Life with Sleep Apnea: My Story
A bout of Bell's Palsy may have saved my life
I woke up one morning in July, 2011 and was surprised to find I could not move one side of my face. The subtitle of this section has given it away, but some of you already knew there are two primary reasons why one side of your face might freeze up. The first is a stroke, the second is Bell's Palsy.
Because of the first, when experiencing this symptom you are supposed to get checked IMMEDIATELY. Because I am an idiot, I waited a week to get checked out. The doctor ruled out other signs of a stroke (including an MRI on my brain) and diagnosed me with Bell's Palsy. The steroids he gave me eventually did their work and a month later I had just about full use of my facial muscles.
That episode revealed some other things about my condition. I had some issues with eyesight that I didn't know if they revealed deeper conditions or I was just getting older. I had some double vision, especially when I was tired, and some sensitivity to light I didn't remember having earlier. I got tested for everything in this season of life. I was eventually diagnosed with Hypothyroidism I would later find to be not uncommon (it is one of those disorders that when you get diagnosed and start talking to people about, you find out just how many people you know also have hypothyroidism, including my mom).
In November 2011, after my recovery from Bell's Palsy and my initial treatment with thyroid pills, I had reached the high deductible on my insurance plan. My doctor, being the practical guy that he is, asked if there was anything else I wanted to check for. I mentioned that I snore and he ordered a sleep test. I felt like I had barely fallen asleep when I was woken up and attached to the machine. I had Sleep Apnea, and a fairly serious case of it.
If the Bell's Palsy hadn't started me down this road, I don't know if I would have ever been treated.
The Signs Were There
As a single person I was missing a key diagnostic tool: the sleep partner
I learned that sleep apnea is often discovered by your sleep partner. Snoring is the most common symptom, but sleep partners may also notice that the sufferer actually stops breathing.
MayoClinic.org describes it this way "Episodes of breathing cessation during sleep witnessed by another person" (for more, check out http://www.mayoclinic.org/diseases-conditions/sleep-apnea/basics/symptoms/con-20020286)
You may have learned from another one of my articles about my career as a youth pastor. My breathing cessation was actually discovered by some middle school boys during an overnight at the church. While I was zonked out on my oversized air mattress, they were using my body as a shield during a sock fight. They told me the next morning that I snored really loudly, except for when I stopped breathing completely. This is what makes untreated sleep apnea so dangerous. People need to breathe.
I shared that story with my doctor and he immediately ordered the sleep test. In hindsight the other signs were there. I had an uncanny ability to fall asleep anywhere I sat down for too long. Friends took pictures of me falling asleep in the recliner while watching football. I fell asleep at my desk at the office more than once. This was more than an normal 2:30 p.m. crash. I was falling asleep in places I shouldn't!
Another sign was falling asleep on a plane. As I talked with other sleep apnea sufferers, they often cite falling asleep on a plane as the best rest they've gotten. That was true for me as well. I remember a flight I took on Virgin America (They were my go-to airline until their sale to Alaska Air. I'll have to try Alaska Air to see if they can match my expectations. Perhaps another article).
I was in one of their medium class seats, a little more room than basic, not as much room as first class. Still way more room than some of the bigger airlines. I was in the window seat. There was an empty seat in the middle, and another gentlemen on the aisle. Because of the extra room, I actually fell asleep on the flight for the first time in a long time. I'm pretty sure I snored loud and long, as when I woke up the passenger two seats over from me had relocated and never came back. And I felt more refreshed than I had in a long long time.
I could fall asleep anywhere
I had so many wires attached to me
Once I can find the photo I took I'll update this article with it. Despite the amount of apparatus attached to me, I fell asleep fairly easily. At the facility I went to the tests are scheduled for late enough in the evening, which I think helps.
Once they determined that I did have sleep apnea, they woke me up to attached the mask and then I was to go back to sleep so they could calibrate the airflow. That is set by doctors and is not changeable on my machine by me. I've never asked about recalibrating it, but I imagine I would have to get my doctor to approve it and would probably require a retest.
If your circumstances allow it, I would strongly recommend the in person test. There is a do it yourself option at home for a fraction of the cost, but there was so much stuff attached to me I couldn't imagine trying to recreate even a portion of it at home. I was in a position where my insurance would cover it because I had hit my deductible for the year. Maybe you have funds in an FSA that needs to be spent before its lost. Just my recommendation based only on my own experience.
MYTH: The machines are loud and bulky
I think folks who still think this are remembering machines from long ago. I've had my machine for seven years and have used it on a number of trips where there are others in the room. Its not silent, but is no louder than a quiet white noise machine. Folks can also hear me breathing through the machine, but its MUCH preferred to hearing me snore all night. My understanding is that the machines have only gotten quieter and more comfortable, as they, like all technology, have improved over the years.
MYTH: You won't be able to fall asleep with the mask and air on
I had the complete opposite experience. I felt like a superhero the first morning after using the machine, or perhaps more appropriately a supervillian. I had, after all, spent the night attached to a machine that made me feel supercharged. My biggest takeaway was that I had not really been sleeping before the machine, and I wonder for how long. For years I would consciously wake up several times throughout the night. Suddenly I was sleeping straight through.
There are several mask types, so if you do struggle with the first one you try, don't give up! The benefits were literally night and day for me. I've been using the machine long enough now that I struggle to remember just how bad it was before I started using the CPAP machine. But I still remember how amazed I was at the difference when I first started to use it.
MYTH: Sleep Apnea isn't that big of a deal
Lack of sleep and lack of air are HUGE PROBLEMS that have widespread implications for your body and your general health. If you snore loud enough to disturb a sleep partner, talk to your doctor about it and see what they recommend. If, like I didn't, you don't have a regular sleep partner, other symptoms include excess daytime fatigue that hinders your quality of life paired with difficulty sleeping at night. See the Mayo Clinic article I linked about for a complete list of symptoms.
Talk to your doctor if you have any reason to believe you might suffer from sleep apnea. You may not like the testing, you may not like the process, but if you are a sufferer, you'll like how you feel after treatment. Its literally night and day.
When should you talk to your doctor?
Do you snore loudly enough to disturb others?
Talk to your doctor.
Do you struggle with excessive daytime fatigue?
Talk to your doctor
Do you struggle to sleep at night?
Talk to your doctor
If you think you might have sleep apnea
Talk to your doctor!
I believe we can all learn from each other. If you've learned something from this article, or if you've got something I can learn from you about this topic, please share in the comments below!
Life with Sleep Apnea
- Yes, I need to sleep plugged in. Portable CPAP machines are far more common now, so this does not have to mean an end to your wildlife roughing it adventures. I haven't chosen to explore that route. Instead, when I have been forced to go camping I have had to find electricity wherever I can. Usually it means making sure at least one of our lots has power at the campsite. Sometimes I've been in a tent in the middle of a row of RVs. It works for me.
- I take my CPAP machine in a dedicated bag as a carry-on when I fly. That is what was recommended to me when I got the machine. This has meant I check a suitcase more often than I used to, as I carry-on my CPAP bag and a personal backpack. I could negotiate this differently to save money, but personally I like just carrying the two personal bags when I tool around the airport. I have started to keep some basic allowable toiletries in the CPAP bag when I travel.
- For years I wouldn't even take a nap without hooking the mask on. Nowadays I don't get to upset with myself if I fall asleep in the recliner in the living room for a little while. I chalk that up to having lost some weight. I try to pay attention to how I'm feeling overall and if I need to make changes I will.
- Full confession, keeping the supplies clean and replacing them as often as you're supposed to is something I'm not very good at. If I noticed that I started getting sick more I might look to that as a factor.
- I typically warn people that I'm using a machine when I'm in mixed company, and that I'll have a difficult time talking once I have the mask on. Some folks like to talk well into the night, so I try to communicate clearly to them.
- If you're overweight like me, losing weight is the surest way to correct symptoms. You can search a bunch of other articles about alternative methods if you want. I'm going to focus on losing weight.