A Pained Life: Rationing Pills

By Carol Levy, PNN Columnist

Well, it finally happened. I have been on codeine for many, many years. I have tried other opioid medications, such as morphine, Demerol and methadone, but none helped.

Truth be told, neither does the codeine, usually. Some days my pain from trigeminal neuralgia calms down when I take it. Other times, it has no effect.

For the most part, I take codeine because it gives me a false sense of control. It’s something I can do when the pain gets really bad. I let every prescribing doctor know that. And none has ever refused to give me a prescription. 

I take about one pill a week. Not because the pain is rare, I’ve just learned to stop doing many of the things that triggered the pain, such as eye movement and eye usage. I am now about 80% housebound as a result.

I’ve been having a bad time lately with my deep brain stimulator (DBS) implant. It makes the pain worse when I have the device turned on. The result? I have to take more codeine. 

The last time I saw him, the pain management doctor I’ve been seeing for Pennsylvania’s medical marijuana program wrote me a prescription for 120 codeine pills. The prescription called for no refills, but lasted for 10 months because I use the pills so rarely. I had no reason to expect he would not write it for me again.

The last appointment for the refill took literally 2 minutes. This is how the conversation went.

“How are you?” he asked.

“Fine. Thank you.”

“Anything new?” 

“I had a DBS implant a few months ago.” 

“Is it helping?” 

“No. Actually, it is making a major part of the pain worse.” 

“Well at least it is helping some part of the pain. What are you here for today? 

“My codeine prescription.” 

“Okay. Bye.” 

I assumed everything was fine and he would renew the same prescription.  

Since you no longer get a written script that you can read and carry, I was astounded when I got to the pharmacy to pick up the prescription and saw the bottle held only 10 codeine pills. And the prescription was for only 2 months. The doctor didn’t say a word about changing the prescription. 

I called his office. “I don't understand. He didn't say anything to me about reducing the amount. He didn't ask me how and when I take it. Yes, I told the nurse I take maybe one a week, but he never gave me a chance to explain why.”   

The nurse replied: “Well this is what he wrote for. And you will have to come back every two months for another prescription.” 

I have no problem with a doctor deciding it is time to try and reduce a medication, unless it is without explanation or discussion. This seems to be one aspect of the opioid crisis that seems to be ignored.  

I was seeing him once a year to meet the requirements for the medical marijuana program. Now, suddenly I need to come in once every two months for my codeine prescription. No explanation. No discussion. 

We blame the CDC, we blame the FDA and we blame the DEA. But we rarely blame the doctors for these arbitrary decisions.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.