Posted , 106 users are following.
I want to start by giving an apology for my doubts towards patients who posted about problems with gabapentin withdrawal. How hard could it be? It has a short half life. It is not an opioid.
My plan was to write about my extremely painful and unexpected withdrawal experience after I felt better, but it has been FIFTEEN months.
I was on 1800-3600 mg /day for 20 years. My physician put me on a six day weaning schedule. The day I took my last dose my pain skyrocketed, but the pain has changed from low back to toes pain, to pain mostly to my anterior legs below my knees. Unfortunately, it is a very slow process. The internal nerve shaking that accompanies the pain is beyond annoying.
I often read patients on forums stating they have no problem with gabapentin. I did not think my problems were that terrible before I went off the drug. They all come with cautions and potential problems. I wish I had known of how difficult this drug was to discontinue before I had ever taken the first pill. I wish someone had warned me.
Good luck to everyone trying to discontinue gabapentin. I hope your experience is easier than mine.
16 likes, 657 replies
DariaVin G.Allyn
Posted
Aw, maan.. I was on 2400 mg for 6 weeks for nerve pain after a snowboard accident. Quit 6 months ago and I feel these pills ruined my life.
A few years back I was on 60-100 mg oxycontin a day for half a year after a car accident. When I quit that cold turkey I suffered horrible withdrawals: Diarrhea, vomiting and chills for a week and a little down the next week as well. But these pills are just so much worse for me. Horrible physical and psychological symptoms for weeks and deep deep depression with no end in sight..
Good luck to you too! I just hope it´s possible to become normal again after this s**t
G.Allyn DariaVin
Posted
I went off morphine ER and percocet before I discontinued the gabapentin. Going off gabapentin was 50 times more difficult.
I don't know how long it has been since you discontinued the gabapentin, but hang in there. The only thing keeping me going is knowing how much I go through each day and I try to tell myself I am one day closer to possibly feeling better. Some days do get the best of me. I feel like each gabapentin prescription should come with free coupons for a spa day and cognitive therapy, because after what you go through, you will surely need it.
I can't tell you how much I appreciate the kindness of strangers to respond to my moaning. Someone wrote they were sending prayers my way. Very sweet and thoughtful from someone I never met.
elizabeth18937 DariaVin
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DariaVin elizabeth18937
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Hey, sorry I didn´t respond, just saw this now when I started researching this drug again. I stopped taking them cold turkey about 8 months ago. Have binged on it on a few separate occasions after that, but it´s well over 3 months since I took any.
Hope you´re doing all right! I´m probably not the right person to ask, cause I still feel these pills ruined my life. Never had any real issues with my mind and always bounced back from other drugs in my past. But now I feel down every day, only getting release from meditation, working out, sauna, steaming room. Doctors say I´m a hypochondriac and psychologists either says I´m horribly depressed or that theres nothing wrong with me. Personally I just hope a year or so being healthy and abstaining from everything mind-altering will help me get normal.
v2806 elizabeth18937
Posted
hello Elizabeth,
I've managed to be free of this site prescription for about 2 weeks now.
the last 300mg,i opened up the capsules and remove half.however In doing that,i took half In morning and half at night for 5 days.i stopped the half at night,then carried on taking half a capsule for another 5 to 6 days.
it's hard,but I stuck it out.i am slowly getting better and not feeling so depressed now.i also felt ask.if my skin was crawling,but that's gone now.
don't just stop that last 300mg.....halve it and try like I did.
I got from 2700mg to being off it in a few weeks I think I'd sooner suffer the pelvic pain rather than taking gaberpentin.
Good luck.let us know how you get on.youre almost there
lindsey62332 DariaVin
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diane80014 lindsey62332
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I not sure if I have talked to you before!! Just wondering how much and how long you were on this if you don’t mind!! I took 900mg for 3 months and I swear it almost killed me!! I have benn off for approx 17 days and still have itchy prickly skin, blurred vision, muscle weakness, insomnia you name it I have it! I’m also wondering if this will ever end! Weaned off Drs way! I read so many different answers of how long this withdrawal lasts! Are you still fighting this?
DariaVin lindsey62332
Posted
Ye, I had a bunch of side effects and also all kinds of horrible withdrawal symptoms. Pain in the upper shoulder, tingles in chest, muscle cramps, low memory, hot and cold flashes, nausea with vomiting, anxiety with constant heart palpitations, flu.. All these went away after a couple weeks, my only problems now are depression and emotional issues.
I´m certain there is end in sight, hang in there! Read a lot about quitting Gabapentin/Pregabalin/Phenibut, seems like some people suffer hell and others nothing, but it gets better and better + the brain does a great job repairing itself
mary25674 v2806
Posted
I started tapering in July, after 7 yrs of 900mg a day. Last month I was cutting my pills in 1/2 and 1/4"s to just licking my finger in the powder. Quit Nov 17, it's been hell, but I get some good day, then bad. But seems to be easing up. This has been a hard last 3 days. My daughter, 40 yrs old lives with me, so I have help and moral support. Which I now has made it so much better. Good luck everyone, kept believing
jackie98686 mary25674
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I wish I had known about all of this BEFORE I was perscribed this. No wonder it has recently been changed to being a controlled substance. I was perscribed it for Neuropathy, and just found out it is also perscribed for BiPolar patients, though the Trazadone and paroxatene was doing fine. When my neuropathy got worse my dosage went up, that's how I got to 3600mg daily UGH!!! I'm not TERRIFIED of staying on and even MORE terrified going off. I live alone and I don't think I could go thru the horrors described by all of you. I don't really know what to do. I also have fibromyalgia, unfortunately Lyrica didn't work for me, but who knows, THAT could have ended up being just as dangerous. Maybe we ought to ALL start a class action suit against the maker of gabapentin for NOT warning us, and add the doctors to it as well.
diane80014 jackie98686
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Why do you want to go off of it?Are you afraid of what could happen long term? I was on 900 mg grams for 3 months! I went off because I had horrible side effects! I guess I’m just wondering why you want to go off! I know it scared the hell out of me! Some people have been on it for years! I heard Lyrica is just as bad! I’ve never taken it! You are on a high dose to me anyway! Gabapentin will never be in my life again! I believe you said your not terrified to be on it! Not sure if you meant you are terrified to stay on it!! Good Luck with what ever you decide to do!
jackie98686 diane80014
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Hi Diane, I did not know about these horror stories from the rest of you and was not aware this was a controlled substance until quite recently. I suppose it's workiing for some of my issues, but I DON'T like taking a drug that is this HORRENDOUS coming off. It scares the willies out of me. Had I known about all of this years ago, I would not have ever gone on it to begin with. I hate taking meds to begin with, but this one really has be freaked. I thought the only CS I was on OCCASSIONALLY is my opiod which I RARELY take, I wanted to make sure I never got addicted. How was I to know GP was WORSE. I'm expecting something wonderful to happen soon and I don't want to be poisioning my body with this garbage. It's like I WILLINGLY poisoned myself for the last 6 or 7 years. I'll be talking to my regular doctor about changing my script so that I can try to go off of it slowly. VERY slowly. 50mg every 4 weeks then when I get down to just 600, he can then change it so I can get the capsules that I can continue with the dosage. UGH what a NIGHTmare!
diane80014 jackie98686
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I didn’t know gaba was a controlled substance! The way I was feeling then watching YouTube videos scared the heck out of me! I was basically a basket case! Really still am! Do you have any side effects from it?? I wish I would have researched it before I went on it! From now on I will research any drug they put me on! Drs don’t tell you everything that can happen! They need to start listening to us the patient! I don’t want to scare you! I can only tell you what I went through when I was on it!! I think my dr who said she didn’t know why I felt so bad when I told her all my side effects! It was the only new med I was on. I am so angry that she threw me on this with out knowing what was really wrong! She said it was for pain! I would have put up with the pain if I would have known what this drug would do to me!! I have heard through this forum to do it slow! I think my dr weaned me off wrong! I figured she should know how to, but I don’t think they do! Let me know what your dr says if you don’t mind! Good Luck!!
jackie98686 diane80014
Posted
Diane, I guess you can say that even though gaba isn't EXACTLY scheduled as a controlled substance Gabapentin is not scheduled as a controlled substance, indicating little potential for abuse and addiction. However, gabapentin shares characteristics of medications associated with misuse and addiction, in that it produces a withdrawal syndrome and certain psychoactive effects. which is close enough. Here is a link everyone on gaba or thinking of it, should read. https://americanaddictioncenters.org/addiction-medications/gabapentin/ my side effects are drowsiness, weakness,dizziness, instability (walking), anxiety, difficulty with memory, back/joint pain, I think out of the LIST of side effects, I have 2/3 rds
Shewholvs jackie98686
Posted
Hi Jackie, I understand. I was given Gabapentin to help with my depression along with my Wellbutrin. and then a few years later my feet started to burn pretty bad. at that time I was on 600 mg at night. the burning was pretty intense so I would use Tinactin spray to cool my feet off at night or put them in cold water. so I kept thinking neuropathy and I'm not a diabetic. so finally I went back to the doctor and he put me on 600 more milligram at night. my feet had not burned in a long time and I had asked my doctor if I had neuropathy and he said no. so I decided I wasn't taking it anymore and I did not tell my doctor I did not know it was addictive. I had horrible dizziness and nausea and owed just so many things and I was like eight symptoms I could barely walk I could get up to walk along the furniture to get into the bathroom and back I wasn't eating. And then when it happened a second time I was thinking something's wrong should I go to the doctor. So and then I thought wait a minute the only difference made was the Neurontin. So I took one and I felt better that night I took another one period the next day I took another one in the afternoon cuz I started feeling pretty nauseous and dizzy and then that night I took two so the following night I took 3 instead of 4. so I started feeling better. 8 years I have been on at least 600 and then 600 more about a year or two years. So I am still on 900 mg I figured at least I should have 300 mg out of my system name for surgery. I feel really cruddy today But that just might be me I don't know. I want to go down another 300 but I'm afraid to I don't think I could handle all that again. I totally understand you're not wanting to deal with that or go through it because I sure don't ever want to go through that month and I went through. Soma best of wishes and I pray you'll do okay God bless
jackie98686 Shewholvs
Posted
If I didn't have a cat or live alone, I would go to a rehab place and have it reduced by people who HOPEFULLY know how to get me off of this SAFELY! I don't really trust that my PCP would know how to do this correctly and safely and at this point don't want to go back to the Dr. who did this to me. After reading so many of these posts, it seems dropping 50mgs every 4 weeks seems to be the safest way, I definitely need to pray on this and perhaps ask the Great I AM for help. I am just afraid to do this on my own with no support system other than here. Thanks for your prayers, I need them!
diane80014 jackie98686
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diane80014 jackie98686
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Shewholvs jackie98686
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Oh I do agree with you. We should have a suit., today is one of my bad days from trying to go off of the Gabapentin. I'm still taking 900mg a day been off 300mg for about 7 weeks. I get so weak, dizzy, nausea and more. I have a house to clean and I can't do it today. But I know if I go back to 4 of the 300mg a night instead of 3. Im just so tired of pills. I've been losing weight from all of this. Because being so dizzy and nauses. I also find I burp alot even if I don't eat. It's a mess. I do get shaky the weakness is horrible also. Yes we need to do something. Thank you
jackie98686 diane80014
Posted
I will as soon as I can get to my PCP to let him know that I need his support to change my 300mg capsules to 100mg until I can get down to only 600 then we can change those to a lower dose so that I can keep reducing in 100mg increments. This is going to take a LOOOOOOOOOOOOOOONG time for me to be able to do this slowly, and I'm PETRIFIED in NOT stopping and IN stopping. UGH Never going to another neurologist again!
diane80014 jackie98686
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Shewholvs diane80014
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I know the feeling this is one of my bad days where I can't eat I'm very dizzy really weak. I will ask him because he is the one that put me on this extra 600. prior to that my psychiatrist put me on the first 600 to help of my antidepressant. I did not have any problems or side effects from taking it except for the weight gain. I'm tired of taking so much medicine I just decided I wasn't going to take it anymore which was my mistake without checking first. So I'm praying each time one of these bouts hits me that I'll make it through getting completely off 300 I have not had 7 weeks I guess. I'll definitely keep you in my prayers I know this is one road I wouldn't wish it on anybody I am 63 years old and I don't think I could take much more. I don't know what these facilities are like that help wean people off medications I'm afraid I'd probably be there very long time. but I do wish you the best and just remember none of us walk this path alone. God bless!
diane80014 Shewholvs
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Thank you for keeping me in your prayers! This has been the longest and worst road I have ever been down!! I told my pcp that there will not be another gaba put in my body! It’s funny how I have talked to 3 Drs about my side effects and withdrawals symptoms and not a one of them would admit that it could be the gaba! My pcp told me oh the gaba has to be out of your system! Maybe but my brain and body has not healed yet! I hope everyone of us on here gets through this nightmare! I wish you all the best!
jackie98686 Shewholvs
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If you are a born again Christian remember this scripture I can do all things through Him who strengthens me. 14 Nevertheless, you have done well to share with me in my affliction. philipians 4:13 and I offer this scripture to ALL of you who are going thru this hell. Keep your strength and remember that we can do this with HIM who created us. God Bless you ALL! <3
Shewholvs jackie98686
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Shewholvs diane80014
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Hello Diane I pray that you can back to a safe place in your life. I'm not so sure about me and I'm not so sure all these effects are from the Gabapentin I want to say they are because I'll be down in a week then up because I'll be down in a week then up maybe a week or two and then I'm back down to being dizzy and to not being able to do much because I can't stand up for long periods of time. I would think at least the 300 mg would have been out of my system by now. but I will say this is way too much for me to handle. thank you for your kindness I send you many prayers and blessings.
jackie98686 Shewholvs
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I just created a schedule to get off of this which I will show to my Dr. as well as give him a copy of the schedule. Since I take 900 mg 4 x daily, and dosages come in 600, 400, 300 and 100 I will every 4 to 5 weeks reduce 100 each time. it will take 34 weeks for each of the 4 times a day so 136 weeks. About 2 1/2 years to get off completely, but with the carbamezapine to counteract, maybe as it gets down to the last 900 once a day, I might not have as many side effects (GOD willing). Whatever it takes I'm getting out of this mess and horrors to come.
Shewholvs jackie98686
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Jackie98686, I pray that this works out for you. I'm trying really hard and then I think the 300 is out of my system and I'm doing alright milligrams that is. then about two weeks later it hits me again. I have so much I have to do I cannot be down. I'm going to try separating my 900 mg which is 300 at a time. for instance one in the afternoon 1 in the evening 1 at bedtime. maybe that will help if I see a difference I will be happy because this has to stop I will continue to keep you in my prayers and I pray that you don't have to go through what I'm going through I feel guilty my husband works so much and then he has to come home and help me get the house in order because I'm too dizzy that I can't stand very long. so prayers and blessings to you please be careful. God bless
diane80014 Shewholvs
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I guess I am confused, but that is nothing new after being on gaba! Are you still on gaba? Just curious! I have been off over a month and I am still having problems! I hate this horrible feeling I have everyday! It’s getting to the point I hate life! Well I have no life this med has ruined it!! Some how this evil drug really needs to be looked into for all these off label uses! I pray we all get through this mess! Good Luck
michele51746 Shewholvs
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jackie98686 Shewholvs
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I spent HOURS yesterday planning a schedule to reduce my intake of the nightmare drug. I'm going to print it out and bring with me to my PCP. My scripts will have to go from 600 to 400, 300 and 100's since my dosages are exactly the same 4 x per day, I'm going to work on 16 weeks to get rid of 400 mg. Then go to the next phase 2 and do the same until I am at phase 4 and it is ALL gone. I will be praying for help from my Savior for it to be done safely and effectively. I'm sick of the nausea, memory loss, tremors, instability yada yada yada. I need all of this to be GONE, even if it does take 2 1/2 years
jackie98686 michele51746
Posted
AMEN! My favorite scripture Phillipians 4:13 that's where I put ALL of my faith in. I created a schedule and not sure whether withdrawal symptoms are any worse than the side effects, if not I can handle this with HIS help. I want OUT of this contract which I was put into unknowingly! satan you will LOSE this battle.
lisa71388 jackie98686
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Hey Jackie...I too live alone and have a cat (and a dog). Even if I had some one to help with them, gabapentin withdrawal should be slow.....imagine the expense of going to a private rehab facility! It's not possible unless you are quite weathly. Being alone means no support or anyone to watch out for changes you may not notice. I am afraid as I am already depressed, which is one of the reasons I wan to get off of it....I am not sure where all this depression is coming from. I hope your withdrawal is going well.
deebee777 G.Allyn
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tyler_54849 lindsey62332
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Lindsey please help me!
I have been off of gabapentin for 17 days now.. for a few days I felt things in my head were getting better. Since last night my heads gone back to horror.
I don't even know how to explain but reading your post about your mind not functioning right..feeling off in the head like brain damage.. I can't even watch tv because I can't catch up with what's going on!
I feel like I'm completely losing it. My mind & thoughts are not working right at all.. I'm terrified!! I'm just wondering how you're feeling now??
How's your mind?? Is it any better?
Jim777 tyler_54849
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tyler_54849 Jim777
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Thankyou Jim .. really appreciate it. This is just a terrible process..
I want my mind back more than anything! I hope that we both get through this quickly as possible.. prayers to you & god bless
v2806 tyler_54849
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hi Tyler,
I've been off gabapentin since November.its hard,and I've had some side effects too,bit like Deedee I've pushed through the worst part.mine has eased Now.i still get crawling skin and jelly legs sometimes,but it's getting less and less.
good luck in your progress,you will get better soon.
regards vivienne
ann1942 elizabeth18937
Posted
Because of extreme swelling to legs, feet, & ankles my doctor told me to stop taking gabapentin. I've been on it for 20 years. This is HELL. Sweating, confusion, not able to sleep, shaking, nausea, heart palpitations, pain, etc. I didn't think ALL of these symptoms could be a coincidence. Looked online. Nope, wasn't imagining it. Why would a neurologist tell me to go off suddenly and give me no warning? Nope Elizabeth, your're fine it's doctors and meds that are crazy. This is not fun, but I have faith in you. Hang in there.
lucie47312 michele51746
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Billyboy179 tyler_54849
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Billyboy179 jackie98686
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peggy39240 michele51746
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Billyboy179 peggy39240
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Peggy, it's not your fault. You're not a miserable person. Your boyfriend needs to be a protector and understand that what you are going through is, inadvertent, and not by any means your choice. I had/have the same concerns with my wife. I feel like I've treated her completely sub standard throughout this, and feel a mixture of guilt for not being able to control myself and make all these symptoms go away, and resentment for those who forced the drug upon me in the first place. All that being neither here nor there, all you can do is press forward. I've always been an ultra tuff guy. Do my own stitches, splint my own breaks etc. - But even this is something that almost broke me, and I don't know if I could go through it alone. I've gathered a tremendous amount of strength from the testimonials in these forums, and it's helped me tremendously. I wrote in large black market on paper, and posted above my television "It's not you, it's just the gaba leaving your body" it's my mantra now. Have your boyfriend read testimonials and he will see that people have detoxed from heroin and opiods quicker and easier than this. You have choices here and you need to decide what is best for you. 1. Continue taking the gaba, as long as it's beneficial for pain and has minimal side effects. 2. Establish a weaning off period, and mentally and physically prepare for the withdrawals. I know exactly what a mental challenge that is. I will always be here to offer empathy and whatever I can to ease this burden for you and anyone else. Even after I get through this, I will continue to engage with anybody needing support. My best to you and tour boyfriend. I hope you two can weather this storm.
halleymae jackie98686
Posted
I have been on 3600mg of Gabapentin for 3 years since developing neuropathy in my legs, hip to toe. I am currently reducing my dosage to 2400mg.
I have started to notice some of the withdrawl side effects listed on this sight but hope they subside as im going about the reduction slowly.
How are you doing now?
Sincerely, Halley
amy9884 lindsey62332
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v2806 amy9884
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I came off gabapentin last November.i started to feel as if I was getting Back to some sort of normality mid February. It's now mid March,and finally all the insomnia,jelly legs headaches,depression etc are starting to be a thing of the past.
It just goes to show just how much of a hold this awful medication really is. Someone somewhere in the manufacturing of this awful drug is making a fortune out of others misery.
I wish you good luck. don't give up it'll be worth it to be free of it.
It's awful going through the withdrawal symptoms,but worth it in the end. Take care and think you'll soon be free.
Billyboy179 v2806
Posted
Thank you. I'm on day 29 of withdrawals and it feels like it's been a year. Anyone getting thru this should appreciate what its like to feel "normal" when (and if) it passes. I pray to God it's only a few months, and not the year plus that others have described. I don't know if I have the mental fortitude to make it that long
beth47873 jackie98686
Posted
I found under its rarer side effects that it can cause permanent uncontrollable movement disorders.
I have asked myself, “Why did it happen to me?” I’d never taken illegal drugs, never smoked, and rarely had a mixed drink. It only took two consecutive 300 mg doses to damage my nervous system ten years ago.
I’ve had 4 brain MRIs that shows a 5 mm x 6 mm lesion, or a non-enhancing cloudy area on my hypothalamus gland. One consistency in my medical records is, “Gabapentin sometimes causes jerking movements with chronic use, but it resolves with reduction of dosage.” That is true in some cases, but not with a hypothalamic lesion, but now they have decided to call it a cyst.
Recently they conducted an EEG and surface EMG. The neurologist gave me “Orthostatic tremors “ as a diagnosis that means I have trouble standing. My upper body jerking is a lot worse since I can still stand up without assistance.
I hope everyone has a safe recovery from this drug.
alicia21151 v2806
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Rener halleymae
Posted
Specialforces10 G.Allyn
Posted
I went thru fentanyl withdrawal quite a few times years ago. It was 3 days of pure hell a week of anxiety and back to normal and feeling good. I know people on methadone and tell them they are just replacing one addiction for another. I tried coming off of gabapentin. I am going thru some of the same symptoms but it's lasting longer. I don't know what doctors think or care or even know about the side effects. They think antidepressants are a cure for everything . For my money I would rather go thru the opioid 5 day sick than months and months of gabapentin sick. But maybe that's just me.
Specialforces10 DariaVin
Posted
If doctors gave us a script of Xanax for a month or 2 to help us with sleep at night I believe we could quit gabapentin but they just tell us they are short acting and it's the reason why they are so addicting. Are gabapentin and other drugs they do give us any better? They claim these are better because they build in the blood stream over time.
Guest Shewholvs
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G.Allyn Specialforces10
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Some days I feel a bit better, but this long cold winter had been difficult. Since gabapentin withdrawal I can feel a rain or snow storm two days before it rolls in to my area.
I wonder if physicians are playing dumb, or they are truly in the dark. You would think patient feedback would count for something, but patients tend to be considered liars until proven otherwise.
I think we should all complain about this drug. It must have been invented by the devil. My concern is the opioid crisis in the U.S. I fear this widely prescribed drug will be prescribed more frequently. Watch out, there will really be a problem when patients or people on the street try to wean themselves off gabapentin. I say it is harder by 100 to discontinue than any opioid, but that figure is far too conservative.
Hang in there everyone!
babs99203 G.Allyn
Posted
I can't believe I just found this forum. I've been in the Shingles and PHN forums since 10/2017, I've read through most of the posts. I was at 2700 mg and am now down to 1000 mg. I too had seen this type of post in the other forums and thought, yeah, I don't like the side effects, but how bad can it be? Well now I know too.
I'll cut to the chase. I joined a Facebook group called Gabapentin Awareness. I've learned SO much there. Yes, a lot of it's very scary, but much of that we found out on our own. It helps to read actual articles or medical abstracts that discuss these problems. I also remind myself that I may not have as much of a problem as others do.
I've been tapering VERY slowing, 100 mg/month and I even skip a taper, like at Christmas or vacation, when I don't want to deal with the side effects. Some months are worse than others. January and February were REALLY bad but the last two have been a bit easier. Luckily my PHN from the shingles is abating a bit, but right now I'm more concerned about the gab withdrawal (despite that the manufacturers want us to call it "discontinuation syndrome"
is worse than the PHN.
Did you see the NY Times article about anti-depressant withdrawal? It seems most of these meds that work on the brain have similar side effects when getting off them. Yet, the doctors know very little about it and just keep prescribing it.
We're caught by hellish pain and very few ways to help it.
Guest G.Allyn
Posted
I have the same story. Was at 300mg/3x per day total of 1800mg/day. Started my ween in October 2017. I am down to 100mg, once per day at bedtime. This after stopping cold turkey and almost dying I found this thread. Any success goes to all who weened before me who shared their personal experiences and a strong faith in The Good Lord. Ihave felt 100% better this month than any other part of this ween. It was prescribed for back pain and not one Dr has believed my story. I keep things as simple as possible, sleep when I need it. Work with a yoga therapist. Try to eat well.
I have never given thought to what will happen when all the people hit the wall of gabapentin withdrawl. I will begin to pray for all to find their way to this forum and spare the violence this mind bending product could perpetuate. Stay strong, don’t give up and for sure we get a good life lesson in patience for ourselves and empathy for others.
beth47873 babs99203
Posted
I’m glad you found this site, since I also follow Gabapentin Awareness. I didn’t have to wean off Gabapentin since it destroyed my nervous system after two 300 mg consecutive doses in 2008.
Doctors don’t seem to know what my 6 mm x 5 mm hypothalamic lesion would cause. I found evidence that it would cause twitching and jerking.
Most doctors have avoided giving me an MRI review. One movement disorder specialist showed me the white spot that looks like a bright cloud, and claimed that was what the hypothalamus gland looks like.
Jerking movements are a common side effect of Gabapentin, but slow reduction will usually cause them to disappear.
My doctor went into complete denial that it caused my adverse reaction, even though he was called within an hour after it occurred.
I’m glad we have more online sites to find Patient reviews.
I wish you a safe recovery with your taper.
beth97678 babs99203
Posted
Hi babs99203.
I've been taking pregabalin(also called Lyrica in the USA) since starting with shingles in april 2017.What must be noted is the dosages for gabapentin and pregabalin are very different.
The starting dose for pregabalin is 75 mg and the MAXIMUM daily dose is 600 mg.Of the two,pregabalin is supposed to be safer,with fewer side-effects.I'm in the UK ( in Wales),so we don't pay for prescriptions.I've reduced this drug very slowly since last november.
So fed up of the brain fog,forgetting names/where i was in a sentence. The knee jerks were sudden and the arm/hand dither caused me to knock stuff over too many times.The handwriting was getting spidery .I didn't feel like myself and waking up having emptied a whole cup of tea into my lap was no fun at all.I felt very wobbly and weak as though my legs wouldn't hold me up.
I'd reduced down to two 50 mg (12 hours apart) and all the weird physical side effects have gone.Because I've done it so slowly,I've had no withdrawal problems.Today,the doc prescribed me 2 x 25 mg capsules,so I can reduce further and space them out.
Finally seeing light at the end of the tunnel-and minimal pain(more of an itch) from what's left of the shingles.It's taken long enough.
Good luck to those of you who are still struggling with this deceptively nasty drug.Take heart that ,if you are prepared to be patient and do it slowly,withdrawing needn't be a nightmare.X Beth H
babs99203 beth97678
Posted
It's interesting that technically pre-gab and gab have a different chemical make-up (long story, but I happened to meet a biochemist who worked in the drug area at Northwestern University in Chicago. Their lab created Lyrica), but yet the problems are so similar and some people have much better reaction to one vs the other.
This month the withdrawal, or Discontinuation Syndrome as the manufacturer prefers to call it, has been easier. I hope that will continue, but because of the bioavailability of these drugs (how much of the active ingredient the body processes) it actually uses MORE as you take less, some people have a lot of trouble with the last two tapers. But NOT everyone, so I hope I'm in that lucky group.
ryan03175 lindsey62332
Posted
Specialforces10 jackie98686
Posted
Hi Jackie. A law suit of 146 million didn't stop them before so I doubt it will stop them now. Drs. Play dumb so they can deny things in case of a law suit. They are not going to admit a mistake when you see them. I hold the FDA to be just as culpable. They are too busy fighting battles for money the pharmaceutical companies are losing to herbal companies.. The whole system is corrupt. They are already covering up calling withdrawal symptoms discontinuation syndrome. In WOW when people couldn't take the pressure of battle it was called "shell shock". . Then WWII it was called "battle fatigue ". Vietnam it was called "post traumatic stress disorder " each progression a little longer and less ominous. They didnt want public opinion to go against going to war. To me its very alike. I hope the comparison makes sense to more people than just myself.
lynn72382 ryan03175
Posted
I haven’t posted on here for months but wondered what your symptoms are? I have tried coming off the gabapentin but without any success. I have been back on 600 gabapentin, 300 in the am and 300 at bedtime now for 5 months and I am still having the horrible withdrawal symptoms. I wake up every morning and have horrible waves of burning and heat on my face and tops of arms. This goes on for a long time. Once i force myself to get up that subsided but I am left with my face and arms feeling prickly, fuzzy and tingly like my skin is crawling. It intensifies the pressure and pain in my head, which I was prescribed the gabapentin for. It has not helped my head pain and pressure so now I am dealing with that as well as the withdrawal. Most days it is all I can do to get through the day so that I can sleep and get a break from it all. Someone posted somewhere that if you go off to quickly the withdrawal is permanent. My doctor says no, but at this point I am beginning to think this will last forever. I was only on 900 but went down to nothing over a month. I have gradually gone back up to 600 in the hopes that the withdrawal effects would go away but it’s been 5 months on the 600 with no relief. This drug should only be used for what it was designed for. Too many people are suffering from the side effects and withdrawal effects.
babs99203 lynn72382
Posted
Lynn, could part of the problem be the 300 in the am and 300 in the pm? Gab has a short half life so it's normally prescribed as 3 times a day so there's a steady amount in your body. Within about 7-9 hours you're taking 600 mg, probably on an empty stomach (I have to take mine with food to lessen the side effects). Then you're going 15-17 hours without addtional meds. From what I've read, the symptoms of withdrawal/discontinuation syndrome may last many months for some people. A lot of doctors don't know that. And if you're going up and down, as you start to increase, it's getting hard on your brain and body.
Look up information about tapering off benzoid drugs or the NY Times article about people trying to get off anti-depressants, we're all in the same boat and they're FINALLY realizing that. Also, I joined a gab group on Facebook that has an incredible about of info on it. I'm so grateful that I stumbled across good info so I went slowly 100 mg/month. I do get some problems, but not as bad (usually) as it could have been.
Sadly, we often have to do our own research and turn to each other, as doctors are clueless...
Guest lynn72382
Posted
I was on 300mg.....3 times/day, totaling 900mg/day. First I had the doc give me an order for 100mg capsules. I started my ween I 10-17. First I took 100mg off my mid day dose kept 300mg for am and pm. Did that for 3 weeks then down another 100 mid day so 300 am and pm, 100 at midday. Then 3 weeks and midday was eliminated. Next I took 100 off am dose to = 200mg in am and 300 at night. And I continued slowly and only refused when my body would achieve homeostasis: no hot flashes, no nausea, no sever anxiety, heart palpatations, no increased pain, no sever depression and ability to sleep. Then and only then would I take another 100 off. With every reduction came all the withdrawl symptoms all over again but as I got closer to the end I’d have about 5-7 hard days rather than a whole 2-3 weeks of it. My last reduction was poring out the capsule dividing it leaving half for night. I’d put it on my finger and lick it off. I kept a daily record because my mind was so foggy that I simply couldn’t remember if I took it or not. I would put my next dose on the legal pad and only document as taken if the capsules were gone...unbelievable my mind became that low functioning. The only thing that helped me was movement which was very hard do to a very bad back. I worked with a yoga therapist doing chair yoga and also PT. I forgot to mention that my body would lock up so hard and my movements were Parkinson-like oh and It was a challenge for me to breathe. I had to re-learn to exhale properly. I was so scared, at times I really believed I was dying and surly would have if I had no faith in anything greater than man could offer me. Today I try to eat well, sleep when I need it, and move my body mindfully. I have to be careful not to get over stimulated or overheated as both make me a bit nauseated and this sets off some powerful anxiety. I have a humanitarian for a PCP now who gave me a low dose of Xanax to help with sleep and anxiety which I had zero withdrawl from when I stopped taking it. I was on Tylenol 3 for Pain which when stoped I had no withdrawl just increased Pain. I rarely take even ibuprofen anymore as I’m pill shy now as it’s my belief we know more about the fillers in the food we feed our pets than the fillers in the medications we take. There is No reason....none to put a person on this mind, soul, and body bending product for pain control under the false guise of it being non-addictive and the only choice for chronic nerve pain. We are all different and this is what worked for me. This forum is where I learned about safe downward titration of this product. It was a dark lonely walk at times but I just moved around as best I could, prayed a ton and practiced patience as I didn’t want a perminant movement disorder as that was the scariest part for me. I had several days that I couldn’t even walk but I’d move my arms and legs. Sometimes my head would roll back and forth, so until I’d get to homeostasis I never rushed my dose. For me my body and emotions/mind would dictate the pace. Thanks to all who share!!...that’s how we have validation and gain knowledge. I received no validation or support from the medical community but rather implied Gabapentin abuse. That should not be capitalized....it’s a generic!....even the computer seems to be under its spell. Idiot drug....Wall Street owns our current medical model. We practice on humans and are skipping the mice and rats. It’s legal to give Humara at 2 yrs of age in the USA...dare goggle that one. Listen to the commercials and all the “mights”. No time for resting on our laurels and assuming Dr knows best/ the Drs hands are tied and most are brainwashed, few share with honesty just how scared they are also.
So hang in there. This can be done. I have no symptoms of depression or hopelessness anymore. I believe the experience has taught me the hard way about patience, the importance of faith, and the importance of optimal physical strength for any given malody. Keep on very slowly and I have faith you will beat this and move on with your life as a stronger person than you ever thought possable. You’ve got this!!!
Patproto Guest
Posted
That is a lot to have gone through in only 6 months and have come out the other end! I can't tell you how happy I am for you!!!
I started my wean off 3600 mg in August 2017 having no idea of the severity of tapering. I tapered too quickly the first month but since have been reducing between 8-12% per month. The anxiety is new in my life but the depression is overwhelming. From the minute my brain wakes up, even before I open my eyes, I dread life. I know what makes me happy and I force myself to do all those things... I force myself to get out and walk around the lake in this beautiful town I live in, I force myself to do my Pilates, I force myself to see my trauma therapist. I have a wonderful partner, I travel to Greece for the summers, I have a great life but this black cloud that has moved in and settled in my head just won't go away. I have no desire to see anyone though I forced myself to take a road trip to Vegas this weekend. It was great to see family and friends but I can't seem to find anything to get me out of this funk. My daughter is visiting me tomorrow for a week, I should be happy! I still have a long road, I'm currently at 850 mg which I take in 3 doses, and at a 10% taper I won't even be at 100 mg in one year. How does one get through this?
babs99203 Patproto
Posted
Pat, from what I've been reading you're doing it the proper way at 10%, that's what I happened to decide last January when I was at 2700 after going on it in November of 2016 for shingles. I did some research and found the info, now I've read more that supports it. I'm so sorry the depression is still there. For some reason, after months of it at a higher level of gab, mine finally disappeared. I too had to start seeing a therapist as it was so bad. I also look out ahead and wonder when I'll be off it, but what Talk2him was actually way too fast. The symptoms he had were because of tapering too quickly. 10-25% over a month is the recommendation. Due to the bioavailabilty of the drug, if you're on a high dose like 2700 or 3600, if you drop 300 that month, you'll do OK. The body at the higher levels only uses 60% of the drug, as you drop, it uses more, screwy, I know.
I heard the suggestion that when you get down to 300 mg, just stop. It's hard, but rather than trying to titrate even lower, just go through the misery once. They say 300-200 , then 200-100 is miserable and this way you're only miserable once! Yeah, it sounds scary to me too, and I've got a ways (currently at 1000) to go before that happens. There's also water-titration, where you dissolve the capsules in water, then decrease the amount you take that way. There are videos about it.
Isn't this absolutely insane!!?
Guest Patproto
Posted
That’s exactly how I felt. Like I was observing and behaving as best I could. I gave all the people in my life like 4-6 gabapentin capsules to keep for me should they find me on the floor in a shaking fit or unable to talk, they all new to open and drop under my toungue or even rectally but under no circumstances short of a cracked open head, busted hip or simular tramma of an urgent nature. Then all knew to fallow and be in charge of giving me my schedualed dose...not leaving it up to ER staff and that help me relax knowing I wouldn’t be treated and tested for everything except gabapentin withdrawl. I had to fake it until I could make it. Friends and family also knew to ask me if I missed a dose if I started acting weird. If I wasn’t sure....I’d take it. That’s what led to writing down every dose and time and date. Side notes on days I felt really bad. I’d slow/stop and stay at that dose until I felt it level out and then down again and make myself do things being very careful not toget overstimulated because I’d get sever anxiety. Took and still take a ton of walks. When I got off I felt 20yrs younger. I prayed everyday for God to help me know that it wasn’t me, it was my brain recovering. Never stuck, just slowly recovering. I smiled just so I wouldn’t forget how and made a decision that this stupid product was not gonna take me out God willing. It is lonely going through it but don’t give up. You may find a good amount of recovery coming the less you are on.....never know, I did. Hang tough and only go as far as your body and mind tell you that you can go. Wish I could implode every last bit of this stuff off the earth but I cannot. Hang in there and you’ll have this year behind ya and be free
Patproto Guest
Posted
You have given me hope that there is a light at the end of this very dark tunnel!!!! I just want to feel like me again, not this anxious, depressed, irritable, miserable, hopeless, despondent person I feel like I'm watching from outside my body. The other day my friends referred to me as the 'Fun Pat'. I forgot she ever existed and worry that she will never return. But thanks for the hope!!!!!!
Patproto babs99203
Posted
I'm happy for you that your depression has disappeared, I keep waiting, especially since I'm doing it the right way and from what I've read the symptoms shouldn't be this bad, but everyone is different.
I read that was once you get down to 100 mg to cut it cold turkey, hadn't read about going cold turkey at 300 mg. The reason I want to get off this drug is because my memory issues really scared me. At first I referred to myself as 'a dumb blonde' (no offense intended), but then it wasn't funny any more. I got really scared!
My doctors deny everything, I don't even bother to consult with them any more as they want me to get back on the Gab and can't understand why in the world I want to stop it. Even my pain management doctor who claims she has CRPS told me to drop 600 mg at a time. I looked at her like she'd lost her mind. I don't trust anyone anymore except this forum and the Facebook groups I'm in.
Good luck to you and we'll keep in touch through this once-in-a-lifetime journey!
babs99203 Patproto
Posted
Yes Pat, the memory issues may be the worst (well until something else throws me). What helped me was a FB post from someone who said her daughter dragged her but to a neurologist to get checked for Alzheimer's. The doctor said you don't have that, you have Gab Brain! Eventually she got back her memory. I'm having a REALLY bad problem this month with it, today more than other days. But I didn't sleep well last night (not gab, hubby to the bathroom at 5:00 am) and if I have that several nights in a row, my brain gets really bad. I wish I could take you to the other side of the depression. I didn't realize how bad it was when I thought I didn't have any, until the switch just turned. I had Post Partum Depression and it was the same thing, which I think is rather unusual. For the previous months, I figured I had some depression, but it was manageable. Then one day, I was really down, and was frustrated and despondent. A friend called and I couldn't stop crying. She kept talking to me, she'd been there herself, and suddenly, I felt better. BUT she also called to get me to see her therapist, the sun started to shine, literally, I forced myself to get out more and try new things and then I saw the therapist. But until that brain snapped back to "being me", I don't think all of that would have made as much of a difference. It WILL get better. What about vitamin D? For some people it does help depression. I would NOT got on any more drugs, but that's a different story. Take care, and yes now that I FINALLY found this section instead of just shingles and PHN, I'll be here. However, maybe we need to start a new thread. It gets really hard to follow all of these. Sometimes my computer jumps around because of all the ads and I can't find the message.
Specialforces10 Patproto
Posted
I have skipped my middle of 3 dose of 600mgs. My hands shake a bit but my mind is already alot clearer so it's worth it.
leenz lynn72382
Posted
Hi lynn,
Currently experiencing the same head pressure. Having nuts in my diet arereally helping me with this. I take crushes almonds (skin included) on some food and/or unsalted pistachio's in little bits through the day. Hope that helps
sandra29227 diane80014
Posted
I have been off Gabapentin cold turkey for about a month. My last prescribed dosage was 3200 mg per day, although I abused it and took much more than that. The irritability is so bad, I can barely get ready to leave the house and go to a meeting. I can't do it every day.
nathan27219 jackie98686
Posted
colene53357 elizabeth18937
Posted
The first time I had to stop taking gabapentin,I was pregnant. I thought I could just stop taking it. Big mistake. I think the worst advice on here is to halve the dose. I forgot to take my nighttime dose last night and woke up with severe muscle pain and weakness, anxiety, palpitations. I thought it was because I was craving opiates. It was THAT BAD! One dose.
When I tapered off, I did it SO slowly. Like 100mg a day for a week (ex. 1100mg instead of 1200mg). It took a few months, but saved me from all of the horrible withdrawals. You can have seizures so bad that you can die! I didn't go down in dose until I felt normal again. Eventually I took 100mg every other day, then stopped completely.
marie89364 colene53357
Posted
I'm completely off the Gabapentin. 16 days now. Sleeping last night horrible leg pain. Didn't get much sleep. Am ok now. Just some tingling. Am eating watermelon. Heard it was good for withdrawal.
leenz marie89364
Posted
marie89364 leenz
Posted
garnella24377 G.Allyn
Posted
leenz marie89364
Posted
jo17776 DariaVin
Posted
I’ve had depression through my teens and after my eldest child (he’s 16 I’m 38)
No post natal after my youngest (12)
I took myself off anti d when pregnant with youngest never been back on them
Was on Prozac
5 yr ago hurt my back prescribed gabapentin
Was taking codeine too 30/500
Slowly progressed to 3 year ago
Stopped work
Too painful to even bend
Was on 3600mg gaba a day
Weaned myself the phauraceuticals 7 mth ago to 1 month and a week ago
Still feel like I’m going through a mental rollercoaster
Have no desire to even live most days
Trying tho!
Good luck everyone
If anyone has any tips or wants chat ...
Patproto jo17776
Posted
Jo,
I've been calling it Crazy-in-my-Head and a Mind F@%k!
August 5th will be one year I began tapering from 3600 mg. After 9 months I decided to stabilize at 800 mg on May 1 cause I couldn't take the Crazy any more.
Now I don't want to advocate other stuff, but I'm like you regarding the anti-depressants. Everything I read said that they will not help through these withdrawals as another part of the brain is being affected but a friend convinced me to just try it. Well I started Escitalopram (Lexapro) a month ago and I have found myself again. I feel sane, actually wake up happy, I almost don't even want to say it out loud cause it's been a year since I've waken up without demonic thoughts in my head.
I considered doing a reduction in my gab this morning as it's August 1 but I think I'm going to wait another month before I do it. I've realized I have to commit to 2 years of my life to getting off this stuff, but in the end I know it will be worth the slow taper.
I wish you luck!!!
alicia21151 Patproto
Posted
Hey Y’all, I have been on oxycodone for 3 years but about 4 months ago I weaned myself off of it. I was up to 5/30’s a day and still in pain with no life. I was tired of the doctor appointments and the drug testing and all the red tape. My clinic counted pills and drug tested everyone each visit about every month or every other month. Anyway besides that I was just tired of living on pills. I had gabapentin prescription but rarely took it but when I went off of the Percocet I took the gabapentin to ease the withdrawal symptoms. Now I am stuck on the gabapentin. I have neuropathy to begin with so I need something for that and now when I try to go off of the gabapentin my feet have horrible pain. I think if my feet didn’t hurt so bad I could get off of that stuff. I have always said I hated gabapentin even before I knew it was so evil. Before I was referred to a pain specialist (pill mill) by my doctor every doctor I saw pushed gabapentin. Gabapentin was the answer to all my problems l suppose. I had one Neurologist who did not push pharmaceuticals at me. He told me to get an herbal supplement called Butterbur and take it with Ribaflavin. Those two herbs are for neurological support. You can also take Valerian Root for anxiety and nerves. I am trying these things to slowly wean off of the gabapentin. I haven’t been doing it long enough to give you a report but I will let you know my progress. In other words, I haven’t really been able to make myself get started good on a routine of weaning.
Oh and one more thing I take Lexapro antidepressant too. It does help.
Well I’m praying for all of you guys to get off of this junk and feel human again. Good luck to all. ??🤗
michele51746 Patproto
Posted
God bless and Godspeed. You have found a good place mentally. Your body has told you when to begin again. This is a ling hard road. You're doing so good! Prayers.
michele51746 alicia21151
Posted
marie89364 alicia21151
Posted
Hi Alicia, thanks for the info on Butter bur and Ribaflavin. 2 herbs I'm not familiar with. I will try them and perhaps we can compare. Valerian also for anxiety.
I got weaned off Gaba. It's been 2 mnths now. Anxiety is getting worse not better. I have tingling and numbness in both calf's and feet
Very annoying. I don't know if tingling is coming from withdrawal or from the back surgery which I had 18 mnths ago. I take no medication. Only take vitamins and herbs.
Thanks for sharing your knowledge. Good luck.
Marie
G.Allyn garnella24377
Posted
Hello,
I just spotted this and wanted to explain why I have been absent after starting this topic almost a year ago.
I was so thankful for everyone who provided feedback, told of their experience on gabapentin, described their own withdrawal horrors and offered support and prayers.
Someone wrote telling me that my physician did not make me go on gabapentin and I had the ability to go off the drug at any time. This is why I stopped coming to this site. Perhaps, I am wrong, but I think patients on this 'gabapentin problem section' deserve not be judged by people that do not know someone in terms of their country of origin, their injury, medical history or legal situation involved with their medical issues.
I live in the U.S. and there is a huge opioid problem. Physicians put so many patients on gabapentin and insist you stay on it for extensive periods of time. I complained about side effects for decades. I finally defied my physician and refused to continue on gabapentin.
This was one of the best decisions I have ever made. It is almost 2 years and 2 months since my six day wean off the drug gabapentin. I never thought it would take so long to start feeling better.
I don't know what your "withdrawal" symptoms have been, but I had burning, severe bilateral leg pain, nerve shaking and eye pain. It hurt to wear socks. It even hurt to apply mascara.
Everyone is different, but my pain intensified while on gabapentin and it got worse for a time after going off the medication. Since I was on gabapentin for 20 years, it did take a long time to feel better.
I am finally feeling better. Before I was either stuck inside at home or bedridden. It is embarrassing to admit, but I lived in my p.j.'s for 10 years. I was stuck in bed so much and was in so much pain, it didn't make sense to change into clothing and change back. I did not have the energy and my pain was severe.
Finally, I can get out of bed in the morning and get dressed for the day. I can drive short distances, do light grocery shopping and even went out to lunch with my husband the other day. We may take in a movie this weekend to get out for our wedding anniversary. This all may not sound like a lot to some, but after being stuck in bed and in the house for many years this is a big change for me.
Sorry this is so long, but I wanted to update all of the supportive, kind people who wrote to me. I wish everyone luck and hope they feel better very soon.
michele51746 G.Allyn
Posted
marie89364 G.Allyn
Posted
Thank you for sharing your experience of withdrawal. Sounds like you had a really rough time and I am so glad your doing better. Happy Anniversary to you and your husband. I can identify with some of your withdrawal symptons
I was on 200 mg a day of Gabapentin for 14nths. Am off it now I think 3 mnths and am still experiencing horrible leg pain, my nerves are still shaking at times and I still have blurred vision. The tingling that goes on in my legs from the knees down drives me crazy. What a horror this drug is
I know eventually all this will pass
Take care of yourself
I'm glad you made it.
Patproto G.Allyn
Posted
G.Allyn, I am so happy to read some good news. You're strength shows in all that you have been through and come out the other side with your head held up high!
Congratulations!!!