I had not slept well for a very long time, but a solution for my problem wasn’t to be found in a guilt-tripping Huffington Post listicle about how Americans don’t get enough sleep. Turning off devices didn’t help. White noise didn’t help. Good habits didn’t help. I tried every good suggestion, yet still fought to stay awake for some reason that I couldn’t describe, somehow aware that something was very wrong.
When I did finally sleep, it was like death; I woke groggy and tired, sleeping longer and longer to make up for the lack of rest.
Because I had been diagnosed two decades ago as having Restless Leg Syndrome (RLS), a condition that causes wakefulness and disturbs sleep, and because the condition had worsened in recent years, I chalked my problems up to this devil that I already knew.
My RLS actually deters me from exercise. It makes the nighttime twitching increase, and no activity or diet changes seems to help either. So I stopped exercising. I didn’t get obese, though I gained a little weight — and that may be the reason I’m alive.
For as soon as I was ten pounds heavier, my snoring episodes were much louder and more frequent, hinting at something even more sinister going on than I had realized.
The final straw came earlier this year when I realized that I had slept fourteen hours every day for a week without experiencing any improvement in my low energy levels. I still felt like napping all day, avoided stress, and missed deadlines.
Clearly, I needed help. So I made an appointment at the local Veterans Affairs facility for a long-overdue screening and then a discussion with a physician. I had to make two trips to the clinic over about three weeks, but the wait was worthwhile.
Upon hearing of my symptoms, the doctor immediately suggested that I might have obstructive sleep apnea (OSA), a very common condition that occurs when throat muscles relax during unconsciousness.
He made a referral, and a few days later, the Birmingham VA Medical Center neurology clinic called me to make an appointment. Once again, I had to wait a few weeks and keep two appointments, but as you will see, I do not consider this wasted time.
It turns out that my condition is quite common. According to one doctor who specializes in OSA, as many as one out of five American adults suffers from the condition to some degree, yet only about one in ten of them will ever be diagnosed or treated.
Which is a shame, because OSA is a major warning sign of high blood pressure, irregular heartbeat, heart disease and heart failure, stroke, obesity, and diabetes. Countless Americans have died or been injured in workplace and road accidents where fatigue is a factor — and in at least some of those cases, OSA is to blame for drowsy drivers and machine operators.
On my first trip to Birmingham, I was briefed on the procedures involved in a sleep study, received an initial screening and instructions, then was given several appointment options to choose from.
The testing requires at least six hours of sleep while technicians record and monitor your body — a rather long outpatient procedure that must accommodate patient schedules. Shift workers can choose to be tested from mid-morning until late afternoon, for example.
When I finally arrived for my sleep panel, the technician applied electrodes to my scalp, fixed breath sensors near my lips and nostrils and bands around my chest, helped me get comfortable, and pointed out the night vision camera. After turning out the lights, she used the intercom to have me exhale, then close and open my eyes. With the equipment thus proven to be in working order, she bid me good night.
I didn’t see her again for a couple of hours. Here is what I looked like:
Yes, it’s a funny-looking and cumbersome mess to sleep in. The wires all converge in a single unit that detaches, allowing patients to get out of bed and be hooked back up by a technician.
Although the science of sleep disorder diagnosis has improved considerably in the last two decades, the basic parameters are the same: brain activity, heart rate, breathing, and limb movement are all tracked so that doctors can get insight into what’s wrong.
Ten days after my sleep study, a letter arrived in the mail with my results.
During your sleep, you had an average of 51.7 breathing pauses or episodes of shallow breathing per hour. The normal value is fewer than 5 events per hour.
Basically, on its own, my body attempts to suffocate itself almost every minute that I am asleep. My disorder can cause progressive brain damage over time, killing white cells and weakening the blood-brain barrier that protects the cerebrum from infection. Scary stuff indeed — but thankfully, there are treatments available.
When the technician woke me up in mid-study, it was to fit me with a continuous positive airway pressure (CPAP) mask. It was connected through a hose to a machine that sat next to the testing bed.
Proven to heal and reverse the brain injury caused by obstructive sleep apnea, the CPAP device is the most common treatment for OSA. The CPAP works by pumping positive air pressure against a patient’s face, keeping the airway open and thus ‘forcing’ them to breathe while unconscious.
Applying the head straps for the CPAP mask with gentle precision and practiced hands, the technician was in and out of the room in moments. The machine was far quieter than I expected, and although I was not comfortable all wired up and masked, I fell back asleep fairly quickly due to exhaustion. My letter indicates that the mask performed very well:
The CPAP device was very successful in treating your sleep apnea. It reduced the number of your breathing pauses and episodes of shallow breathing to an average of less than 1.5 events per hour.
Last week, I kept another appointment in Birmingham so another flawless VA employee could brief me on how to keep my new CPAP machine clean and in good working order. My life will now change somewhat: whenever I travel, I now need to find distilled water for the humidifier as soon as I arrive, and the equipment will be packed in my luggage. Done with parenthood, I must nevertheless keep baby shampoo on hand to wash the mask.
Then there’s the struggle to learn a new way of sleeping. Turning face-down is obviously not an option anymore, though I seldom did that anyway. Laying on your side is also tricky in a plastic mask, especially if the airflow projecting from the vent over the bridge of your nose awakens and annoys the person sharing your bed beside you; there’s definitely no snuggling in a CPAP mask. The hose can get also trapped by pillows and blankets, disturbing sleep and pulling the mask away from your face.
So far, I have not been able to sleep for more than four hours at a time in the mask, sleeping in shifts. But I can already feel my energy and health returning to me, and that makes everything worthwhile.
Great story Matt, good luck with all the new equipment and getting used to it. Get well soon.
Getting well now, thanks! 🙂
I’m glad you’re feeling better, Matt.
–alopecia
Great story. Important info for a lot of people. Your mileage might vary, but I ditched the humidifier and have had no ill effects. Makes life way easier. Then again I live in the moist NW. Be sure to get your insurance to buy a backup battery. Once you get used to this thing, you’ll never want to be without it. (I once had my road-trip game-day party drive to a sleep clinic in Dallas so I could get a key piece of equipment I forgot.) With the battery, you can travel without worrying.
I actually suffered from dry, crusty sinuses in the AM, so I appreciate the humidifier for resolving a separate issue — though I have turned it down to the minimum setting.
There are medications for RLS, which — believe it or not — is closely related to Parkinson’s. If the CPAP doesn’t do the trick, talk to you doc about a dopamine agonist like Mirapex.
It’s curiously resonant, isn’t it?
Do you use the full mask or just the nose? I’ve just started too. Wonderful. But I was using the full mask and it was leaking around my face. The nose mask doesn’t do it for me…