Sunday, January 15, 2017

Surviving Levaquin Toxicity (Amy K. Nichols)

2016 was a difficult year for a lot of people, for a lot of reasons.

For me, it was easily one of the worst years of my life. Not because of politics or celebrities leaving this world too soon, but because of an adverse reaction to an antibiotic prescribed by my doctor.

The antibiotic is called Levaquin, and apparently hundreds of thousands of people have been adversely affected by it. Some have died. Some took a single pill and never walked again. After my fourth dose, I landed in the ER with difficulty breathing, extreme vertigo, racing heart and anxiety. Two days later I was slammed with joint pain, insomnia, neuropathy, muscle twitching, visual disturbances, tinnitus, cognitive dysfunction, memory loss, aphasia...  The list goes on. You can read about it more in this post at my blog. Long story short, this antibiotic was supposed to get me over a sinus infection but instead stole my body and my mind, and with it, my writing career.

Levaquin left me unable to read books, recall words, or even remember what I was saying from one moment to the next. My central nervous system was so fried I couldn't concentrate, couldn't process information, couldn't cope with loud noises or too much sensory input. I found it impossible to write, not only because of difficult with words, but because it was like the creativity switch in brain had been turned off. I was devastated and scared. At one point I went to the craft store with my mom, a place that usually sparks all kinds of ideas and inspiration in me. As I walked through the aisles numb, not a single spark of creativity in my mind, I realized I'd lost something essential about myself. About my identity. So I retreated, out of fear and sadness. I stopped going to book events. Stopped allowing myself to be around people who would ask when my next book would be coming out, or even how I was doing. I didn't want to either divulge the struggle I was in or make excuses or empty promises for my writing. I pulled back from my online interactions, too. I'll be honest: hearing about everyone's great publishing news and happenings when you can't think let alone write, and your biggest accomplishment of the day is that the muscle behind your knee stopped involuntarily twitching just plain sucks.

There is no single treatment for levaquin toxicity. Heck, it's not even really acknowledged to exist by doctors. My doctor didn't believe me, and made it clear he just really wanted me to quietly go away. So I turned to the internet and the stories of those who'd been through this and recovered. I poured myself into researching what helped them, and I turned myself into a guinea pig, trying one thing after another to discover what might help me. Vitamins, supplements, massage therapy, acupuncture, meditation, qigong, clean eating, lots and lots of prayer. Stuff not found or accepted in western medicine. Some of it helped. Then more of it helped. And slowly I started to get better.

Thank God.

I don't know if I'm entirely out of the woods yet. Some have reported side effects years after taking this drug, so only time will tell.

Now that I'm (hopefully) on the other side of surviving the worst of the Levaquin toxicity, I'm able to look back and see that the experience taught me a few things. Maybe they'll benefit you as well.

Gratitude
Facing the prospect of never writing again made me grateful for what I had accomplished in my short career, publishing two books with Random House. And gratitude is a powerful thing. It saved me from the bitterness that threatened to eat away at my spirit.

Self Care
Getting my life back meant getting my brain back, which meant learning as much as I could about how my brain works and how to support it. What I learned is that our brains are a-m-a-z-i-n-g. I knew this on some level of course, but now I have such a better appreciation for that organ between my ears. If you read nothing else I say in this post, please read this: Your brain does incredible things. Take care of it. There are things you can do to support neurogenesis. This podcast is a good place to start.

Strength
There were times in this journey when I just wanted to curl up in the corner and die. But I discovered there's a fight inside me that would never give in. I don't know where it came from. Maybe it's always been there. I know from experience that I have a righteous anger/mama bear instinct that can flare up in no time flat. Maybe the fight is related somehow. All I know is it's there inside me, and it gave me the determination necessary to get through this.

Faith
I knew I wasn't alone in this--you can read how I knew this in the story I wrote at my blog--and every day I had a chat with God that went something like this: "This isn't how I end. Whatever it takes, get me through this." Now, your mileage may vary, but I'm convinced having faith that I would get better, believing each day would bring me better health and celebrating each small improvement, made a huge difference. Perhaps all the difference.

Wisdom
Perhaps the most important thing I learned from this experience is that I have to be my own advocate when it comes to my health. My doctor failed me. The FDA failed me. And hundreds of thousands of other people. If I'd stuck around and waited for my doctor to help me, I would still be waiting. And hurting. And probably suffering permanent damage. It was only by taking matters into my own hands, doing my own research, experimenting on myself and listening to my body that I was able to see an improvement in my situation. If only I'd trusted myself more and my doctor less before I took that medication.

But I can't change that now. I can only look back and see the path this journey has taken. I can only continue forward, wiser and stronger for it.





8 comments:

  1. Oh Amy! What a nightmare! So glad to know that you are doing better.

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  2. You are amazing! I didn't know how bad it was at the time, but when I learned, I couldn't believe what you've been through. I believe you will help and save many people from the same trauma just by speaking out and using your brave and gorgeous writing skills. Be well my friend and continue to be brave. <3

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  3. Scary and sadly something that happens more often than we want to admit. As far as I'm concerned modern medicine went off the rails some time ago. Thanks for sharing this. I'm posting the link on my Facebook page.

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  4. Thank you, Jody, Kimmie and Berek, for your kind words and encouragement! <3

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  5. I'm glad you're doing better, too, Amy. And I'm in love with that Camus quote.

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  6. OMG, I'm so sorry to hear what you went through. I'm so glad you trusted yourself and found what you needed to (start to) heal.

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  7. I'm glad you're doing better, Amy. What an ordeal. It's so frustrating how we have to figure out what's wrong with us and then tell the doctors, who often don't want to hear it. Hugs.

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  8. I'm happy you're doing better and shared your story with us, Amy. I'm sorry this happened to you.

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