Migraines on Tamoxifen/Hormone Therapy

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Cane
Cane Member Posts: 2
edited November 2018 in Hormonal Therapy - Before, During, and After

Hoping some of you experienced ladies can help!

Initially, my experience with Tamoxifen was positive -just some slight sleep interruptions and a constant, but manageable, low grade headache. However, after about 6 weeks, the headache exploded into a debilitating migraine where I could not get out of bed, and eventually ended up in the ER for treatment.

As background, I have suffered from migraines for 15+ years, and get one monthly with my period, so I suppose it is not shocking that a hormone therapy would have brought on my worst migraine experience yet. I am under the care of a headache specialist, and prior to this had my migraines well controlled with Botox for migraine.

My MO had me stop tamoxifen, and the headaches have stopped. However, my MO has seemed perplexed by my headaches and what my treatment plan should be. She has decided that next we would try monthly Lupron shots to shut off my ovaries and see how I do with that. However, my neurologist thinks that could make my headaches worse.

I would think that there are probably many women with a history of hormonal migraines who also get migraines on hormone therapy....and so maybe some of you have been through this? Just feeling frustrated that this part of the treatment is proving to be the most challenging when I thought I was through the worst of it!

Thank you!!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    Cane, welcome to Breastcancer.org and thanks for posting!

    We're so sorry to hear you're suffering from this debilitating side effect! We're sure others will be by shortly to weigh in with their experiences and advice. In the meantime, you may be interested in checking out this page from the main Breastcancer.org site on Headaches as a side effect of breast cancer treatment, which features some tips to help alleviate this effect.

    We hope this helps and that you find relief soon!

    --The Mods

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  • gwendolendenise
    gwendolendenise Member Posts: 9
    edited December 2017

    Hi Cane,

    I have been suffering from the worst headaches as well. I've never been one to get headaches at all so now that's I've read your post I'm wondering if mine also have to do with tamoxifen. Sometimes the headaches are so bad I just have to take a nap which I hate!

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  • Djohn
    Djohn Member Posts: 14
    edited December 2017

    Hi Ladies,

    I too am having issues with headaches. I never suffered from headaches prior to treatment. I started getting headaches after my Neulasta shots but they would go away in 2 days. Over the course of treatment - surgeries, chemotherapy, radiation - the headaches started to stick around a little bit longer. My Onc currently has me on Lupron and tamoxifen and I am now experiencing a constant tension type headache. It’s been over three months now. I’m currently trying gabapentin, acupuncture and craniosacral therapy but so far not much improvement. I’m curious if either of you were able to find relief?

    DJ

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited January 2018

    cane Lupron will make your migraines ten times worse. Don't do it!

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  • melliebean23
    melliebean23 Member Posts: 1
    edited November 2018

    Cane, did your migraines ever subside. I'm going on 3 weeks of daily migraines. Some days more mellow then others. Waiting to hear back from my oncologist on what they suggest.

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  • Cane
    Cane Member Posts: 2
    edited November 2018

    YES!

    After going off the tamoxifen for about 6 weeks, I started monthly Lupron injections. My oncologist kept me on Lupron alone for about 8 months to let my body adjust. Then she started me on an AI (Arimidex), and it has been fine!

    Note that as a long time migraine sufferer, I also see a headache specialist (neurologist) so I'm also on a daily preventative (Topamax) as well as Botox for migraine, and take lots of supplements (Vit D3, B Complex and Magnesium Citrate) daily.

    I'm very grateful that my oncologist was willing to work with me and my neurologist, and understands that quality of life is super important in being able to withstand hormone therapy!! There are so many side effects!

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    I'm a fellow migraine sufferer and trying to decide on Tamoxifen so your post resonates with me, Cane. I feel for you and the situation you were in. How wonderful that your MO and Neuro were willing to work together to find a solution that worked for you in order to put an end to the frequent migraines.

    I'm also on Topamax daily as a preventive, with Sumatriptan to treat full on Migraines.

    Can I ask were your premeno or peri or post meno when switched to Lupron & AI?

    If you are/were pre, I wasn't aware that AI was an option, but maybe it's only in cases such as yours where you cannot tolerate the SEs of TAmo?

    Just curious. So happy for you that you were able to get relief and still be on a treatment that reduce your RR. Wishing you the best on your journey.

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