My lyrica journey

Posted by williambogle @williambogle, Feb 24, 2022

Good morning folks. This is my first post and here’s my story. In 2013 I had a lumbar fusion and immediately started having neuropathy in my feet. Gabapentin was prescribed initially and then switched to lyrica with an eventual dosage of 150mg twice a day. About a year ago I started having extreme nausea every morning which I later learned was “inter-dosing withdrawal” because my body had reached a level where it needed more. That’s when I decided enough was enough and that a little hot foot could be tolerated. My pain doctor refused to help me with any tapering so I went to my GP. I gently suggested a regimen of drugs currently used to help with the taper but all that he was willing to prescribe was Xanax. Yep. Another highly addictive drug. I eventually had to explain the nausea and beg for some zofran. (I’m a RN so I did my research). I started tapering 6 weeks ago and I’m down to 25mg in the morning and 50mg at bedtime. I’m decreasing by 25mg alternating between mornings and nights. Every single decrease has brought the same horrific withdrawal. I notice the first sign in my breathing which becomes deeper and more frequent. Then comes the sweaty hands and chills. During all of that mix in waves of nausea and anxiety. I explain it as feeling like someone took a hand mixer to my brain. I usually decrease on Sunday and suffer the worst for 3-4 days until I level out and then I have a few halfway good days until the next decrease. I’m expecting another 4 weeks of doing this until I can totally jump off but then it’s dependent on whether I can manage the symptoms. Also I have found that where cannabis is legal it has incredible benefit with decreasing the anxiety and nausea. It has helped me avoid the Xanax which is important in my opinion.
If I had known about the incredible addictive properties of lyrica I never would have taken it. And the fact that I’ve had one medical doctor refuse to help me and another who is obviously uneducated about it makes the situation even worse. Combine that with the medical community touting this medication as the answer to the opioid crisis and you have the perfect storm. The public will cherish the help that they will receive from this platform. Thanks for taking time to read this and good luck with your journey.

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Also I was wondering if anyone had an opinion about chamomile tea used for insomnia. I was in a different forum and was told that I needed to stop chamomile because of GABA. The chamomile increases it and induces sleep but I didn’t quite get why it’s bad. Anyone?

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@williambogle

Hi there. The supplements that I mentioned taking are for brain health and not specifically withdrawal. So for that I take taurine, vit E, CoQ10, and N-AC. Those are in addition to my regular routine of B complex, D3, krill oil, magnesium and a multi. I would consult your doctor about tapering any prescription drug though. The clonidine is a pretty powerful blood pressure medication so you have to be careful.

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Hi William, I'm not taking Clonidine. I'm taking Klonopin the Benzodiazepine. I wish it were the other way around, but no I got myself addicted to a dangerous Benzo for 16 years and it makes me depressed and I want to get off of it but I'm afraid because it's a very hard withdrawal. I've had problems with addiction and have gone into Rehab hospitals before, but with the pandemic, I don't know if they are doing that anymore. Getting off of Lyrica is really hard. Did you consider inquiring about detoxing in a rehab hospital? If they are open.

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My bad. I read clonidine instead. Probably because I take clonidine for the withdrawal symptoms. Which btw has been a game changer. Like I said above it’s a BP medication but also used for withdrawal from many drugs including lyrica. It really made a difference in my taper. I never really considered inpatient treatment. I have a good friend who is a RN at a recovery center in CA and we discussed it. I’m a RN so I felt comfortable doing this at home. Like I said earlier in my posts I realize that I’m tapering faster than most and I’m not advocating that for anyone. I read a lot from people saying you have to give time for brain adjustment etc. but I have yet to read any professional evidence based knowledge of a time period required for such adjustment. I’m have been dealing with my symptoms as they present themselves. I’ve definitely noted a pattern following the decreases and have my personal protocols in place. Time will tell!

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@williambogle

My bad. I read clonidine instead. Probably because I take clonidine for the withdrawal symptoms. Which btw has been a game changer. Like I said above it’s a BP medication but also used for withdrawal from many drugs including lyrica. It really made a difference in my taper. I never really considered inpatient treatment. I have a good friend who is a RN at a recovery center in CA and we discussed it. I’m a RN so I felt comfortable doing this at home. Like I said earlier in my posts I realize that I’m tapering faster than most and I’m not advocating that for anyone. I read a lot from people saying you have to give time for brain adjustment etc. but I have yet to read any professional evidence based knowledge of a time period required for such adjustment. I’m have been dealing with my symptoms as they present themselves. I’ve definitely noted a pattern following the decreases and have my personal protocols in place. Time will tell!

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I am also in that exact same situation you have described in your first post. I’ve reduced by 25mg weekly from 300mg daily split between to doses. I’ve reached 75mg in the same way and now it is beyond anything I can tolerate. My doctor doesn’t understand this process. He wanted me to withdraw instantly and said there was little to worry about. I am on zolpidem for sleep, high dose bio-identical progesterone and cannabis. The lyrica is was severe nerve pain in the coccyx area from a failed spinal surgery.
If you have any thoughts or suggestions I would very much appreciate your input.

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When I started taking gabapentin, I had NO IDEA that you couldn’t just stop taking it! Your “story” sounds like a living nightmare, which I don’t want any part of. Not one doctor has told me about the addiction that goes along with this drug. In all seriousness, at my age, 71, I couldn’t care less about addiction. I have the absolutely worse knee and leg problems from a torn meniscus and other ligaments. The pain is practically unbearable. The “pain management” place has done enough little experiments, I just want it FIXED. Because I’m stupidly honest, I told them I had taken some pain meds from a friend. Like I said, STUPID. I’m now considered a “risk” and they dismissed me. Of course, now I don’t know where/what to do. I’m not looking for a “lifetime supply” of pain meds, just enough to get me through until someone fixes me. Imagine my surprise when I found out a “pain management clinic” won’t do this. I’ve been “marked” and I don’t know what to do.

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Maybe decrease in two or three week cycles?? I find there are fewer symptoms--I did this for large dose oxycodone--

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@sandysurf

When I started taking gabapentin, I had NO IDEA that you couldn’t just stop taking it! Your “story” sounds like a living nightmare, which I don’t want any part of. Not one doctor has told me about the addiction that goes along with this drug. In all seriousness, at my age, 71, I couldn’t care less about addiction. I have the absolutely worse knee and leg problems from a torn meniscus and other ligaments. The pain is practically unbearable. The “pain management” place has done enough little experiments, I just want it FIXED. Because I’m stupidly honest, I told them I had taken some pain meds from a friend. Like I said, STUPID. I’m now considered a “risk” and they dismissed me. Of course, now I don’t know where/what to do. I’m not looking for a “lifetime supply” of pain meds, just enough to get me through until someone fixes me. Imagine my surprise when I found out a “pain management clinic” won’t do this. I’ve been “marked” and I don’t know what to do.

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I have been suffering with lower leg pain for a few years, without diagnosis. I think it is Hoffa's, but there are annoyed tendons, also. Maybe from degeneration of back? I am 70. I started doing the PT stretches to improve leg strength, which helps. Also, I tried doing my own "edema massage" from toes to torso before bed, and it helps. I purchased The Stick to make the massage easier (I have hand strength issues). My pain management gives me Percoset and a periodic nerve block. I recently had an EMG, so interested to see if anything is perceived from there. I don't find pain management that great for diagnosis, but they are good to me to provide what I ask for. I did admit to medical marijuana and it was ok. Interesting about gabapentin being one of "those" drugs--rheumies prescribe all the time.

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@williambogle

Hi there. The supplements that I mentioned taking are for brain health and not specifically withdrawal. So for that I take taurine, vit E, CoQ10, and N-AC. Those are in addition to my regular routine of B complex, D3, krill oil, magnesium and a multi. I would consult your doctor about tapering any prescription drug though. The clonidine is a pretty powerful blood pressure medication so you have to be careful.

Jump to this post

Hi WilliamBogle,
I was curious to know if you were completely tapered off the Lyrica? I’ve been taking it for 3 months for restless legs, severe nerve spasms in my arms and legs, and inner restlessness as a result of a disease called Akathisia. I think I’m at the point where I can lower my Lyrica. I’ve been taking it twice daily at 150 mg and like Ai said for 3 months. Yesterday I didn’t take my morning dose and by the evening felt anxiety, increase in nerve pain, and that inner restlessness nerve that comes from Akathisia. I think I’m going to continue to just take my bedtime dose and just do intermittent fasting since this is supposed to help with Neuropathy. Can you tell me which schedule you followed to taper off the Lyrica please?

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I have voiced the same opinion- had I known I never would have started using it. It was prescribed for fibromyalgia. I have never been at a place in time where I have felt like I had time to go through the withdrawals of getting off of it though. I have actually been in the hospital twice because of mix-ups between insurance, Drs, and pharmacy over refilling my medication. My withdrawals are like that of a heroin addict. Occasionally individuals help themselves to my RX leaving me to figure out to make it through work and life in general. I am sorry that I ever chose it as an answer to fibromyalgia. I would rather be on disability for fibro than to have this medication control my life.

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Hi Perhaps someone here can give me some insight. My mom is 92 years old and had to undergo a leg amputation. She is doing great in regards to prosthetic and zest for life. However a few months ago the nerve pain started becoming more severe so pain doctor suggested trying Lyrica. At first it was great, no pain! However, I began to notice that she was more confused, thought maybe just aging but then she started "hallucinating". Based on timing, we're pretty sure it's from the Lyrica as she's very lucid and with it at other times. Anyway, we are trying to titrate her down and get off it. Her dosage wasn't even that high (75mg/day) but it's been hell for her. Crazy imaginings, anxious, etc. It's like her head is in a parallel universe. She's off in another crazy world or talking about things from past as if going on now and then very lucid when she comes back. Anyway, I'm wondering if anyone else (elderly or younger) has had these experiences and how long it takes for this to stop. Will it stop and can her brain return to how it was before she started on the Lyrica? Thanks for any insights you might have!
p.s. In my research on this I spoke with a neurologist who said he'd never want to put someone of my mom's age on Lyrica due to what it does to the brain and dementia (and I don't think she even had dementia, only had minimal memory lapses, more recall really)

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