CGRP Treatment #5
The day of the appointment for my fifth treatment in the CGRP study, I had a migraine on the way to the facility that felt different. I often wake with headaches, but they are usually fairly easy to treat. Some even begin to fade as soon as I sit up, disappearing completely by the time I am swallowing my morning pills with Cherry Coke. If not, over the counter pain medicine is sometimes enough, and if I have to take Imitrex or another prescription drug it tends to work quickly and I'm able to go about my day. Sometimes, the morning headache is a killer full-blown migraine, and my day is pretty much shot. This headache didn't seem to fit into either of those categories. It was mild when I woke and did fade with Excedrin “Tension Headache” (acetaminophen with caffeine; the usual formula also has aspirin, which I can no longer take), but I still felt shadow pain as I took X to the middle school and Zo to her elementary school 45 minutes later.
At my last treatment appointment, I had asked H if I could shift to Mondays or Fridays, when John doesn't teach, so that he would be able to accompany me. I was very glad I had done that, because by the time we were ready to leave at 9:30 the pain was getting worse and I was feeling the creep of nausea. I took an Imitrex and Zofran and filled a water bottle with Gatorade Frost Glacier Freeze, the only flavor I've found that doesn't trigger a headache. John and I discussed whether I should take anything else, and based on the odd way the migraine was behaving we decided I should take a pain pill also. That, certainly, would do it, we thought. We departed for the facility with John driving.
I had ordered a new pair of migraine glasses because I had misplaced my outdoor TheraSpecs (I'm still hoping they will turn up) and I was attracted by an AxonOptics contest to win a pair with their slick new frame style. I entered, of course, but since I needed a new pair anyway and was unlikely to win I asked my parents for an early Christmas present. Both TheraSpecs and AxonOptics use FL-41 tinted lenses and are great companies with equally great products and excellent customer service, at least in my experience with them. Unfortunately the new glasses were due to arrive the day after my appointment, so as we were driving all I had were my indoor TheraSpecs. Those work wonderfully well and are sometimes enough even outside, but it was a particularly bright day. My pain slowly increased, each increment making me more and more nervous, as I had very stupidly assumed I wouldn't need more medication and did not bring any.
I began to shift uncomfortably in my seat, my hand continuously rubbing the right side of my forehead and neck. John noticed and asked with surprise if my headache was still getting worse. I told him it was, and added, “You know, maybe I slept weird, because my neck is really sore too.” My neck is usually only involved in my worst migraines, unless I've done something to it. He reached over and squeezed my neck hard, and said it definitely felt tight. Panic fluttered in my chest. “John, we should have brought more meds. What were we thinking?”
I was getting to the stage where it was hard to sit still. I thought about the pain scale, and how a 5 at home in bed might feel like a 9 when you're in the car without meds and knowing you won't return home for four hours. The one thing I kept hanging on to as we got closer was the amazing fact that CGRP injections (in both the former study and this one) had seemed to work immediately for pain, even though the drug is meant to be prophylactic. I held on to that hope.
We arrived and registered, checking the “research” box on the sign in sheet, and accepted our Visitor stickers. We took advantage of the separate quiet waiting room, which has dim lighting and is away from the TV and the windows, with a sign about using low voices. I love that this facility cares so much about our comfort. It serves only migraine and headache patients, so it makes sense, but I am not used to an environment designed specifically for my needs. I sat and massaged my head and neck and jiggled my legs up and down anxiously until H came out to retrieve us. As we approached her, she looked closely at my face and said, “Do you have one right now?” I nodded as she greeted John and told us that we needed to stop at the lab for blood work and a urinalysis. Soon, we were back in her small office where she lowered and closed the blinds. She also went to get me an ice pack and ice water, and completed the suicidality survey on the tablet for me while I gave her my answers. “Let's get you this medicine,” she said.
She injected me in the arm, and I felt the now-familiar burning of the medicine which was actually a welcome distraction from my pounding skull. When it was done, the three of us chatted about the election and John's new job and after a few minutes I felt a tingling rush. I let out a sigh of relief as the solid block of pain above and behind my right eye seemed to dissolve; in my mind's eye I saw a sort of digital representation of this, like Minecraft blocks disassembling and rising weightlessly into the air. My neck felt almost numb. “It's gone,” I laughed and told them, interrupting John's story.
Are you serious?” H looked delighted. “Already?”
We talked a bit longer, because the study requires the patient to stay for 45 minutes, but I usually leave sooner with the promise to text H if I notice any new side effects. I closed my eyes briefly and focused on the sensations; my brain felt like it was being cushioned by a cotton cloud, or a thick gel. I did keep in mind that the pain might come back; I had noticed before that while the CGRP injection provided immediate relief, the pain would return about an hour later, though at a much lesser intensity.
John and I drove home, much more cheerful, music playing. My headache did return, but it resettled differently, which I remembered from previous treatments. It was milder, and had become double-sided. More interestingly, the pain in my neck also was back and double-sided, which disproved the notion that I had slept on it funny, triggering the migraine. If the neck pain also resettled on both sides, it was actually part of the migraine, which was an important insight.
Once again, the CGRP treatment worked to eliminate the pain I had at the time of the injection, and seemed to ease some of the other migraine symptoms too. Even though the headache did return, it was much more manageable. I believe that the CGRP medicines in clinical trials right now are going to be far more beneficial than we've even imagined.
Have you shared your migraine story with us yet?