The neurologist was everything I'd expected but not quite what I had hoped for. I knew I was setting myself up for disappointment. How could I not? I've been waiting since October for this appointment. It's no big surprise I built up some expectations during these long months of wondering if this person would (a) diagnose my vestibular malady accurately, (b) have a remedy, and (c) give it to me without lollygagging.
Before I was allowed into the neurologist's inner sanctum, I had to endure an hour of vestibular tests similar to the ones I had at the October ENT visits but more violent. A perky young woman with long flat blonde hair briskly outfitted me with heavy goggles that were supposed to measure my eye movements. I sat on the edge of the exam table and held on as she grabbed my head in both hands and proceeded to jerk my head up and down, side to side, hard and fast.
The purpose of this uncomfortable test (which cost me $100 because insurance doesn't cover it) was to see how much my eyes jiggled around as she upset the crystals in my ear canals. After a while, I felt like my neck was snapping, but I didn't come close to barfing. They keep trying, but I've been living on a boat (in my head) for years. I don't get seasick anymore. Plus, my stomach was empty.
After a long tedious session, she freed me from the goggles. As I tried to regain eyelid function, she looked at the computer monitor showing a close-up of my half-open eyes, caught in a moment of misery, and said, "I saw a few small anomalies."
I waited for her to elaborate. She did not. She sent me back to wait in the hall for the main event, my session with the neurologist. At last I was ushered into a messy office dominated by a big wooden L-shaped desk. I sat in one of the two visitor chairs. She asked me to describe my experience, and when I did, she interrupted every few words with staccato questions. "What does that mean? When did that start? Can you be more precise?"
I tried my best. At one point, I felt myself choking up. Finally, someone was listening to me! I mean, someone who wasn't one of my long-suffering friends. I said, "I told myself I would not cry."
She said, "Go ahead and cry. People often do. Do you have a recent audiology test?"
"You have all my records," I said. "They were scanned a few weeks ago."
She glanced at the stack of paper on her desk. "I never look at them."
I opened the envelope of originals I had brought with me, thinking I bought a cheap Walmart printer just to print out all these records for you, can I kill you now? Lucky for her, my hands were busy searching through the stack of paper. It took a while, possibly because I was having caffeine withdrawals, but I finally located the two hearing tests and handed them over.
"I'll have my assistant make copies of these," she said. "Follow me."
She had me walk up and down a narrow hallway in various postures: one foot in front of the other, like I was being tested for a DUI. Same thing, eyes closed. Stand on one foot, then the other, then again, with eyes closed. Sometimes I fell to the right, sometimes to the left. Each time, I caught myself against the wall, feeling like a clumsy idiot and wondering if I was passing or failing.
"Let's go into the exam room."
I followed her tall chunky figure, grudgingly admiring her colorful swirly dress. I don't remember her footwear but I am sure she wore flats. She moved way too quickly and quietly to be wearing heels. Her movements indicated she'd seen a long procession of patients before me. Like, years and years of patients, all no doubt weeping and barfing as they fumbled through her tests. Not a motion was wasted.
She sat me on the exam table. Then, oh no. More goggles! More head grabbing and jerking and shaking, plus lots of other tests involving eye tracking. And some of the basics. Moving fast, she tested my reflexes, looked in my ears, and listened to my heart. I saw her do a double-take. "Do you know you have an irregular heartbeat?"
I explained what I could about my wimpy case of aortic stenosis.
"I'm going to call your cardiologist. Okay? Now for the hyperventilation test," she said. "Breathe in and out of your mouth, fast, for forty seconds." My neck was starting to wilt with the weight of the goggles, but I held onto the table and gamely started panting like an old dog on a hot day. Pretty soon I was feeling lighter than air, but I kept at it, thinking if I pass out, let's see if she will catch me before I crack my head on the edge of the table. If I survive, I might get rich. "Don't worry, I'm watching the clock," she said at one point. I didn't believe her. My throat started feeling raw. I coughed but kept panting. A memory surfaced of hyperventilating with friends. How old was I? Old enough to know better.
Finally, she stopped me, took off the goggles, and pointed to the computer monitor. "Your eyes are steady as a rock. You don't have vestibular paroxysmia."
"Really."
"I think you have BPPV in a hard-to-treat ear canal, which is why the Epley never worked well for you. And I think you have vestibular migraines. I want you to get some bloodwork. We have a lab here, if that is convenient."
I could hardly feel my feet as I staggered to the wing that held the lab. My brain was sizzling. I put my name on the sign-up list outside the door, and then saw the sign: out to lunch, back at 1:30. I looked at my phone. Barely past 12:30. Argh. I stood there debating. All I wanted was coffee and food, but who wants to go through all that fasting again? I decided to wait. It was only an hour. Surely I'd reached my misery quota for the day. I found a chair in the mostly empty waiting room outside the lab and the pain management clinic, spread out my stuff, and proceeded to feel sorry for myself.
Eventually the phlebotemist returned. She poked me in a vein and drew many vials of blood. I lost count after eight. I was feeling pretty crappy at that point. Now I get why they have those adult-sized high chairs with the padded bar across the front. Just as I was thinking, bye bye, she yanked out the needle, gave me some water, and sent me on my way.
So there you have it. Apparently the tests do not lie, even when the diagnoses don't match my list of symptoms (although some studies have suggested about 60% of the hyperventilation tests are wrong). Of course, it is possible I have more than one illness. I'm willing to consider the BPPV diagnosis. I think the vestibular migraine diagnosis is misguided. I still think I have a case of vestibular paroxysmia. My symptoms fit, and the MRA shows that it is possible.
Meanwhile, I have a referral to a vestibular physical therapist and yet another migraine diet handout.
I'm going to try, I'm really going to try. I'll go to the PT. I'll let them twirl and bend me. I'll do the eye exercises. I'll eat twigs but no more nuts. No raisins, no citrus, no onions, no tomatoes. And in a few months, if I don't feel better, I will go back and beg for one of the drugs I saw on her list of medications, several of which were antiseizure medications often prescribed for vestibular paroxysmia. We'll see who wins in the end.
