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My Experience So Far With the New Study

My Experience So Far With the New Study

I wrote recently about how I was lucky enough to be participating in a new clinical trial for a CGRP antagonist medication. It’s very different from Aimovig, the one that was just approved, in that it is oral (a tiny pill) and an acute medication, to take after an attack has begun.

Eager for a new migraine treatment option

The first thirty days of the new study, I entered my migraine information into an electronic diary to set up a baseline. After that month, I received the bottle of pills and had more testing done (so far I have had an ECG done and blood taken at every appointment). I was very excited to receive the pills, because with my new job, my attacks had increased so much that I was barely making it through my shifts. I was eager to have an alternative choice to treat the pain.

Feeling relief after the first pill

H said that my liver enzyme results needed to come back normal one more time before I started the pills, and it was difficult to wait. After H notified me that all was well, the first pill I took (so tiny!) I definitely felt, and it definitely worked. The sensation in my body was like that of an Imitrex injection, and even after the migraine symptoms were long gone I felt like my brain was being cushioned, or protected, for an additional 24 hours. It did help all aspects of the attack, and I didn’t feel the need to take anything else. During the study, I’m allowed to take acetaminophen (tylenol), and anti-nausea medication, along with a few other types. Not triptans, opioids, or ergot derivatives though.

Tracking every pill taken

For the first eight weeks of the study, I needed to travel up to the facility every two weeks, which is two and a half hours of driving. I received thirty pills, but am only supposed to be getting 9-14 migraine attacks per month, so it has sometimes been tricky to match the pills I take to the diary entries when my entire life I have taken pills without thinking. And yes, I definitely realize that statement doesn’t make me sound very careful. But it’s the truth. So pausing to make sure I am recording and thinking about each medicine I need to take is a good thing. If I take anything else for acute migraine purposes, I have a sheet on which I write it down.

Study medication in the second month

And how is this version of CGRP antagonist medication actually working, since that first dose? Initially, I thought it was great. The second thirty day period I had a lot of problems. Nearly daily migraine, lots of fatigue, some depression. But as John and I headed up to appointment last week, we talked about how I hadn’t even considered going to the emergency room.

While sometimes the study medication doesn’t work as fast as I feel Imitrex would, and occasionally doesn’t seem to work at all, the pain also doesn’t get ahead of itself, becoming unbearable. It simmers at a low point. I think “simmering” describes June perfectly. This would be the sort of unnoticeable improvement I’ve discussed before regarding my other trials. Did I feel exhausted and sick often? Yes. Was it from migraine? Yes. But was I in a lot of constant pain? Not really. I did manage to attend nearly all of tech week and performances for my daughters’ musical, unlike last year, and since receiving the medication on April 24 I have missed only two shifts due to migraine (I work 20 days per month, so that is 2 shifts out of 45 as of this writing). Not too bad.

Transited from one clinical trial to another

Back in our first phone call about this trial, H and I discussed what would happen if Aimovig were to be released. I knew it as AMG334, and it was the first study medication I tried on both a double-blind and an open-label basis. I was only on 70 mg, the lower dose, and its effects were not dramatic, but I did have improvement. She said I could drop out of the new study at any time, whether to try Aimovig or not. I thought I would wait and see. Well, obviously it was released. And H learned about a month ago that I can have it prescribed and stay in the study! We were both shocked and overjoyed. When I see my new neurologist in July, I will ask for it, and of course, keep you all updated about what happens.

Study drug two pills

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


  • tzapp
    6 months ago

    I was on Aimovig for three month with zero help. Dr. changed me to Emgality. First time in six years there was a noticeable difference in my pain level. From a 10 down to a 7-8 but takes a week to kick in then lasts 10-11 days. By day 12 pain creeps back. Last two weeks of month back to a level 10 in excruciating pain and I just take pain meds and stay inside in the dark. Asked my Dr. about trying Ajovy. She said that rep came to drop off info but left no samples and that she doubted it would help me, for me to go to a headache clinic. This has bee SIX! YEARS!!! Initially she said that each of the new CGRP drugs were a little different and addressed different synapsis in brain so I had a few possibilities. Thoughts?? Please respond. Please.

  • Theresa
    6 months ago

    Aimovig has side effects like your hair falling out. I’m not convinced it’s so good.

  • lucinda2.0
    9 months ago

    I started using Egality in January and used it in February also. I’ve had significant relief from migraine frequency, and plan to stay on it.

  • Tom Picerno moderator
    9 months ago

    lucinda2.0 It’s great to hear your found a treatment that is providing significant relief! I have been seeing on the forums that Emgality is causing weight gain as a side effect. I was wondering if you had noticed anything like that in your experience?

  • Joanna Bodner moderator
    9 months ago

    That is fantastic that you have been experiencing such a decrease! Have you by chance explored our forum page where a few others have shared their journey with Emgality? If you are interested, you can view it here. Best of luck to you! May the good results continue.

  • wappaw
    11 months ago

    I have been on AIMOVIG for 3 months. I can definitely say there is a difference in my migraines. The pain on the right side of my head has decreased, but I am much more aware of the pain in my right side shoulder and neck, up to where the muscle anchors on my skull. I know it is still a migraine as the Sumatriptan still knocks out the pain within one hour. My Headache Specialist stated he would consider switching to one of the newer meds after six months.

  • Migraineur223
    1 year ago

    What was the name of the trial? I did a one (sublingual) pill study for remigipant. I strongly believe I got the placebo, for I only thought I felt better until I stopped thinking about it and the pain came flooding back. The placebo effect is powerful though!

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hi Migraineur223! I’m sorry it took me so long to reply. The study was Biohaven, and it wasn’t a sublingual medication, it was a pill. I have read about the sublingual med though, and I think that one sounds more promising! Thank you for being here ~elizabeth

  • onehsancare
    1 year ago

    So envious! STILL waiting for Aimovig to have all of my paperwork, first faxed on June 22, refaxed July 19 after learning of missing page, refaxed again today (August 1). The thought of being able to have BOTH Aimovig and your magic pill sounds amazing!

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    onehsancare, I hope you have been able to start Aimovig by now! Please let us know! I thought my scenario sounded amazing too, but it was too good to be true. Biohaven decided not to allow it. I dropped out of the study to try Aimovig, which wasn’t successful, so after 3 months I switched to Ajovy, which is much better.

  • bbergs2802
    1 year ago

    I’m still waiting to see if my work comp insurance will cover the Aimovig – my neurologist said I meet all the criteria – but there was about a 6 week waiting period for his patients to start the medication! I’m hoping I’ll get the approval and can try it – I’ve been on triptans for many years and it seems like the side effects bother me more and the medicine isn’t working as well (or my migraines have gotten worse)!

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    bbergs2802, I hope you have your Aimovig by now! Please let us know! Take care ~elizabeth

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