Skip to Accessibility Tools Skip to Content Skip to Footer
Figure holding a trophy in the shape of a needle. The figure is also scratching their head in confusion.

CGRPs – Navigating Wellness for the First Time in Years

Many in our community who are experimenting with the new CGRP therapies are experiencing a sense of wellness for the first time in years. With the emergence of freedom from pain comes a rush of new thoughts and conflicting feelings.

Can we trust this?

In a desperate search for relief, most of us have tried multiple treatment approaches in the past with varied outcomes. Perhaps we experienced only a temporary reprieve from pain. Maybe we were so excited by a successful therapy that we celebrated loudly, announcing to the world that we were healed, only to have our migraine attacks return with a vengeance. For some, success has been measured by a bumpy ride of some good days and/or hours, but nothing truly significant. Others found zero success from highly trumpeted new therapies. Regardless, we’ve learned to be quite guarded when or if we experience a break from our migraine cycle.

Let’s do it all

For those of us who are feeling a significant improvement from these CGRP drugs, it is overwhelming on many fronts. Once we begin to feel stable and well, we can feel a thrilling emotional and physical rush. We suddenly have so much more energy than we did before. The energy we had previously been spending responding to pain is now freed up for experiencing life. It can be disconcerting to adjust to this new reality. We want to do it all – at once – and throw all of those lessons about pacing out the window. After all, we have no idea how long this wellness might last. So we desperately want to live as much life as we can.

Wrestling with the devastation of grief

For some, it may have been years since we have felt freedom from relentless and severe pain. When we experience the world without constantly fighting pain – we consequently realize with more enormity and grief how much we have missed. When the blinders of pain are removed from our eyes – we see clearly how huge the world is and how little we’ve been able to participate in it. We notice how we haven’t been there, how much this disease removed us from our lives and the lives of our loved ones. When we begin to experience ourselves at full-throttle for the first time in years, it can be heartbreaking to consider all we could’ve accomplished. Similarly, we may take stock of the size or shape or health of our bodies due to years of fighting pain. We may feel weakened and ravaged from the battle and think about what might’ve been.

Can we afford this?

For many of us, if we’ve found a therapy that works well for us, we now must navigate the logistics of affording it. Many of the drug companies effectively get us hooked by offering a free number of months or even a year so that we fall in love with what the therapy offers. Then, that offer expires and we learn that insurance doesn’t cover the therapy and it costs thousands per month. We are desperate to hold onto this newfound solution which has given us a new lease on life. Many of us would be willing to go bankrupt to continue hanging onto health after living in severe pain for years. But some of us simply cannot afford to continue taking these kinds of medications. It is a devastating turn of events to have tried an effective life-changing solution just to have it yanked away.

The introduction of the CGRP’s has been a game-changer for many. Many people who were dealing with chronic, daily, severe pain are suddenly experiencing wellness. Others may experience intermittent pain-free time. Whatever the case, for many of us, we are navigating what feels like a new world. Do we trust it? Are we waiting for the other shoe to drop?

How are you navigating any wellness brought on by these therapies?

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

  • MrsMiMoo
    2 weeks ago

    HI all. Over here in England I am having terrible side effects from Topamax but our healthcare provider is refusing to give us in England Aimovig. In Scotland they are getting it but not here in England. Not very fair. But I am considering paying for it even though it will wipe me out. I am going to try cranial Botox this month. Scared but will try it. Topamax has wiped my brain memory and has destroyed my hair. As a woman I need to A. remember facts and B. have hair.

  • MrsMiMoo
    2 weeks ago

    I can’t edit my comment….. I am inspired by all your comments and your experiencies on Aimovig and Emgality and the other CGRP drugs. I am so emotional reading about people who have found relief from these drugs; I can life live with constipation but not with congnitive impairment and constant tremors. I pray that Aimovig or one of its siblings will work for me. I am in hope that we can all find relief from Migraine. I would have a Migraine every day without preventatives.

  • Holly Harding Baddour moderator author
    2 weeks ago

    I’m so glad you chimed in to let us know the challenges going on in the UK as they pertain to the CGRPs. Do you know if that’s the case with all of the drugs or if it’s just Aimovig that you can’t get?

    You are not alone with challenges related to Topamax memory and hair loss. Sometimes the medication side effects are as challenging to manage as some of the migraine symptoms themselves: https://migraine.com/living-migraine/whack-a-mole-chasing-freedom-from-pain/

    I am glad some of your preventatives are working for you. Let us hear how things go with Botox. I’ve been taking Botox for over 16 years and it’s an absolutely key part of my prevention regimen.

    Keep in touch! It certainly is a long winding road when it comes to finding the “right” combination of treatments that equal the best possible outcome.

  • ejcc
    2 months ago

    It’s been a wild ride 1!year on Aimovig. Everything mentioned in the article is so true. But it’s scary. Another tool in the tool box but this one is special. I now go days weeks without knock down drag out pain. I no longer have 3 am and 3 pm daily pain. But I am scared. The break trough pain brings you right back. No you r not cured. No you can’t eat this. No you can’t drink this and no you can’t change your schedule. It’s a big scary world out there. I talk to the Aimovig when I am in pain silly but that helps. Grab those pain messages and squash them. Anyway I am still scared but hopeful, pain free but still in pain, ready to tackle the world but know that curveball of pain is right around the corner. I am forever grateful for all the researchers

  • Peggy Artman moderator
    2 months ago

    Ejcc, thanks for sharing your experience with Aimovig. That is awesome that your migraine attacks are bothering you so much less. I know it’s scary, but this may be a good tool in your toolbox.
    Peggy (Migraine.com Team)

  • GardensatNight
    4 months ago

    I’m having so much anxiety lately because Aimovig has been a lifesaver for me. I’m chronic intractable and while I still have some degree of headache daily, Aimovig has taken me from a constant 6-8 level pain every day, down to a more manageable 1-3 level pain most days, with usually 5 “horrible” days per month. HUGE improvement compared to what I was living before. Those days with so much less pain are a gift and I cherish every one.

    But I am on a cocktail of preventatives, managed by both a neurologist in town, and a headache specialist we travel to see, 4 oral preventatives, plus botox, plus Aimovig. This is the cocktail that is finally having some measure of success. And of course, insurance is saying no way to the final straw: Aimovig. I consider myself fortunate they will pay for the botox, which is also expensive. But botox was not working on its own, and every 13 week cycle when it starts to wear off, the headaches ramp back up (even while on Aimovig.) Botox/Aimovig work best for me when used together. Both my doctors agree I need to stay on both. Which means as soon as the 12-month free program for the Aimovig runs out shortly, I will be forced to come up with $700 per month, or go back to living every day in excruciating pain.

  • Holly Harding Baddour moderator author
    3 months ago

    Oh @usedtogarden– I’m so sorry to hear about this situation and yet I think many of us can completely relate to the fear you are facing. I honestly can’t figure out if it’s worse to taste wellness just to have it taken away or to never to have known it was in reach in the first place.

    It’s heartbreaking to consider that so many of us who have finally experienced a break in intractable pain (or a decrease in severity of pain) such that we may begin to have some semblance of functionality in our lives might have it whisked away due to high cost. I just can’t believe this will be the case for long. It might take us all raising our voices in concert in order for a change to be made- as there are literally millions of us out there- but I sure hope the drug companies would eventually respond to the need (and/or there will be competitors who will bring down the prices).

    All of which to say, you are not alone. There are lots of us in the same boat who are trying to navigate these waters right alongside you. Let’s keep talking about how to get our needs met- and get the relief we deserve. Please stay in touch. Thinking of you.

  • Buah
    4 months ago

    Thank you for your post. While I thankful to know I am NOT ALONE in the misery of “living in a box,” it is equally heartbreaking to know how many others-albeit with children & spouses who suffer with them-struggle so tremendously.

    I hope NETFLIX “Afflicted” offers new insights & inspiration to us as well as those with energy to spare on the hope ANY solutions bring.

  • Holly Harding Baddour moderator author
    4 months ago

    Hi @buah– thank you for your responsiveness to this post and your kind suggestions and support to other community members- that’s really what this site is all about. Yes- it’s heartbreaking to really see how hugely far reaching and comprehensive this disease is impacting to many lives.

    I haven’t dug into ‘afflicted’ but will do so upon your suggestion.

    Please stay in touch and engaged here. So grateful that you are a part of our community.

  • Naomi
    4 months ago

    Very interesting article, thank you. There ‘s lots to relate to… currently finding some relief using the Transcranial magnetic stimulation device: fewer headaches and easier symptoms with migraine but no fewer of them and energy can still generally be low. I’m doing a bit more overall whuch I greatly appreciate but is it worth £150/month? Not nearly as much as aimovig granted but still a consideration. Do i try another drug as well? Will this stop giving any relief a few months down the line? The questions never stop…

  • Holly Harding Baddour moderator author
    4 months ago

    @naomi– so glad you chimed in! And such good questions! The price issues are astounding. How can we find something that finally gives us relief and then learn it is out of reach financially. It’s unjust. And, that adds an emotional pain on top of our physical pain.

    Your question about adding another drug is of course one for your doctor, but I will share my doctor’s attitude about multiple approaches which is that migraine is a comprehensive neurological disease- it might not respond to just one approach so perhaps one treatment will take care of one aspect of the disease and another treatment will tackle another aspect (for me, gammacore helps with the nausea/vomiting, while botox helps me with neck issues, etc)- so I personally throw everything but the kitchen sink at my migraines (with the partnership of my doctor). This then turns into a basically full time fight with the insurance company- and some treatment approaches I have to give up because they are out of my reach. Again, this is something you and your doctor have to discuss and agree upon- but it certain would seem worthy of discussion.

    You are not alone in this journey and I hope you’ll stay in touch about how you are faring. Glad you’re a part of our community.

  • wendyinconstantpain
    4 months ago

    I’ve had migraines for over 20 years. Like most they rule my life. I have been on Aimovig for 1 month. My pain is worse. The constipation side effect is crazy and the medication I’m taking for that upsets my stomach and leaves my belly swollen like a big balloon that needs to explode. I have another shot right here ready to take but I’m terrified to do it. I need some relief bad, I’m at the end of my rope I can’t live like this much longer….

  • icorvidae
    2 months ago

    Hi Wendy, stick with the Aimovig. I am on my 13th month and now have basically no migraines that kick in (I was at about 14 6-10 pain level migraines a month). Now if I get that tell tale ice pick in the back of the eye feeling, two aspirin with one ibuprofin and a cup of coffee usually does the trick. If a migraine does kick in, it’s rarely over a level 2. Look to nature for the consitpation. Magnesium citrate, flax seeds, high fiber foods. Hang in there! You have support.

  • Brenna
    2 months ago

    I’ve done the linzess and one other prescribed constipation relief meds but honestly the best regimen is just drink an 8 oz glass of Gatorade several times a day (non diet cuz artificial sugar is a migraine trigger) ) and add a full cap full of miralax and stir til we’ll dissolved (HasNo flavor) Then drink all at once. I drink a glass about every 3 to 4 hours to keep my digestive system moving regularly so no bloatimg or hard ballooned hard painful pregnant looking stomach) It’s bad enough we suffer with her head hurting as Bad as it does and the nausea and vomiting much less have cramping and a big bloated stomachThat hurts like hell and makes your clothes Fit so uncomfortably or you can’t button them or all you want to wear are spanks right? Hope this helps I tried this method During a time when my son had a bow back blockag during a time when my son had a bowel blockage so he didn’t have to go through it alone and I was suffering from the same thing you’re going through and it really helped me and relieved my problem but you can do this more or less then what I’ve suggested to Taylor it so however much you need it to achieve your desired results and MiraLAX can be bought at any of your local grocery stores or pharmacies over the counter.

  • Holly Harding Baddour moderator author
    2 months ago

    @brenna- thank you so much for sharing what has worked for you. So sorry to hear this is an issue for you as well. Grateful that you took the time to share a remedy that has given you some relief. Glad you’re a member of our community. Please stay in touch about how you’re doing.

  • Holly Harding Baddour moderator author
    4 months ago

    @wendyinconstantpain – thank you so much for sharing what’s going on with you. I’m so sorry to hear of the discomfort you are experiencing with the side effect of constipation ON TOP of the severe migraine pain that has been heightened by Aimovig rather than decreased. Awful. I agree with @buah that constipation can be horrific. I thought I’d share what works for me as far as that’s concerned (we are all so different so what works for one – might not work for another)- so with that disclaimer, I’ll offer the solution that works for me is something called “Natural Calm” it really is a simple dose of magnesium that comes in different flavors that you can mix in water and have before bedtime. Magnesium is a natural softener and good for migraine anyway- but you’d really need to discuss taking this with your doctor in case you are already taking any kind of magnesium supplement to avoid doubling up. At any rate, look it up, discuss it with your doctor if it sounds of interest to you. I really hope you experience some relief soon. Perhaps it’s time to discuss the other CGRP options with your doctor rather than taking another dose? Thinking of you. Please stay in touch about how things are going.

  • Buah
    4 months ago

    Wendy, constipation can make you want to die. I found considerable relief from what you deal with: Sodium ascorbate powder (non-acidic vitamin C)-cheap; a stool softener like docusate sodium, 5mg bysacodyl OTC 4X day w/lots of water or my “squash soup”-one of few foods I can eat.
    And a 10 mg bysacodyl suppository when you need to go but can’t on day 3;
    The sodium ascorbate is helpful on many levels, but this one’s a game changer.-
    Still in hell, but helped put the “death pill” on hold
    for the moment.

  • Nancy54
    4 months ago

    I have been taking Aimovig for four months and have had no improvement. In fact I think that my migraines have gotten worse. My disappointment is immense. I now have to get back to the doctor and start all over again to see if the two other medications might work for me.

  • Holly Harding Baddour moderator author
    4 months ago

    Hi @nancy54– I really hear you on feeling disappointed after having your hopes raised on Aimovig. I know you are not alone in that. I definitely encourage you to talk with your doctor about the other CGRPs out there (Ajovy and Emgality) as many people have found that if one doesn’t work the others actually do! For me, Aimovig didn’t help, but Emgality really is making a difference. I’m thinking of you and hope you’ll let us know how things turn out.

  • Wimidwife
    4 months ago

    I have been taking aJovy. My insurance wouldn’t pay for it, so I have been using a discount card that gives it to me for free for 12 months. After December of this year, I won’t have prescription coverage any more. When I was in the pharmacy yesterday, I asked how much it would be without insurance – $691.00 PER MONTH! I can only hope the company will offer another discount card next year. I have gone from 20+ headaches per month (when on Botox), to one or two a month.

  • Holly Harding Baddour moderator author
    4 months ago

    Hi @wimidwife– this is such a nightmare scenario and you are NOT alone in this. I share that fact as a way to say that hopefully with enough of us yelling about the injustice of it, the tides will turn. It’s not fair to experience the first break in severe and unmanageable pain in years just to learn it’s out of reach due to affordability. Really with you on this. Stay in touch and let us know what else you learn and we’ll do the same. So glad you shared.

  • Peggy Artman moderator
    4 months ago

    Wimidwife, thanks for joining our community forum! I’m so glad you are getting such good results from Ajovy! I think a lot of us are concerned about availability of these medications next year. We will just have to wait and see. We hope to see you back for updates. ~ Peggy (Migraine.com Team)

  • sarahmchb
    4 months ago

    I totally could relate to this! I’m taking Aimovig and it’s made a huge difference. I was having more migraine days per month than not. Aimovig has cut them down to one 1 or 2 a month and when I do get one, it’s not as severe and doesn’t last more than a day. But now I’m feeling kind of lost like I’m starting my life over. I’m looking for work since before I was laid off and had to quit my other job. It’s so true that migraines were so much a part of our identity! Thank you for sharing.

  • Holly Harding Baddour moderator author
    4 months ago

    hi @sarahmchb-my goodness – this is thrilling to hear. What a huge change to be looking at the possibility of working again. I’m sure it does feel like starting over in many ways. Perhaps it can be seen as a fresh start- a way to reset after such a difficult window. In that long challenging migraine journey your interests and passions may have shifted. It may surprise you to see what piques your interests now. I agree with @buah below- if you have the flexibility, take your time with this major life change. I know my doctor advises his patients not to rush into taking anything additional on until they are sure the therapy will stick and then to really ease into additional responsibilities. Please keep in touch about your next chapter. Deeply happy for you.

  • Buah
    4 months ago

    Hi Sarah, have you, or are you financially able to live with experiencing LIFE without migraines without throwing WORK in the mix right away, which could exacerbate symptoms?

    If I had a do-over that’s one thing I’d reconsider, desperately.
    All the best! ♡

  • Peggy Artman moderator
    4 months ago

    sarahmchb, thanks for sharing your experience with Aimovig. It sounds like it has helped you greatly. I have heard others share that without migraine attacks, it’s like starting a new life. We look forward to more updates from you and others.
    ~ Peggy (Migraine.com Team)

  • Kim DH
    4 months ago

    When I started taking Aimovig, it cut my migraines from 20-30 down to about 10 per month. It has transformed my life. I have been able to take a part-time job working in customer service in a theatre that I would never have attempted before: how do you serve people with a smile when you’re in pain? One interesting effect of this transformation was a loss of sense of who I was, at least at first. My life has been controlled by pain for close to 40 years, and being free of much of it left me feeling I’d lost my sense of identity… Sad that my identity was so tied up in my migraine.

  • Holly Harding Baddour moderator author
    4 months ago

    @kimdehann- So happy to hear this news and really appreciate your sharing the awakening you are experiencing now. It certainly does sound transformative. After watching a fellow migraineur struggle behind a starbucks counter as the steamer squealed in from of her, I’ve often wondered how people living with migraine could work in any kind of customer service field. Bravo to you for embracing this new chapter with open arms! Please stay in touch.

  • Peggy Artman moderator
    4 months ago

    Kim DH, thanks for sharing your story about Aimovig. It is sad that migraine disease can become our identity since it takes so much of our energy. We are happy for you that you are responding so well on Aimovig.

    ~ Peggy (Migraine.com Team)

  • Poll