Insomnia III - Revenge of the Sith

Welcome to the third installment of my posts about insomnia.

I initially wrote about my insomnia issues on February 16^th, then wrote a follow-up to that first post on August 21^st. I’m not even going to attempt to write a recap or summary of those posts. So if you feel that you need to read (or reread) them, feel free.

The C-PAP Arrives!

After months and months of waiting for the C-PAP to be delivered, it finally appears on my doorstep on August 22^nd. The day after I posted the second part of this series, which I believe I ended by complaining that the machine hadn’t arrived yet.

I tried to get it all set up shortly before I was ready to try and sleep that night, but realized that I needed more time than I had allotted myself to get the job done. The next day I put it all together, and then tried to get it up and running. But, as with what seems like everything else in this day and age, it requires downloading an app to your phone to be able to function.

So, I downloaded the stupid app, and then tried to synch the C-PAP to my phone. Doing that took several days. (I wish that was an exaggeration for comic effect, but nope. Several days.) Every time I’d make the attempt I couldn’t get my phone and C-PAP to converse with one another. Eventually I made it function, but it took way longer than it should have for someone even a little aware of how modern technology works.

I used the app to complete the machine’s set up, and that night, tried using it for the first time. I strapped the mask to my head, and pushed the start button, and it began blasting air into me. And I kept the machine running and the mask on for probably a good forty minutes before deciding, “Nope,” and giving up for the night.

The next night I attempted using it again, and – primarily due to the fact that I’m stubborn – used it for almost an hour before bailing. Then I started the online research to find out why what was happening to me was happening.

It didn’t take long for me to discover that the problem I was having was a real actual documented problem that some people on C-PAPs have. It even had a name: Aerophagia. Instead of pumping air into my lungs like it was supposed to, it was pumping air into my stomach. Giving me an incredible stomach ache and lots of gas.

The first step in the recommended ‘fix’ for this was to take your C-PAP in to your sleep doctor and have him readjust the settings on it.

The Difficulties in Getting a Doctor’s Appointment

Unfortunately for me, I was currently in between sleep doctors, as the clinic where I had gotten my two sleep studies done earlier in the year had shut down when its doctor quit or retired or died or whatever.

So, I first had to have my doctor refer me to a new sleep doctor. Which didn’t take all that long. But then I tried to get an appointment at the new sleep clinic. I was told that they couldn’t get me an appointment until they had gotten my records from the previous clinic. The clinic which had shut down and no longer existed. So if the clinic was no more, where were my sleep-based medical records? Nobody knew.

It took nearly a month for them to track down my records so that they could finally schedule me an appointment. When they called me to set up that appointment, they asked if I could make it to the clinic the next morning. I explained that I was at the mercy of the local medical transport organization, and that they required two business days’ notice in order to schedule me a ride.

I was then informed that the appointment they were offering me for the next day was only available due to a last minute cancelation. And that the next available appointment was six weeks away. So I grabbed that appointment, and prepared to wait six weeks.

A couple of weeks before my appointment, I got a call from the clinic informing me that the doctor had been summoned for jury duty the day of my appointment, and that they would need to reschedule me. So they pushed my appointment out by an extra week.

The Chill Pill

Somewhere around mid-September, as I’m sitting in the sleeping chair wide awake in the middle of the night, I find an advertisement on Instagram for a device called the Chill Pill. According to the ad, the Chill Pill is a cure for insomnia and anxiety.

Well, as you can imagine, that got my attention. So I asked my good close personal friend the Internet for more information on this thing, and was informed that it’s a handheld electrotherapy device that functions by delivering low-intensity electric pulses to your body that have the effect of balancing the neurochemicals in your brain. Okay. Sure, why not?

Definitely one of those sounds-too-good-to-be-true things, but having had the insomnia since the previous December, I was willing to try just about anything.

So, I order the thing, and once it arrives (early October), I use the included USB cable to charge it up (takes about an hour), and read the instruction book. Then that night, I test it out.

You’re supposed to put the loop around your left wrist so that when you fall asleep holding it, it doesn’t fall to the floor for you to step on the next morning. I had to stretch the loop pretty far to get it over my apparently gigantic hand, and was afraid (every time I tried to use it) that it was going to break.

The next step is to turn the thing on, and adjust the rate of the electric pulse. (No idea what you’re supposed to adjust it to, but oh, well.) And then, you put it into your left hand with the circle on the device in contact with the flesh of your hand just down from the space between the thumb and forefinger. And then you hold it in your hand until you either fall asleep within 20 minutes, or until it shuts off at the 20 minute mark at which point you switch it to the right hand and do the same thing. And then if you’re still awake, back into the left hand it goes. And so on.

My first concern is that the instructions also tell you that it typically takes a week to ten days of this process before it really starts working for you. But at this point it’s been ten months since my last decent night’s sleep, so I press on.

That first night I discover that the arthritis in my left hand simply won’t let me grip an object (even loosely) for twenty minutes. More like about eight minutes, and that’s even painful to achieve. And my right hand isn’t much better. I can hold it in my grip for longer than with the left hand, but still not the full twenty minutes per hand.

I did several back and forth sessions, stayed awake, and eventually gave up, setting it next to the chair. I repeated this process for several nights, and then gave up for good.

It’s possible that the Chill Pill is a miracle sleeping device if you can use it as directed. But I can’t, so there it sits.

The Nerve-Wracking Phone Call

A day or two after they rescheduled my sleep clinic appointment due to jury duty, I got a phone call from the medical supply company that had sent me the C-PAP.

The purpose of this call was to inform me that there is a 90 day compliance period mandated by the insurance company during which I have to prove that I’m using the C-PAP regularly. And that according to the data they’ve received from the machine I’ve been hardly using it at all. Meaning that I was several weeks away from having to either return it or pay for it out of pocket.

I went ahead and explained my situation to her. Can’t use the C-PAP because of aerophagia. Couldn’t get an appointment with the new sleep doctor for the longest time. Will be seeing him soon after which time I can hopefully start using the C-PAP.

She said that she understood my situation, and that she wanted me to ask the sleep doctor to do two things when I saw him. First, I was supposed to ask him to contact the insurance company and request that they restart my 90 day compliance period from the beginning. And second, I was supposed to ask him to set my C-PAP machine on automatic, so that it gave me whatever air I needed at the moment instead of the fixed amount that it had been pumping into my stomach.

The Appointment (Finally!)

On the appointed day, medical transport delivered me (and the C-PAP) to the sleep clinic, and after filling out a ream of paperwork, I was taken back to see the doctor. And one of the first things I said to him was what the medical supply woman had told me to ask him.

When I was done with that, he just kind of shook his head and told me, “Yeah, the reason that she told you to tell me those things is because as a medical supplier she doesn’t have any actual medical training, and has no idea what she’s talking about.”

He then went on to explain that resetting the compliance period back to the beginning isn’t something that the insurance company will do. But, that the compliance period is 120 days, but after the 90 days they tell you about, you have to specifically request the additional 30 days. (Which he said he would do yet that day.) And as for setting the C-PAP machine on automatic, that can only be done on an A-PAP machine, which isn’t what I have.

He then asked me medical-type questions, and gave me answers to the questions that I had. The fix he had in mind was to increase the gap in air pressure between the outflow and inflow of the C-PAP in an effort to reduce the aerophagia.

So now (theoretically) all I had to worry about at the moment was meeting compliance. I had to use the C-PAP for a minimum of four hours a night, for a minimum of 21 days in a 30 day period.

At one point I mentioned the lengthy wait I had to get my C-PAP, and he asked me which medical supply company I had gotten it from. I told him, and he let me know that the company in question has been suspected of using the national shortage of C-PAP machines as an excuse to pick and choose who they send the machines out to based on which insurance company pays them the most. And that the company that this clinic uses usually has a wait time of about a month. Sometimes as long as six weeks, but usually a month. Certainly not the five-plus months I was waiting for mine.

Anyway, we made an appointment for me to come back after a month and would see what was going on from there.

Life With C-PAP

Once I got home I set the C-PAP back up. Later that night when I climbed into the sleeping chair, I strapped the mask to my face and turned it on. And it was better. Still not great, but far more tolerable.

It was more or less at that level of comfort for several more days, and then I started getting aerophagia problems again. So I started using the C-PAP in stretches. An hour here, a couple of hours there, and so on. A long enough, sleepless enough night, that’s easily doable.

It took me 24 days to get my 21 days worth of 4 hours a night. There was the one day where after about an hour and a half I realized I was getting air in my stomach again, and decided to just quit the C-PAP for the night. Then there were a couple of days where I put in more than my four hours, but for some reason the machine didn’t transmit the data correctly. I’ve decided to blame the Bluetooth connection.

The Most Recent Verdict

On this past Friday I returned to the sleep clinic.

They had analyzed the data from my C-PAP, and were happy to inform me that the C-PAP is doing what it’s supposed to.

According to the first sleep study from late March of this year, I had an average of 21.2 times per hour that I would stop breathing. According to the current data from the C-PAP, those incidents have dropped to 0.1 per hour.

You’d think that would be good news, but it really only confirms what I’ve been fearing. The fact that I happen to have both sleep apnea and insomnia is merely coincidental. The sleep apnea is not what is causing the insomnia.

So… now what?

Stimulus Control Therapy

Now the theory is that I have ‘conditioned insomnia’. Meaning that the simple act of getting ready to go to sleep at night is a trigger for an overwhelming fear that I won’t be able to sleep. And that this situation has happened enough that my brain has taken notice of that pattern and said, “Oh, he’s focusing his energy on not being able to sleep. Okay, I can help him do that.”

The treatment plan for this is for me to follow a specific pattern for my sleep habits for the next three months. A pattern that looks very troublesome to me.

#1 – Go to bed only when sleepy. Not when I just feel fatigued or exhausted. (Which – to be honest – is most of the time in my case.)

#2 – Use the bed/bedroom for sleep only. The obvious problem here being that I have neither a bed nor a bedroom. I sleep sitting upright in a chair in the ‘living room’ area of my apartment. And because it’s the main place to sit in that area of the apartment, I tend to sit there quite a bit during the daytime as well as sleeping there at night. So I’m not quite sure what to do about that.

#3 – If I don’t fall asleep within 15 minutes, I’m supposed to get back up, go to another room (i.e. not the ‘bedroom’), and do something relaxing. Once I feel sleepy again, give it another try. And if I’m still awake 15 minutes later? Get back up again. Rinse and repeat.

#4 – Wake up and get out of bed at the same time every morning. And that’s every morning. No sleeping in on weekends or holidays. No staying in the sleeping chair even if I’ve gotten no sleep during the night.

#5 – Absolutely no napping. The only time I’ll be allowed to sleep will be the time between getting into the sleeping chair and falling asleep within 15 minutes and waking up when the alarm goes off at the newly appointed time to get up.

The doctor told me that it’s very possible that I’ll be going for more than a day without sleep frequently during the first few weeks of following this pattern.

So that’s the current state of my insomnia. Which means I’ll eventually be writing a post entitled Insomnia IV. The only good thing I can say about that is that the only three fourth-movie-in-a-series subtitles I can immediately think of are “A New Hope”, “The Voyage Home”, and “The Quest for Peace”, all of which sound like what I’d post in regards to my insomnia coming to an end.