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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.
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Good morning all, here is my Lyrica nightmare.
I started on Lyrica in 2007 and was on it until I asked to be weaned off of it June 2022. I was on 300mgs 2x daily for over 9 years and on a dose of 225 for the other 6 years. As soon as I started tapering I began having withdrawl symptoms, anxiety, insomnia, unintentional weight loss, higher blood pressure and heart rate over 100 bpm, extreme fatigue which all increased more as I was tapering. In November I was on a dose of 75 mgs and everything just started to snowball. The key point of this is also I had been diagnosed with Parkinsons in August of 2019. I was taking Azilect 1 mg daily for almost 3 years before I started the tapering off of Lyrica. When I finished my last dose of 25mg in January 2023, I was getting progressively worse. Long story short my neurologist who was monitoring me during the taper suggested that maybe Lyrica had some benefit in my PD and that maybe I didn't need a full dose of the Azilect. He ordered a DAT SCAN when I continued to feel worse to confirm I had PD. Well I never did and the tremor, unsteady gait, memory issues, etc where all from Lyrica as since stopping it I never had any symptoms reoccur. Since he abruptly stopped the Azilect without tapering it set me into another withdrawl syndrome which worsened all of the withdrawl symptoms. My family doctor disregarded my 24 lb weight loss to anxiety which was masked by the Lyrica( up until this time I didn't know it was used for Anxiety disorders?). He suggested going on Lexapro and see a psychologist. I received no supportive medication during this time bit luckily I had a medical Marijuana card and have since worked with one of their Pharmacist who suggested some tablets mixed with CBD and THC for the day and RSO oil for sleeping at night. I am sleeping at least 6 hrs a night and although it is only slight better my fatigue has lessened. My cardiologist ruled out any issues with respect to my heart and my GI is helping to find out why I am having the ongoing weight loss since my primary and neurologist are playing the " its not withdrawl as the Lyrica supposedly is out of your system within 5 days and the Azilect 14 days" . I have an endoscopy this week and I am hopeful that we come closer to a diagnosis for the weight loss. However I will not be surprised if everything checks out as I am confident this is all related to the Lyrica and for me subsequent Azilect withdrawl which means it maybe CNS related disorder. I have a new neurologist and Primary. I believe this will be a worse crisis than opiods because of the CNS long term effects. I will be contacting Mayo soon to see if I can get any additional help if the remaining tests all come back unremarkable as my bloodwork has been with the exception of a high AG ratio. Ironically my story could have turned out differently if I woukd have known that Lyrica rare side effects include hypoglycemia which I already had a normal low blood sugar before going on the meds. Plus the NIH also has a paper on Lyrica stating that doctors should look for any evidence of a movement disorder, ie..PD. I will continue to fight to get my health back as I WAS very fit before all of this. I hope this helps another person like this original post know that what the are going through is real and needs to be recognized and treated accordingly. Now I also know why they have recovery centers treat people going off of Lyrica.
Recently diagnosed with fibromyalgia, and read about the 3 medications approved for it. I've read terrible things about stopping Cymbalta and here it sounds like Lyrica is just as bad. The other drug is Savella, which also needs to be tapered. Has anyone commenting here found any medications that helps with the pain where the benefit outweighs the risks? I found a 2014 Consumer Reports article that recommended these older drugs: ■ Generic amitriptyline■ Generic gabapentin■ Generic paroxetine-IR (immediate-release). Reasons: "All of these medications have been on the market for 15 years or more and have been widely used. They are all available as inexpensive generics and are at least as effective and safe as the other fibromyalgia medications." Gabapentin has side effects I don't like but I would like to find something for the daily pain.
Any advice or suggestions are welcome.
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1 ReactionGabapentin is addictive and you have to taper. Paroxetine can be extremely difficult to discontinue.
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2 ReactionsSeems like there's no good drug for this disease that doesn't come with unpleasant side effects.
I will never understand why doctors use antidepressants for pain. Maybe they’re running out of options due to the government crackdown on opioids?
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1 ReactionI'm sure that's part of the reason, and regular pain meds don't work well for Fibromyalgia since it has something to do with the central nervous system. Most doctors don't even want to treat it, they refer you to pain clinics which are booked out months for an appointment. I went to one a while back and they seemed all about the money. I'm going to try acupuncture and see if that helps.
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2 ReactionsI am also trying to taper off pregabalin since May. No matter what I do, horrible nausea, dizziness, diarrhea, exhaustion. I went from a maximum of 200 mg a day (it took weeks to work up to, turned out to provide no help but many side-effects). So I got it down to 150 with some success, although pretty ill; but getting below 100 seems impossible. I've tried for nearly 5 weeks. I lowered my dose by only 12.5 mg today in fact, and am dreadfully sick. However, yesterday, fully at 100, I was ALSO dreadfully sick. I tried upping it; same thing. But when I suddenly went off it (one day a few weeks ago on just 50mg) I could only wish to die. Chills and complete debility, sobbing in nausea. So back up to 100. I've lost 8 lbs (didn't need to lose any) and am losing hope for any help. Doctors and pharmacists just tell me to keep doing what I'm doing, gradually reducing; but have nothing to say about the terrible toll it's taking on my health or why I am so sick whether I go up, down or stay the same.
Has anyone else had such a reaction? Has anyone advice on the nausea? I've seen my doctor + consulting pharmacists many times, but none of their weaning schedules have worked--that is, they make me too sick to put into practice as suggested. We've also done many tests, to no avail. My digestion used to be perfect.
I was put on the pregabalin because of neuropathic pain following my latest Covid vaccination, in April. This is a rare but documented (by the NIH) side-effect of both Long Covid and the vaccine. I'm still taking painkillers to control that (burning all over my body). Could any of the nausea be from them? I've had to take them before and never had any negative reaction, plus the nausea only started with the pregabalin.
I will be grateful for any advice or encouragement. Most of the accounts online are either people still trying unsuccessfully to get off, or people getting off with little problem. Has anyone out there managed to get off this drug after a hard time?
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1 Reaction@incanada
Did you calculate what percentage you titrated when you cut it by 12.5 mg?
Take care,
Jake
Hi, thanks for this. I just did what my pharmacist recommended: emptied a 25 mg capsule and divided the powder in half, taking that half with some jam together with a full 25 mg cap, to make a 37.5 mg dose instead of my usual morning 50 mg. My doctor recommended I try this too. I was fairly OK most of the day (as it goes) but by 4 very bad nausea hit--similar to the day before, when I'd taken 50 mg morning and evening as I had been for weeks.
What should I do instead? It doesn't come any smaller than 25 mg caps where I live. I'm trying to figure out whether to take the other 12.5 mg plus a 25 tonight, or take a whole 50 mg. I'm really beside myself. I ask these questions to professionals and they insist this doesn't happen so they don't know what to tell me.
Thanks!
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1 Reaction@incanada
i’m not saying anything I write is is the correct thing to do but it’s what I would do. I was on a massive dose of Klonopin and it took me over two years to get off of it, but I went slow, and now that I had no withdrawal effects, but that’s me.
I would work on discontinuing either the morning or evening dose, not both at the same time. Be consistent with whatever
you do.
If possible the compounding pharmacy would be your best option. I wouldn't decrease the dose by more than 10% and stay on that dose for 3-4 weeks.
Best of luck,
Jake