Thursday, October 1, 2020

My Gabapentin/Neurontin Horror Story

On top of my experience shared here, Hurricane __________ (fill in current Greek name) is heading to Louisiana. So far, this is our ___th (fill in blank) named hurricane this 2020 season.  Since we finally, after 25 years here without one, shelled out $900 for a generator, I am certain we will not have another power outage.  We had 15 days powerless, so hence, the generator.

This is my personal experience taking the drug Gabapentin for over 8 years.  I was originally prescribed the drug after a back surgery where the surgeon damaged my sciatic nerve (the reason for the surgery was that I had a tiny chipped bone, shown on the x-ray, pressing on the sciatic nerve causing severe pain...) .”Simple, 15 minute surgery,” said the lying surgeon, “and your sciatic pain will be gone!”  I woke from the surgery with more serious sciatic pain AND ever since, my right leg and foot is numb. (I developed a limp which caused my left knee to go bad necessitating a total knee replacement.  Two years on and the knee pain has never abated.  It’s like I’m carrying a bowling ball in my knee).  I never got the feeling back in my leg/foot although the surgeon insisted it was temporary.

The Neurontin (brand name) - Gabapentin (generic name) did help the burning nerve pain at first.  Over time, the drug became less and less effective, but it helped me sleep.  Nighttime is hell, when the pain is the worst, therefore the insomnia.  Many times the doctor tried to drastically up my 600 mg per day dosage. Shockingly, the pharmaceutical companies recommended doses are 1500 to 5400 mg per day.  The pills come in 100, 300, 400, 600 & 800 mg doses.

I thought, how hard can stopping Gabapentin/Neurontin be?  It has a short half life, five to seven hours.  It is not an opioid, narcotic or a benzodiazepine, right?

Gabapentin, an anticonvulsant, was originally used to treat ONLY two things:  seizures and severe pain from shingles.  

It is now, in 2020, being prescribed (off label) for bipolar disorder, neuropathic pain, diabetic neuropathy, complex regional pain syndrome, attention deficit disorder, restless leg syndrome, trigeminal neuralgia, periodic limb movement disorder of sleep, anxiety, depression, migraine, insomnia, drug and alcohol withdrawal.  Gabapentin has become a “catch-all” medication (Prescribe it for everything!!!!) due to the uncertainty around its exact mechanism of action.  Still, despite the common practice, off-label prescribing presents deadly serious dangers to the millions of Americans taking these medications.  I speak from experience.

According to an article in “The New York Times” in May, 2019, “ One of the most widely prescribed prescription drugs, gabapentin, is being taken by millions of patients despite little or no evidence that it can relieve their pain.”

I seldom come across comments on patient forums stating people had no problems with Gapapentin/Neurontin.  I didn’t think my problems were that terrible before I tried to go off the drug.  All medications, of course, come with cautions and potential side effects, which, ironically, are under the heading:  less common.  That’s a joke.  In January I saw a video on YouTube of a younger woman who had been on Gabapentin for almost 20 years and was thought to have Dementia.  Her family was in the process of institutionalizing her when her close neighbor/friend suggested it might be the Neurontin.  Turns out it was the Gabapentin destroying/fogging her brain.  It took her over a year to get off the high dose she was on and then for some of the adverse effects to slowly dissipate.  After two years, she is still experiencing withdrawal symptoms...

This drug was highly recommended and prescribed to me by a neurologist and a pain management “doctor”.  Neither warned me of the drug’s dangers, not once.  My pharmacist never warned me of the dangers either.  I wish I’d had an inkling of how dangerous, difficult & psychologically damaging this drug was to discontinue before I had ever taken the first pill.  I wish someone, anyone had warned me that it damages the brain.

Consider yourself warned!

Do not ever, ever, ever take Neurontin/Gabapentin/Gabarone/Gralise.  If you value your brain, do not take this drug!  It basically, over a short time, made me feel like a zombie.  I felt like I was sleepwalking through my life.  I contemplated suicide often.

Below are a FEW of the side effects I experienced over eight years taking the drug for severe neuropathy pain in my legs and feet. I can’t recall all of them because...memory loss.  It helped the pain for a while, but at far too high a price... Gabapentin is being widely used to replace opiates when, in fact, it is a thousand times more dangerous.

My ‘come to Jesus’ experience was this year, in a rare lucid moment, when I picked up a book and couldn’t read it because I’d read one paragraph, then forget it, or not comprehend what I’d just read.  I normally read a book a day and have for over 40 years.  Now, I have to listen to audiobooks.  I’m avidly praying my concentration returns once I’m done slowly titrating myself off this hideous poison.  I’ve been told that some of the withdrawal symptoms last up to two YEARS.  Just this week, I had a scary, panicked feeling that reality, without Gabapentin’s numbing effects, was crushing me...I had a serious panic attack and took a second 100 mg dose that day.  I’m trying to be kind to my wounded, battered brain.  It’s hell getting off this toxic shit.  I’ll say that over and over...

The side effects I experienced, every one listed here, came to me GRADUALLY, over time, not upon first taking the Gabapentin.  I was shocked when I began making the list:

Mania, intermittently 


Red, burning feet

Weight gain (I gained over 30 pounds that stuck like glue no matter how healthy I ate.)


Brain fog


Lethargy (Severe)



Weakened muscles

Swelling in ankles & hands, intermittently 

Severe stomach upset


Blurred vision

Memory loss, short term


Balance issues





Suicidal thoughts 


Auditory hallucinations


Pain in back (Oh, the irony)

Concentration issues


Hot flashes



Unusual bruising

Runny nose

Chronic cough


Dry eyes





Skin crawling

Red, hot ears

Strangely, the withdrawal symptoms have been eerily similar to the side effects, the insomnia being the worst, then the feeling of reality crushing me.  Some of the less serious side effects are lessening after several months of slowly titrating, thank God.

My first attempt to cut down my low 300 mg twice per per day dose almost killed me.  I, wrongly, tried cold turkey before knowing the dangers of doing that.  I went 5 days with not one wink of sleep.  No one believes me, but I would lay in bed, eyes closed and not sleep.  It was terrifying.  During this period I had hallucinations, visual and audio.  I “saw” someone shining flashlights in the window.  No one was there.  I “heard” doors being slammed and loud, clanging sounds.  I had a seizure.  

I stopped the withdrawal experiment immediately because it scared me, horrified me, which led me to start researching the drug.  That’s when my doctor poo pooed my “imagining these side effects“ and encouraged me to UP THE DOSEAGE!  No shit, the idiot wanted me to take more of this poison... I refused to let him up the dose and he refused to lower my dose to the 100 mg capsules.  Most patients are on up to 5400 mg per day which is pure abuse!   But low or high dose, the withdrawal is as acute.  I’m down to 100 mg per day using water titration and it’s taken me months to drop down very slowly to avoid more withdrawal, but, make no mistake:  you will experience withdrawal no matter how slowly you titrate or how low the dose you take.

I wanted to post this to warn others of the extreme dangers of taking AND stopping Gabapentin/Neurontin, which should not even be on the market, in my opinion.  It literally rewires your perfect brain, sadly.  Hopefully, very slow titration will help my brain to uncross the fucked up wiring caused by the Gabapentin.  

And, trust me, the doctors and pharmaceutical companies can care less.  I highly recommend reading Gabapentin patient forums and articles on the dangers of this newest panacea, money maker for big pharmaceutical. Pharmaceutical companies are all about money, not individual patient care.  

Doctors are no longer treating chronic pain patients with safer, lower dose opioids.  Instead, they’re pushing this dangerous Gabapentin poison on people in severe chronic pain.  It’s a travesty and a living nightmare.  Your brain and your entire nervous system become everything, in a nightmarish way.

In ten lifetimes I would never have taken this shit if ANYONE had warned me that it could cause Dementia-like symptoms over time.  There were days when I couldn’t remember what happened the hour before.  It was horrifying.  I’m just happy (but still in severe withdrawal misery) that I had a moment of lucidity and the strength to decide to stop taking it.  Most days I feel like I’ll never get my functional brain back, but then I’ll have flashes of memory that I thought had been lost...and it gives me hope.

Suicide rates in chronic pain patients are skyrocketing because they’re desperate to STOP THE PAIN!  There’s an excellent documentary on Amazon titled, “Pain Warriors” about the needless suffering of chronic pain patients.  Another travesty...  

I am among those harmed by new, draconian pain management “guidelines”.  I recently quit my pain management after 8 years of being treated like a criminal drug seeker (for two low dose Percocet in the end, which, by the way, gave me little relief for only a few hours).  It just wasn’t worth the harassment.  And yes, I was seriously harassed by my little pain management doctor, may he burn in hell.  

He had me on a working dose of medication for many years...which gave me my mobility, enabled me to go to the gym, grocery shopping, cook, clean house and have some semblance of a life...all gone now. Today, I can barely walk to my mailbox to get the mail... Then he got busted, investigated, whatever by the DEA for overprescribing.  Not to me, for sure, but to others.  That’s when individual patient care went out the window and robotic prescribing by a government chart (his story, not mine) started.  WHY?  To save his sorry, greedy ass from losing his medical license.  He’s not suffering but his patients are, greatly.  I know this from talking to dozens of them in his waiting room the past few years.  And he is one of only two pain management doctors in my area and the other doctor does not accept new patients.  I feel cornered and helpless...

I’m thinking of trying medical marijuana, recently approved in tincture form only, in my state.  The Catch-22 here is that it’s not covered by insurance and is exorbitantly expensive for someone in my well-below-poverty-level income range:  $250 for the doctor (dealer, really) visit (many visits annually) and up to $150 per month for the “medication”.  I’m conflicted:  do I stay in constant, debilitating pain or cancel my cable, lower my already low grocery bill, stop using heat to lower the electric bill, etc. to find the funds to do it?  I’d be paying roughly 24% of my total annual income...for a bit of pain relief.  That’s criminal when I was getting major pain relief for under $40 per month in pain management before the doctor’s criminal issues.  I may try it for a month to see if it even works.  I’m skeptical, but hopeful.  I can’t go on living in the level of pain I am in.  It’s almost unbearable...

Note:  Lyrica is also in the “GABA” family of drugs.  Be very wary of taking it, too. 


PhilipH said...

That's horrific. Truly awful. I'm so sorry that you've experienced the terrifying effects of this 'medication' - so-called.

Can but hope your careful withdrawal is continuing without too much pain and distress. I wish you well, as soon as you can. Philip x

Marion said...

Thank you, Philip. You are so kind and compassionate. This lowest dose is pretty yucky, too, but I refuse to let this poison get the better of me. The nerve pain has returned with a vengeance, but I don’t care. Suffering has become my lot in life, it seems. I appreciate your encouragement very much. xo

Kelly said...

Thank you for this post, Marion. I've considered asking my doctor about this drug, as well as Lyrica. I know both are considered as options for Fibromyalgia. (I have a friend who's taken both and was fine with them) So far, she's only prescribed me a low-dose muscle relaxer which I've been reluctant to try for a variety of reasons.

Funny thing is (not haha, funny) I have a number of those symptoms you've listed without taking anything.... so I'm not sure what the point would be in taking it! I think for now I'll just soldier on, despite the misery.

"I can do all things through Christ who strengthens me."

I wish you well, Marion, and will continue praying for you.

Marion said...

Kelly, I would not recommend this drug to my worst enemy. Please seek anything else but this drug. Doctors consider it the new panacea when, in fact, it’s much worse than any opiate, antidepressant or benzodiazepine. One man said it was harder for him to stop taking than heroin! It didn’t bother me in the beginning, just numbed the nerve pain. The biggest problem/danger is that these horrible side effects slowly creep up on you the longer you take it. I’ve read hundreds of patient forums about Gabapentin and it opened my eyes to the dangers, mainly to my brain. The fact that it causes “dementia-like” symptoms was my wake up call. It numbs your brain to the point that you wake one day and feel like an alien, disassociated from reality.

Now that I’m beginning to get my brain function back, I realize how STUPID it is to blindly trust doctors. Turns out they’re mainly drug dealers for pharmaceutical companies. I’m bitter about it because I lost years, mentally.

Thank you for the prayers. I appreciate your friendship. Hang in there. xo

Snowbrush said...

I've been on Gabapentin for at least ten years, taking as much as 3,000 mgs at a time, and I don't consider it a great pain reliever, I haven't experienced significant side effets. ALL medicines come with lengthy lists of possible side-effects; all psychoactive medicines have newsgroups devoted to their horrors; and most side-effects lessen with regular use. As for opiods being safe--in what universe! I've taken them even longer than I've taken Gabapentin, but I never forget the fact that they're kick-ass drugs with a life-destroying potential, although my worse experience with them has been that they take me high when I take a dose only to drop the bottom out from under me four hours later.

Marion said...

Snow, good for you. I’m glad you have minimal side effects with Neurontin. My Gabapentin experiences are real and debilitating, just like the withdrawal hell I’m experiencing. Opiates were the only medications that gave me quality of life mobility, which I no longer have.

Snowbrush said...

I never meant to question the reality or the severity of your experiences, and I apologize that I didn't make that clear and for possibly, as a result, appearing to lack sympathy and understanding. I only meant to question the appropriateness of suggesting that a medication is inappropriate for everyone (for example: "If you value your brain, do not take this drug!") because while your list of side-effects was accurate, every drug on the market comes with a list that was that long or not longer, and the list of side-effects for Gabapentin are far less concerning than are the list of side effects for many drugs (drugs that can kill a person outright by stroke or heart attack, or else make the remainder of one's life miserable by weakening various organs. 

As for withdrawal, I know how bad such things can be. For example, I stopped a psychotherapeutic drug this summer because I was developing symptoms of tardive dyskinesia. I had been taking the highest possible dosage of the drug for years, and I was advised to taper down over period of eleven months. However, I was so worried about the specter of having an incurable and humiliating illness for the rest of my life that I quit the drug in seven weeks, weeks that I spent feeling as if I was going completely out of my mind. I say this to let you know that I do understand how hard it can be to stop taking a drug.

I also understand the effectiveness of narcotics because even as I sit here, I'm experiencing my first significant pain relief in days due to having just gotten home from having my narcotic prescription refilled. However, to refer to narcotics as safe and to Gabapentin as dangerous is innacurate given the comparative harm that is done by the two drugs. One more thought about Gabapentin. As you mentioned, the drug is for nerve-related pain. My pain is not nerve-related, so I question the appropriateness of the drug in my case. However, if I am in horrendous pain, and I take a massive dose of Gabapentin (3,000 mgs) combined with Ambien and Unisom, I am able to at least get some sleep. I very much worry about putting myself into an early grave by taking so many drugs in such high doses but, as you know, pain is a life-wrecker that can push one to do whatever it takes to find relief. As for the hallucinatory experiences you had, Gabapentin is famous--or infamous--for such things. Fortunately, my "dreams" tend to be good ones.