Sleep Apnea — An Invisible Illness

My first experience with sleep apnea was when I was embarrassed by my boss. She would fall asleep in meetings. If she wasn’t talking, it was easy for her to drift off to sleep. I worked in a behavioral health division. Her behavior felt rude and I wondered if she was up all night causing her to fall asleep in meetings.

Several months after she took another position, she stopped by. After a short visit, I could tell something was different about her so I asked her. She said, “Oh, I have sleep apnea and as soon as I got treated for that I felt so much better.”

. . . .

About 12 years ago, I was diagnosed with non-Hodgkins lymphoma. In the process of having a PET scan and a bone marrow biopsy, I passed out and was admitted to the hospital. While there I had a respiratory code. The oncologist overrode the pulmonologist who planned to do surgery.

He started chemotherapy and began to drain the fluid surrounding my lungs. I was on a respirator when I had the code and when they woke me, they began to drain the fluid. I was put on a Bi Pap machine and was told that I couldn’t leave the hospital without that machine.

My insurance wouldn’t cover it without a sleep study. I had an appointment scheduled for right away. The test showed no sleep apnea. But the insurance paid for my bi-pap machine. I was put on oxygen after the bi-pap machine.

Some years later, I was tested for sleep apnea. The technician at the hospital sleep study room as he was hooking me up said, “Usually people who have trouble with sleep apnea have a shorter neck.” Then he asked me if I fell asleep when driving. I had never done that.

The next day, he said, “I didn’t think you would have sleep apnea as you don’t fall asleep when driving, and you don’t have a short neck.

It has been at least 11 years since my first test. Several years later I started having Atrial Fibrillation (AFIB) and it could not be converted, requiring me to be on heart medication and blood thinners since then.

Because the AFIB could not be converted, the cardiologist decided to have me checked for sleep apnea. He said, sometimes that is why it can’t be converted. Right now I live with AFIB and take three different medications for that.

He referred me to a sleep study doctor and I waited a while for that appointment. In the meantime, I read about sleep apnea. I have some of the symptoms. I want to go to sleep around 8:30. I thought it may be because I took myself off of caffeine. Or maybe it was just because I am old.

. . . .

My husband says I snore. I seem to have less energy during the day, don’t get as much done as I used to, and will get tired easier. Less libido and waking up with dry mouth have been common for some time now. I thought all of this had to do with aging.

Then recently I have had some very light headaches, and they go away right away after I’m awake for a while in the morning and they come and go and I haven’t had headaches since my early 20s.

The sleep doctor recommended an at-home sleep study. I received that test and after a couple of weeks, I hooked it up and used it for a night as prescribed. Results were pretty quick and the results were that I have severe sleep apnea.

He reviewed the numbers with me at another online appointment but the numbers meant nothing to me. They verified to the doctor that I have sleep apnea and that it is severe.

The next appointment was to be fitted for a machine. Insurance was causing some problems to get that scheduled. The appointment happened this week. I started the machine and I am on day four. They told me that there would be a learning curve and the machine I have decided on may not be a fit for me.

Mood changes and irritability are also symptoms of sleep apnea. I didn’t think that was true for me, but due to the recent election, and my thinking I might need a divorce, I’m not sure. I even told my husband that. That is not me. But who knows? Once I use this machine for a while we will see if that comes up again.

After four days on the machine, it hasn’t fixed me. It doesn’t place me where the technician told me I should be, so I’m guessing I may be doing something wrong. I have a number to call to review what I am doing and my numbers with a sleep study coach.

. . . .

Apparently, I am doing well with the CPAP machine. I received a call this morning and according to the sleep coach, my numbers look good and I appear to be doing everything right. She reinforced cleaning the machine and other equipment involved weekly or bi-weekly.

My husband says it gets loud when it slips off. I don’t hear it but he has woken me up. If it slips off, that could explain why my numbers continue to be higher every other night. The coach didn’t have the specific numbers. She has a report that things are working okay.

Because there is a ramp-up feature that allows the air to start slow and then get to the right amount for sleep, the coach did tell me that I don’t have to wait for the ramp-up to get to 7 before I go to sleep, where it is supposed to be. The machine waits for me to doze off to ramp up to 7.

I was waiting to make sure the gauge would go to 7, rather than staying at a 4. The learning curve appears steep for me. I was relieved to hear it is working right on their end.

A good report should mean that “you got this” right? I’m not sure. Even though I now know several people who use machines, no one talks about it or has pictures of their use.

It does appear to be an invisible illness!

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First published by Invisible Illness on medium.com