How a Prescription Drug Nearly Ruined My Life
I have recently pieced together a medical mystery and concluded that the prescription drug Gabapentin, name brand Neurontin, has caused me numerous neurological and psychological symptoms. This is my story.
On Christmas Day, 2015, I invited my extended family over to my home. After a couple of hours, I got lightheaded, dizzy, and began talking nonsense. I couldn't stand up easily and felt extremely confused. My family was concerned and took me to the ER, where the staff ran several tests to rule out a stroke. I was 47 at the time.
A few hours later, all of my test results had come back normal—and I felt perfectly fine. I declined to be admitted as they suggested. My episode was chalked up to stress and it being the first Christmas without my mother, who had passed away six months earlier. I kept looking for her in my confused state and wouldn't believe she had died.
The doctor said with a smile that my body reacts strangely to stress, and I knew where this was headed. I had somewhat of a similar experience in August 2007, except that episode had involved more motor symptoms and had lasted several days. In that case, the hospital staff told me I had conversion disorder, which is a physical manifestation of psychological stress. That made sense at the time, as I was in a very stressful living environment (I separated from my first husband a year later). Ten years out, I can’t remember what medications I was taking at that time. I bring up these two incidents, which occurred eight years apart, because they were both medically unexplained.
Unfortunately, the diagnosis of conversion disorder has followed me for 10 years now, and I'm treated skeptically or even with disdain when medical staff can't figure out what's wrong with me. I believe that has a lot to do with why my unexplained neurological symptoms went undiagnosed until I pinpointed the true cause more than a year later.
Walking on Gabaptentin
I had a few more episodes of sudden confusion and fatigue after the Christmas Day ER trip. After that, all was well until April of 2016. This is when I fell off my bike and sustained a concussion. Although it hurt like anything and I was nauseated, it wasn't severe. In fact, I was in and out of the hospital in two hours. I had problems with my vision for a few months and became mentally fatigued easily, but those are the only symptoms I truly attribute to the concussion.
In June, I started having problems with walking and balance. The spells would last days to weeks, disappear, and then come back. I alternately had to use a cane, walker, or have my husband (I re-married in 2010) hold me up. It seemed odd this would occur two months after a concussion, but that's what every medical professional I visited attributed it to. I was dismissed with “it will just get better.” It didn’t.
I had a normal MRI in August of my brain and October of my spine. While that was a relief because I was starting to suspect MS or worse, it was also frustrating because I still couldn't walk normally and didn't know why. I started physical therapy at a balance disorder clinic in October and attended that for about two months. Although it helped a lot, I still had issues with walking and balance on uneven surfaces. The slightest incline would have me scrambling to stay on my feet.
I still had walking and balance problems into the new year, nearing one year since my concussion. It didn't make sense but there was no other explanation for it. However, things started to take a significant turn for the worse with my mental health. I became deeply depressed, withdrawn, and convinced that everyone hated me.
This went on for about two months. I had struggled with serious bouts of depression in my 20s and 30s and assumed this was more of the same. It didn't make sense with my life circumstances, which were so much better than they were 10 years ago. The one exception is losing my mother suddenly and still struggling with grief at times.
I also became mildly paranoid and mentally confused. I had trouble focusing on my work as a freelance copywriter. On February 27, my head jerked back and I had trouble staying awake in a public place. Odd. It happened again a few days later. Every day throughout March, I had hundreds of involuntary movements of my head, left arm, and left leg. I saw a neurologist who ordered an EEG to rule out seizures. It was normal.
Mind and Body Unraveling
I went to the ER twice in March and was dismissed quickly both times. Nurses said it was non-epileptic convulsions and hinted they were psychosomatic in nature. I was dizzy, slurred my speech, had uncontrolled body movements, tremors, and felt extremely confused by my surroundings. At this point, I was convinced I have Parkinson's disease because it doesn't show up on imaging tests and I have had every one of them.
I turned 49 on March 24 and went out to dinner with an old friend a short time later. She is quite health-conscious and previously worked as a nurse. I wasn't listening as attentively as I could because I have tried diet changes and giving up caffeine without any change in my symptoms. She then said to look up the side effects of my medications.
I was diagnosed with Type II diabetes and neuropathy in the fall of 2013. I have always managed my diabetes quite well. My blood sugar levels have been back in the pre-diabetic level at every follow-up appointment since that time. The neuropathy is a different story. I have freezing pain in my feet, a pins and needles sensation, and shooting pains on and off. My doctor prescribed Metformin for blood sugar control and Gabapentin for neuropathy pain relief. My triglycerides were high at the time as well, for which I was prescribed Gemfibrozol.
We Have a Bingo
I was convinced that my medications had nothing to do with my symptoms, but agreed to research them out of desperation. After all, I had been taking all three medications for 3.5 years. The side effects associated with Metformin and Gemfibrozol were nothing out of the ordinary for me. However, my jaw almost hit the floor when I saw the serious side effects and complaints about Gabapentin that I took for pain and numbness in my feet.
I researched for hours and feel reasonably certain this is the common denominator behind all my issues. The first thing that jumped out at me was trouble with walking and balance. I had been blaming my concussion for a year and couldn't understand why this wasn't getting better. Here are all of the symptoms I can relate to:
- Extreme problems with walking and balance
- Memory loss
- Difficulty concentrating
- Vivid dreams
- Acting out dreams
- Mild hallucinations (thinking my cats were giant rats or that I lived inside a TV)
- Confusion - not knowing where I was or who I was with, confused by everyday sounds like birds chirping, not remembering the steps involved in walking
- Extreme fatigue
- Forgetting common words in the middle of a sentence
- Blurry vision
- Watery eyes
- Mild paranoia (Thinking people who were whispering were talking about me)
- Falling asleep while standing up
- Convulsive episode with my left arm while driving
- Sweats and chills
- Swollen ankles
I was relieved to discover these problems are most likely caused by Gabapentin but also very angry. The U.S. Food and Drug Administration has received thousands of complaints about it and I had no problems finding horror stories. People with no previous history of depression killing themselves due to what this drug did to their minds, permanent memory loss, horrible withdrawal symptoms, and many more.
I was on Gabapentin for over three years and did read the risks in the beginning. I don't recall seeing anything about the multitude of symptoms I experienced. Although I have always been skeptical of natural methods, this nightmare has changed my mind. I'm using a cream for my feet and keeping them warm all day with heated shoe inserts instead of taking any prescription pain killer. I'm fortunate I was only on a low dose of this medication. I read stories of people being on up to eight times as much as I was.
It never occurred to my regular doctor, a concussion specialist, physical therapists, an audiologist, ENT specialist, two different neurologists, and doctors and nurses at three ER visits that my unexplainable symptoms actually had a simple answer. Not one of them reviewed my medications and all but the physical therapists brushed me off as quickly as possible. I understand they are trained to run tests and often don't know what to do when they're inconclusive. I have found that many are quick to prescribe or increase a medication's dosage as well.
Still, I know that ultimately my health is in my own hands. This experience has shaken my world and opened my mind. I'm still struggling with the effects of this drug in my system and just today fell asleep for three hours before dinner. Unfortunately, it's made me less trusting and forced me to take on more of a demanding personality that isn't really me. I know I need to be my own advocate because no one is as invested in my mind and body being healthy as I am. I have stopped relying on prescription drugs as a quick fix and doing all that is within my power to regain my health.
© 2017 Lisa Kroulik