My Oversized Tongue Is Ruining My Life

How can one muscle wreak so much havoc on an otherwise healthy body?

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I never thought I'd dislike the size of my tongue. But my abnormally large tongue has cost me thousands of dollars and nearly ruined my life.

As long as I can remember, I've always been chronically tired, prone to falling asleep in the most unusual places at the drop of a hat. When I was in school it was never a big deal — I would take a nap in the middle of the afternoon and be re-energized for the rest of the day.

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But after I graduated from college and got a regular job, the situation deteriorated rapidly. Just a few months following my first day, my personal and social life had virtually disappeared. Exhaustion completely overwhelmed my life. I would drag myself out of bed, go straight to work, come back home, eat dinner, and be back in bed by 7:30 or 8:00 p.m.

I was sleeping an average of 11 to 12 hours a night, and I was still bone-tired. Apparently those midday naps I took while in school were giving me a whole lot more juice than I realized.

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Finally, after much prodding from many loved ones, I scheduled an overnight sleep study.

The results weren't entirely surprising, but devastating nonetheless. I was diagnosed with a cardiac arrhythmia and sleep apnea, which was waking me up and disturbing my REM cycles an average of 49 times an hour. 49! No wonder I was so tired.

But isn't sleep apnea something most commonly found in older and overweight men? I was a healthy woman in her 20s. I shouldn't have sleep apnea.

I was sleeping an average of 11 to 12 hours a night, and I was still bone-tired.​

Alas, my tongue turned out to be the cause of all my problems: When the muscles in my smaller-than-average throat relaxed as I fell asleep, my larger-than-average tongue would fall back and cover my esophagus, blocking my airway.

It almost sounds like a comedy sketch — who can imagine not being able to breathe because their tongue's too big? I was too sleep-deprived to appreciate the humor.

I discussed treatment options with my doctor for a long time after the sleep study. My two most viable options were to use either a Continuous Positive Airway Pressure machine (CPAP) or an Oral Appliance Device (OAD). To use a CPAP machine, the user puts on a face mask before bed that blows air down the throat the entire night to force the user's airway open. An OAD looks somewhat like a retainer — it's molded to the user's teeth and is designed to pull the lower teeth forward while the user is sleeping to expand the airway.

I couldn't bear the thought of having a mask on my face while I slept, I opted for the OAD. What I was not told while discussing this option was how much OADs hurt. They pull your jaw way out of its normal resting position, and after eight hours of that I almost always wake up feeling like my jaw's been nearly dislocated during the night.

Sometimes it's so painful that I simply can't bear to put it on. I'm left with two ugly choices: sleep with the apnea and be exhausted the next day, or sleep with the OAD and have an aching jaw and sore-filled mouth the next day.

On the days following a night without the OAD, I have to schedule in regular naps to compensate for my lost sleep. The 30 minute "recess time" that's a regular part of work at my old company was a great time to sneak in a nap if I needed it. I also routinely fight headaches and migraines when I do choose to wear the OAD, which leaves me working from home or calling in sick a lot more often than I'd like.

It's frustrating having to so carefully regulate my social juice, knowing that it can be drained very quickly. But the biggest obstacle I've had to overcome is the overwhelming feeling of being irretrievably broken. Why is a seemingly healthy 20-something woman buying Polident to clean her denture-like oral apparatus and leaving parties well before 10 p.m.? It's just not right.

I often remind myself that everyone struggles with something. I must confess, though… on my darkest days, it's pretty difficult to keep that perspective in mind. I'm sure that the chronic sleep deprivation doesn't help me look at things rationally. At the end of the day, I'm just grateful for friends and family who continue to love me — oversized tongue and all.

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