Heavy goggles cling tightly to my eyes as I try to keep my balance on my mother’s lap. Even though she holds onto my waist, with the weight of the goggles, I have to carefully concentrate on holding my head up.
I have been in this position about a dozen times before. The lights go off in the exam room and the goggles block my vision as my mother gets into position to, quite literally, flip me around. (She’s freakishly strong like that.) The only glow in the room comes from a computer screen that displays images of my eyeballs, taken by the camera inside the goggles. After the touch of a few buttons, I know: It’s go time.
Two years ago, I was diagnosed with benign paroxysmal positional vertigo (BPPV). In other words, the crystals in my ear canals have been knocked out of place, and I experience dizziness when my head is in certain positions. This condition was triggered by a minor concussion, followed by a root canal a couple of days later. The intense vibrations from drilling a tooth were enough to dislodge the crystals.
While the cause of my BPPV seemed simple, it is not so easily treatable.
There are two reasons: First, because of muscle contractures, I lack the flexibility to properly perform the vertigo maneuvers that are supposed to knock the crystals back into place. Second, my test results show the loose crystals are in my superior ear canal, which is much more difficult to treat.
My doctor says that only 3 percent of people with BPPV have loose crystals in their superior ear canal. When I think about the low odds of getting SMA, the fact that I managed to get the rarer form of BPPV doesn’t surprise me at all.
The only treatment option is vestibular physical therapy. The goggles, the acrobatic way my mother tosses me around, the dizziness that is provoked as a result — it’s all part of the treatment I receive between regular visits with my otolaryngologist.
Just recently, I was at a vestibular therapy appointment where three people — my mother, my therapist, and my caretaker — were needed to help perform the maneuver, or treatment, on me. I was sitting upright at the edge of a table. My mother had to quickly lay me on my right side, a position I can’t easily get into but could withstand for the 30 seconds. (The quicker the movement, the more likely gravity will put the crystals in place.) Simultaneously, my caretaker brought my legs up to the table, as my mother tossed my torso off the edge and held me, and my therapist twisted my head to the floor.
Yes, this is life with SMA and vertigo. I only wish there were cameras capturing the crazy things I do.
About 30 seconds later, I was brought back into an upright position, and suddenly felt dizzy and nauseated. My therapist assured me I was supposed to feel that way, for it meant the crystals were moving. Once I regained my bearings, I did the goggle test to reevaluate my eye movements.
I can’t say I ever imagined myself receiving this kind of physical therapy. At the same time, I’m at a point where I’m willing to try just about anything to rid myself of my intense bouts of vertigo. So for now, I wear the goggles, I do the acrobatics, and I provoke the dizziness.
And when the lights go off, I tell myself, “It’s go time.”
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.