Gabapentin Withdrawal Horror
Posted , 180 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.
18 likes, 1046 replies
Bocephus G.Allyn
Posted
Most Excellent Rant!
I feel so relieved that I found these posts today. 25 yrs ago, I was in a horrible motorcycle accident and therefore am pretty screwed up and my pelvis was not put back together correctly along with other issues. I had been on a low dose of hyrdocodone for the past 15 yrs until the rules changed. At that time there were only two places to go for “perscribed” pain mangagement, one of which, I had already been to for injections only and they would not see me for meds. The other treated me like a red headed stepchild and were demeaning and insulting and would not percrible meds, only injections. I went to a differnent Dr., he suggested gaba, claiming that I was addicted to the hydro and if I lost 100lbs I would have so much pain which is true but I haven’t been 100lbs lighter in over 25 years. I began taking 1200mg per day for 1 year. Then last year changed. My husband was diagnosed with throat cancer and had to undergo 7 weeks of intense radiation, 5 days per week. After six months of the gaba, I spoke with my doctor about being more depressed and having trouble concentrating and gaining weight. We chalked it up to the fact my husband was going through cancer treatment. I was switched from Lexipro to Effexor, and also given topomax for food cravings. I was in a fog. Shortly after that, my oldest and closest friend died, another close friend tried to commit suicide(bipolar) and then we had a major hurricane.
Mentally I was exhausted and physically, I was falling apart from not moving due to pain. After gaining 15lbs in two months without eating whole cakes and pies etc. I was freaking out. Up to 30lb gain so far. Then, in January of this year, I woke up one morning with complete double vision. Definately sixth nerve palsy but what caused it? I work doing online research and typing reports! Had to wear an eye patch and it lasted 2 weeks and then headaches from hades. gradually got better but it scared the crap out of me. After 8 differnt MRIs, a spinal tap, heart tests and every kind of blood test known to God and man, the result were, other than being overweight, I am normal. I had tapered and quit the topomax already, next the Effexor and switched back to Lexipro and now the gaba and there is only so much mind over matter can do with that. The burning feet, the sweating, more pain everywhere etc etc etc and its only been a few days of no gaba at all. We can’t be sure the gaba or the combination of drugs caused the double vision but my neurologist agrees that the less meds messing with my brain activity the better. The sixth nerve palsy was definately a nerve issue and gaba is definately a nerve drug. As for taking the topomax also, I don’t know. I can deal with pain better knowing what is wrong that not, I’ve been dealing with it half my life, but this is just wrong. I fear also, that with the opiod bs, that more people will experience problems. Geez, I should have just said No and drank a few beers for pain.
All drugs are not for all people. For all of you that are waking up from this fog as well. Kudos. Please excuse typos.
babs99203 Bocephus
Posted
I'm glad you finally found a good doctor "the less meds messing with my brain...the better", that's extremely rare! First, I had too had 6th nerve palsy, but several years ago when I wasn't on the gab. It resolved in a few weeks, no idea how or why it came and went. However, yes gab CAN cause double vision or 6th nerve symptoms, so there have have been a connection.
As I see you used the word "taper" I'd guess you found some good information on how to safely and slowly decrease the drugs you were on. But no matter what, it's still very hard at times. That was quite a combo of drugs you were on, but that's common with docs. They don't believe they can hurt us, so let's just throw another one at the person. You know now that the problems you were having were side effects of the gab. Unfortunately, those can last for a while even when you've stopped taking the drug. The damage to the brain will heal, you will recover, but it may take a while. I was at 2700 mg 2.5 years ago for shingles, and post shingles pain but am down to 400 mg now. WD and tapering sucks. But my brain fog, confusion, depression etc. decreases every taper (once I get through the withdrawal where it's all MUCH worse).
I agree, I can take the pain better knowing what's going on. Some people find that the drugs can make the pain worse, it's called paradoxical pain, and once the body is healed, the pain is better. I hope that's in your case, but with that much damage, I don't know. But it's something to hope for.
Bocephus babs99203
Posted
Thanks Babs, I look forward to being me again. I got to a point where I didn't care about cleaning up my house, wasn't taking care of myself, didn't care what I looked like if I went to the store, not enjoying things I love to do, like cooking.
Over a year of listlessness , no motivation, concentration problems, deeper depression and then the last six months of thinking something worse was wrong with me has taken its toll but I will get through this. Just knowing that there are other people out there who have had similar experiences is a huge mental relief. I just took a look at the gabapentin awareness page on facebook. Very interesting indeed.
linda88918 Bocephus
Posted
Bocephus, Please join our facebook group "Gabapentin (Neurontin) Sufferers Desiring Change." We are trying to promote more doctor and public awareness of the dangers of gabapentin and decrease the prolific prescribing and hoping for more safe methods of pain management. So many doctors are not even aware of the 2009 Stanford University study that proves Gabapentin prevents the formation of new synapses in the brain -- which is probably why so many people suffer cognitive impairment eventually while on and sometimes even after getting off gabapentin. So many have no idea of the need to taper very slowly and promote damaging effects for their patients or they don't understand it needs to be taken 3x/day to prevent interdose witdrawal. Help us make a difference! Thanks!
babs99203 Bocephus
Posted
Between this group and FB, I've gotten so much helpful information and support. I worked in healthcare for a long time but have become so jaded and distrustful after being given this drug. My trusted doctor was totally unaware of what it could do. Granted, less than half of us, it seems, develops these problems, yet they don't even give us the basic information we need to deal with them if it does occur. I have a bit of a routine for my tapering now, so I can somewhat expect what occurs. I've been lucky that I never did a drastic drop in either amounts or timing, but it was enough to have some bad tapers. Now I take two months or more, which gives me several good weeks, several up and down weeks and then about 3 weeks of bad stuff. A few days ago I was still in that bad period, when it's hard to remember I was every better. Then, within a day, there's an improvement, the second day is better and the third I'm back to the old me. As I'm down to 400, once the WD subsides my brain and memory are SO much better, I'm optimistic, energetic and, well just normal. It will happen, all those things you mention with "over a year of" I've gone through, but in a shortened schedule. You will heal. Have you checked out Benzo buddies, The Withdrawal Project or Inner Compass? They're all helpful, as is Gabapentin Awareness.
Linda, I'm not aware of the group you mention. I'll check it out. I'm VERY interested in get the providers more aware. The info is readily available. It's shocking how many don't even know what's on the patient information sheets that are handed out. They deny the problems and warnings that are RIGHT THERE. I've seen some improvement in awareness, but it's too slow and too many people are being hurt or are even dying.
Bocephus babs99203
Posted
I wish there was some way to put all of our symptoms in a spreadsheet that we **think **may be been either made worse by the gab or induced by the gab to get a commonality link and data base started.
My list:
deeper depression/already taking med
lack of awareness, in a fog/new
no motivation, energy/new
neglect of normal household chores/new
neglect of taking care of myself/new
trouble with recall, articulation, spelling/new
severely increased pain/mine is mostly muscular/skeletal
symptoms of intracranial hypertension/new. It is like you can feel a pulse in your head and sometimes there is rythmic whooshing sound.
excessive weight gain
double vision caused by 6th nerve/new, after 8 MRI, spinal tap , extensive blood work and eye specialists, I am normal
blotchy skin/new
severe swelling of extremities/new
excessive sweating/could just be the change:)
It is just a start, but somewhere, someone has to be keeping track, I would hope.
As more and more people have been given gab in place of their usual pain meds and are new to it, more proactive efforts need to be made.
babs99203 Bocephus
Posted
How about creating a new thread in the gab forum? I've thought the same thing, but technically, you can report it to the FDA in their adverse drug reaction website. That's why the list of side effects changes periodically. I thought of something like a spread sheet. I had 6th cranial nerve,but years before I was on gab, which is interesting. I've known of others who have gotten that. Sometimes (or A LOT) doctors throw out a name, and it's a catchall phrase for a symptom. I didn't have a real test for the double vision, 6th cranial nerve, it was just a "rule-out" of other items and that's what was left. I've not had the last 3 you mention, but the rest, yeah.
I could add another 10-15 if I thought of it.
Ushimimi G.Allyn
Posted
I came here to give hope to all of you struggling with this nightmare drug, and to share my story - with the hopes that if you are undergoing gabapentin withdrawal or cymbalta discontinuation syndrome, you will draw from my story the hope I wish I had when going through this hell.
The short version: (this is not medical advice, but) quit caffeine, alcohol, and magnesium(!). They all effect the same neurotransmitter levels as these awful, awful drugs. Motivational message at the end.
First, a little background - I am a 35y/o woman who has suffered with a sleep disorder and chronic pain for about fifteen years (not including childhood night terrors, which this medicine cocktail BROUGHT BACK).
First, my doctor had me try Cymbalta (duloxetine). Even on a low dose, I threw up for three days straight. Still, he told me to be brave and get through the initial side-effects, in the hope it would help me once I got used to it. The pain came back after a week or two even though the puking stopped, so we went up on my dose. This cycle repeated two more times, until I was near the maximum dose. This went on for about six months. I started to feel a little better, but then the pain came back in monstrous proportion alongside tremendous dizzy spells and vomiting, so the doctor decided it was time to try a new medicine - WITHOUT ADVISING A GRADUAL REDUCTION, I was told to swap to Gabapentin (neurontin).
Big mistake - neurontin/gabapentin is only approved or even tested to treat CERTAIN TYPES of chronic pain - shingles pain, for example. (There is little to no clinical evidence that gabapentin even treats fibromyalgia pain effectively.) Immediately, I started having dizzy spells so awful I couldn't stand, for hours on end. But worse, now, I was having memory lapses and losses of judgement - I forgot my own wife's name, I forgot my address, I forgot how to light a fire in the fireplace. I remembered if I thought hard enough, but any amount of recall was a struggle lasting minutes. I burned myself on the stove a few times, because I would forget what I was doing in the kitchen or have bouts of crippling clumsiness. Eventually, I was almost entirely confined to my room in light all of these symptoms - I was too afraid to try to do anything, even when I could stand on my own power. I did have a few falls.
On hearing this, my doctor (a new doctor, since the first quack tore up his roots and dissolved his practice without any warning, leaving all of his patients in a panic) advised me to stop taking the gabapentin - again without weaning. (and to clarify, at one point I was also on ativan for anxiety and ambien for sleep, thanks to overzealous prescribing: two more drugs I quit cold-turkey on extremely bad medical advice.)
That's when I stopped being a person. I couldn't form sentences for weeks. As silly as this is, I had a Sonic the Hedgehog throw blanket I couldn't "figure out" - I knew what it was, but I couldn't see the whole blanket at one time. I had to take it as individual shapes and colors, one at a time. I had a huge battery of bloodwork, an MRI, and two neurologist visits, and the conclusion was that I was exaggerating, and that there was nothing wrong with me - no sign of stroke activity, no seizures, and no blood disorders or nerve damage. I could function convincingly-well if I really focused, but my brain was malfunctioning so hard I didn't generally even know what I was doing.
Worse, that's when the "brain zaps" started - awful "electrical pulses" tearing through my brain, destroying what few thoughts I was able to assemble through the fog. Often, they were bad enough to be painful - other times, like "hiccups" in my consciousness that threatened to collapse it entirely. I experienced a "brain zap" roughly every five minutes for months. They woke me up at night, they took my legs out from under me, they terrified my loved ones, and they robbed me of any sense of agency, self-control, or hope for my future.
So I lay there in bed, wishing to die but without the strength or motor functions to do anything about it. For days. Weeks. Months. All told, it was three or four months of this swirling nightmare hell with no escape, where nothing made sense and my mind was shattered. I remember bits and pieces of it - mostly when I wake shouting at night, now. It was without any exception the worst thing I have ever endured.
None of this sounds like "hope" yet, does it? That's true. I was utterly and absolutely without hope. My wife was constantly in tears, fighting with doctors and hospitals to try to get me treatment for a condition they told me I didn't have. I vaguely remember the way she looked at me - like she was looking into my casket at my funeral - so bitter and tired and miserable.
I hit a sort of equilibrium where I could function around the house at times, but my memory was so damaged I couldn't usually even remember what month it was. Still, I did some research with the help of my wife and we learned a number of things about neuroscience. Many things affect your neurotransmitter levels - lack of sleep, caffeine, alcohol, marijuana, and most importantly magnesium, which is often prescribed as a way to alleviate these symptoms(!) - and every single one of the medicines I was on. (Please understand, I am not a self-diagnoser, but I was so desperate I would have tried anything to end my suffering. Anything.)
A few theories online suggested that after being thrown out of balance, the levels of neurotransmitters in the human body and brain need time to recalibrate themselves, via the processes of upregulation and downregulation. I thought, "well, I should stop drinking caffeine and alcohol, then." I tossed my magnesium supplement, too, since that also affects your GABA levels.
Quitting caffeine was really, really hard - but nothing was as hard as surviving the incoherent chaos state I was flung into for hours a day...so I quit it. I started exercising when I could - first, just a hundred feet out the door with the dog, with help, to regain some of the strength I had lost to bed rest. Then, to the bus stop next door. Then, to the park at the end of the road. I was dizzy, confused, and incoherent, but I dimly knew it was important, so I did it.
Then, a light at the end of the tunnel appeared. After over a year of misery, I had my first "good" moments. I remember it so vividly. I was standing in my apartment, looking at the bookshelf (I spent a lot of hours staring at things in my broken state, waiting for emotions or thoughts to coagulate about whatever I was looking at, to no avail.) and suddenly, my brain...I don't know how to describe it. Some part of my brain "remembered" what it was supposed to do, and I had an actual, whole thought. I realized I could remember things - my wife's face, what day it was...it was cloudy, but it was there.
It lasted about an hour before I went back "under", but I was so happy I cried, so grateful for even one "awake" moment. It was weeks again before I had another one, but I did. And then another. I kept up my abstinence from /anything/ that my research led me to believe had any effect on these neurotransmitters. I swapped out some red meat for vegetables while I was at it, and started a fish oil supplement. The good moments started to become good hours, and come more often. I got work done on my computer (even if the code I wrote in this state was a spaghetti-code nightmare, I was DOING it).
Now, it's been the better part of two years since I took my last dose of gabapentin. I've kept up my exercise regimen, diet, and abstinence from "trigger" substances - caffeine, alcohol, magnesium. Now, I can walk a mile every morning without serious problems. I can climb ladders again, somewhat. I can cook my own meals, clothe and bathe myself, and (obviously) form complete sentences. The brain zaps have receded to a point where having one is like a visit from a medieval tax collector - infrequent and awful, but only momentary.
Maybe most importantly, I can smile again. I can laugh again. That Sonic blanket is back to being my beloved Sonic blanket - warm and soft - rather than a collection of disparate shapes and strange phantoms. The difficulty walking I suffered for so long only hits me every few days now, and on a good day I can actually go running!
My wife looked me in the eyes tearfully a few days ago and told me, "I missed you." We both cried a little. I told her, "I missed you too."
It's not /perfect/ yet. I'm not at 100%, and I suppose I might never be, even though some moments I question it. I've got some real trauma from the malformed memories that were made while in the "prolonged bad trip" state the discontinuation left me in.
This week, though, I got hired to a new job. I haven't worked in years, but I held it together well enough to land a job.
If you're going through what I went through, please take heart - it does get better, but you have to take care of yourself and hold on for dear life.
My technique was this, in the hopes that it might help you (though this is not medical advice): quit caffeine, alcohol, and magnesium supplements. These are a crutch that will prevent healing. These are a "finger on the scale" for your brain's attempts to return itself to equilibrium. Do what gentle exercise you can - get some sunlight when possible, and try to push a little further than you think you can go (and do so safely).
You are still in there. You are still you. You are not broken. Your mind, your powerful spirit, is being refracted off of a broken mirror right now, but you can put it back together. Believe me - I went through the worst of it, and now I can look back on it like, well, like the terrible ordeal it was, but I can honestly say to you right now that I am getting better and I am myself again, for the most part.
"Long Dark Night of the Soul" indeed.
babs99203 Ushimimi
Posted
Thank you. Thank you for sharing your story, for being detailed and for undertaking the massive task of writing this all down. I'm copying it and saving it for myself to remind me, and others there is light at the end of that tunnel. I've dealt with gab problems for almost 3 years, but NOTHING I've read has come from someone who had such an extreme, appalling reaction to this drug, and others which can cause similar problems. Many people I've come to know are taking magnesium, believing it helps them. I questioned that as I found a few articles which said that it can cause some of the same side effects we get as gab. I'm usually quite willing (ahem) to offer advice and my opinions, but I carefully worded that concern, as I figured I'd never tried it and maybe I was wrong.
I was at 2700 mg in November 2016, now finally down to 300 mg so I'm at the end of this nightmare, but on my hard days, I'll remember this. As I've tapered so slowly and have not taken any other meds, I've had an "easier" time than others. YES to no alcohol, etc. I shake my head at those who use MJ, Kratom or other substances. They continue to have problems and wonder why. We won't get started on the doctors and practitioners who give us this stuff, then question it when we tell them what problems it causes.
You've written in detail of so many problems many of us have had, but seem so odd (your blanket) that it's hard to explain or even put into words. You've done a wonderful service. I have one suggestion. As this thread is exceedingly long and so many things get lost in it, what about starting a new, thread regarding gab where yours can be the first success story? Others can also share their successes, no matter how small they may seem. I tell people, savor EVERY improvement, track them and appreciate them.
linda88918 Ushimimi
Posted
Ushimimi, Thank you for sharing your story! I also had a very difficult experience with gabapentin and have written a book about it in hopes of bringing more awareness. It is so amazing that even 20 years after the Ashton Manual was written, doctors still cold turkey people off of psychiatric drugs! It's abhorent and so dangerous, as you well know. I also started a facebook group that is still formulating ideas and hoping to gather in time, to bring more awareness. If you want to join us, it is Gabapentin (Neurontin) Sufferers Desiring Action. I have links for reporting your reactions to various places. It has also kind of become a support group for people, but was are all trying to help each other and eventually bring more public awareness. I have been off gabapentin for 2.5 years and am doing well also, but the horrendous withdrawal was more that I could have even imagined. Glad you are "back" and enjoying your life again.
linda88918 babs99203
Posted
Babs, I wanted to pick your brain regarding your dealings with political and social groups to see what suggestions you might have for promoting more awareness of the dangers of gabapentin. I personal messaged you through facebook (using my pseudo name), but received no reply. Maybe you would rather not answer, and that's fine, but I just wanted to make you aware of the message in case you didn't notice I sent it. Thanks!
Bocephus Ushimimi
Posted
Yes, thank you for taking the time to share your experience. You spoke about writing code like spaghetti. That is what I was like when I was trying to type narrative reports, my brain would just freeze and I couldn't remember how to articulate or spell words. And for being confined. I was spending over 90% of my day either sitting or in bed, mostly in bed. The pain was so much worse on the gab. I've been completely off about a month and I've had some good days here and there. I even cooked dinner 3 nights last week and for the first time in about 16 months, I was able to stand at the stove/counter without holding myself up with one hand. I described the past month to my sister as the dark dismal fog is gradually lifting. My muscles are so weak from being laid up for over a year that even walking to the mailbox is discouraging but after reading your story, I am more motivated that ever to begin walking for exercise again. After reading so many stories, I know I am one of the lucky ones in that I was only on it for 18 months and yes, I relish and appreciate those good days and try to be as productive as I can. Just getting things done improves the mindset and helps with motivation. I see glimpses of myself once in a while but I know I will get there eventually. Prayers for all who in the same boat.
beth47873 Ushimimi
Posted
I'm glad to hear that you have regained most of your life back after all your horrible experiences. I don't understand why doctors insist that we are exaggerating our symptoms.
Unfortunately, we don't all recover from permanent damage from Gabapentin. It caused me to develop a sudden onset of a jerky movement disorder in 2008. I should have gone to the ER, but I was so humiliated by all of my strange movements and the laughing spells that didn't fit the situation.
I'll never go back to another neurologist or those who call themselves, Movement Disorder specialists, because the last one claimed, "I have been prescribing Gabapentin for many years, and none of my patients ever developed a movement disorder from it." At least she ordered an EEG/EMG with video monitoring. She ignored any results from my rapid teeth chattering, or head and shoulder jerks. I found out later that the doctor who conducted it, is a Professor of Neurology, but he said he would turn it over to the neurologist who saw me. Evidently they only give out partial diagnosis, since she chose "Orthostatic tremors," from my slightly shaky legs.
Three months ago, my optometrist said, "It's time for you to have your cataracts removed." I was also seen by one of the optometrists from the Pacific Cataract and Laser Institute. He was more inquisitive than any neurologist since he asked, "So tell me, did you have any gelastic seizures when these movements began?" I said, "Yes, I did, and every time I had an uncontrollable laughing spell, I asked my husband, "Why am I laughing, this isn't a bit funny!" So he was smarter than any neurologist who should have known about the uncontrollable mood swings that occur during a thalamus stroke. When the hypothalamus is damaged, it will cause a movement disorder. Of course an optometrist can't add any information to my neurological records.
I am happy that you got your life back, and won't take anything for granted, like I used too.
linda88918 beth47873
Posted
Beth, My heart aches for you! I know your story because of a previous site you were on, but I didn't know about the optometrist! You have been through so much that you never deserved to have to endure! Gabapentin is just a very dangerous medicine and people need to know! Since you are no longer part of our fb group, how would you like me to let you know when my book (that includes your story in the last chapter) comes out? I pm-ed you, but I'm not sure you got the message. I miss your dialogue and sincerely hope that someone in the medical field will take you seriously! I know that I do! You are a special person and your courage to tell your story and post your youtube video is to be praised! May God bless you! Please know that I and the fellow sufferers that know your story, care!
beth47873 linda88918
Posted
Thanks for your concern Linda. I have been on this site for quite awhile and prefer it since it's public. I found a lady under the question on this site, "Anyone else having issues with uncontrollable eye movements with gabapentin? She said, "If you go to YouTube and look up "Elease Dystonia Storm, you will see a video my husband posted at the hospital. I know she is worse off than me since I'm not confined to a wheelchair, and even trying to talk, will set off one of her Storms.
I'm also thankful that I was able to make two types of alleviating restraints with my Nifty Knitter so I could wear them during my cataract removal surgery. The surgeon thought just taping my head would hold me still, since he does that for Parkinson's patients. Since they don't provide any other restraints, I showed him my thick neck scarf, and told him about my restraining devices that I made for an MRI. He said, "Yes, bring them to your appointment." I also appreciated that he prayed for guidance before my surgery.
linda88918 beth47873
Posted
That is so sweet that he prayed for guidance before your surgery! Did it go well? I watched Elease's youtube video. Did gabapentin cause Elease's dystonia? You are often in my thoughts and prayers! I think I will friend you on fb and keep you informed if/when we are able to organize a public gathering of our gabapentin group. I'm hoping in about a year we can do that. Yours is an important story when it comes to gabapentin danger awareness!