asked myself.  “A third sleep study just for the Hell of it?”

But what they wanted was to inform me that effective July 15^th, the Willamette Sleep Center would be closing.  For good.  And that I would need to find a new sleep doctor. 

That search hasn’t started yet.  But probably should reasonably soon, as I’m going to need a sleep doctor when I inevitably have C-PAP questions. 

They didn’t explain why they were shutting down or anything.  My theory is that someone kept bringing them those apples that are supposed to keep doctors away.  (Hey, it’s as good a theory as any other.) 

Paranoia and the Dark ‘What If?’s

The one thing that won’t leave my mind is the sleep doctor’s use of the word “probably”.  That the sleep apnea is only probably the cause of the insomnia. 

But what if it’s not?  What if the fact that I have sleep apnea is just a coincidence, and the actual cause of the insomnia is something else?  With the theory that the cure is the so-far elusive C-PAP machine, my doctors aren’t looking for an alternate solution. 

I’ve got CFS, the symptoms of which include a certain degree of sleep wackiness.  (Wackiness?  It’s late as I sit here typing this.  I’m very tired.)  What if the insomnia is just a worsening of that? 

What if it’s something else entirely?  Something obscure that nobody has thought of yet. 

What if the insomnia just doesn’t ever go away? 

Potential C-PAP Acquisition

Sometime last week, I got a phone call from the medical supply company.  Not an email, but an actual phone call!  From an actual person! 

They were calling to inform me that my C-PAP machine was now a few weeks to a month from being delivered to me.  So it’s entirely possible that my C-PAP machine will arrive here any day now. 

Will it allow me to sleep, or am I going to end up writing a blog post entitled “Insomnia III:  Revenge of the Sith”?  Only time will tell.