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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@gpgarrison

I've been on Lyrica for around 15 years, but my neuropathy has gotten worse. After a few hospitals stays and a few specialists later, I went from 100mg a day to 450. I barely remember Christmas at all. I slept quite a bit and noticed that I was having cognitive issues. I decided to drop down to 300 mg's a day, which has helped the cognitive issues some. I've been trying to get off Lyrica for a while. At one time I tapered down to 50 mg, but the pain got the better of me, so I went back to my regular dose. While I was in the hospital back in 2018 one of my doctors took me off of it cold turkey but I didn't notice the pain until I was at home with no pain medication. I was in tears for the next few days of pain plus the mood swings withdraw symptoms that come with it. I was going to try the nerve stimulator that is attached to the spine but was turned down by insurance. I've been seeing a podiatrist that specializes in small nerve neuropathy. We've been looking at some sort of surgical option, which I can't remember the name of, but that didn't pan out, yet. That's how I ended up on a higher dose because that's what the doctor thought I needed.
Last night, my wife suggested that I come off of Lyrica. That's not the first time she has mentioned that. She's been looking into it for a while. Reading through these threads and she has noticed that my cognitive abilities have changed and told me recently that she doesn't think I need to drive because it worries her. She suggested instead of trying to ween myself off of the drug that should check into a rehab facility to come off of it cold turkey. At first, I couldn't help but think of my prior experience of that and think no thanks.
I was wondering if anyone else has gone this route and if it's worth it.

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Replies to "I've been on Lyrica for around 15 years, but my neuropathy has gotten worse. After a..."

Hello @gpgarrison, Welcome to Connect. I'm sorry to hear that your neuropathy has gotten worse and the pain medication no longer works as well and has cognitive side effects. There are a couple of different discussions on tapering off of Lyrica in a different group than neuropathy that might be helpful:
--- My lyrica journey: https://connect.mayoclinic.org/discussion/my-lyrica-journey/
--- Tapering off Lyrica gave me panic, nausea, extreme anxiety: https://connect.mayoclinic.org/discussion/lyrica/.

Have you discussed tapering off of Lyrica or alternative treatments with your doctor?