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Smiling head with cotton representing a brain. Daemon looking figure hanging onto and punching the cotton.

Ajovy is Working, But I’m Still Sick

We’ve said over and over that there’s no cure for migraine, and I’m living that truth now more than ever.

Improvement from Ajovy

Ajovy is working. I’m in my fifth month of treatment, and haven’t had any pain above a 6 on my personal pain scale. Anything above 4 is rare. I haven’t been to the ER in over a year, partly because they can do nothing there now to treat me and partly because I haven’t been completely overwhelmed by pain in a long time.

Experiencing the same migraine triggers

But I still wrestle with all the effects on my mind and body of a chronic neurological illness. The migraine attacks come frequently, resulting from all the same triggers, especially when they are stacked. Weather changes, certain foods and odors, changes in my sleep schedule, emotional stress – together or separately they still equal migraine. The migraine just feels very different from what I used to experience.

Pre CGRP migraine pain

At its worst, the head pain does get uncomfortable. Back in the dark days, when I would get up into 8 or 9 on the pain scale, I would writhe and twist in bed, arching my back and turning my neck until I found some unlikely position that would make the intense, excruciating pain slightly more bearable so I could try to get into a “zone” and separate a bit from my body. Wait the headache part of the migraine out, with additional help from ice, heat, sleep medication, whatever. I’m sure at those times I looked possessed by a demon, and in a way, I was.

My head pain now feels masked

The demon is still there, but it’s tiny, and confused. When I get what I now consider a “bad” migraine, the head pain at its worst feels a lot like the momentary reprieve I would get by contorting my body and numbing my skin with ice during a level 9 of the past. Instead of the tiny reprieves, I now get tiny flashes of the severe pain that used to assail me. Reminder bursts. But the majority of the headache feels masked, covered up, numbed, buried in brain cotton. I imagine the demon struggling to get out. But it only can in quick stabs before it is subdued again by the CGRP antagonist happily making its home in my bloodstream.

My new migraine attacks feel like influenza

The attacks all begin as they used to. Fatigue, depression, anxiety, strobe-like flashing in my peripheral vision; extra sensitivity to light, noise, and odor; hot flashes, nausea. Pain around my eyes that feels like a sunburn, usually one-sided. Throbbing, aching. What these attacks feel like, to me, is influenza. I even have a fever sometimes. In other words, despite the head pain being mild in comparison, I still feel sick in the plainest sense of the word. I feel not well, like I need to lie down as soon as I get home from work. Happily, I rarely have to leave early; my shifts at the library are the perfect length of four hours, usually ending right when symptoms begin to make it unbearable to be on my feet. I miss work about the same amount as my colleagues, and when I do, it’s often because one of the girls is sick, not me.

Better physically, worse emotionally

I feel like depression has replaced severe head pain in my migraine attacks. Trading agonizing pain for heart sludge isn’t exactly what I would have hoped for, but I pretty much expected it, given that in my own brain, lack of pain seems to cause existential emptiness for whatever reason. I’ve noticed it for years – any time I have temporarily felt a bit better physically, I have felt worse emotionally. The same is true now.

Current feelings are better than the dark days

When the attack passes, I wake up and my heart feels light and unburdened. I deal with postdrome and go about my life and wait for the next attack, just like I used to. The depression, which ebbs and flows between migraine cycles, does make it hard. Even when I’m feeling okay I am often totally unmotivated and fatigued. I should be able to get a lot of stuff done now, right? But I think I used to be more productive than I am now. I do a lot of sleeping, a lot of reading. I am out of touch with friends and off social media, not writing, just… being.

I could still be adjusting. Some days, I feel pretty dang good. Maybe the depression aspect will fade with time, but it’s always possible that when it does, the pain will return. I would definitely rather be this unmotivated, uncommunicative husk with the flu than be writhing in pain, vomiting, running out of acute medication, crying in frustration.

But, either way, I am still sick.

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

  • mrst53
    2 months ago

    I just started Emgality(like Amovig) and Tricare covered it. I started a week ago after have a daily migraine for the last 3 months. I did not have a migraine for 5 days. 5 whole days! I have had a migraine for 2 days. But Emgality worked and it was only the first 2 doses. I hope it work better next month.

  • nevaeh49
    2 months ago

    Are you experiencing any hair loss with Emgality? I’ve seen several posts from people that are having this issue.

  • reliefnow
    2 months ago

    You are the first person that has mentioned hair loss and CGRP. I was on 70 Aimovig for 4 months w little help. Now am on 3rd injection of Ajovy along w withdrawal from triptans and have been having satisfying results. But thru the last 7 mos I was experiencing hair loss -not patches but much more hair in the sink and on my hands. I was getting quite concerned. Then a couple weeks ago the rather dramatic hair loss stopped and it’s been normal daily hair loss

  • lizlasvegas702
    2 months ago

    Hi Elizabeth, this is Liz. I read everything you wrote and want to take your words and say here to family and friends who just can’t understand! They can sympathize because they love and care for me, but it’s hard to explain that we live in pain every day regardless of the medication we take to prevent migraines or the ones we take during an attack.

    I tried Aimovig with no success and started Ajovy over again. I had 2 injections before back surgery and quit for 3 months. I’ve just started up again and I’m hoping after hearing your story, that the intensity will lessen for me in time. When did you start seeing some results?

    Like you, I’ve tried so many medications and treatments over the 43 years I’ve been living with this annoying and extremely painful disease. I’m hoping and reaching, that Ajovy is the one that will finally help…even a little. I truly feel you and it’s comforting to know that you spoke so eloquently on how we all feel. It’s not that we are ungrateful but hopeful that one day there will be a cure

    Thank you for your honesty about your health challenge, as I and others truly understand where you’re coming from. My heart goes out to you!

    Warm regards,
    Liz

  • TXmama
    2 months ago

    I have been on the 140mg Aimovig since September. I tried the 70mg for 3 months and it didn’t work for me, but the 140mg has decreased my migraines from about 22 days a month to about 6-8. I totally get what you mean about still being able to tell when you are having a migraine that is masked. Sometimes I won’t really have much head pain, but just the nausea and vomiting/ hotflash and feeling like I have to lie down immediately. I do notice though, that now with the Aimovig, I can sometimes treat my migraines with something like Benadryl or by using my Cefaly, whereas these did not do anything for me prior to Aimovig. The only thing that worked was a triptan. I have also cut way back on carbs/sugar which I think has helped (Migraine Miracle book). I do still feel that I am sick, but so, so thankful to be able to live life again and enjoy my family more often than being in a dark room alone. Even though it is not perfect, I am thankful for each migraine free day. Praying for each of you!

  • Tom Picerno moderator
    2 months ago

    @Kate I had a visit today with my neurologist at the university and we talked a bit about the efficacy of the CGRP therapies. She said it is not unreasonable to expect the therapy to last for 6 months or more as recent journal articles are showing the CGRP’s efficacy continues to build over time. I’m in my fourth month of Ajovy and have had mild relief, but now I have added hope that I will continue to improve over time. We’ve set a goal for eight months of therapy before deciding on the overall effectiveness of Ajovy.

  • Kate
    2 months ago

    Glad you have found some relief, but its unfortunate you are still so symptomatic. Its a good reminder for us to have realistic expectations, as those of us with chronic severe pain and significant associated symptoms aren’t likely to ever find 100% relief. With so many failed treatments, I’ve learned to be very realistic with my goals, to take any relief I’ll get, and try to see failed treatments as a step towards something that will help. Otherwise its just a let down every time.

    Aimovig wasn’t helpful for me, even tried it for 4 months straight with the last month at the double dose, but my primary struggle is constant daily headache, NDPH. My migraines are decently controlled with multiple preventatives. My doctor said the patients he’s seen respond to Aimovig have migraine or at least a migraine-like headache, not a tension type chronic headache like me. No side effects from it though, which was refreshing.

    Emgality is next on my list, once I finally get back in with my neuro, as my insurance doesn’t appear to cover Ajovy. There must be increased demand with CGRPs being available, as his wait time went from 1 to 3 months, so unfortunately I’ve just been waiting since stopping Aimovig.

  • Anne
    2 months ago

    so interesting! Thank you for sharing. I feel like my head is really hot – so instead of getting an attack, I just get a really hot head and nausea, which I thought was a hot flash, but may be the same reaction to an aimovig tempered migraine. I’m still migraines too – just a lot less often. So, they almost seem worse when they hit because I like feeling healthy.

  • Tom Picerno moderator
    2 months ago

    Anne thanks for your comment! I totally get the same feeling that the migraine demon is still there, but it is somehow different. I feel that sense of depression is worse while the headache pain is diffused. I guess the similarity is that we are all on CGRP therapies. We are all here for each other to lean on and find common ground.

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