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Is This What Wellness Feels Like?

Dear Loved One,

I think I told you that I’ve been trying the new drugs made for migraine. They’re called CGRPs. Researchers have basically discovered that people with migraine produce more of a certain type of protein than other people and these drugs block that protein. Three different drug companies came out all that once with these blockers (Aimovig, Emgality, and Ajovy) given by monthly injection. While they have the same aim, they don’t work for everyone in the same way. I’ve tried two of the three and am experiencing windows of wellness for the first time in years.

Newfound energy

I started with Aimovig which did little to nothing for me, but I’m having some success with Emgality. I’m experiencing my first taste of periods of wellness in over a decade. Like, total clarity from pain. And I honestly forgot what it felt like. Wild. It’s hard to describe how glorious it is. When I experience times with mild to no pain I am actually giddy with excitement and feel like adrenaline is coursing through my veins. It’s as if the energy that I’m usually using to fend off moderate-to-severe pain is now freed up and encircling me, and I’m honestly not sure what to do with myself.

Fragile optimism

Of course part of the reason I don’t know what to do with myself is that I have no idea whether or not this moment of wellness is fleeting. I’m afraid to announce anything about this improvement to the world because when I have let friends or family know about minor improvements in the past, it’s always ended up being premature. It’s almost as if I jinxed myself by saying it out loud. One way or another, any improvement I’ve experienced in the past has been temporary.

Major improvement

That said, I don’t recall ever feeling this level of freedom from pain. To be clear, the improvement is not comprehensive.  In the three months since I started the therapy, I’ve probably had about 15 days that involved notable periods of wellness  (either 3-5 hours of feeling pain-free or, if the pain was present, it was low and was not exacerbated by activity). To a person not living with chronic pain, that might not seem like much.  But I generally have a constant moderate-to-severe pain level, which is exacerbated by any activity. So this is a major improvement.

Appreciation and gratitude

It’s been so wonderful to partake in life these past months and wake up the next morning with energy still in the tank. Is this how everyone feels? I expect maybe so but…perhaps without this level of appreciation?

I wish everyone could wake up with this level of gratitude for simply feeling no pain; for having their health. The joy I feel from having no pain is truly overwhelming. Even if I’m unwell for days afterward, the experience of wellness helps me fly through the tough times. It’s such a lift.

Thank you for listening and for supporting me through this journey. I know you can understand the trepidation, the fear, and the joy I’m feeling, all wrapped up in one. Your nonjudgmental understanding has helped more than you’ll ever know.

-Holly

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

  • gailkirkwood
    2 weeks ago

    Good news is that in one year the medication seems even more effective over time. Used Ajovy initially in drug study with some side effects of itching but remarkable reduction of headaches. After study, used Aimovig for one month and it was as if i had returned to total misery of pre drug study status.
    Switched to Emgality 9 months ago without side effect of itching and constant throat tickling. Have occasional brief periods where it seems as if I am going to get a bad headache but generally it passes.

  • Holly Baddour moderator author
    2 weeks ago

    Hmm- fascinating to hear of your side effects. I had some itching too, but didn’t think of equating it to these meds. Also some throat stuff, but again didn’t think to connect the two. Thank you for sharing so we can learn from one another. And, yes, I’ve heard others speak about the medication increasing in efficacy over time. Terrific to hear this. Please stay in touch about how things are going for you.

  • lisasueq
    3 weeks ago

    I, too, am taking Emgality. I’m finishing month 2. Having incredible results. General headaches cut in half. Migraines cut in half. Sleeping better. More energy and stamina. Able to exercise. I truly feel
    Like a new person. I’ve lost 12 lbs just from eating better and exercising. But like you, I worry if this will be short lived or if it will plateau or just stop working. When you’ve had a chronic condition for a long time; pessimism is your Go-To! I’m holding out hope for you and I and so many others with this debilitating condition. For now, it’s Emgality for the Win!

  • Holly Baddour moderator author
    3 weeks ago

    Hey @lisasueq– This makes me SO happy to hear. I’m glad you took the time to share with us about how emgality is impacting you so positively as well. It’s so good it’s terrifying. I know exactly what you mean. Having a deduction by half is incredible. Wow.

    I’m glad you mentioned the general headaches too. Because for us chronic migraineurs it’s not just about the migraines- it’s about the constant head and other pain/symptoms between the attacks. And the fact that Emgality is addressing that– well, it’s wildly phenomenal. I’ve had success with other treatments that have addressed the attacks themselves, but never the in-between constant pain. And to feel this kind of clarity from pain (even if it’s just for periods of time throughout the day) is just hard to explain to those who don’t live with chronic pain.

    I totally know what you mean about bracing for the downfall. But I suppose, even if that happens- or especially if it happens- we should REALLY enjoy this window of wellness as much as humanly possible.

    So, I join you in celebrating this time- and I’m so glad you’re experiencing it as well. My fingers are crossed until they are numb that it sticks around for all of us.

    So glad you’re a part of our community! Please stay in touch and let us know how things continue for you.

  • Nikki23
    4 weeks ago

    Hi Holly, I read your log and related to everything you said. I have suffered for 43 years, I am now 52. The injections have given me so much freedom. I do not know what to do with myself lol… It’s amazing.
    I am hounded by fear though as thoughts of loosing this new found wellness.
    I am just so thankful for any relief. May it continue for all of us 🙂
    I do not care about the side-effects or possible long term consequences (if there are any) – I am, like you, so thankful for now.
    You, others and I who are risking taking these injections are going to help so many other people if all is favourable.
    I have taken the injections for 9 months and feel fine. There are a few side-effects but nothing like being disabled with crippling migraine.
    I am quietly very optimistic and very pessimistic – its a very strange place to be. I need to learn to live differently because my mind and body is clear for brain fog/pain etc. the first time in years. Tell me about being hyper – I cant stop running and doing things. I talk constantly – I’m mega organised. My ironing and housework is done. I GET BORED… never had that before…
    May it long continue 🙂 I am happy…

  • Holly Baddour moderator author
    3 weeks ago

    Hey @nikki23 – thanks so much for sharing. You bring up so many great points worthy of further exploration.

    The piece about waiting for the other shoe to drop to the point that it’s almost difficult at times to enjoy wellness because we are just waiting for it to disappear (that’s big and so normal and based in past experience).

    And then specifically the one that I actually didn’t explore in this article but that is very worthy of further discussion and exploration: that of our being willing guinea pigs because- what’s the alternative? A continued life with the lights off, curtains drawn, in the fetal position, watching life go by from the sidelines? Of course it’s nightmarish to consider what potential repercussions we may experience due to being the first ones to take these medications long-term. Still, again, what choice to we have?

    Well, the answer is, we absolutely have a choice. Many people choose not to experiment in this way with new medications. And that is of course their right. It can feel like (and I suppose it ultimately is) a gamble. It has to be a personal decision and one with which we each feel comfortable enough to proceed.

    I just wanted to thank you for articulating this piece of things because it is a major part of the dynamic that surrounds these medications.

    I’m so glad to hear your success has continued for 9 months. Your giddiness pops off the page and I feel it from and for you. I’ve been staying up late at night and waking up early just doing and doing things because I can. It’s almost like I’m waking up from a deep slumber and no longer want to sleep. I’ve wasted enough of my life doing that. Too much to catch up upon!

    I’m thinking of you and with you in this. Please stay in touch about how you are.

  • Crystal.Harper
    3 weeks ago

    I’m so happy for you and your relief from migraine and I love your new found love for life and even the everyday small things that most take for granted (like ironing…). Wishing you many more days like this ahead and thank you so much for sharing your testimony!

  • mammapeaches (Susan McManus)
    4 weeks ago

    Holly,

    That is exactly my story!! Nothing with Aimovig, but seeing good results with Emgality.

    My family says I act hyper now when I feel good. I guess it’s been so long, they don’t remember the old, pain free me. I love the way you described how that extra energy manifests itself! I will definitely share with the fam!!

    Thank you for this story ❤️

    Susan

  • Crystal.Harper
    3 weeks ago

    I just wanted to say how happy I am for you that you found some relief! Hope you continue to enjoy that extra energy and I’ll be rooting for you and for many more days of relief ahead!

  • Holly Baddour moderator author
    4 weeks ago

    Hi @susanmcmanus– so glad to hear this piece resonated with you – especially because it’s a positive one. Let’s hope, for the both of us, that the Emgality continues to provide relief and a return to wellness. I’m thinking of you and so glad you chimed in! Please stay in touch.

  • glassmind
    1 month ago

    So glad to read of your successes in treatment. That feeling of waking up well and with energy is indeed wonderful. May the therapy continue to lead to more wellness for you.

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