I cleared out of Bugville on Monday. On Tuesday morning, I arrived at the neurologist's clinic two hours early for my long-anticipated 8:00 a.m. followup appointment. I made coffee on my camping stove in the parking lot. No way was I going to be late. Or uncaffeinated.
Just as I finished forking over my copay, the doctor's assistant called my name. She led me through a maze of hallways to the doctor's office. I sat in one of the visitor chairs. The doctor was already seated behind her big mahogany desk. She pointed to a young woman in scrubs sitting at a laptop by the window.
"This is Sheena. She'll be our scribe today."
"Hi, Sheena," I said. Old 12-Step habit, hard to break.
I sat in the chair, feeling numb and disconnected. I pulled out the 3-part script I'd prepared at the suggestion of my doctor friend. The remedies you prescribed were ineffective. I would like to try an antiseizure medicine now. Which one would you recommend? That's it. Two statements and a question.
It didn't go as smoothly as I'd hoped. The doctor scanned the report from the physical therapist. I could tell by her snippy tone that she wasn't happy with what she was reading.
"I didn't ask her to diagnose you," she snarled. "I asked her to treat you for BPPV."
"As I understand it, she found nothing to treat," I replied. "She gave me some good balance exercises, though. And she did the hyperventilation test again. You can see her results didn't match yours."
"You don't have vestibular paroxysmia, you have BPPV and vestibular migraine."
"The NIH literature seems to show that the hyperventilation test is not 100% confirmation of the presence or nonpresence of vestibular paroxysmia," I said. "The sample sizes were small, but not all the patients who definitely had vestibular paroxysmia showed evidence of nystagmous."
She looked at me like I had two heads. At least, I think she did. I for some reason was having a hard time making eye contact with anything but the floor. I was kind of on my last nerve.
"Would you be willing to do the hyperventilation test again?"
I followed her to the exam room. She put the goggles on my head and led me through an abbreviated version of her battery of tests, which consisted of her grabbing my head firmly in both hands and shaking it repeatedly from side to side and up and down. I knew she was watching on her monitor to see how my eyes responded. I'm guessing they didn't. Because I don't have BPPV. Duh.
"Okay, breathe fast for 40 seconds." She panted to demonstrate proper panting technique. "I'll stand in front of you so you don't fall."
I held onto the exam bench, blinded by the goggles, and panted fast for 40 long seconds. I ignored her warm backside pressing against my knees.
"Okay, stop."
She took the goggles off my head. For a few minutes, she didn't say anything. Then she muttered something about a mild left downbeat, and I knew then that she had seen what the physical therapist had seen: possible evidence of vestibular paroxysmia. Yay, I thought. Finally. At last.
"I'll write you a prescription for lamotrigine," she said. "It addresses both vestibular migraine and vestibular paroxysmia.
"Great. Can you have it sent to a different pharmacy? I'm going to be dogsitting in Scottsdale for a month, starting the day after tomorrow."
Her eyes lit up. For a second she looked human. "You are a dogsitter? It's so hard to find a good dogsitter. I have two big dogs. It's so hard to get away."
"I just dogsit for my friends," I said. I didn't say it: you aren't my friend.
"We need to look at your most recent bloodwork."
We went back to her office. Her assistant pulled up my labs.
"January? Where's the WBC number? It's not showing. Can you get this for me? After you get me that number, I'll send the prescription to your pharmacy. Call me when you get it."
I went out to my car, turned on my computer, and found an electronic copy of the January lab report. The WBC value wasn't showing because on the original it was red, indicating an abnormal number. Bummer. Still, it was only one number shy of being in normal range. I still had hope at this point that I would finally get some relief from the freight train going round and round in my head. I called the clinic and left a message with the phone answerer to tell the doctor the WBC number. Then I made my breakfast and ate it. It was 10:30.
My phone rang. The neurologist said, "You had an irregular heartbeat the first time I saw you. Did you ever contact your cardiologist?"
"No," I said.
"This drug can negatively affect your heart. We need to talk to your cardiologist first. And you need to get more recent labs."
"Okay. Do they need to be fasting labs?"
"Yes."
I searched for Scottsdale appointments at the preferred chain of labs. The earliest I could get was a week away. While I was pondering what to do next, my phone rang. It was the neurologist's medical assistant, asking for some more information. In the course of our conversation, I found out I could get my labs done at the lab on the premises. She also told me that the prescription for lamotrigine had been sent to my pharmacy. Hallelujah!
First thing the next morning, I was sitting in a chair outside the lab at the neurology clinic, head in hands, starving and uncaffeinated, waiting for the phlebotomist to arrive. She was a few minutes late. When you want coffee, even a minute can seem like an eternity. I left bandaged and bruised but feeling so hopeful I went to Denny's for breakfast. It was either Denny's or IHOP. I chose the closest one.
Somewhere during that day I called the cardiologist's office and left a message. Sometime later someone (not my cardiologist) called me back to ask me what the heck was going on. Apparently they had received multiple messages from my neurologist.
"Sorry for the confusion," I said. "Basically I want to know, will this drug kill me?"
"I'll leave a message for your doctor."
Later I visited the pharmacy. The pharmacist looked up the new prescription. "I have to call your doctor. This makes no sense," she said. "The instructions aren't clear. And I can't put all that on a bottle." After that, I went to the mall and sat in the air conditioning, surrounded by the din of screaming kids riding tiny motorized cars around the food court. When the sun went down, I chose a parking lot to swelter in for the night, and the next morning I left for the air-conditioned haven in Scottsdale.
Yesterday I was interrupted three times during a Zoom call by a persistent caller whose number didn't appear in caller ID. Finally, I put my Zoom call on hold and answered it.
"I never heard back from your cardiologist," the neurologist said. "I can't prescribe anything. Your WBC, hemaglobin, and hematocrit numbers are too low."
So here I am, back where I started. Again. I'm trying to feel grateful that the neurologist cared enough not to prescribe a drug that might kill me. I wonder if she realizes how tempting it is to . . . nevermind. Not going down that road yet.
Here I am, back in the present moment, bludgeoned by textbook vestibular paroxysmia symptoms in my head and 110°F heat outside the house. The washing machine in my head revs up for its 15-second cycle once per minute, day and night. For about 45 seconds I'm merely dizzy rather than falling over. I lean to the right if I'm not watching where I put my feet (yikes!). Monsoon is coming. I can feel it in my bones and in my head. I will sit it out in Scottsdale, try to stay hydrated, and let you know how it goes.
