Prescription Drug Horror Stories : Neurontin: Wife Cannot Tell Stick from Snake

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Neurontin plus Zyprexa: The year 2000

A few days after I read through the complete pharmacology sheets for both Neurontin and Zyprexa, realizing we had a pair of horror stories on our hands, I penned the following handwritten letter to Dr. X, the psychiatrist in Some City, Montana, who had prescribed the drugs for my redhead:

Dear Dr. Kevorkian,

That’s your name from now on. You wouldn’t let Pam out of your wackpittle until she agreed to take the maximum Neurontin dosage of 2400 mg per day. A day later, when her family doctor had us call you on the phone because of the paranoia and other side effects she was suffering from the Neurontin, you prescribed the addition of Zyprexa.

It didn’t take a rocket scientist–just somebody with access to a PDR (Physician’s Desk Reference)–to realize you’d added a supposed antipsychotic drug to one supposedly prescribed for nerve pain. But okay, she and I both know she’s mentally ill. No argument there. We got the prescription filled…and she went totally nuts.

Lost in what she calls “delusions of grandeur”, she hyperextended her knee doing a demo karate kick, something no one with black belt level training (which she has) would do normally. When I was driving 10 mph on a mountain road, she was huddled in fear in the passenger seat, convinced I was doing closer to 100.

And so on and so forth.

Then we got hold of the pharmacology sheets, and I read them more closely, every fine print side effect known to science for both drugs. Of 35 rare side effects, Pam was experiencing symptoms of 25 of them.

She went cold turkey off both drugs immediately, even though that’s not advised. To Pam, poison is poison, get it out of there, and I agree. And yes, she’s better now, though of course without the Neurontin her extreme daily pain has returned.

Better that, she says, than allowing herself to be killed by a Dr. Kevorkian who hasn’t the slightest clue what it means to be a professional medical caregiver. She told you she was doing well on the Neurontin at 1200 mg, half the dosage you required of her, but you wouldn’t listen, would you?

No-o-o, not you!

Please go ahead and put a big red flag on her file now. We wouldn’t let you touch her care again with a ten foot pole. The pole might have Kevorkian Cooties on it.

Can you spell incompetent?!

More sincerely than you can possibly imagine,

Fred and Pam

Unsurprisingly, telling the arrogant head of a hospital’s psych ward that he was a medical idiot did not set particularly will the the fellow so addressed. Only once after that did we have any need to deal with the hospital in Some City, an effort to get Pam some pain relief after she’d broken a wrist or ankle or toe or something–she was always breaking something.

We told the on-duty M.D. up front, “Please disregard the psych file with the big red flag on it. Dr. X didn’t much like being told his real name was Kevorkian.”

Which wasn’t really fair to the real Dr. Kevorkian, whose mission was to assist those who wanted to commit suicide.

What? Did the guy in the ER give her any pain med prescription?

Oh, Hell, no. Of course not. After all, she’s a crazy bi*ch. Said so right there in the file the doc was consulting.

His body language told us we were right about one thing, though: Dr. Kevorkian (Some City version) had put a really, really big red flag on her file.

2400 mg of Neurontin helped Pam's pain greatly in the year 2000, but the side effects were horrific.

2400 mg of Neurontin helped Pam’s pain greatly in the year 2000, but the side effects were horrific.

Neurontin without Zyprexa: The year 2013

Thirteen years after swearing never to consider taking Neurontin again, Pam did in fact reconsider. Her doctor had asked her about Lyrica, to which she’d responded, “Not only no, but Hell, no! Lyrica is Neurontin times two!”

Which it pretty much is. Lyrica was designed to be a “more powerful version” of a nerve pain helper in the beginning. It has so many scary side effects that I recently filled an entire 9″x12″ sheet of drafting paper with them–more than sixty in total.

Our pen pal friend, currently lodged in a prison in Georgia, had been offered Lyrica for a messed-up shoulder. She had to sue the prison to get them to admit (a) they’d messed up an earlier surgery on that shoulder, (b) well, yeah, they did operate on it after all (which they were denying prior to the lawsuit), and (c) okay, it would be a good idea according to the new MRI to get that bone spur out of there before it grows right on into that major nerve cluster…

…but she’s no dummy. She shocked the doc by saying, “Let me check with my family first.”

Guess he’d never had a prison inmate–maybe never had any patient–turn down “free drugs”, no matter what they were.

We researched it online (Lyirca) and told her, no, don’t go anywhere near the stuff.

Following which they offered her a drug Pam does use and has used for the past 15 years, an old school muscle relaxant that works without crossing the blood brain barrier. In other words, it works where it’s supposed to work but does not mess with your head.

Lyrica side effects? Too many to list here, including erectile dysfunction–which made our friend laugh when I read that one to her. Super-frequent horror stories related on the Internet include memory loss, loss of teeth, weight gain, stroke, palsy, severe headaches, shaking and sobbing uncontrollably…just to name a few.

Basically, more than any other horrors, people who had used Lyrica and then quit using it reported that they main problem is…your brain goes away.

And sometimes it doesn’t come back.

One 20 year veteran of prescription drug use stated,

“This one (Lyrica) messed with me more than any other med I’ve ever taken.”

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Back to Neurontin.

Pam worked out a deal with her doctor. She’d try Neurontin one more time, but this time on her own terms: She’d start at 400 mg per day, working up to a maximum of 1200 mg per day, half of the amount that had messed her up in Montana, if it felt right to do so.

Awesome.

By the end of the first week, she was next thing to ecstatic. Her pain levels were still “up there” a bit in the early mornings, since she did not take any Neurontin during the night. But during the day, taking 400 mg three times a day, she was getting enormous relief. Her pain levels were down to totally managable for the first time in more than a decade. Her emotional balance was outstanding as well; prior to trying Neurontin (2013 trial), she’d been battling a bit of depression. That was gone.

One beautiful Saturday, she even showed off by freestyle dancing in our combo living room / kitchen, grooving to a CD on her Bose stereo system, her body purely oozing the willowy, atheletic, gymnastics-powered moves that had been her trademark for the first 47 years of her life.

But then…

Somewhere around Day 11 on Neurontin, she began reporting vision problems. We did not immediately connect this to the Neurontin usage. My beloved is, after all, known to be at risk for both cataracts and glaucoma. She’s due for her six month checkup with her eye doctor, as soon as we get around to making the appointment. She would certainly bring this up with him.

By Day 14, however, it was clear this could not wait.

“It’s not as bad in the mornings,” she told me, “but by late afternoon, I can no longer tell if I’m looking at a snake or a stick.”

Uh-oh.

We talked about it for a while. I remember clearly, I was right here, in my office chair in front of the computer. She was standing by the north window…and then, at some point, it hit me like a bolt out of the black.

Not blue. This was too serious to be a bolt out of the merely blue.

“Do you think it could be the Neurontin?” I asked.

She got it. One thing about my Pammie, brain demyelination or no brain demyelination, when she gets it, she usually gets it in a hurry. She didn’t like it, but she got it.

If we were right, if it was the Neurontin that had in a matter of a couple of weeks taken her to the verge of being legally blind at the end of a 3-pill day, she might be able to get her vision back in short order. That was the good part. The bad part was that along with the vision would come the pain, both the physical pain and the emotional imbalance kind of pain from which she’d had such a brief but blessed vacation.

Once again into the breach, cold turkey.

The pain came back before the vision did. Naturally. Not only that, but the vision returned so slowly that for the first several days off the drug, she wasn’t sure it was coming back at all, or at least not all the way.

On the fifth day off gabapentin (Neurontin), though, she experienced ye olde double barreled whammy:

The drug detoxed out of her in a rush, producing stanky diarrhea fit to condemn the entire septic system, but her eyesight also started coming back into focus.

“It’s still not quite where it was at night,” she told me today–Day Eight off Neurontin and the first day her detox diarrhea has been manageable without prescription butt-stopper, “but it’s getting there.”

Great choice, eh? Go ouch or go blind, take your pick.

The truth may or may not have set her free, but the truth has let her see.

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Okay, so, what does the official pharmacology say about Neurontin vs. vision problems? Are they mentioned at all? Eh?

Glad you asked.

The eHealthMe website cites a few Neurontin statistics:

On Apr, 3, 2013: 53,225 people were reported to have side effects when taking Neurontin. Among them, 278 people (0.52%) have Blindness.

Gender of people who have Blindness when taking Neurontin:

Female 53.96%……Male……46.04%

Age of people who have Blindness when taking Neurontin:

60+…39.23%

In other words, (a) Neurontin is known to cause blindness in some people, and (b) Pam was in the highest risk category by gender [female] and in by far the highest risk category by age [60+] when the blindness hammered her in the head.

The most amazing thing we’ve found to date is the number of prescription drug users who report serious side effects in online posts…and then go on using the drug that’s killing them.

Human nature. Some of us are squirrels, and some of us are nuts.

 Is it a stick or a snake? If you're on Neurontin and going blind as a side effect, you may not be able to tell.


Is it a stick or a snake? If you’re on Neurontin and going blind as a side effect, you may not be able to tell.


 Before she got off Neurontin, she could still tell a bunny was a bunny...with the right eye only.


Before she got off Neurontin, she could still tell a bunny was a bunny…with the right eye only.

Here’s a video showing the exact stick that Pam thought might be a snake when she was going blind on Neurontin.

6 thoughts on “Prescription Drug Horror Stories : Neurontin: Wife Cannot Tell Stick from Snake

  1. I have severe neuropathy first had sign of it at age 23 I am now 41 and it just gets worse every year throughout the years. I was given neurontin my first drug to help with the pain, but I had so many problems with this drug I had to be hospitalized to counteract the reactions and to detox of the medication. I have been on every med for this problem throughout the last 18 years, 7 yrs ago I went on methadone to stop the lightening strike pain in my feet and hands it does work but reguires the dose to go up every couple of years since the pain and dose get used to each other. I also just started Cymbalta for extra pain relief and to help the hypersensitivity of my skin, no body can touch my skin it hurts so bad, my poor hubby can’t touch me anywhere without me crying in pain, clothes have to be soft, don’t tap me or hug me it causes great pain. My diabetes has never been under control even though I take my meds (insulin) and this why my neuropathy is so bad. I understand what your Pam goes through, I have severe depression, problems with allergies to drugs or having issues with the side effects. I will end here, I found you today and can’t stop reading your stuff I wish I knew you and Pam in person although I thought it was funny I do know a married couple that their names are Fred and Pam! Thanks for all you write.

  2. Wow, Kerie…age 23? And Pam thought she got hit young when all her “stuff” started coming down on her head at age 48! I never realized methadone worked for neuropathy, though Pam undoubtedly knows all about it; she was a pharmacist at one time and understands more about prescriptions meds (including the dark side) than most doctors. Working all of the other challenges along with diabetes has to be tough. Pam is borderline diabetic, but not on insulin; she’s been able to get by without that so far.

    I’m sure Pam would like to know you, too. Hanging out and helping other people is her very best therapy. And the “thanks” for my writing is appreciated; feedback really helps keep a writer going.

  3. Thank you for your post, I’ve been on nerontin for a little over a year now. I’ve put on 35 pounds, my husband swears its from the nerontin, my vision is VERY messed up but I had taken many beatings in my eyes from my ex-husband so I just assumed my blurriness was from that, and mine is also more in one eye (my left). I had never thought there would be withdrawal from it tho.. Thank you for this article. God bless..

  4. You’re welcome, Lori. Thanks for commenting, and best wishes for your health going forward.

  5. Thanks for writing a colorful story about the stark reality of chronic pain. The joke is on American citizens who are fighting over health care bills and politics. It really does not matter whether it is affordable or not, when the medical system itself lacks professionally qualified doctors and medical staff.

    This huge scare tactic over treating pain because of boot leg drugs proves we are in trouble. As a society we let our kids play sports, which might set them up later in life for chronic pain. What will it be like in 15 more years? How will doctors prescribe pain meds for people who spent years on the soccer field as a kid, spraining and straining their joints, and ligaments.

    The qualified professional days are over, replaced with uncertainty and fright over prescribing meds to get people back to work to support families. Instead of demanding affordable healthcare, America needs to police the pharmaceutical lack of accountability. Where are the great chemical minds? What is being done to guarantee safe effective meds for this affordable healthcare?

    Where are the alternative pain options? Is anyone exploring how better to suit a painful chronic problem that does not involve meds? Not that many pain “specialists” that will be free with those cortisone injections which is a miracle for inflammation.

    Now tramadol will be an end of life med? Pharmacies are now getting prescriptions sent in from doctors for an overdose nose spray if he gives his patients tramadol. It cost $300 by the way, not covered by insurance.

    We are a nation of people who will lose work, vigor and health if the crisis continues. Suicides will go up as people lose hope for chronic pain options. GP’s are taking patients off of tramadol without proper dosing down advice by qualified “professionals”. But there are none really.

    The health care bill is really a “if you are healthy bill”. A cold, maybe a cramp. Does anyone over 60 really want to navigate the coverage nightmare for cancer treatment? Really? Not me. I have had irritating nagging health irritants and yes pretty non life threatening issues since turning 46. And that has been enough for me at 60 to say take your chemo and shove it up your rear delicate doctor genius.

    I am ok with that… I recognize life pretty much hits the skids when after 7 years you still cannot find a doctor to understand a knot in your foot that causes a lighted match sensation but no diabetes connection exists. I know I get lousy healthcare, despicable even.

    Neurontin will be the next drug on the late night tv commercials advertising the attorneys who are willing to make you a file folder in their class action lawsuit. I have never been able to take it 2 straight days. I have a spouse who has changed dramatically on this drug, but already had cognitive issues and now resembles a young alzhimers patient. He refuses to allow that this drug has any ill affect on him. I am being adversely affected by his use of neurontin because he controls our finances. He belittles me constantly and clearly in cognitive decline. It is also a genetic predisposition for dementia, so it is the worst case scenario. He has chronic pain, as I do, but my use of tramadol makes me a drug addict in his mind. Yet when I informed him I would not take anymore for my foot pain, instead finding a surgical solution for it, I was belittled for that. So you can see how I must live.

    Its wonderful to see a spouse so invested in their partners health decisions as I know whatever brain cells my husband did have is being destroyed by neurontin, and he will never be able to even become my power of attorney one day.

    I have tried to turn to a grown son but its useless to think I will get any help with this issue. There is no one else. If I alert his health care workers, then I might as well have bags packed, I could never live with him again.

    He takes a cocktail of drugs at night and my fear is he will be dead till morning. Mixing tramadol, neurontin and ambien. And whatever statin drug he takes. In case anybody wonders, yes, my husband has had a learning impairment his whole life. All this has become obvious as the neurontin use has created even more of it, yet he still works.

    Thanks again for discussing the very evil drug known as Neurontin.

  6. Thanks for commenting with such crisp lucidity. I’m going to take your “DumMummy” user name as your label for someone who know’s “Mum’s the word” and NOT as any indication of lesser intellect. You nailed it.

    And my heart goes out to you. Many of those who know us well are (their word) “amazed” that I am still functional after living for more than two decades with Pam’s physical decline coupled with her longstanding mental health issues–but compared to your situation, I have it easy indeed. My redhead fully owns her condition, appreciates my efforts on her behalf, and is right there with me (and sometimes ahead of me) when it comes to analyzing both benefits and downsides of prescription medications. It’s her belief (and I concur) that one of my aunts, who did not show obvious dementia symptoms until late in life but then went downhill in a hurry and passed last year, died as hard and (relatively) suddenly as she did in part because she was in denial right up to the end.

    As for Neurontin, I’ve personally known a number of friends and family members who got short term relief from the drug, but NONE who have been able to tolerate it long term.

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