Post-CGRP: My Bad Month
Many of you have read with interest my articles about my second CGRP-antagonist medication clinical trial. I had an even greater difference in my quality of life with this second medication than I did with Amgen334, now named erenumab. Granted, I was not moved up to a higher dose of AMG334 which I think would have increased its effectiveness. For the second study, the dosage would change with every treatment, so there were many ups and downs. The best month was February. The last treatment was in May. What followed in June and July was what my study coordinator H and I were so hoping would not happen: having the drug removed was like running into a brick wall (it was definitely a more gradual decline when I lost AMG334 – maybe its effects are longer lasting).
Ongoing migraine attack
June was busy because my daughters both had roles in the summer musical. I was going to be on set crew, but I was so ill with constant migraine (I had what seemed like one ongoing attack for two weeks) that I was unable to make any rehearsals, so they figured out how to do it without me. On June 21, the night before opening night, I finally had to return to my local emergency room for the first time since January 4. When I took my girls for opening night, I felt out of place, out of sorts and postdrome / brain-foggy and ended up getting them ready to perform and returning home. But, I watched the next night and the night after, and was able to eke out a meaningful experience for myself in the end.
A helpful ER visit
Returning to the emergency room was scary. Other than the one physician who could just not seem to understand why I had to resort to emergency care for chronic pain, Dr. “Black,” I was lately treated gently and kindly by the doctors and nurses. But in the six months I’d been gone, what if that had changed? What if there were new rules in place? I needn’t have worried. It went as well as before, and with my explanations of the end of the medication portion of the clinical trial and dutiful answers about Botox (“had six treatments, only the first worked”) and my neurologist (“yes, I have one; yes, he knows,”) I was hooked up to an IV (with some difficulty) and was even given an extra dose of pain medication when I requested it.
High levels of pain
July began with our family vacation, which really did go well. Right in the middle of the month, our theatre group had a huge, heavily-planned, fancy anniversary party which was extremely successful. The following Monday I could feel some serious aura and prodrome and what I thought was going to be a doozy of a letdown migraine. It continued for a week, tantalizingly seemed to be gone for 24 hours, and then slammed back into place like a boomerang. With this second iteration of the letdown migraine I began to experience very high levels of pain. Without any qualifying, I was able to say that I was at a 9, with no oh but it’s been so long a 6 is more like an 8 now, or with the fatigue and nausea it is a 7, but just THIS IS A NINE OH HELPHELPHELP.
A second ER visit
So on July 25, five weeks after the last ER visit, I went back. At first a nurse and physician’s assistant worked together to kind of give me a hard time, which didn’t really surprise me because it seems I always have more trouble when I am in more visible, body-rocking pain. I am most successful when I am able to be curled up and quiet. If I am shuddering, whimpering, slamming an ice pack into my forehead, it seems I am more likely to be questioned. (Does that look more like addict-in-withdrawal behavior or something? I don’t know. My files are always there to be perused, and they never change, and are read each time.) I had to explain that I can no longer take NSAIDs and that I have a strong violent reaction to Compazine and Reglan, the preferred emergency treatments for migraine. I explained the best I could about the clinical trials. I did receive my needed IV treatment (an opioid medication, Zofran for nausea, and an IV steroid called Decadron) and much kindness after that, and though my pain went from a 9 to a 4 for a blissful hour, it was already back to a 7 by the time John picked me up. I allowed myself to be led out of the hospital. As we pulled back into our garage, I threw up into the basin I was clutching.
Vomiting adding a layer of horror
For me, actual vomiting with migraine is a bit unusual (I am more likely to be terribly nauseous), and a terrible terrible sign. Once it starts, it does not stop. Once it starts, that is when I might hit an actual 10, or a morphed 10 from whatever was last a 10 (since it is “the worst pain you can imagine,” reaching a ten may bump up your entire scale). Vomiting adds a rare, once-per-year layer of horror to a migraine attack. Which is why John said immediately, “Should we just turn around and go back right now?” I couldn’t imagine anything worse. But I also knew going back was inevitable.
I made it, curled up and shaking in bed, for six more hours. I may have gotten some intermittent sleep right after using the phenergan suppository (I was out of Imitrex injections by that time), but I mostly I dry heaved, tried to force myself to drink water, vomited, rocked, and cried. My pain hovered at 9.5, but I knew I was at the top of my pain tolerance because I couldn’t get “into my zone” as John calls it, a kind of meditative dozing-through-pain, and could only rock and shake and whimper and ask John to tap on or rub my forehead when he would stumble up to check on me, clumsy with exhaustion. The girls were sleeping in the living room and I tried to avoid having them hear me or be aware of how sick I was. Zo had been traumatized by an incident where we were stuck at one of her dance events and I began vomiting and couldn’t drive home, so she is much more sensitive to my illness and can become scared. X can take it; she knows it hurts and feels bad about that, but also knows I will be fine.
Return of Dr. “Black”
Finally at 2:00 am I felt the shift that told me it was time to go back to the hospital. I try to avoid going in the middle of the night because that is when Dr. Black typically works, but there was no choice about it this time. I woke John up from the couch, slipped on my shoes, and dragged my purse and blanket and wet dishtowel to the car, never letting go of the basin. At the hospital John said he didn’t feel comfortable even walking me in because he didn’t want the girls to wake up and be scared (they are 8 and 12 and the hospital is half a block away, but waking and finding themselves alone would be a shock for sure). I went through triage again and explained what had happened the best I could and got placed in a room and began to count slowly because just waiting was the hardest thing.
When the slender, soft-spoken doctor shape entered the room and spoke, I was not the least bit surprised that it was Dr. Black. I lowered my washcloth and told him hello and explained what had happened, why I hadn’t been there from January until June, why I was back the same / next day. I know what I looked like: a hollowed-out, pale-and-red shell of a person. His voice was different than I remembered. He asked if I thought I needed to be scanned and I said no. I said, knowing what he needed to ask, “This is a typical worst-of-the-worst migraine for me. It does not feel different.” He listened to my heart and lungs and as I lay down he actually pressed my foot gently through the blanket. He told me he was going to get the same medicines I’d had earlier except for the Decadron, which I couldn’t have more of yet, and he would also add IV Tylenol with the opioid and we would see what happened.
Then: “If these don’t work though, I think we should consider admitting you.”
Tears of relief
I don’t know what response he expected, but he seemed surprised at my tears of relief and immediate affirmative response. I used to need to be admitted approximately once per yearly for intractable migraine, but rules had changed and it had been since 2012 since my last hospitalization. I counted silently and waited for the roll of the IV cart, figuring it would take twenty minutes. I wondered if my last conversation with Dr. Black (Why are you here? He asked. I just couldn’t handle the pain anymore, I answered) had actually had an impact on him.
There were more ups and downs. The medicines lowered my pain from a 10 to an 8, so I told the very nice PA working with Dr. Black that I thought maybe being admitted would be a good idea, and she seemed to agree. He came in and said he felt like he couldn’t admit me because I’d shown slight improvement, but that he wanted to try to make me more comfortable and he gave me more medicine, which really did almost nothing. I told the PA I wanted to go to the bathroom; while there I vomited again, green liquid this time. (Time for green! I said in my head.) I handed her the half-full toxic basin. She went to talk to Dr. Black. She came back in the room. “He says he thinks we should admit you.”
Reaching zero level pain
It is now Sunday, July 30. I was admitted at 5 am Thursday morning and released at 5 pm Friday. I could write a book, really, on each inpatient hospitalization. This one was markedly different because for the first time, my local hospital no longer had access to DHE. When breaking up an intractable migraine, I like to think of the migraine as a tree. Pain medicine (whether opioid or NSAID type) knocks the leaves off. Anti-nausea medicine slowly saws off branches. DHE is always what would be used to attack the roots of the pain tree from the bottom up. Takes a while to work and is usually unpleasant, but eventually effective. Since there was no DHE available (I know large teaching hospitals can still get it, as many of my migraine friends across the country get occasional infusions, but my personal prescription dried up long ago), more steroids and subcutaneous Imitrex were used in its place. My pain touched zero at 10 am Friday, after I had been told by that morning’s nurse that perhaps zero wasn’t a realistic goal. (What number is acceptable to you? “Zero.” Oh! Well. We’d all like to be at zero, but… that may not be possible.) My overnight nurse, however, had been an absolute superhuman angel, and before writing this article I sent an email to the hospital’s CEO to tell him so.
I feel very lucky that I have access to medical care that is appropriate for my needs. I feel very lucky that I had months and months of two CGRP antagonist medications, changing my life from 2014 through 2017. While waiting for the approval of erenumab or another clinical trial I can slip into, I admit to being a little afraid of what is going to come next.
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