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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

  • AZReynolds
    2 weeks ago

    Sorry to post again, but I have a question. Those of you who are helped by these new drugs, do you get migraines from perfumes and the new strong detergents still?

  • AZReynolds
    2 weeks ago

    Holly, That’s such wonderful news! I’m still jumping through the insurance company hoops to try and qualify, but in all honesty, I doubt I can even afford it if I ever qualify. Also, the beta blockers have helped cut my migraines down from 25 per month to only 9-10, so they may never let me try the new anti-CGRP meds. But even still, my pain will never be gone due to all the other problems (FMS, arthritis in spine and SI joints, scoliosis, bursitis, IBS, and now bone spurs in both shoulders), so migraines are only a small part. I’m struggling right now with keeping my spirit “up” and positive in spite of the pain. I think of you often as I fight the depression of daily chronic all over all consuming pain. (Boy, they need an acronym for that! DCAOACP. ) And I reread your postings from time to time to help me remember to find my “joy shots”, but this year’s been hard with breaking my back and the surgery. Now with the possibility of a torn rotator cuff and a second fall injuring my hips again, I am sliding down. It seems you have a blog or something like that we can sign up for? Your pearls of wisdom might be just what I need!

  • Holly Harding Baddour moderator author
    2 weeks ago

    Hi dear AZ! So great to hear from you again. I’m grateful for your kind words and yet sorry to hear of the comprehensive challenges you are facing. I know it’s hard to find a bright side when we are dealing with physical, neurological, and emotional pain. There are times that it can just feel brutal, no doubt. And it sounds like you’ve had a very rough year. I am with you on that- I’ve had a tough one as well- and am doing my best to find that bright side in the midst of a life storm.

    It really can help to reach out, as you have just done, to connect with other like-minded individuals who are facing similar challenges- those who find themselves in the same boats. It really can lighten the load to SHARE that load with others and remember that we’re not alone in this. I know we both have a number of challenges on our plates, but migraine is so very isolating- and remembering that we’re not the only ones dealing with it, can do wonders. In the same way that you think of me, I think of you. Just picturing another person in the world maneuvering through each day – doing their best, despite the weight of a heavy burden- helps me through. We often don’t know anyone else in our day to day lives who have it as hard as we do- so I just encourage you to keep in touch here with our wonderful community through the comment section and also- our facebook page is quite lively as well.

    As to your question about whether or not these new biologics address strong smells as a trigger– interestingly, what I find is that the triggers that I had before are the same- it’s the attack itself that is different. I might be exposed to a strong smell, or a flashing or bright light that formerly would’ve triggered a severe migraine attack. Now, instead of feeling intense head pain, I may experience nausea, brain fog, and aphasia, but no head pain. Perhaps all the neurological symptoms of a migraine except the head pain. It’s very odd. But I’ll certainly take it over the blinding head pain in addition to all of those other issues. Now, this is not consistent. I still will get full blown attacks- but there are times, as I said, that I will get a partial attack. Kind of fascinating, huh?

    Lastly, I wanted to mention to you that all of the CGRP treatments (Aimovig, Emgality and Ajovy) are offering savings programs to make their drugs affordable to patients for the first many months (up to a year). It might be worth discussing this with your doctor at an upcoming appointment.

    Very glad to hear the beta blockers are helping you so substantially. Here’s hoping this new year will bring us both some time to heal and a turnaround so that things might get easier. Thinking of you and so very glad you reached out.

  • Holly Harding Baddour moderator author
    1 week ago

    You have every right to cave in and need comforting! None of us can fly in the face of chronic severe pain 24/7. Especially when it’s coming from so many places in our bodies, as in your case. It’s just too much sometimes and we need to pull back and take real gentle care of ourselves in order to regenerate and refill our reserves. You’re not being a baby! You’re being compassionate and caring toward yourself. That’s being smart and remembering that this is a long game and therefore we have to be careful and strategic about how we use our energy on all fronts (emotional, physical, and psychological). With you and thinking of you, AZ!

  • AZReynolds
    1 week ago

    Thanks for the reply, Holly. And yes, knowing others are challenged with these issues does help me… when I’m not being a baby! It just amazes me how I can swing back and forth between being in control of my responses to these illnesses all the way to melting down. I guess I just have too many body parts hurting at once right now. But I really do appreciate your messages and they help me be braver…so thank you!

  • Yvonne2015
    2 weeks ago

    You sound like me! I have tried everything, for years. Loving my Emgality, the other two CGRP did nothing. People just don’t get how having a little ole hour a day free of pain makes us crazy with joy. Yes, it is scary to be taking new meds but what else do we have? Stay strong and never give up
    Yvonne

  • Holly Harding Baddour moderator author
    2 weeks ago

    Yvonne- thank you so much for sharing! So glad to hear you’re having a good experience with Emgality as well. Incredible how much we appreciate a well moment when we haven’t had one in years. The level of gratitude that migraineurs experience is tenfold compared to those who feel wellness everyday. We don’t take wellness for granted. I also agree that there’s not much choice involved in experimenting with these new treatments for those of us who are basically bedridden without them. Nice to find someone so similar and likeminded out there! Glad you’re a part of our community- please stay in touch.

  • gailkirkwood
    5 months 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 Harding Baddour moderator author
    5 months 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
    5 months 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 Harding Baddour moderator author
    5 months 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
    5 months 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 Harding Baddour moderator author
    5 months 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
    5 months 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)
    5 months 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
    5 months 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 Harding Baddour moderator author
    5 months 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
    5 months 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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