I Want to Die

That is what I’ve been hearing over and over again these last four weeks from my grown daughter who is married and mother of two. She has had chronic and debilitating migraines for fourteen years…and Aimovig was her last great hope. She had a rough first four weeks as had first shot nov 28 2018 with new different type headaches where she felt like a band tightening around her head and her eye would jump out of socket. Her doc said to try the second shot as there was some evidence it could take another month or two. WORST MISTAKE EVER. She has been bedridden with constant nausea and vomiting and her old barometric pressure migraine along with this new monster headache that never leaves.

Her doc gives her shots to help with nausea but that only helps for a day and she takes every med allowed to try to control the nausea. She also has auras and shooting eye and temple pain and lost taste for food. She has fatigue and muscle aches but nausea so continuous that they fade into background in importance. This has been a true nightmare and obviously she is not alone. We go onto patient sites and read of others going thru the same horrid side effects. Every doctor site claims this is a miracle drug but there are many patient review sites that sound more like 50/50 with half miracle and half nightmare. We are holding on best we can to get her thru the long half life. Second shot was Dec 28. Do your research and report to the FDA as she has with any side effects so others can go into this wiser and eyes opened.

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Comments

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  • Anne
    2 months ago

    Hi: I’m so sorry. My neurologist had me do two shots of the Aimovig at once because he said the 1 wouldn’t be enough. Is it possible the one is not enough? It also took time for the Aimovig to work, so don’t be discouraged by the first round – especially if it was the smaller dose. As for the severe pain behind the eye. I know my migraines are constantly changing types. So the severity and location change. But if it’s extremely severe and short lasting, could it be a cluster headache along with a migraine? I’m really sorry – I know the pain but there are a whole batch of new preventatives coming out, so please don’t give up hope.

  • Anne
    2 months ago

    I’m so sorry she is going through this. I’m sure she’s had an MRI when she got her initial diagnosis. I had to switch to a neurologist because a general practitioner didn’t have enough info to help me. For the Aimovig, my neurologist gave me two shots at once 140 ml. because he said the one shot would not be enough. It’s been working really well for me. I don’t know if she’s gone off her other preventatives when trying Aimovig?

  • Joanna Bodner moderator
    2 months ago

    Hi @Jhelmink, We greatly appreciate your willingness to share your daughter’s very difficult journey. For so many like your daughter, these new CGRPs were their last hope and I am so sorry that she experienced this & did not receive the relief that she was in great need of. Has she discussed all other preventative options with her doctor? I truly hope she does not give up hope! There are many treatments & combination of medications that can be considered. Let me share some information with you with the hopes of maybe providing some encouragement.
    https://migraine.com/living-migraine/virtue-not-having-tried-everything/
    https://migraine.com/blog/tried-them-all/
    https://migraine.com/migraine-treatment/prevention-medications/

    Finally, as we do with all our members is to encourage them to get the support they deserve. Not just from doctors, but from therapists, counselors, in person support groups,etc. This resource may help. https://migraine.com/blog/top-places-to-find-support/. Also, if she is ever in an immediate crisis, please let her know there is always somewhere to turn for help 24/7. She can contact Lifeline anytime.

    She is very lucky to have such an amazing mom like you in her corner! We are always here to listen & feel free to reach out anytime. I truly hope she finds the relief she deserves. Warmly, Joanna (Migraine.com Team)

  • Hvannelli
    2 months ago

    Hi. I am the daughter, Heidi. I appreciate all of your resource links but as my mom stated, this was the only thing that had not been tried.
    While I did not experience much of the ringing in the ears that some patients noted, I had waves of vertigo and balance issues. The nausea and vomiting were the most constant issues but the new migraine pain I was having specifically behind my eyeball was torturous.

  • Jhelmink author
    2 months ago

    I will pass along all you have shared to Heidi but let me say: Diamond Headache Clinic, Cleveland Clinic I match program, pain specialists, neurologists, over a dozen abortives and preventatives which lost effectiveness over time, counseling, etc etc. when I say this was her last hope…I was not overstating. Appreciate your support so very much

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