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.
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.”
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.
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.
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.”
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.
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:
Age of people who have Blindness when taking Neurontin:
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.
Here’s a video showing the exact stick that Pam thought might be a snake when she was going blind on Neurontin.