Connect
My lyrica journey
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Addiction & Recovery Support Group.
Connect
Hey @williambogle and welcome to Mayo Clinic Connect.
There are lots of members on Connect that have dealt with Lyrica and Neuropathy.
I wanted to connect you with members like @wizzywinkles3, @clutch, @hopeful1953, @janstar61, @cwallen9, @zailey, @jimmy370, @johnbishop, and @jakedduck1. Would love to know what they have to add to your situation.
How are your symptoms as of now?
-
Like -
Helpful -
Hug
2 ReactionsHi @williambogle, I would like to add my welcome along with @amandaburnett and other members. I have not had to deal with Lyrica or Gabapentin for my neuropathy because I only have the numbness and a little tingling which there really are no drugs that help. There is another discussion where you might want to join in and share your journey and also learn what others have experienced and what has helped them.
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Have you looked into any alternatve or complementary treatments? The Foundation for Peripheral Neuropathy has some good information on what's available - https://www.foundationforpn.org/treatments/
-
Like -
Helpful -
Hug
1 ReactionGood morning and thanks. I wasn’t sure about which symptoms you were inquiring about. As for the neuropathy I’ve made up my mind that any amount of burning is quite tolerable compared with the withdrawal from this poison. As far as the withdrawal from tapering I am, in my opinion, is about normal. I know that many are saying that my tapering is too fast but I’m dealing with it in my own way. I’m down to 50mg at bedtime and 25mg in the morning. My withdrawal symptoms are mostly nausea, anxiety, itching and anorexia. All are controlled at present. I’m noticing a predictable pattern with every decrease so I’m able to anticipate in advance. I don’t think people need to nail down an exact duration of a taper. It all depends on the person. I’ve reached out and researched the supplements needed for healthy brain healing and have started those as well. Now it’s just a matter of time. Luckily I have a supportive husband who is a PA and I’m a retired RN so I feel like I’m in as much control of the situation as I can be. Thanks for all of your concern!
-
Like -
Helpful -
Hug
2 ReactionsAlso thought I might add this that after my former pain doctor refused to help with tapering I am in need of a new physician. Luckily my SI joint was injected last December and along with some celebrex I’ve been mostly pain free. However I know that this has historically been short lived. I will not return to the office that refused help so I sent my chart to Mayo seeking help. It’s been several months and I’ve heard nothing. If the celebrex stops working I suppose I will be seeking help elsewhere.
Hi @williambogle . I am in Australia and it is
exactly the same here with doctors lack of knowledge about lyrica withdrawal.
I have been tapering slowly for a few months now.
I am so glad you know your stuff .
I agree with the cannabis too. I take legally prescribed CBD oil and i actually sleep now.
Plus it is so helpful for the lyrica withdrawal side effects and nerve pain.
Do you find you have a spaced out feeling? I actually have had a few memory blackouts and constantly feel faint.
For me, cutting by 25mg is too much so i bought empty capsules and cut down by 10mg each time.
The worst withdrawal side effects always seem to come few weeks after each taper.
Like you, i am wary of addictive pills.
So i am pretty darn angry that i am now dependant on this "non addictive" alternative to opiods.
I have taken low dose opiods before but never felt hooked because i one only once a week for severe pain. I didn't want to get addicted to them.
The worst part of lyrica withdrawal is the effects on the brain. I get so depressed and also edgy. But i just watch some happy shows or dance around to old pop songs.
It feels like i am spaced out, not in the real world.
Thanks for posting your story.
-
Like -
Helpful -
Hug
1 ReactionThanks Amanda for mentioning me in your post. It is always such a relief to hear from others, but i wish nobody had to go through this.
I'm still tapering slowly and it feels never ending. I am really strong willed but that means nothing to lyrica😁.
I've felt so weak and exhausted i can barely walk. I just wait till that passes and do as much as i can by distracting myself with things I love.
Like 70s disco music, and corny 80s soaps.
i have found a tiny dose of CBD oil has been incredibly helpful. Not only for the burning side effects , but also my nerve pain and sleep.
I only take 0.03ml and i sleep like a normal person. I have always been an insomniac so i am so thrilled.
I still have not found a GP who knows about lyrica withdrawal unfortunately.
I am fine doing this alone but it upsets me that so many people are just not getting support.
-
Like -
Helpful -
Hug
1 Reaction@williambogle
I also believe you may be tapering to quickly. If your reducing weely your likely not giving your brain enough time to adjust to the new dose. I’d use a compounding pharmacy lowering my dose by 5-20% every 2-6 weeks. With specific mg cuts the percentage of medication varies each time you cut.
Very wise not to take the Xanax.
Best of luck to you,
Jake
-
Like -
Helpful -
Hug
1 ReactionCan you tell me what supplements you are taking to help you with the withdrawal process please? I want to get off of Klonopin. I've been on it for many years. My pain management Doctor recently put me on Lyrica 6 days ago for severe restless leg syndrome and neuropathy. I too have burning feet, toes and fingers, but they come and go. I don't think I want to be on Lyrica anymore.
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.
-
Like -
Helpful -
Hug
2 ReactionsI’m still trying to find professional information regarding exactly what chemical processes have been damaged or suppressed during these years of being on lyrica. I understand the basics of interrupting the pain signal at the synaptic level in the brain but what happens during the taper is what I’m curious about. And I’d like to read about what has to happen at that level to regain normal function. I have scoured the internet and it’s amazing how little research there is out there.
Anyone have any direction?
-
Like -
Helpful -
Hug
2 Reactions