8 Apr., 2021

“Brother’s Woes”

A CPAP machine

My brother is having his own sleep woes these days. He just went in for his own sleep study, his first—well, really second, but the previous one was scrapped, albeit, he was prescribed a CPAP machine a few years before the study.

How did he get a CPAP without a sleep study? That’s what I asked. Apparently, it is possible to have a home-based apnea test these days. It starts with a spouse or significant other complaining about your snoring, coupled with daytime tiredness, and then a doctor can prescribe a home-based test that monitors your breathing while you sleep.

Not really my brother.

A standard sleep study in a clinic monitors your breathing, your heartrate, your blood oxygen saturation, your temperature, and a number of different brainwaves. Possibly even your galvanic skin response. A full sleep study in a lab records your REM sleep, and your other stages of sleep, as well as the order of the stages. It wants to know not just if you are breathing, but if you are breathing effectively, and even things like, did you hold your breath momentarily when you went into REM sleep? Do you move during any stage of sleep? Do you breathe heavily or especially deeply at any point? Do you wake up for reasons other than your breathing having stopped?

The CPAP is a great solution for people who sleep poorly due very specifically to apnea. I’ve been tested for apnea twice, and not shown any signs of it. I could tell everyone was disappointed (it’s an easy fix, which few other sleep problems have), even though there was no real reason to suspect it was behind my issues, since it occurs almost exclusively in people who are overweight. That’s a bit of a catch-22, since poor sleep can cause a person to gain weight.

So my brother was swimming along with the CPAP for a while, but has recently been getting spells of exhaustion during the day—not just drowsiness, or lack of energy, or “I need a cup of coffee,” but real inability to even stand up from his desk, or hold up his own head, with objective signs, such as very poor reflexes, and lack of a startle response. The first thing his doctor suspected was Chronic Fatigue Syndrome, and tested him for antibodies for a number of viruses that are suspected causes of CFS. None of them panned any flakes.

After a year of tests and things I won’t enumerate, his doctor decided he needed a sleep study to check for narcolepsy. I asked why they didn’t just go ahead and try a narcolepsy drug and see if it had any effect. The answer seems to be that narcolepsy drugs are so addictive, and have such a high street value, that doctors need to be able to produce good evidence that a drug, such as Adderall, Concerta, or a plain old, $2.50 / month dextroamphetamine is really medically necessary. My brother might himself need documentation if he were ever tested for drugs at work, or tested following a car accident (even if he was not at fault). Sometimes, these days, it isn’t enough to say that your controlled substance you tested positive for was prescribed by a licensed physician. You employer wants to know that some test exists, verifying your need for the drug.

Yes, the ADA secures your privacy in that you don’t have to reveal the reason for a prescription (narcolepsy, ADD, or whatever other reason a person might take a drug like Concerta), so the diagnosis itself may remain private, but if the drug is a controlled substance, particularly one you are bringing onto the work site, the fact of the diagnosis may not remain private. An employer can require a letter from a doctor stating something to the effect that “Josh Q is a patient under my care; based on standard treatment guidelines, I have prescribed Adderall for Mr. Q, following an exam that showed this treatment to be appropriate.”

And, unfortunately, given the political climate around prescriptions, Josh’s doctor needs to retain documentation for himself showing the reason for every pill he prescribes. If his prescription records are ever audited, he will need to show (redacted, which is to say, anonymous) patient files, demonstrating the doctor’s reasons for the treatments he chose.

So Josh is going around again, trying to get a sleep study completed. They made some kind of error the first time, told him the data were compromised, and scrapped his first study. This was after he’d waited four months to get into the clinic.

I was a little surprised to hear Josh say “narcolepsy.” I knew he got tired during the day sometimes, but so do I, when I’ve been sleeping 3 hours a night. Josh doesn’t have attacks of cataplexy—he isn’t standing up, talking to me, and then suddenly down on the floor, snoring, which was what I thought happened with narcolepsy. I thought it was like a form of epilepsy, but instead of thrashing, or staring, or shaking, you fell asleep.

Apparently not. Apparently, it can be more like feeling the way I feel when I’ve had three nights in a row of less than four hours’ sleep, except Josh will have been sleeping 10 hours a night, and taking a couple of naps every day. It seems that people with narcolepsy do some of the same things I do when I am in serious sleep deprivation—hallucinate when awake, and fall directly into REM sleep when they do sleep.

So, basically, narcolepsy is sleep-deprivation behavior in spite of getting a lot of sleep.

That explains why, when I have had sleep studies, it is hard to convince the proctors that I don’t have narcolepsy. Often by the time I go in for a sleep study, I am very sleep-deprived, and wake-dreaming; seeing things; going directly into REM sleep; and possibly even sleeping a fair amount for someone with insomnia, if my doctor has ordered medication for me, because he wants to make sure I am not awake all night, so there is data from the study.

So, I sleep maybe, 4 to 6.5 hours a night. My brother sleeps 10 to 12. On average, we’re perfect.

Published by Chava Freya

Insomnia is a brain-based disorder I’ve had since I was at least 16 years old. Anti-anxiety medicine doesn’t help, except when there’s external anxiety exacerbating the problem. Sleep hygiene is irrelevant, because it’s not the problem, although I have submitted to it five different times, including having sleep specialists actually come to my home and advise me on rearranging furniture, buying special pillows, forbidding TVs in the bedroom, telling me the bed was for nothing but sleep, sex and reading, and when that didn’t work, then nothing but sleep. Period. That was the biggest failure of all.

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