This post was revamped and reposted as “Why I Stopped Taking Gabapentin” on April 21st, 2022.
CN: mental illness, chronic pain
The first pain medication my doctor prescribed me was duloxatine, an anti-depressant that can also help with pain. I didn’t have depression, but I did have pain, and I was sad and frustrated about having pain, and that was apparently worth medicating.
My insurance needed pre-authorization in order to cover the medication, which required my doctor’s office to file some paperwork. My pharmacist advised me to regularly bug my doctor’s office to make sure the paperwork got done. I waited a week and called my pharmacy, but they said they were still waiting on approval and to call my insurance to find out what the hold up was. The insurance said they were waiting on paperwork from my doctor’s office. The receptionist at my doctor’s office just said, “Okay, I’ll let her know.”
Over the next three weeks I called my insurance and then my doctor’s office nine times. At one point, the insurance person told me they had sent two faxes and a phone call with no response, so they had just called again that morning. On advice from a friend, I started asking my doctor’s office to speak to the nurse or billing person. The first day she wasn’t in but would be tomorrow. The next day something had come up and she wasn’t in after all. The third day she was in, told me she had no idea the paperwork hadn’t gone through and had finally just re-submitted it–a full three weeks after I had been prescribed the medication .
My insurance didn’t approve the pre-authorization because there was no paper-trail demonstrating that I tried more standard pain medications first, such as tylenol or Ibuprofen. I had given up on using Ibuprofen a year before because I was using it way too frequently to be safe. I received a voice message from the nurse saying my doctor was prescribing me something else but she didn’t say what, and I got a text message from my pharmacy 15 minutes later: my prescription beginning with the letters “ET” was ready.
Etodolac was the first prescription pain medication that I actually received. I was terrified to take it because I was scared of disconnecting from my body and increasing my risk of injury. I took the medication on and off at first and then every day for a few weeks. Rather than decreasing the feeling of gravel in all my joints, it just made the pain feel farther away so that I could focus on other things for longer. On the pain scale, it decreased my pain about 1 point, and generally kept it from getting significantly higher. It did nothing for break through pain.
At my next appointment, my doctor gave me a different prescription so that I could have a paper trail of NSAID’s I’d tried. This one was called Mobic. She also gave me a prescription for Gabapentin, to see if any of my pain was neuropathic.
My doctor asked me sweetly, “Do you have any anxiety problems?”
I wanted to downplay my history with anxiety so as to not tarnish my credibility in discussing my own health, so I said, “Some, but most of it went away after I moved in with my boyfriend.”
“Well,” she said, “Gabapentin also helps with anxiety!”
I took Mobic for several weeks before starting Gabapentin, to get a baseline for how it was affecting me. The first day I took Mobic, about half an hour after swallowing it, I felt as if the pain in every single one of my joints melted off of me and collected in a pool on the floor. It was the most euphoric feeling after becoming so accustomed to joint pain that I didn’t notice it in some places anymore. After that first amazing day, it mellowed out to gently softening and reducing my pain and consistently keeping me away from big flares.
With Mobic well established in my system, I was given instructions to take Gabapentin right before bed because it tends to make you sleepy. The goal was to take it once a day before bed until I was used to its effects, then take it a second time during the day, and eventually a third.
The morning after I first took it, I got into a silly argument with my boyfriend. It was something about eggs or cleaning or something. I started getting really upset as if the argument was a big deal, but already my logical brain was pretty clear that it wasn’t. I apologized and said I didn’t know what was going on and tried to relax and calm down. A few hours later, quite suddenly, I found myself in a good mood. The rest of the day was fairly uneventful.
The next day, I woke up with the same panicky feeling I had during the argument. It was as if screeching alarms were going off in my brain and ants were crawling under the skin of my chest. It was like I was being stretched thinner and thinner and I wanted to cry from the pain, but crying would cause the skin on my face to rupture. It was like someone hunting me, striking me, and I was trying to escape, but no matter how much I closed or opened my eyes, the threat wouldn’t go away.
Years ago, my anxiety would sometimes become so high that I couldn’t leave my room because the kitchen was simply too scary. Practice and therapy gave me many tools to help cope. Once I identified this feeling of panic as anxiety, I whipped out my tools.
I tried switching my focus, I tried extended deep breathing, I tried comfort foods, I tried playing games that help me zone out. I tried focusing on the emotion at the center of the anxiety and feeling it and letting it flow through me. But nothing touched it. Nothing influenced it, even in the slightest. It was like going to talk to an old friend who’s going through a hard time, and suddenly realizing that they can’t see or hear me, no matter how much I shout and wave my hands at them. I was helpless to reach it.
Around 2:00PM the anxiety decreased, and it was replaced with a feeling of being deep under-water. My thoughts and movements were like pushing through molasses, slow and confused. My brain normally works at a sharp break-neck speed, and anything less is disorienting and a terrible blow to my self esteem. I couldn’t focus on the reality in front of me. I couldn’t really do anything well.
The next morning, my anxiety was a little lower. I still felt tired and disconnected, but the alarms inside my head had stopped going off. It was at this time that I had the presence of mind to look over the possible side effects of Gabapentin and noticed on my medication bottle this warning: “Contact doctor immediately if you have new or worsening mood/emotional changes or increased feelings of sadness/fear or thoughts of suicide.” I realized then that I was experiencing the worst of the side effects, from just the lowest dose, and that I should call my doctor right away.
Phone calls, unfortunately, are a source of anxiety for me. I called and rather timidly told the receptionist that I was having concerning side effects to my medication and that I needed the doctor to call me about it. The receptionist said she’d pass the message on, but knowing that this office had a reputation for not following through, I wasn’t entirely surprised when I received no call back.
I called again the next day and slightly more urgently told the receptionist that I really needed to hear from the doctor about the medication. My anxiety was still sky high and I felt like crying or like I was in a swimming pool at all times. Flaky or not, I couldn’t really believe that my doctor wouldn’t respond to two such phone calls when I had an urgent medical issue. I received no call back.
I told my best friend that I wasn’t going to take Gabapentin anymore, that I couldn’t wait for my doctor to call me back. I simply couldn’t face another day of having anxiety so high with no control over it whatsoever, and no effective coping mechanisms or tools. Concerned, she advised me strongly that it was dangerous to stop a heavy duty medication without consulting a doctor first. She convinced me to take it one more time.
The next day my best friend surprised me with a visit during her lunch break. She told me that she was going to call my doctor’s office and she was going to keep calling and being annoying and persistent in her advocacy until I received a response. Over the phone, we went through the process of officially giving my friend permission to speak on my behalf and she told the receptionist that the anxiety from the medication was so bad that I wasn’t able to complete the phone call myself (which was more or less true at that point). They talked back and forth for a minute and then the call ended. My best friend held me close and chatted with me for the next hour and a half while we waited for a call back. It always seemed like if I were to just close my eyes, surely the urgent panic that filled the air would lessen and I could find peace under my eyelids, but it never worked.
We received no call back so she called again and repeated the same script word for word. Irritated, the receptionist said, “I know, you said that before.” My friend pressed on, taking pleasure in the receptionist’s irritation, again emphasizing that my symptoms were severe and that the medication bottle directed I should speak to a doctor as soon as possible. The conversation ended similarly. My friend had to go back to work but she promised that she’d make another phone call for me later if I needed and encouraged me to do the same. I was fairly certain that I didn’t have it in me to do so.
I finally received a phone call from the nurse a few hours later, with the blessed news that I could stop taking Gabapentin. The nurse was sorry that I had to experience the worse side effects and she asked me if I had tried Yoga to help with the pain. I told her it was a little hard to do sun salutations with an injured hip.
That night was the first night I didn’t take Gabapentin in 6 days. After going to sleep, I found myself wide awake about every 2 hours. At 5am, I woke up, went to the bathroom, laid back down, and suddenly had excruciating muscle spasms and nerve pain in my shoulder and back in areas that had never affected me before. I rolled from position to position trying to make the pain stop or lessen but it didn’t. I wasn’t sleepy in the slightest, and the pain had me lit up like a christmas tree. I waited and waited, concentrating on my breathing, and tried to find a reason to sleep. I finally succeeded about 2 hours later.
I never noticed a significant decrease in pain while on Gabapentin.
The first day off of the medication, I was still a little wiped out from the whole experience, but I felt much more like myself . The second day, I felt as if my whole life had been illustrated and remastered and vividly clarified. Every sense, every emotion was full and rich and beautiful. For a week, I had been living in sepia tones and black and white. On that second day, I was living in technicolor.
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. In addition to creating a collection of educational resources for social justice, she works as a freelance writer specializing in content about her experience with disability, chronic illness, mental health, and trauma. Her work has been published in Ms. Magazine blog, The BeZine, Betty’s Battleground, and Splain You a Thing. You can find her @KellaHannaWayne on Facebook, Twitter, Medium, and Instagram.