Last spring, Grace came down with a stomach bug. Or, that’s what it seemed like at the time. It started with a headache, and dizziness and nausea. Then she got sick to her stomach. It didn’t last too long, so we assumed it was a 24 hour thing. We all waited to catch whatever it was that she had. But none of us did. Then, about a month later, the same thing happened again. Again, Grace was the only one in the house who got sick. Was it food poisoning? Another bug?
Over the summer, she came down with swimmer’s ear. Neither of the girls had ever had it before, and I had no idea how painful it was or how long it could last. Grace spent three nights pacing the floors in her grandparents’ house, barely sleeping, before the medicine kicked in enough to dull the pain.
We were staying at my parents’ place in the Berkshires. After several really rough nights, I was hoping Grace was finally feeling better and would get some sleep. I was reading in bed, when Grace knocked on the door. “Can I come in?” she asked.
“Of course,” I told her. She climbed up into bed with me and started crying. Her processors were off, so I had to sign with her. I asked her what was wrong. She said, “I just had this realization that everything, life, all of it, is pretty futile. Unless I really make my mark. Unless I really do something big.”
When Grace was around three, she began finding herself weighed down by heavy, heartbreaking thoughts at night, when it was time for bed. Often she’d be overwhelmed by issues of mortality – her own and everyone else’s.
Like tonight, these conversations would occur after we’d stored her speech processors in the dryer for the night, and put her batteries in the charging port. I’d hold her and focus on figuring out how to comfort her, and then translate my thoughts, as best I could, into signs. As Grace lay with me now, almost a decade later, I found myself unable to come up with anything to say. I just hugged her. After a short time, she stopped crying. She looked up at me and said, “Sorry. I think I’m just overwhelmed and emotional because I’m really not feeling very well right now.” Then she rushed out of bed, ran to the bathroom, and proceeded to begin throwing up. Again.
I went in after her. She was sitting on the floor in front of the toilet. She looked up at me and said, “Mom, am I allowed to swear?”
“Yes,” I signed.
“HOLY SHIT,” she said.
When we got back home to DC, I started trying to piece together a better understanding of Grace’s now-regular occurring bouts of sickness. They always seemed to start with a headache, which would respond pretty well to advil. But it was the overwhelming dizziness and nausea that really did her in. She would have such a strong feeling of vertigo that she could barely walk. The dizziness would get even worse when she would lie down. She would throw up for several hours, during which time she would sit on a tiny step stool in front of the toilet, wrapped in a blanket, and doze off with her head on the toilet paper roll between bouts of puking. It would take about six hours for the dizziness to susbide enough for her to be able to lie down and pass out. The next day, she’d be exhausted, but otherwise mostly okay.
The researcher in me started to take over, and I went online. I typed in vertigo, dizziness, nausea, and cochlear implants. I also got onto Facebook and posted a question to both of the groups I’m in for parents of kids with CIs, asking whether any of the other parents of CI kids had experienced anything similar around this age with their kids. A significant handful of parents wrote back, saying that their children had experienced very similar symptoms, many of whom had been diagnosed with vestibular migraines.
It had taken me a while to suspect migraines in Grace, partly because as a migraine sufferer myself, my personal experiences were so different. Mine begin with a dull headache, and soon after a spot of light, or several of them, begin floating across my vision. If I don’t act quickly and douse myself in pain medicine and caffeine, I’m soon laid low by a debilitating headache. I become highly averse to loud noises, strong smells, and bright light. I spend the next day feeling completely hungover. My own migraines started when I was going through puberty, and, fortunately, have diminished significantly in frequency since I first became pregnant in my early thirties. I only get a couple a year now.
I wrote to Grace’s CI surgeon, describing Grace’s symptoms and asking him if he thought these could be vestibular migraines. He said yes, but that we should see a neurologist. He was able to recommend someone at Johns Hopkins, but that was far away. So I found someone at Children’s Hospital in DC. We got an appointment with her in the fall.
When I asked about Grace’s CIs and their possible link to this particular type of migraine, and the neurologist said she didn’t have experience or knowledge of CIs, I regretted not taking her to someone who had more experience with implants. But this neurologist did seem to know an awful lot about migraines. Her opinion was that Grace was experiencing typical migraines. She seemed fairly certain that they were not triggered by foods, since if they were, Grace would have a migraine every time she ate a particular thing. She stressed the importance of tracking the frequency of Grace’s migraines, their timing with hormonal cycles, and getting enough sleep, food, and water. Stress, fatigue, dehydration, and hunger, she said, could all trigger a migraine. She gave us a prescription for anti-nausea medication, to be taken along with Tylenol or ibuprofen, as soon as Grace suspected she might be getting a migraine. She said it was really important not to wait until things got bad. It was better to take the medication even if Grace wasn’t certain that whatever she was feeling was a migraine, because there weren’t any side effects, and the medicine would only work if she could get it into her system before she got so nauseous that she threw it up.
It didn’t take long for Grace to feel the need to try her new medication strategy. Twice she felt she might have a migraine coming on, and twice she took the medicine. It worked. Then, a week before Thanksgiving, I picked her up from lacrosse practice and she said she wasn’t feeling well. She took an advil, but didn’t think she needed her anti-nausea meds. She went to bed when we got home, and just before falling asleep, she changed her mind and took a prescription pill. Four hours later, she woke up, dizzy and started throwing up. She was still throwing up twelve hours later. I had to take her to the ER for fluids and iv-administered anti-nausea medicine. It took us 20 minutes to get from the parking garage at Sibley Hospital to the emergency room because she was so weak and dizzy she could hardly walk. We spent three hours there, Grace pale, drained, and feeling like her world was spinning.
I have tried, with no luck, to find journal articles, discussions on medical websites, anything valid ascribing a link between increased likelihood of migraines and cochlear implants. If any substantive research has been conducted and published, I haven’t been able to find it. It’s possible there’s no connection at all. I would LOVE to hear about your migraine experiences, as a CI user or the parent of one. Let’s call it an informal poll. Just click on that little comment button at the bottom of this post.
Grace said to me recently, “Well, if my CIs DO have anything to do with these migraines, it’s a price I’m willing to pay to be able to hear.” She’s a tough one. She plows through every migraine stoically, even with a sense of humor, urging me to go back to bed rather than sit with her while she throws up. Seeing her sitting on that stool in front of the toilet, her head on that toilet paper roll, might be one of the most pathetic scenes I can envision. It is also one more example of why I think she's one of the bravest people I know.