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On Again Off Again: The Temporary Reprieve of Migraine Treatments

In this video, Holly discusses the phenomenon of introducing a new migraine treatment and experiencing a break from migraine only to have migraine-related symptoms return soon after.

Does this happen to you? If so, what do you think is causing the break and repeat in the cycle of pain and other symptoms? Join the conversation so we can learn from one another!


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

  • bluebird
    2 weeks ago

    Thank you for this interesting question. It is not uncommon for antidepressants to work for a while and then not be effective. In the opd days we called it the “poop out effect”. Not an elegant term beut psychiatrists had to become mindful that this was real and respect patients stories. It was easy for the profession to try to blame patients about being attached to their illness or other nonsense…but over time we understood that this was real. I recently read an article from Belgium…I would have to search for it now…that suggested that migraine is an attempt by the brain to shut down and correct something that is out of balance. That is why so many of us sleep if we can. Surpressing pain is a great gift if new drugs can accomplish this . Clearly we are not treating the underlying cause for most people with migraine. And since migraine is not just a headache , it is most important that treatment apply effective solutions to the GI tract, the role of inflammation and many other events that seem to happen alongside as part of migraine disease. IT is comforting to think of migraine as a body’s attempt to heal itself. But most medication until now have been like shooting into the dark. The brain is a self regulating organ and one’s own homeostasis…even if it it out of balance for feeling well…. may rule over medication adjustment. So tired after decades of nothing working….bluebird

  • Holly Harding Baddour moderator author
    2 weeks ago

    @andreak– once again, I’m SO grateful for your presence in our community. Thank you for chiming in with this information. You just taught me so much. This idea of migraine serving a positive purpose- it’s a concept I’ve never considered and absolutely love. Would you mind posting what you shared here to our stories page so that more people from our community can read it? “Migraine: The Body’s Attempt to Heal Itself” https://migraine.com/stories/. I think it’s a really important point worthy of more eyes. No pressure of course, but if you have the time and are willing, I think it’d be wonderful. Thanks so much for sharing and so glad you’re a member of our community, Bluebird.

  • DinaMay
    2 weeks ago

    Yes, I’ve had that same pattern of experience. Something works…until it doesn’t anymore. It’s appealing, that idea of a migraine monster out there that always figures out how to get back the obstacles put in its way.

    What I think is really going on is that we just don’t know enough yet. The underlying cause of migraine remains in completely understood. Like many other disorders, it seems to have a genetic component, since migraine runs in families. But there is an environmental component too, because certain things outside us, like weather changes, trigger migraine attacks. We need a LOT more basic research to understand precisely what is going on before we can expect anything approaching a cure.

    In the meantime, I try to practice mindfulness. It takes practice but I’ve found it helpful. And, unlike most of the other things I’ve tried over the years, it’s inexpensive and has few bad side effects.

  • Holly Harding Baddour moderator author
    2 weeks ago

    Love this. Mindfulness in the face of the unknown. That approach is certainly one that can’t hurt and hopefully can only help. And yes- lots more needed in the way of research on the topic of migraine. Thanks for chiming in, @DinaMay – so glad you’re a part of our community.

  • 38_years
    2 weeks ago

    I have had migraines since I was 18. I think I’ve tried just about every treatment there is. Some worked – at least they reduced intensity if not frequency. Some gave me terrible side effects.
    When CGRP became available, my neurologist didn’t want to prescribe it because he said the insurance wouldn’t approve it and he didn’t want to fight insurance. I changed doctors! I tried Aimovig, with no improvement. Then I tried Botox, with no improvement. Then I tried Ajovy and wonder of wonders! I felt great. I had lots of energy. I wasn’t in pain all the time. Then my insurance changed and they wouldn’t approve Ajovy. They wanted me to try Emgality. That was a disaster. Intense joint & muscle pain, insomnia, weight gain, depression, and the migraines came back. After 3 months, insurance allowed me to go back to Ajovy. But it didn’t work for me this time. I still can’t sleep at night, still have muscle & joint pain. My PCP added another antidepressant to my home pharmacy. My neurologist was really stumped on what to try next.
    I was only on Ajovy for 2 months the first time and it was like having the sun come out on a dreary day. Why didn’t it work the 2nd time? It’s beyond frustrating.

  • Holly Harding Baddour moderator author
    2 weeks ago

    @38_years– I really appreciate your sharing your story here. I want to share this article with you on the CGRPs and the cost of wellness- including tasting wellness just to have it taken away. You might relate to the comments as well: https://migraine.com/living-migraine/cost-wellness-affording-cgrps/
    Here’s a community member’s story similar to yours that was recently shared on a CGRP only temporarily working: https://migraine.com/stories/cgrp-worked/. Lastly, here’s a forum dedicated to people with experiences related to trying different CGRPs. Hope you might find those useful. Please stay in touch!

  • Sheri
    2 weeks ago

    I recently had this same conversation with my neurologist. I did Topamax for years & it stopped working. Botox for several years & it stopped working. Emgality for 11 months & now it is not as affective. It would is a very frustrating circle.

  • Holly Harding Baddour moderator author
    2 weeks ago

    Hi @Swslryan– You’re so right that this cycle can be maddening! It’s like migraine has a mind of its own: https://migraine.com/living-migraine/migraines-have-a-mind-of-their-own/. Thinking of you and so glad you’re a part of our community. Please stay in touch.

  • 63ug
    2 weeks ago

    This was a great video, Holly – right on point to describe how we can feel full of hope after an initial treatment success. I had a great neurologist several years ago and whenever I saw her and we tried a new medicine I would get my hopes way up. Then, of course, I would go back to feeling sick and hopeless. It’s a depressing crash after we realize that we can feel relatively normal then go back to being frustrated and depressed.

  • Holly Harding Baddour moderator author
    2 weeks ago

    Indeed, @63ug– you describe the roller coaster life of living with migraines perfectly. The lows can feel lower after we’ve experienced the highs (or in many cases, the lows feel lower after we simply experience feeling the wonder of feeling normal!). Thanks for sharing and please stay in touch.

  • summer1
    2 weeks ago

    YES, I have experienced this also and I like the way you describe an “explanation” of what occurs! I feel the same way, that temporarily the Migraine beast is stumped by this new med that stands in its way but in short time the migraine rages once again. I too often wonder what the heck is the REAL reason this happens. But yes, some new meds have been successful for a brief time.
    Very frustrating. Thanks for this post and for sharing your thoughts

  • Holly Harding Baddour moderator author
    2 weeks ago

    Like a mouse in a maze, indeed, migraine seems to have a mind of its own: https://migraine.com/living-migraine/migraines-have-a-mind-of-their-own/. So glad this piece resonated with you and that you chimed in. Hope you’ll stay in touch.

  • Holly H.
    2 weeks ago

    Three types of migraines 24/7 for over a decade at this level, then started everyday clusters last March. Can’t take anything… triptans, preventatives, Aimovig, Emgality… All those years of trying and trying again. Then a couple of weeks ago, tried Ubrelvy sample. Took one, then a second 2 hours later. For 8 hours out of over a decade of every single day pain, aura, and systemic effects, there was some pretty decent relief of the migraine. (Not the clusters, though.)
    Then after 8 hours, it all came rushing back like a tidal wave. I just sat here emotionally stunned at the entirety of what I live with every day; then I cried. (I have a prescription, but going to save those precious few pills for when my right side goes numb, or when my face pulls down; and then I will take just one because those events are multi-day events.)
    I still haven’t been able to process that day. Sure, I am so grateful that something might possibly work when the wonky stuff happens, don’t get me wrong. However, to experience some relief, then to have it all go away… I found it quite disconcerting, Holly.

  • Holly H.
    1 week ago

    Updated Info: I received a letter from my insurance company yesterday that the Ubrelvy coverage will now be denied. That initial coverage for 30 days was temporary.

  • Holly Harding Baddour moderator author
    1 week ago

    @hh45612 -UGH! I’m so sorry to hear this. How infuriating. Can you ask your doctor to write an appeal? Or do a prior authorization? Or…anything?? This is just ridiculous and so disheartening. I’m thinking of you.

  • Holly Harding Baddour moderator author
    2 weeks ago

    @hh45612 Holly- I’m SO glad you shared this experience- and I can totally relate. I temporarily went from chronic to episodic migraine and back again- I describe it here: https://migraine.com/living-migraine/emotional-roller-coaster-ride-chronic-episodic/ – and disconcerting is the precisely right word to use. And now, that I’m having some relief with Emgality, it’s similarly, well, odd. I don’t trust it- and it feels precarious. I’m so glad to hear you experienced some relief, even if just for part of a day. I know it’s strangely scary when it happens- because you then know it’s in reach- and then it’s emotionally harder to go back to the pain. https://migraine.com/living-migraine/cost-wellness-affording-cgrps/ This is tough, confusing, and tricky stuff, fellow Holly. You are not alone in this, and I’m glad to hear I’m not either! Please, please stay in touch about your journey. I’ll be interested to hear how thing continue for you.

  • jjmcwil
    2 weeks ago

    oh my gosh yes! Why does that happen. I loved your explanation of like a mouse and a maze and the migraines just finding their way around. I have been through so many medications. Work great in the beginning, then goes back to how it was. Started Botox over a year ago, had 4 months of no migraine, and thought i was cured!! But it came back, slowly at first, then back to the same number and intensity. Now taking Aimovig as well as the Botox, the relief didn’t seem to last as long. No I am back at square one. Thank yo so much for this!

  • Holly Harding Baddour moderator author
    2 weeks ago

    Hi there @jjmcwil– So glad this piece worked for you- and yes- it can really feel that migraine has a mind of its own:https://migraine.com/living-migraine/migraines-have-a-mind-of-their-own/. And tasting wellness just to have it dissipate is just a horrid experience:https://migraine.com/living-migraine/cost-wellness-affording-cgrps/. Hope you’ll stay in touch- so glad you’re a member of our community.

  • dianajill
    2 weeks ago

    Regarding treatments that work and then don’t… I am on month 3 of Emgality injections, and they are starting to work. I am getting breaks of 4-5 days per week migraine free. How do i feel? Instead of overjoyed, …terrified to go back to my daily pain. No treatment has worked in the 20 years I have been trying.I am not even telling anyone that the treatment is seemingly working. Feels like it will jinx it. Thank you for your video, you are not alone…

  • Holly Harding Baddour moderator author
    2 weeks ago

    @dianajill– i know what you mean by fearing jinxing things- I worried about that just by writing this. So glad the Emgality is having a positive impact on you as well. Let’s keep our fingers quietly crossed for each other! I think it’s normal to live in fear of the pain returning after living with severe and chronic pain in a way that has had life altering consequences. Thinking of you and hope you’ll stay in touch.

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