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GABAPENTIN WITHDRAWAL, this is a living hell!!

Hi guys so I've written before under a different group about my recent spine op and grief of losing my Mum etc and how awful I've been feeling this year . But what I'd like to ask you all is has anyone suffered so badly coming off gabapentin? I've been on it for 2 years last 6 months on 3600 mg a day!! But after my spine surgery back in April I was still in a great deal of pain so a month ago my doctor decided I need to change my nerve pain tablet So here goes I started weening a month ago from 3600 to this week where I'm now on nothing!! Until Thursday when I see my doc who wants to start me on pregabalin? Thing is the last two weeks I'm uncontrollably crying can't get out of bed have lost all interest in eating reading talking and just been here and alive I have never ever felt this low and depressed in my life I don't know what to do !! I have a history of depression but how I feel now is nothing I've ever felt before!! I presume it's withdrawal I also take morphine sulphate and codeine phosphate whic I still take as normal! I don't know if I need anti depressants or should take pregabalin. Help!!!! I still have cervical spinal stenosis even after the op and will need further ops to sort this out. I'm at my wits end I have NOONE TO TALK TO, since my mum passed away 18 months ago I've become isolated and a social recluse. Anyone had gabapentin withdrawal????

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I had a cold turkey withdrawl from these horrible pills. I was in bed for 7 full days. The side effects from this were horrendous. Everything you mentioned above.. it will pass. Eventually. I decided no to pregablin as I've since read similar stories to gabapentin withdrawl.. wouldn't wish these feelings on my worst enemy. Have you spoke to your doctor? X

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I see my doctor in the morning, he did say he doesn't know of any severe withdrawal from gabapentin but I now know this to be untrue! How long did it last for you? I'm on day 14 and it's getting worse I feel so awful and today feel sick and aching along with very depressed! Because I have nerve damage I need something for the pain so I'm going to have to go onto pregabalin I think!! Thanks for replying x

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I think your doctor obviously doesnt know alot about gabapentin withdrawl. The amount you were on should have took alot longer to come off. A few on here will tell you.. To be honest it took me weeks to get back to normal and start thinking and feeling straight.. I too have nerves issues in my neck but there was no way I was taking them sort of tablets ever again. I do use butrans patches at 35mcg and although they don't take all the pain away it's better than feeling the way I did. My doctor offered me tramadol and diazepam to me with me going cold turkey.. x

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"I see my doctor in the morning, he did say he doesn't know of any severe withdrawal from gabapentin" - Wow, your dr is an idiot. I don't think that GPs should prescribe anything strong than co-codamal before sending you to a pain specialist, who doesn't need to be an anaesthetist (an new intermediary, who isn't clueless).

Pfizer themselves contradict themselves within many sentences "Anorexia, increased appetite" - Maybe they don't understand the concept of a double negative.

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I did see a pain specialist but he said my neck was too severe on the MRI scan for an injection and to just increase my mess, he did offer me a fentalyn patch but I refused . I really appreciate your reply thanks xx

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I'm on Fentanyl patches and really like them (I've had virtually zero side effects).

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Same here ive tried everythng and other patches.The fentanyl is ny life saver.

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Now we sound like addicts ;)

I do cringe every time a see a headline and know it's about the crap coming out of China, before I even read the article. The patches release a stable does (you can't even see the powder on the clear patches). As long as you don't wear them in a hot bath or sauna (fine if you take them off), you'll be fine.

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I have been in the hydropool for 3 hours and all was well with the fentanyl patches.Ive been in the sauna and steam room and alls good so far.We are treated like addicts if we ask for anything,the whole system is a joke.Its actually scary.

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It is being treated without dignity or respect, we r suffering and they dont get it

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I know the feeling well.

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I'm on fentanyl patches, I went up to 75mcg but have reduced down to 37mcg they are the strongest pain killer in the world and do help and they don't make me feel wasted like I thought they would but then I have a huge tolerance to opiates cos of years of pain relief, it's a 3 day patch and ill wear it for 3 days then try have anything from one to 3 day without to stop me becoming dependant on them, just cos a Dr gives us a prescription and tells us to take this amount every 4 hours doesn't mean we must do that. When it comes to addictive drugs like opiates and benzos it's best to take them as and when u need them, for me ill try go as long as I can before taking something even if I'm crying in pain cos i dont wanna get a tolerance to them or an addiction. Anyway I hope this helps xx

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Hi how r things i had a terrible withdrawal and this has left me with so many problems. I sevre chronic breathing problems I can't climb the stairs I have zero quality of life, fatigue so bad. Allergic to everything it wud seem. I have vascular eczema so bad my leg becomes nearly triple the size I put weight on which I can't lose as I can't breathe. My voice has gone horse tongue swells and and look like its sliced open ulster's on tongue, my left hand is numb and becomes really painful really bad brain fog an my memory is so poor. I can't go shopping walk my little dog walk up my stairs I literally constantly gasp for breath. While on gabapentin, I was prescribed 25 courses of antibiotics I live alone, no one is doing anything, I've been put on soany inhalers they said chronic asthma. I said seriouslyi know ppl with that and they breathe normally most of the time. They keep giving more and more tablets. I said rather than palm me off with blood pressure tablets shudnt u be. Checking my arteries u slowing my blood dwn and it's hi to get thru the arteries so if u slow it dwn it won't get to my brain or extremities surely that makes sense. I hope things have worked out for u hun. X

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Gabapentin should come with a major warning.. doctor needs banning lol

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It's a tricky one. It's a effective drug, but it does come with significant side effects, and shouldn't be used lightly. The worse drug I've ever taken is Naproxen, which has heavily damaged my stomach & intestine and could have been life-threatening, that's just a plain old NSAID.

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I had the same problem with Naproxen (Aleve). Never had stomach problems before. I’ve had all sorts since doctor had me taking it 2X daily for back issue. 😡

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Omgoodnesd that'must be what has happened to m. Its damaged my gut and then 25 courses of antibiotics has really done me over

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How much gabapentin are were u taking and how much have u reduced?

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Hi, I sympathise with you as I was taking Gabapentin 3600mg daily for 5 years after being diagnosed with CRPS following surgery. As other people have mentioned, the higher the dose, the longer the time frame it is to come off it. It took me around 6 months, doing it very gradually until I am not on it at all now thank goodness. I could not function at all on it after 2 years I was still getting horrific pain. It is a case of trying different meds to see which one suits you as it is different for everyone. I now take mst/oramorph over a 24 hour period and this works for me. Pain clinics and specialists in pain really have more information at their disposal to help chronic pain sufferers like us so I urge you to push for this, if you have not already done so. I live in Wales , and after 6 years have eventually been given a appointment at UHW to see a specialist Doctor in CRPS. Hope you get the help you need, but sadly we do keep having to push for stuff! Let me know how you get on. I lost my mum around the same time as my operation so there is all the added emotional upset as well to deal with.

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ask for yur bloods to be done check your vitiamin D. and your B12. all the best 2 u.

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and B9 (Folic acid), mine got really low on Pregabalin!

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I can't believe your doctor didn't taper you off Gabapentin. That is a horrible thing to do to you.

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Its an act of stupidity,dangerous and just should not happen.Shane on the Dr

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Please have a look at Facebook group “Lyrica survivors”, loads of other people sharing experiences tips advice on withdrawing from these horrendous drugs pregabalin and gabapentin

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Also, please google Dr Scott Reuben- who worked for Pfizer, and for financial gain falsified data in 21 drug trials - pregabalin included. Sadly these made-up data studies are STILL the ones being referred to by our GPS- even though Reuben admitted and found guilty.

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Wow thanks I will have a look at this!! I can only speak for gabapentin, I wish I'd never been introduced to the bloody thing and my doctor so easily increased my dose instead of offering an alternative, I asked for cervical physio to manipulate the nerves in my neck I asked for injections but was told my neck was too severe and had to take 3600 mg a day until I had major surgery in April, it's kinda fixed the discs but now the disc below has crumbled and I've still got severe trapped nerves at c6/c8. Many thanks for your reply I'm going to check out Reuben now . X

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Thats scary,thanks for the info.

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Super scary- and I’m sorry for that. Last thing I want to do is scare anyone. But I learnt the hard way, and just want to educate people, including doctors. Unfortunately so few people know the damage this drug can do, and that it’s case studies were completely made up! It works in such a damaging way- it can’t differentiate between pain receptors and all other brain receptors- so dulls them all down eventually- queue the 120+ potential side effects, all of which I sadly experienced. Yet ALL my 8 consultants dismiss this drug has risks 🤔 if only they have a read up. 16 months off after 3 years on max dose, and still in withdrawal...

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They were sued and had to oay out 2 million but the very next year earned billions, they dont care about our lives as long as theyre pickets r full

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U need to check out this doctor who will say its the pharmaceutical companies. He is an amazing doctor please please

Dr John Bergman

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In the US they have rescheduled gabapentin and Lyrica. And that is because of this problem. It doesn't mean that it's not allowed to be prescribed I don't really know what it does to reschedule it to a higher level.

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I heard only kentucky has it scheduled as a class 5,,,needs to be in a class all in its own

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Do you know if the drugs/ withdrawal are causing the depression or if these are secondary effects?

Over a month ago I was very depressed/ suicidal. I know (from past experience) that I have three triggers: Not being able to sleep, unable to work, and being isolated. They're all directly caused by pain, but pain itself isn't one of them. Although I do think that only treating the pain, and not the whole package has effected me.

Mental health support from the NHS has been a shambles/ non-existent. I am getting counselling through a local charity. Plus my GP has made an exception and increased my pain med's as an alternative to being sectioned.

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This sounds exactly like me, I'm sure the withdrawal is secondary because for two years now I've been unable to work due to chronic cervical spinal stenosis , DDD, inflammatory polyarthritis, trigger finger in 3 digits (op soon for those) had major 10 hour op in April on spine but still need further ops for compressed nerves. Very very isolated and terribly lonely . I also lost my mum 18 months ago whom I saw every single day and cared for until the end. I really don't know whether to go onto another tablet like pregabalin, I don't know whether to ask for anti depressants either my doc very reluctant as he seems to think the NHS wellbeing service will help, honestly it is the worst service ever firstly was signed up to some online thing called silvercloud which was the most hideous thing for treating depression and know I've seen a guy twice who isn't trained at all in any mental health he just advices me on clubs to join and to exercise, I've explained I'm in a vicious circle of chronic pain unable to anything other than light walking , I can't swim as I can't support my own neck , yoga is even too painful. In two years my life has been turned completely upside down I worked full time had perfect health and then out the blue 3 discs in my back began to crumble and it's been downhill very very fast since then! I don't feel there is any help at all I've had no post op physio or help to get back on my feet, I sit at home all day alone 24/7 and I wonder what the point is anymore . I feel for you with how you were feeling and completely emphasise with you , depression is so terrible and there really isn't the help out there for all my difficulties. I agree about just dealing with the pain and not the whole package is a huge problem and just like you I'm filled with pain mess to keep me from completely losing my mind . Xx

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I hear you,everytbing just gets too much.There is no easy solution.

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Gabapentin causes all the side effects ur having, i also had those but lowered and most r gone

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Your not alone jo if it helps I'm on 600 mg max daily dose of pregablin,it does help with low moods that being in pain every day has on us I used to be on gabapentin but changed good luck going forward..alan

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Ok thanks Alan so you'd recommend pregabalin over gabapentin for pain? That's good to know about mood stabiliser too. It's just so darn difficult isn't it being in chronic constant pain and trying to get the right combo and still have some quality of life . Thanks for the reply really appreciated x

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Good luck pal pregablin will stop you getting too anxious hopefully.alan

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No no noooo!!! Do not and i repeat do not start gabapentin. Dangerous drug. Too often prescribed. Gives way too many side effects, then its 1000x harder to stop than an opiod. The wd lasts for up to a year or more. Plz plz google people horror stories wd from gabapentin, which is the same drug as lyrica and pregsblin. Nightmare for every person! Plz trust me on this. Drug manuf wont warn you but they have been sued for millions, USA military banned this drug, ppl committed suicide due to side effects and wd effects.

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Plz listen no gaba, im saving you from misery. It makes more pain. Compromises your nervous system and brain receptors get scrambled when stopped. Plz i will guide ypu to mote stories. Its a horror

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Hi Michelle are you in the u.s?

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Yes I am

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Morning jobates i do feel for you as i 2 on high dose of gabapentin plus co codiodmol.. anti depressants .. duloxetine and still in horrific pain unbearable at times been told nothing can be done only pain management. Like you i do a lot of crying stopping in home not wanting to see anyone not even my loved ones i can't focus on anything they am giving me injections again even tho they only last a few weeks but i can't tell you how much I'm looking forward to those weeks if i didn't concentrate on that only god knows where I'd be xx

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How r things. Look at Dr John Bergman

Watch his videos amazing

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I attended a pain management course in the summer and was told to decrease gabapentin by 100mg every 2 weeks. It's no wonder you feel awful. I hope you start feeling better soon.

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Hi Jobates

Sorry to hear you are having so many problems at the moment. I can massively empathise with a lot of what you say as I have had my fair share of back problems (DDD, stenosis, scoliosis, spondylolisthesis) and have had surgery twice.

I have never been on gabapentin but was on pregabalin for a few years and would never even contemplate taking it again. Missing a dose left me bedridden feeling like I was going to die (and I’m not exaggerating). Took me (and several doctors) about a year to realise it was the pregabalin. Lots of doctors don’t realise the serious side / withdrawal effects of these drugs.

Firstly, you were told to taper way, way too fast. It took me about 2 years to taper off pregabalin and even then it was tough with many horrible effects. Pregabalin and gabapentin are siblings - both gabapentinoids and both work in a similar way. If you do some digging online you will find a lot of information.

I would second the advice of T2F4. I am a member of the Facebook group mentioned (Lyrica survivors) and there are lots of folk on there that have had or are having problems with gabapentin. There is also lots of support and suggestions that might help with some of the issues. The advice in there is to reduce the dose by 10% a month, and to use water titration when you get down to lower doses. May be a bit late for you, but you may decide to go back on a low dose and do it again more slowly. I’m not saying that’s the answer, but it might be.

One thing I will say is that the emotional turmoil you describe is very common when coming off these drugs. It will pass, but it can take some time unfortunately. Just know that you aren’t going mad - it’s the drugs doing it. I am about 6 months post withdrawal now and over most of the obvious issues it caused me. It feels like you will never get better sometimes, but you will. In the meantime you have to be kind to yourself and take each day as it comes.

Doctors not being aware of these problems is another common theme, but there is lots of info in that group that you can print off and take with you if you need to educate them - including Pfizer’s own lists of side effects and advice not to withdraw too quickly.

I hope some of that helps a little.

Good luck.

Ade

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But as health advisers who administer drugs which cud kill u. Is it not their responsibility to educate themselves. U can't convince me that the doctors r not aware of the pharmaceuticals greed for money. It doesn't take a rocket scientist to see what's been happening or at least have a suspicion. Plus the amount of ppl who have complained and reports that have been published.

In England with the NHS doctors r paid by taxes, so the oath they agreed to. It wud seem is not as important as their jobs.

Seriously it's a very dark dreadful place. The brain fog is stealing my life day by day minute by minute. I dnt need need a good momery as there is only me and my little dog. I need to be able to fight back I can't breathe or be bothered to fight, so giving up is inevitable. It's like waiting to die

I have even thought of trying amphetamines or something to give me some quality of life as I feel. B4 I give up this will help me fight back. Get help. Lets be honest the amphetamine isn't going to be as bad as the legal drugs I was perdctibed by the medical ppl I trusted. Gabapentin is worse than any illegal drug, it kills ppl and destroys ppls lives. Yet the ppl who give u this medication dont hang out on street corners or back allys, checking over their shoulder, no the ppl who r destroying lives with medication r given a certificate to provide medical help, enabling them to give medication which will help ppl and their illnesses. I'm sure it wasnt to give medication to mask their illnesses, which in turn also gave them more illnesses which came with the 1st medication and so the individual who they where supposed to help now has at least 7 different types of medication which they prescribed to mask 7 different aliments which has arisen from the first medication they perdctibed them. It's a no brainer.

My son said something the other week that the world will have a public uprising, every country. I said shush u haven't got a clue. Yet now I think there maybe some trurthto what he says.

All I know is there is no illigal drug that will do the damage Gabapentin does.

I'm a different person I never had a days illness only bulging disc in spine, now, I struggle to breathe day to day minute to minute. I'm over wheight i can't remember or focus I cudnt tell u what I do all day its like I disappear inside. Wen I did go out months ago I had d ppl asking cud they help me. I'm 50 never smoked,

Its really sad so sad. If I was an amimal they wud put me out of my misary.

Ppl who I knew think it's not real becoz how can that happen just out the blue u can't breathe and yur always ill now.

The worst is hopelessness isn't a good place to be, we all need a little hope.

I can't remember when last I smiled.

Very sad existence. The only positive, which I really have to search for is (I exist)

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I have all similar issues to yourself Jo and I am in the same situation but only not worked for 15 months. I suffer with depression due to all this... but believe me the gabapentin withdrawal, I would say is making you feel the way you do.. extreme depression. Please be careful when trying pregablin.. it's a similar drug to gabapentin... hence why I said no chance.. Maybe give the patches a try as for me wihout these..I'm on butrans 35mcg ... pain would leave me bedridden.. although I am definitely not jumping in the air it's much more able to cope. How did things go with the doctor today?? Hope your well x

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Ok guys so I’ve just got back from doctor after a long appointment , and a box of Pregabalin!! He assures me these will work better for me but only wants me to take 75 mg twice a day. I voiced my massive concerned and told him how horrific I’m feeling etc and he said it is a combination of gab withdraw and all the stress and pain I’m under, it takes it toll on the body. I haven’t taken one yet but I’m so tempted as I feel so horrific and my nerve pain in unbearable! How do you guys think I’d go on that low dose? I don’t know what to do. I actually think I’m going to be on meds’ my whole life as I’m wired up wrong!, there are some very bad genes from my dad regarding mental health and his side of the family and I do think it does pass on! I’m so grateful for all your replies and without your input over the last 24 hrs I think I’d probably have been sectioned . Love to you all xx

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I'm on Gabapentin (3x600mg), and am on the fence about Pregabalin. It does work and most of the side effects have died down (seem to have switched pain for muscle tremors, don't think you'd notice unless you look for them.. on a bad day). These drugs are strong, and come with significant side-effects. Even Tramadol or Dihydrocodeine is better than Co-codamol. Or a Butrans patch would get ride of the constant ups and downs with normal pain pills. [I'm not a doctor, just have too much experience]

I'm in a very similar situation regarding gene pool (luckily I mainly inherited my mothers side). I'm more concerned that both my grand fathers and my father didn't make it to 60 (largely attributed to alcohol abuse). When I had an educational psychologist access my in college, there was a comment about my sanity (good, just high functioning so I go bored easily). If I'm addicted to anything it's work & fitness.

Chronic pain is literally torture, so it is bound to have an effect on you sometime. People are shocked when I tell them that I envy people with cancer; they get everything fast-tracked and everyone rallies round them. With a condition that most people don't understand (regardless of explaining it), they feel awkward around you - the last few months as I imploded has been a good 'friend test'; I wrote a piece on facebook to 'celebrate' mental health day, and many (including some I forgotten).

Glad to help, plus it's nice to know I'm not the only person going insane.

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I've always been insane and questioned everything. Everyone need to watch zzDr John Bergman watch his videos on YouTube amazing

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Im on 2400mg a day,directed by a pain specialist.Ive decided to drop 600mg a day as i feel i can do this comfortably.I have been warned about the withdrawls if you dont ween urself off them.I feel for you and it feels like hell,a never ending hell.It will pass but not a pleasant experience.Im on 25mcg of fentanyl and an accusation was made about me selling my patches and i was taken off the fentanyl by the health dep,pending an investigation.I thought i was going to die,i went to ED telling them i couldnt handle anything anymore .They said it was extremely dangerous for me to be taken off everything ,im on other pain meds as well,i was given morphine and sent home.The hospital had backed me up,the allegations were found to be a load of rubbish and i have been put on my meds again.Ithought i was going to loose the plot.I am going to try and bring all my meds down to a minimal amount.Ive been on pregabalin,i couldnt function on it.I was in a bad way taking it.We are stuck between a rock and a hard place.We need pain relief but sometimes the risks outweigh the benefits..Keep ur chin up there is no easy solution when dealing with chronic pain.

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Let's see them do that with those expensive hiv/ or cancer drugs... (there is a black market, as with anything of value)

I feel like getting a tatoo "I like Fentanyl, I'm not an addict."

Whilst we're here discussing the side-effects of different medication, there's people out there snorting Pregabaline - it's madness! (it's on iPlayer)

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No oooo so I can sell mine lol joke ppl I wudnt put anyone thru what I'm going thru.

I'm thinking of tsking amphetamine gabapentin has left me with different illnesses I have zero quality of life no energy to fight back so it's either wait to die here or take something to help me fight back and get help

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You tube Dr John Bergman amazing

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Nothing surprises me anymore,its a weird,wild world we live in.

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I have massive issues with fentalyn parches or any kind of pain relief patch.... I don't want to frighten anyone but the reason I don't take them is my 21 year old nephew died in his sleep due to respiratory depression , this was September last year . There was a inquest and they concluded accidental death through misadventure from use of fentalyn patch. He'd only been given it 3 days before 😔😔😔my poor sister in law found her son dead in bed from the evil drug. This is why I won't touch them. I'm going to give the pregabalin a try because I can't carry on like this and I'm terrified of my state of mind at the mo. Sending you all so much empathy for all you are going through. People do not understand one bit because they can't see the illness and chronic pain. If we had a cast on our leg say.. we'd be better understood . It's impossible to even get the specialist to understand what we go through. As my original post was titled .... it's living in hell xx

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Hi, I really sympathise with you and understand where your coming from as Iv been there exactly as you are and sometimes I’m still there. I withdrew from gabapentin abruptly as I didn’t know what they were ! I ended up with an acute anxiety and some depression. I fought the need to try anything else but my mind was a mess and I couldn’t exist like that any longer. When you are in a chronic state the mind needs a break to readjust and so I started oregabalin! It helps my pain about 60percent and the same for my anxiety. Iv never taken meds’ ever but my life was awful, I tried talking therapy, but when the nervous system is wired then it needs some help calming down. Taking pregabalin is a commitment, do not miss a dose. I can get up and go about my daily life, even laugh a little with my grandchildren, I was ashamed to say I needed these meds but if I hadn’t taken them then who knows.

Coming off then is a dufficult task ... one that worries me dramatically. But I’m not well enough to do that yet.. someday I hope. For now it’s the way I am and I needed some help. Be kind to yourself, rest, meditate:relaxation everything helps in a little way!

Only you can decide wether you need to take them or not. Good luck and

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Your doc wants locking up. My hubby is a pain management specialist and they never take people off gaba without transfering straight away to pregabaline. It's the same drug from the same company it works the same way. the difference is pregab is absorbed 90%, gaba a max of 30%. Pregab works much faster so can be used to titrate up and down depending on symptoms. Gaba not so flexible. Pregab much lower dose sp fewer side effects, better pain management, more flexible, less chance of withdrawal (gaba300mg = pregab 75mg).

You have to wonder what some of these medical people get pain for ;) Hope things are better for you now and all those around you who have been going through some tough times. Best wishes :)

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Hey thanks for you valued input and husband knowledge of theses pills that's really very helpful thank you ! I'm so shocked my doctor didn't taper me off gab properly. I started pregabalin yesterday on 75 mg twice a day so I'll see how I get on , I wish I didn't have to take these drugs but my life would be impossible without, I cannot get on top of the pain any other way. Xx

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He should have just taken you off gaba and put you straight onto pregab, no down time needed :(

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Why don't doctors know this I'm shocked I was put through so much hell to the point of feeling suicidle? It's not ideal to be on another tablet from that family but hopefully this preg at 75mg twice a day will help with my peripheral neuropathy unlike the gab. Thanks again for your input x

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2x 75 is still a low dose so plenty of increases left should you need more :) What was your gaba dose?

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3600mg aday I was on that for 18months! X

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75mg of pregab is the same as 300mg of gaba. So hopefully you will get relief from the low dose pregab, because its a bit different and better absorbed etc. But you have upto a max of 600mg of lyrica per day. I suspect a brain frazzle at that dose though. :) But it means you have plenty of future proofing :) xx

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Oh that's good to know that it's equivalent thanks for that. I'm absolutely not going to go above 75mg if I feel it doesn't work I will ask my doctor for advice on something else for the periphery neuropathy, even better I get some treatment for it after my nerve induction test in a couple of weeks! Probably means another decompression surgery. Many thanks for all your brilliant info it's been a great help x😃

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You can up it, I do, up and down depending :) xx

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Suicidal ideation / activation are listed side-effects of pregabalin. Sudden withdrawal can also cause convulsions in non-epileptic individuals. It literally changes the way your brain works.

rxisk.org/kicking-lyrica/

Sudden withdrawal is a really bad idea from any gabapentinoid.

Pfizer have been hit with massive fines ($100m +) for off-label promotion of both gaba and pregabalin, and there is a lack of evidence for its use for many of the things it is prescribed for. It is being used for many chronic pain conditions, without the eveidence to show it actually works - and for those of us that have had bad experiences with it this seems like a borderline criminal act.

All I will say is that if I had known how it would affect me I would never have even considered taking it and never will again. Having RA and having had serious back trouble I have been on many, many drugs over the years. I have had serious adverse reactions to multiple drugs, ending up in A&E twice. But out of everything I’ve had it has been pregabalin that has changed my outlook on drugs, the pharmaceutical industry and the way in which doctors are convinced to prescribe.

I’m not saying it’s all a big conspiracy, but at the end of the day the bottom line for Pfizer is it’s bottom line ($$$$$).

I would urge you to research pregabalin further before you end up on the maximum dose (most start on a lower dose and invariably end up increasing it).

Two years to get off something you hate being on is not pleasant.

I’m not a doctor, and I’m not encouraging you not to take your prescribed medicine, but I really, really wish I had done my research before I took it. The fact that gabapentin made you feel so bad upon discontinuation doesn’t bode well IMHO.

I would also say that I didn’t realise when I was first on it, or indeed until I was totally off it for some time, how badly and in how many ways it affected me even when I was on a stable dose. Reducing it (or forgetting to take a dose) made matters considerably worse. I first forgot to take it within a few weeks of starting it and spent four days bedridden thinking I had the flu or something similar (if you’ve ever had the actual flu you will know that this is not a good feeling). Because I’d only been on it for a few weeks I didn’t even consider that it may be the cause. AND NOR DID ANY OF THE DOCTORS I SPOKE TO. In fact most doctors still look at me like I’m exaggerating when I tell them how it affected me. I subsequently proved to myself beyond any doubt that it was the pregabalin because whenever I forgot a dose (surprisingly easy to do when you are on 10+ different meds taken at different times of the day and your ability to think is compromised by many of them) the same thing occurred. When I took a dose the feelings disappeared.

Good luck with whatever you decide.

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Thanks for your thorough explanation you sound like you know more than my doctor! I have thought long and hard and I'm between a rock and a hard place, I can't bear the pain in my spine and joints and need pain relief I don't know what other choices I have for my nerve pain as I have severe peripheral neuropathy and preg is the only thing on offer after coming off the gab! I am determined to stay on a low dose of 75mg twice a day , the gab keeps up to 3600 mg a day but know I know how horrific the withdrawal is I won't let that happen again. I can't believe doctors are allowed to prescribe such amounts of these awful drugs , obviously if I could get my peripheral neuropathy treated instead of waiting I wouldn't take anything, but I've just had major spine surgery to fix up some of my back just waiting on a nerve induction test to see how bad the damage is!

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In my experience the pregabalin will do nothing for your back pain, or the associated muscular pain. Some say it is effective for peripheral neuropathy, but one of the issues people have when withdrawing is - guess what? Burning, neurological pain that can be worse than what it was originally prescribed for.

I appreciate that when we are desperate for some relief we will try anything, but there are so many people in that Lyrica Survivors Facebook group that have been in your position and ended up feeling worse further down the road, only to improve after a long and painful taper to get off it.

For my own serious sciatic, back and post-surgery (twice) pain the most effective thing has been learning (and doing!) regular stretches, strengthening core muscles, trigger point release and time. All of these things were massively more useful than pregabalin or any other drug for that matter.

Check out the FB group and ask the folks in there, you might be glad that you did.

🙏🏻

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Can’t second this enough @PFKAAde 👏🏼👍🏼

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Unfortunately I don't have Facebook. But thanks for your sound advice I have taken it on board. I do go to yoga twice a week to a very gentle class with lots of stretches and strengthening of core muscles. I take other pain relief for my back the preg is just for the nerve damage I have. I've now had 4 doses and it has worked straight away which is obv good to get some pain relief from constant nerve pain which is horrendous like electric shocks constantly shooting down both arms and legs, but at the same time I'm completely aware I'm setting myself up to fall again in the future, for this reason I'm absolutely not going to rise above 75 mg and see how I get on. I'm very grateful for you warnings and advice. X

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No worries, I hope it works out for you. Not everyone has the same problems with it, and for some I’m sure it helps.

I always find it hard to know what to say regarding pregabalin because after my own experience with it I hate to think of others ending up in the same situation and I wish I had been adequately informed before taking it of the potential side-effects. At least then I could have made an informed decision to take it (or not).

But I am aware of how horrible nerve pain is and how much we want to find something that helps.

Like all medicine it’s a balance of risk vs potential benefits - for me this equation was loaded so much towards the negative that (with the benefit of hindsight) it wasn’t worth even trying it (as neuropathy wasn’t even what it was prescribed for to me), but I didn’t have (or seek out) the information I needed to make the correct decision.

I truly hope it helps.

Ade

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Most of these Drs 'or so called Drs are clueless.Tne mind boggles. Money Money Money,thats what it boils down to in the end. Good luck

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Bin on every drug goin. In the same boat with the pain. I have con endin my life.im a worker & i can't even do that.

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I hear you,been there.Its not living its barely existing.

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Doctors don't care, I may have cancer.all they seem to do is say wait for another scan.my next scan in next year. I have been in pain for over a year.im a lot young than u I don't know how to deal with whatever happens.

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Hey rockstar, you sound really down too, what's going on with you ? That's what this forum is for letting go and talking , I'll try and help/advise best I can . X

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Hope you have a better experience with pregablin xx

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I just hope I can keep on a low dose and hopefully when my peripheral neuropathy can get treated I will wean myself off it in my own time!!! Thanks x

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Ps to help during any withdrawal (and in general daily health)Highly recommend taking diatomaceous earth each morning. Natural supplement, clears out medication residue from gut(which helps get the toxins out your system quicker especially during a withdrawal), among so many other health benefits. Have a read up on it, get it cheap on eBay, amazon etc.

Really good for mental health aswell, the gut is the second brain. If the gut is full of toxins etc from multiple medications, bad diet it’s understandable the brain will struggle. I’m probably not explaining this well (no spoons left today) but highly recommend reading The Mind Gut Connection by Emeran Meyar.

Hope this helps someone 🙏🏼 x

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I've reaseached about the gut 90%,of illnesses hiv some cancers all originate in the gut. They have just found out diabetes has nothing to do with the pancreas it's fatty liver.

Do u have any advice about Probiotics and prebiotics. I live in the UK we r 10 years behind us check Dr John burgman out on YouTube

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Yes i am going thru this too, im sorry about ur mom, that in itself is painful enuf, no one understands what this feels like other than the others here, not even the docs who ptescribe it, its a nightmare, go very very slow in weaning and dont beat urself up, cut urself slack,,none here knew what this was

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Pregabalin is exactly the same as gabapentin it's just a much stronger version so im a bit confused as to why they have u reducing and coming off your gabapentin before starting u on pregabalin?? I've heard the withdrawal is really bad so I would start taking the pres if I were u. I'm on a 300mg at night and a 50mg in the morning. I used to be on 300mg in the morning but they made me feel so wasted and foggy and all I wanted to do was sleep which is great for the night time dose cos it means I get a decent nights kip cos of the pregabalin. Also, gabapentin and pregabalin also enhance opiates so u might notice a stronger effect from your opiate pain killers when your taking pregabalin which is great when your in a lot of pain but if u have been on both opiate and pregabalin or gabapentin for a long time u prob won't notice it. I also don't take my pregabalin every single day to stop the chance of getting addicted to them and then having the possibility of withdrawing from them, so ill take them for a few days then have a day off and I find it works this way plus it stops your body becoming too use to them. Anyway I hope this helps xxx

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i been taking gapapentin for 2months for lupus inflamation after 1 wk i missed a days dose withdrawal was insane after 1 day and i dont think it works well with caffeine im gonna talk to dr about not taking it as for not eating yah losing appetite but im fat so i dont mind lol

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Hi

Just seen your post can relate totally:( hope your feeling better and in the mend now :)

Big hugs

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