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The Uneasiness of Feeling Better

Now that Aimovig has been released and dispensed to those with migraine disease all over the country, more of us than ever may find ourselves, all at once, facing that uneasy sense of awareness that lack of migraine is becoming noticeable. Do you dare mention it? On Facebook, or just to support groups or a chosen few online friends? Or just to closest family? Having been involved in three separate clinical trials for CGRP antagonist medications, I have experience with that feeling of wondering whether I’m really better. Could it be placebo effect from expecting the relief? Or optimism as a result of being involved in a study (or being prescribed an exciting brand new drug)? If the drug is causing me to feel better, will it last? Will there be any unwanted effects?

Brief relief from Botox

The first time I received Botox in 2002, before it was approved for migraine (but my neurologist was already recommending it), I did get immediate relief following the very painful approximately twenty injections into my temples, forehead, and neck. I didn’t know that it was the only time such treatment would work; I never got relief from Botox again, even over ten years in the future when the technique had been perfected and FDA approved it to treat chronic migraine. After receiving my first injections of Botox in 2002, however, I was giddy because of having so much pain-free time, waiting for prickles and warning aura that never came, not having to miss any work. But soon, I found myself sinking into a severe, confusing depression that lasted a few weeks.

Trying to understand the depression that followed pain relief

Later, I thought that the depression had been from my brain’s adjustment to no longer dealing with severe pain every day. Why would my brain chemistry react like that? Certainly I don’t enjoy suffering. I am not a doctor or scientist but have had migraine disease for forty years, and my interpretation is that during pain, our brains respond and defend themselves any way they can, releasing endorphins and other neurotransmitters to decrease discomfort and to try to provide calm and relaxation. There are also physiological effects of pain like increased heart rate and blood pressure. With a sudden lack of pain to deal with after years of constantly battling it, maybe something rushes in to fill that void… something like, perhaps, emotional pain.

A confused brain trying to adjust

Depression and anxiety caught me off guard a few times during my clinical trial process, and I have talked to a few individuals who were prescribed Aimovig and have had a decrease in pain but an increase in depression. Could it be a side effect of the drug, they wonder? I don’t believe so. The only side effects found so far are tenderness at injection site and constipation. I truly believe that in those with chronic migraine, a treatment that works could produce feelings of depression at first simply because the brain is confused, and trying to adjust. In a sense, then, the depression is a side effect of no longer having severe daily pain. And for me, it passed.

Waiting for the shoe to drop

When I have experienced the strange “healing brain” depression, it has never lasted longer than three weeks. Sometimes I still have depression and anxiety that come on like an attack, and usually at those times I realize that I have stacked triggers. Without the CGRP antagonist I’m currently on, I may have had to endure a severe migraine attack instead. I treat myself gently, get extra rest, and the depression passes in a day or two.

Another source of depression could be the worry with an apparently effective new treatment that the relief can’t possibly last. We’ve all been through that: a new preventative that you think is providing relief, and you tell everyone and are so excited, but then after a few weeks the improvement you thought you had disappears. The disappointment is sharp; we feel betrayed and angry at ourselves for even hoping. Too many of those experiences lead us to stop believing that anything will ever work. Now, lack of pain isn’t met by relief and excitement, but wary acknowledgement and dread of when it will end. Because relief has always ended before. So by setting yourself up for that disappointment, you are protecting yourself from it. But that defensiveness can result in sadness rather than enjoyment.

Feeling all the feels

If you have been prescribed Aimovig and have felt some decrease in migraine attacks, the emotions you’re feeling will likely be all over the map. Elation, gratitude, fear, denial, sadness, confusion… those and any other feelings you’re having are completely understandable. Allow yourself to feel those emotions, even the uncomfortable ones. Talk to your family, your doctor, and be kind to yourself. Get extra rest, keep up all your supplements, drink plenty of fluids, engage in activities you enjoy, which you now have more time for. If you are not yet feeling any relief, don’t despair. There are two dosages; are you on the lower one (70 mg), and could you go up to the higher dose? It could also take some time to work, or the improvement may be slight. But don’t give up.

New treatment may be worth the try

I have definitely experienced short-term depression upon partial relief of chronic migraine. It is strange to consider a lack of pain not immediately providing joy and freedom, but relief is relief, and over time my brain and body did adjust, allowing me to realize the full impact of a life with fewer migraine attacks. Based on my own results, I do highly encourage those who have the appropriate profile (heavy episodic or chronic migraine that has proven resistant to treatment) to talk to your doctors about trying Aimovig. Results may be almost unnoticeable at first, appearing more gradually, so that three months on, you realize you’ve needed less acute medication. Or you may see swift improvement. Or it may not work at all. But regardless, it is definitely worth a try. And if you do experience depression that scares you or leads you to wish to hurt yourself, make sure to let a professional know immediately, no matter what might be causing it. You are not alone!

Have you ever experienced depression during a period of fewer migraine attacks? Are you trying Aimovig? Let us know in the comments!

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

  • gabi84
    3 months ago

    Oh my, I’m so glad I found this post! Doing some late night googeling because once again I am overwhelmed by feelings I cannot quite get ahold of. I’m one week short of my 3rd injection. I had chronic migraines since childhood and am 35 now. There were def. good effects and I remembered how it felt to be “normal” again. I hadn’t had that feeling for 10 years or so. For me 2 factors are the main triggers for anxiety and depression right now.
    1. I realize what living hell my life has been the past decade when I had migraines almost daily. The difference to the “normal” days is so mindblowing, I just can’t deal with it and all the memories of how I put myself down, the guilt, the wondering if I just had to try harder. And also realizing how mean some healthy people really were considering the difference in our constitution.
    2. Insane fear of too much hope and outright panic when new migraines occur (they still do, I will switch to 140 next week). You describe this fear of dissapointment on the spot.
    I’m not prone to anxiety normally, depression yes, but I consider starting seeing a therapist again to deal with all these emotions stemming from getting better.
    It seems so entitled though to complain when I get better. But it helps a lot to know others experience it too.
    Thanks again! Gabi

  • Holly Baddour moderator
    3 months ago

    Hey Gabi- Thanks so much for sharing. There are so many feelings that come along with this experience of trying these new medication and the ensuing roller coaster that can follow. You are not alone in this, for sure. I thought you might relate to this article regarding my experience of shifting from chronic migraine into episodic and then back again. A wild and emotional ride: https://migraine.com/living-migraine/emotional-roller-coaster-ride-chronic-episodic/. Thinking of you and so glad you are a part of our community. Please stay in touch.

  • Rachel1726
    5 months ago

    I took my first shot if Aimovig and 8 days later I ended up in the trauma unit in the ER with an allergic reaction. I was unable to swallow and I felt like I was going to choke any moment. Come to find out one of the ingrediates in these new migraine shots is Chinese hamster every cells. I’m allergic to rabbits and hamster type animals. This is the best guess the doctors can come up with as to why this happened to me. I was given benadryl but it only made it worse. Then I was given a steroid shot which seemed to help. I now have to go for steroid shots for the next few weeks while I wait for Aimovig to get out of my system.

  • Luvmyfam22
    8 months ago

    Right! Right! Right! I just recently started Aimovig with my trial doses and felt like a brand new person! Wow…what do I do with this new gift of life? My family kept warning me to take it easy and relax a little…but I lived my good days like no tomorrow. Then, well, then month 3 came and I was ready for the doses to come rolling in, instead, the red tape rolled in a plenty. Not only did depression set in because I felt my hope being snatched from me, but while I was living the “good life” I wasn’t taking note to slow down and listen to the emotions I was having about feeling good. So when my depression hit, it has hit hard and with no meds…the pain came back hard as well. I did get my third dose and am waiting for the migraines to subside once again, but now I am working to face my emotions about how to restart, so to speak, my life again because in reality, it’s not the same – time carried on without me.

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    Hi Luvmyfam, it is definitely hard to figure out how to navigate life without pain. I hope your migraine attacks have improved after the break you had and that your mood has improved as well! Take care! ~elizabeth

  • Anne
    11 months ago

    I know when I have migraines I’m too exhausted to have anxiety. Anxiety may be a sign of energy coming back 🙂

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    Anne, that’s a good way to look at it!

  • John1381
    11 months ago

    A really timely article and such a good reminder to be aware of the emotional fall out that can occur from treatment and, hopefully, improvement in symptoms. It can be so hard to tease out what is happening. I am so pleased many of you are getting Aimovig and some are seeing some improvement. Its not available yet in the UK but I am laying siege to my neurologist to try to be first in line when it is. Over 25 treatments so far to no effect but I am really hopeful with this one.

    Cheers,

    John.

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    Hi John! “It can be so hard to tease out what is happening.” That could be a slogan for chronic migraine! Well said. I am now taking Teva’s version of the CGRP antagonist, Ajovy, and it is working much better than Aimovig (I started having increased pain and side effects in month 3). It is my understanding that Ajovy and Emgality are “key” biologics, attaching directly to the molecule, and Aimovig is a “lock” meaning it attaches to the receptor. I think some of us are lock people and some are key people, if that makes sense! Thanks for being here ~elizabeth

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    Oh and I hope you’re able to have access to these medications soon in the UK!

  • Karen
    11 months ago

    Hi Elizabeth.
    I’m just finishing up my first month of the 140 mg dose of Aimovig injections.

    I do have diagnosed anxiety but not depression. I take med for the anxiety so it’s under good control.

    But I noticed in the first couple of days after my first injections I was very anxious, shaky, heart pounding,..all symptoms of anxiety. They were very out-of-the-blue and not usual for me while on med for anxiety.

    The only difference/variable was I’d just done the 1st Aimovig injections. So I’d love to know if anyone else has had this experience too?

    Of course, it’s a new drug and over time it may be found that it does cause depression &/or anxiety as a side effect. The anxiety became a bit less as the month went on but it lingers still. Such that I’m nervous about my upcoming next dose!
    I’ve had good results with Aimovig in my migraine INTENSITY mostly. My acute meds work better or the pain levels are less when I do get a migraine.
    The FREQUENCY has improved too but not remarkably. But I’ll take any improvement.

    I’m thinking it might take more than 1 month of treatments to see the full extent of the results.

    I’d just like to know if the ANXIETY side effect has happened to anyone else right after the injections?
    Thanks.

  • maya
    2 months ago

    Hello, I found both this article and this comment very interesting and I can totally relate to both. I have chronic migraines but I am not depressed and I have never experienced anxiety…. well.. until this week. 6 days ago was my first injection of Aimovig (140 mg). I was surprised to feel depressed the day after the injection even though it was a pain free day. I can totally relate to the article.

    Day 3 was great. But Day 4, 5 and 6 have been incredibly difficult with anxiety like I have never experienced in my life before.

    And because I have never experienced tightness in the chest, shortness of breath, or panic before, I decided to go to the ER.

    Everything was fine…except I have a lot of constant anxiety.

    Personally, I can’t help but feel that it is absolutely caused by the injection.

    I have also been experiencing really bad insomnia, cramps and constipation.

    I do not have pain in my head but wow…. all the other symptoms make me question the value of the injection.

    Thank you all for sharing your experiences.

  • CherieT
    5 months ago

    Hi Karen
    I can so relate to your post. I have diagnosed depression but it treated and managed. However as soon as I had my first 2 x 70 Aimovig injections I began suffering quite severe anxiety. It got so bad I went to my GP to seek help. I have just had my 2nd dose and while the anxiety has settled a little I still have moments of terrible despair. I’m really at a lose as to what to do as as far as the migrains and constant background headaches go I have seen a vast improvement. I would rather live with migraine than anxiety.

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    Hi Karen, I’m so sorry it’s taken me so long to reply, but truthfully I didn’t have any info about anxiety as a side effect 4 months ago, and now I do. Several friends have experienced it with the Aimovig. How have you been doing? Did you switch to a different one (I now take Ajovy) or is Aimovig working for you? ~elizabeth

  • MarkF
    12 months ago

    Still waiting 33 days after being prescribed Aimovig for samples. Interested in hearing how long it took for those who have received the samples?

  • Elizabeth Roberts-Zibbel moderator author
    12 months ago

    Hello Mark ~ I am so sorry you’re still waiting for your samples. The specialty pharmacy in Chicago where my new neurologist practices told me that because of the huge influx of prescriptions, people are waiting weeks. A month seems really excessive! I was approved for the $5 copay program so I just went that route. Please keep us updated and I hope you get your medication soon! ~elizabeth

  • Joanna Bodner moderator
    12 months ago

    I certainly do not think you are alone in this experiencing such a big delay! Sure is frustrating…I am sorry. 🙁 In case you wanted to take a look at some of the conversation going on specifically surrounding Aimovig & members expeiences, I wanted to share a link to our discussion forum that you may find helpful. – https://migraine.com/forum/cgrps-calcitonin-gene-related-peptide/. Good luck & do keep us posted if you can! -Joanna (Migraine.com Team)

  • BringinHomeTheBacon
    12 months ago

    This is such an interesting and timely article for me! I’ve been on Aimovig 7 weeks and am 2 weeks migraine free. The past few weeks I’ve experienced a lot of what you’ve described. I couldn’t rationalize if it was depression or a feeling of being uninterested and unmotivated to do anything. Yesterday it changed to elation and gratitude. I hope Aimovig continues to work, it would be life-changing!
    People who don’t deal with chronic pain can’t begin to understand how every little thing throughout our day and mindset changes. It’s very promising to see these advances in medicine. Better living through science!

  • Elizabeth Roberts-Zibbel moderator author
    12 months ago

    Hi, two weeks migraine free is amazing! Are you on the 70 mg or 140? I’m glad your feelings of depression / disinterest turned into elation. I hope to get there soon myself! I’m only about 2 weeks into treatment. I hope your success continues! ~elizabeth

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