Tamoxifen & Anxiety 5 years after stopping!

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LivingLifeNow
LivingLifeNow Member Posts: 68
edited July 2019 in Hormonal Therapy - Before, During, and After

When I started tamoxifen in 2009 I had the usual side effects: hot flashes, sleeplessness, and anxiety. I remember telling myself that I felt like I had low-grade PMS 24/7. I took tamoxifen for 5 years. However, at 4 years and 4 months I took a three week break. Wow! Did I feel good. My head no longer felt wonky, my stomach felt more relaxed. Even my muscles and nerves were "back to normal." I decided to be a good girl and finish my 5 years of the stuff. Ten days after starting it again, all of my symptoms were back. "Oh, well," I told myself, "only eight months to go." When I stopped for good at the end of my 5 years I waited for the "back to normal" feeling to return. It never did. I am now almost 5 years post-tamoxifen and still have a wonky head, jittery nerves, and anxiety. The hotflashes have pretty much subsided (I did finally, officially, go through menopause a few years ago), and I am sleeping better.

My anxiety is about all kinds of little things. The slightest worry brings on all kinds of crazy "what-ifs." And, heaven forbid I have some type of medical work done (even getting my teeth cleaned); then my anxiety gets even more pronounced.

Has anyone else been in a similar situation?

I am not depressed. I am very involved in my community. I just have never felt back to normal again. (Could this perhaps just be post-menopausal symptoms that happened to coincide with stopping tamoxifen?)

Currently I am not taking ANY medications for anything. I am very healthy and active. I just get tired of feeling this way 24/7. Where is the old me?

Any help on this topic would be greatly appreciated.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited July 2019

    Hi LivingLifeNow,

    Sorry to hear this, I hope things get better for you. I'm just at the beginning of the 5 years and hoping the side effects would leave after I finish. I did read somewhere that Tamoxifen has a very long half life and some amount of the medication stays in your system for years after you finish taking it. I wonder if this might be the reason for continued side effects.

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  • LivingLifeNow
    LivingLifeNow Member Posts: 68
    edited July 2019

    Veeder14,

    Thanks for your response. The tamoxifen journey is different for everyone. Since tamoxifen mimics menopause, perhaps I just went from tamoxifen symptoms to menopause symptoms and that is that. Just a bit of a disappointment.

    I wish you a safe journey.

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  • dd1973
    dd1973 Member Posts: 13
    edited July 2019

    The hallmark of anxiety is that it feeds itself. Your anxiety is feeding your anxiety, I know because I have a long journey with it, as well as with depression (definitely different disease). It's not the Tamoxifen. Try reading up on generalized anxiety disorder. The "trauma" of dealing with Tamoxifen was probably your trigger. Once you started worrying about it and watching for every symptom, your brain went into overdrive. When I went through a panic disorder (constant panic attacks)-- the fear was always over the next one and didn't believe I could be doing it to myself. All the muscle cramps, headaches, shortness of breadth-- had to "real" (anxiety is a real illness). It wasn't until I gave up and thought I would rather be dead that I actually stopped having them. That's an extreme example, but that's how powerful anxiety is. I had actually thought getting cancer would help my depression and anxiety by giving me perspective, it didn't. Mine is manageable right now. I'd recommend doing research on anxiety without trying to determine a cause. You're already active and busy-- that's usually the first treatment. Maybe look into meditation and mindfulness.

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