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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Deb
    2 years ago

    How do I get into a clinical trial for acCGRP drug?

  • cathyn
    2 years ago

    Deb,

    search clinicaltrials.gov, if you put in “chronic migraine” and “cgrp” you should get a list of trials which will also list sites where they are going on. Good luck!

  • cathyn
    2 years ago

    I will be starting a Phase III clinical trial of Amgen’s infusion CGRP drug in March, which is open label so I know I will be getting the drug. I’m excited and scared at the same time. I appreciate you sharing your experience, Elizabeth.
    Due to the limited timing of the study, I will be receiving the first dose two days before I leave for a vacation. Did you experience any initial unpleasant side effects? From what I’ve read, most people are fine, but the possibility is causing me some anxiousness.
    I’d love to hear more from anyone who’s been in a trial.

  • cathyn
    2 years ago

    Thanks Elizabeth> Unfortunately, the open label study filled so quickly the clinic I was going to go to was shut out — first time they said that’s ever happened. Very disappointed, but I have the option to go in a double blind placebo study when I get back from my vacation.
    Thank you for letting me know there are no side effects. Luckily, I improve greatly on vacation as I am very weather sensitive and the calm stable weather of the south greatly agrees with me! I appreciate you sharing your experience and wish ALL of us relief and healing.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Cathyn. Absolutely no side effects, and the drug works quickly. You should be fine, and I hope you’re able to have a wonderful vacation! Maybe you will even get some relief, depending on the dose they give you (I didn’t have much luck in my Amgen study, but my dose was small during the open label). Stay in touch!

  • Heike
    2 years ago

    Dear all,

    I am a fellow migraineur from Hamburg in Germany and hope you will excuse my mistakes while writing in English. I joined this community because ours over here are not so “well run” and in my opinion quite dogmatic some times.

    I am 53 years old, happily married, a mother of a great 21-year-old son and I work part time as a freelance travel journalist.

    I suffer from migraines for 31 years now. Over time I developed a MOH frequently due to a lack of a working prophylaxis. I tried a lot, including Botox. The only preventive medication that ever worked for a while was the antidepressant mirtazapine.

    Almost three years ago my migraines turned from frequent episodic to chronic with 30 migraine days per month which I always treated successfully with triptans. Nothing else would work. Thank God I never had to visit the ER, but a couple of times I made a “drug holiday” in hospital.

    Last summer I was lucky enough to start to participate in a clinical trial for the CGRP antagonist Galcanezumab by Eli Lilly. When I started to get the “real stuff” in August I had a triptan induced daily migraine which required up to two doses of triptans per day which summed up to 50 per month.

    In the first month I experienced a prompt improvement in terms of exended effect of triptans which lead to a first full
    day without migraine, or, in other words, with a triptan working for 34 hours.

    The improvements developed in following months to 8 drug-
    free days in October and to sensational 12 drug-free days in November. Over all the triptans worked far better than before and I was able to cut down the amount of triptans to 21. It even worked during menstruation which I still have to deal with and which has always been my most horrible trigger.

    What I find especially remarkable is the fact that the study
    medication worked so well in me even without a prior drug holiday which is essential in many expert’s opinion.

    But in December I had to face the shocking experience that the medication dramatically lost it’s effectiveness. Only two drug-free days on the 6th and 9th and every day since then.

    Unfortunately I can’t get a helpful response from my study nurse or doctor since they simply collect and forward my data. Participating in a clinical trial doesn’t mean to get a comprehensive therapy including psychological support or insight in results of other participants.

    So I don’t get an answer why the medication seems to stop working in me almost suddenly. My read is my body developed antibodies against the drug which is mentioned as a possible complication in the documents I got about the study.

    I wish I could talk to somebody else with the same experience or somebody who is involved otherwise in these clinical trials to get me an idea how to proceed and if there is any more hope. For example if the drug might work again if taken after a pause or if another formula like the Alder drug administered once a quarter by infusion could still be a promising option for me.

    Any comments and suggestions are most welcome.

    Wishing you all a peaceful and merry Christmas!

    Heike

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hello Heike,

    I’m so sorry the drug stopped working for you. I understand exactly what you mean about the study coordinators just collecting your data and not treating you as a patient.

    However, here I have heard that the medication doesn’t tend to stop working in most patients like it unfortunately did for you. My study nurse has said she sees that the effects tend to be cumulative, and that even after the treatment is stopped, the positive effects continue for quite some time and there is hope that some of the effects may be permanent. Because I never know what dose I am receiving (and sometimes I may get the placebo) it is hard to know exactly how successful my treatment with it has been, but I am very hopeful even though I’m still chronic. Since beginning the studies (I’ve been in two now) I have become much, much more active in my community and though I’m still not working a “real job” I have two for which I write from home. I am able to participate in my daughters’ activities and am even on the local youth theatre advisory board. I was in a play and didn’t miss a single rehearsal. While there is no way of knowing whether all that improvement is the result of the drug, it certainly gives me hope that the CGRP antagonists could change our lives.

    I am so, so sorry that your success did not last. I too would like to know how you’re doing, and I will be continuing to update readers about my experience as I complete the trial. Take care <3

  • cathyn
    2 years ago

    How are you now, Heike? I’d love to hear more. Hope you are improving.

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