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CGRP Inhibitors and Holding on to Hope

The balance of realistic expectations versus hope is a challenge that doggedly trails so many of us who live with migraine.

Hope in the face of challenge

Hopefully, you’ve had a chance to read my last article, “CGRP Inhibitors and Realistic Expectations.” As with any other chronic disease, having realistic expectations for living with migraine is SO important. However, the question I hear so often, and which I also keep asking, is this: How can I possibly keep hope alive in the face of an unpredictable disease, failed medications, stigma, and what often seems like insurmountable challenges dealing with insurance? How can we hold on to hope while bearing in mind realistic expectations? Is this even possible? It seems a strange thing to say, but now more than ever this is an exciting time if you live with migraine. I realize that the words “excitement” and “migraine” aren’t often used in the same sentence! Hopefully, the thoughts below will explain why.

Five reasons for hope

  1. Surge of new research: There is a new surge of research focused on understanding, treating, and preventing migraine. That research means hope for the future and many new options down the road!
  2. Physician training: There are increasing numbers of certified headache specialists. There is also a push to make instruction on headache disorders a mandatory part of the medical school curriculum. This will hopefully help improve timely and effective treatment of migraine early on.
  3. New medications: 2018 saw FDA approval of three new migraine medications (Aimovig, Ajovy, Emgality). We expect to see another one or two FDA approved by the end of 2019 (Lasmiditan, Ubrogepant), and hopefully three more in 2020 (Eptinezumab, Rimegepant, Atogepant). There is even a new nasal spray in phase 2/3 clinical trials (Vazegepant). If that sounds like a lot of new options to you, then it does to me too!
  4. Interest in neuromodulators: There is increasing interest in the use of noninvasive devices both to prevent and abort migraine attacks. There are three already on the market (sTMS, Cefaly, GammaCore), one more which was recently FDA approved and expected to be available by the end of 2019 (Nerivio Migra), and a fifth following close behind (Neurolief). Having a multi-modal management approach can help improve outcomes. In addition, while insurance is often more challenging with medical devices than medications or invasive surgery, there is movement on that front also.
  5. Clinical pipeline: There are many more options at various stages of the pipeline. These range from pre-clinical research through different phases of clinical trials. The options include research and study on PACAP38/PAC1, Psilocybin, Cannabidiol, NOS inhibitors, Delta opioid receptor agonists, Kappa opioid receptor antagonists, NK1 receptor antagonists, and an exploration of dural stimulation. If there is nothing that helps you right now, there is still hope. If even those in the immediate future are ineffective or intolerable, there is STILL hope!

Information feeds hope

Taking the step towards educating ourselves as much as we can about the disease we live with feeds hope! Staying on the cutting edge of developments feeds hope! There are so many potential future options now and in the near future. Options that are bringing much-needed change to the migraine community. If ever there was a time to actually have hope for migraine…this would be it!

Realistically I have to face that maybe there won’t be any breakthrough that transforms my own life after decades of living with migraine. However, my hopes are high for my children and grandchildren. And who knows, maybe, just maybe, I’ll have the opportunity to experience a “new normal” too! A new normal that isn’t lived around avoiding all triggers, fear of the next “big one”, and reluctance to face tomorrow. Maybe, just maybe, you will also have the opportunity to experience a “new normal” and a brighter future. I’m choosing to hold on to hope! What about you?

Do you have a hard time holding on to hope? What is the most exciting development that you know of for migraine disease?

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

  • sarahblankenship
    2 months ago

    I tried Amovig and it helped a bit. I managed to go to work almost every day, but was still having to miss at least one day a week. Then I lost my job and my insurance. Now I am not working, other than a couple hours here and there cleaning for a relative. I’m spending most of my time in bed with awful migraines and missing my whole life. My boyfriend is working pretty much all his time working two full time jobs, because we bought a house the same week I lost my job. I can’t stay well long enough to even make an honest effort to find another job, although I have already been through most of the jobs in the area that fit into my degree. I’m usually able to find humor or some way to deal and push through, make it work somehow, but I am really struggling right now. I am not able to find much hope in the moment. These advances are amazing and I hope they help people. I am still uninsured and not able to change that for the foreseeable future. Maybe my daughters, all of whom suffer from migraines as well, will benefit from all that’s coming along.

  • DizzyLizzy7
    2 months ago

    First and only shot of Ajovy sent me to ER with severe allergic reaction. Is it worth trying any of the other CGRP’s?

    Have been trying for going on 2 years to get appoinment with a migraine specialist. Just turned down again because “not taking new patients”. Have not yet found one within a 2 hrs drive that is taking new patients. Have recently stopped driving due to migraine symptoms, so , not feeling the hope.

  • Peggy Artman moderator
    2 months ago

    DizzyLizzy7,
    That’s awful to have to go to the ER after just one dose of Ajovy! Be sure to report this to your doctor. Aimovig works a little different from the 2 other medications. It’s best to check with your doctor on how to proceed next. I know there is a shortage of migraine specialists, but there are some good neurologists that work with migraine patients. If you want advice, you can create a post here asking for references in your area. Let us know if have more questions or comments.
    Peggy (Migraine.com Team)

  • libra71
    3 months ago

    I have been one of the lucky few who for past six months have been on aimovig and apart some nausea and the odd constipation have been doing very well, thank god ..Its been over 15 years since since I started getting severe migraines more if you count the less severe, the less debilitating ones but thankfully I see some light at the end and some hope for some sort of normality. The only downer I will say say to anybody who is starting this the first few months are hard if you can past them and persist,it will be worth it, I have spoken to a few people through and they gave up too soon because of the nauseous and exhaustion but it was worth it all. Yes there was some weight loss due to lack of appetite but you get past all that when you you feel your headaches improving. So long story short I’m due my 7th two shots shortly and my migraines are almost nil.To me it’s like I’ve been a second shot at life, not too late ,I’m only in late 40’s so plenty life in the gal yet. Good luck to everybody in their trials and in life and general xx

  • Peggy Artman moderator
    2 months ago

    libra71,
    Thanks so much for sharing this good news! From what I have heard, some people respond amazingly well to the CRGP’s, some have reported moderate success, and some have reported no success. I am happy for you that you have found something helpful.
    Peggy (Migraine.com Team)

  • kellikens
    3 months ago

    I tried Aimovig for 5 months or so. Sadly, it didn’t help. Neither did Botox. Will be starting Ajovy in the new year.

    I was told the CGRPs have different ingredients and that Ajovy might work better for me. I guess time will tell…

  • Peggy Artman moderator
    2 months ago

    Kelilikens
    I’m sorry that Aimovig was not helpful you, but there is still hope. Emgality works differently in your body. Your doctor can explain this if it is prescribed. Also, it can take a while for Botox to take effect. It took probably a year to notice fewer migraine attacks.
    Peggy (Migraine.com Team)

  • 26najch
    3 months ago

    Re:neuromodulators

    I have been told that they are approved by the FDA but not covered by Medicare nor a number of private insurers. Very $$$,too. I called Medicare to find out why. Useless conversation. Had no idea what I was talking about and couldn’t find it in their system. Wanted a code number.

    Re: CGRPs-So if one brand didn’t help, I should try another? I assumed they were very similar. Thanks for the comment-I’ll check with my doctor.

  • Peggy Artman moderator
    2 months ago

    26najch,
    Hi, thanks for sharing your journey. I have private insurance and it didn’t pay for any of the neuromodulators. I don’t know why they are not covered. I love my Cefaly, but I purchased it while the company had a sale.

    As for CRGP’s, Aimovig works differently than Emgality and Ajovy. It’s best to ask your doctor about which one to try first. Wishing you a low pain day ~ Peggy (Migraine.com Team)

  • butterflies
    3 months ago

    With the last CGRP I tried, (Emgality), I finally began experiencing relief. The migraines went from 15/month to 12 to 9. In August I only had 4! Then on August 19, I was involved in an auto accident where a man T-boned and totaled my car. Gratefully, I walked away, but I’m back to chronic migraine.

  • Peggy Artman moderator
    2 months ago

    butterflies,
    Thank you for sharing your story. That must be so disappointing that a car accident changed your migraine patterns. You could have injuries from the accident that need a different type of treatment.
    Peggy (Migraine.com Team)

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