Surveillance With Stethoscope and Gavel

My Battle With Opioids

The Beginning:

Every day when I get up and every night before bed, I take a bunch of pills for tardive dyskinesia, esophagitis, depression and Bi-Polar Disorder from my divided medications tray. And then every six hours, I take an Oxycodone, as needed, for pain. This dosage has been refined over the years; but now I need it as regular relief just to get through my migraine, which persists through the night and day.

The headaches began when I was sixteen: flashing lights, a sensitivity to sound and light, vomiting for over five days, and a monstrous squeezing at my temples and eyes. Fortunately that pain was not so acute at the beginning and disappeared when enough hours had gone by, helped along by a low dose of something, which was not an opioid, but a pill which my mother gave me from her medicine cabinet, as both she and my father got occasional migraines. The headaches only came once in a while; but Mom sent me off to college with five precious tablets. By the end of my freshman year, the migraines had vanished.

They didn’t return until I was in my late twenties and a mother to both a rambunctious toddler and a needy newborn. The neurologist postulated: A hormone shift? Stress? He had several sorts of theories. One by one, we tried a variety of medications on the market , but none of them kept the migraines at bay. I even tried importing an injectable from Sweden, but that didn’t help either. Eventually, we moved to Manhattan, where a friend who was an internist, prescribed Fiorinal, a barbiturate which had codeine in it that was specifically a migraine medication—not an opioid, but a pain reliever, with a boost of Codeine. Suddenly I was on a new path. I finally got relief.

Flash forward:

Over the years, the headaches remained but didn’t get worse, with the help of the prescriptions which my friendly doctor calmly ripped from his pad of single sheets. No triplicates back then. Just one doctor’s opinion—it was a different age. But when we moved to California from the suburbs of New York, he sent me my scripts in the mail and I kept to my dosage religiously. After a while he increased the medication to include Tylenol 3, a class of medication which was not an opioid, but instead a narcotic pain reliever—a bump up toward other schedules of drugs, as the Fiorinal wasn’t quite covering my problem any longer.

Eventually the DEA began to hassle my friendly doc and ruled that he must stop prescribing both the medications simultaneously: I must get by with just the Tylenol 3. I suffered for a while at the reduction, and accepted the fact that I would have to live with some amount of pain on a daily basis. The migraines had boomeranged and I began to save enough for a last dose before bed—sleeping had become the hardest aspect to manage, because the pain had become chronic.

Years went by and with my children out of the house and in college, a calmer environment arrived, but the headaches remained. If anything, they grew stronger and more frequent. Menopause was suggested as the cause, but the pain did not cease when the hormonal shift did a few years later.

It was then that I entered a revolving door looking for a physician: where I had never been questioned about my Tylenol 3 usage before, now I was periodically. At this time, I began to work with a neurologist who specialized in migraine and pain management. He made certain that we were keeping up with new medications on the market—among them Oxycodone, and sometimes even new (and stronger) medications for cancer. He kept up on migraine research, as well as pain prevention, and was the last neurologist I would ever see who treated me like a patient, rather than as a criminal. Oxycodone became my drug of choice. It was the second most strong medication the DEA had within Schedule 2. I started with 40 milligrams and eventually progressed to 80.

When he died at age seventy from prostate cancer, I began a hunt for a new M.D. who understood what I was at that point enduring, as the pain had become more frequent and more difficult to handle. But I was worried: would anyone prescribe such a high dosage. Little by little, I reduced my use back to 30 mg—and with fear.

Trying to find a doctor with a willingness to even prescribe oxycodone at all had become a grueling search: I rationed what I had left from my last prescription from the physician who had succumbed to his cancer, and even tried a vast variety of solutions with the more adventurous interim physicians: Yoga, biofeedback, acupuncture, other medications which just didn’t work, and prescriptions that were off-label. Both hope and shame marked my days—even though they were more acceptable to the medical establishment for migraine. But my supply of Oxycodone was nearly gone.

Fast Forward:

It was at that point that I entered new doctors’ offices with an anxiety that had become increasingly intense. Would one of them understand my escalating pain and its chronic presence in my life? I went through two new interviews wherein this kind of physician perused my situation—one took a quick look at my records, with the more than fifteen different meds I had tried over the years with the physician who had prescribed to me so liberally for years. As we talked, I had the spooky feeling that he didn’t believe in my need for Schedule 2 medications or even heavy narcotic painkillers to be appropriate. It only took a moment before he kicked me out of his office. “I’m not doing this,” he proclaimed, right in front of a full waiting room. At this point, the FDA was becoming more and more restrictive and doctors were now on the alert: “screen anyone who looks like an addict and deny them a prescription.”

My husband and I moved from California to Maryland in 2017, which presented an even more acute problem: at this point, Medicare was only allowing those who prescribed Schedule 2 drugs to provide their patients that level of medication when writing within state lines. I was refused my Medicare unless I wanted to pay out of pocket, which amounted to $1000/month for my medication and I was refused an appeal. At age 65, I got stuck. Major legislation came in the form of a Federal law written by Congress and designed to address the national opioid epidemic in the Comprehensive Addiction and Recovery Act (CATRA).

Fast Forward:

At this point, as I got closer to my late sixties, my internist recommended a reliable, respected pain clinic, one that was twenty five minutes from our home. I was grateful for it, nevertheless. Sufferers of many kinds of chronic medical situations were referred there all the time. Still, political scrutiny ramped up even in that setting: urine screenings were de rigeur monthly, as were monthly appointments to see if you were using any other kind street drug or Class 2 medication, or alcohol, or marijuana. Everyone began to weigh in on my situation—including my family. My pain was analyzed. A pain specialist looked at my records at each appointment and, after a year, I began seeing her P.A., who was even more strict.

As my husband and I watched with apprehension, bills went before Congress to limit the amount of relief an individual would be permitted; doctors soon discovered what those regulations would mean to their patients: a limitation on how much medication would be allowed each patient; prescriptions moved from being triplicates, to one electronic copy for the patient and one electronic copy for the FDA and one electronic copy for the pharmacist. Soon a paper prescription wasn’t valid any longer.

The newest wrinkle in the saga was the inclusion of pharmacists making final judgements about whether the prescription was valid. Who was going to receive their medication? Soon it became a government requirement to determine who that was to be. Which pharmacist would phone the physician’s office to verify its validity before they would fill it, and pharmacists were outright able to refuse. Little by little, those with chronic pain were judged to be addicts seeking a high. One day at the clinic, while attending my regular appointment, the PA yelled at me because I had used more than my prescribed headache dosage by three tablets, as directed by another physician, for a different kind of pain. “You can’t do that! If you do it again,” she shouted at me. “You will be dropped from the clinic!”

“Bridge” prescriptions, when you went on vacation, were to be similarly “flagged.” That kind of deviation from the usual practice put you on a list of possible drug seekers, regardless of how long you had been on your medication, how many appointments you had kept, or how clean your urine testing had been each month.

One day, I stood at the pharmacists counter for a half hour as an impatient line of customers grew longer behind me; this soon developed into a fracas for no reason I could see. The prescription for my dog, Hydrocodone looked certifiably good to me. Eventually the pharmacist came out and gave me a litany of reasons for which she was having difficulty filling the Hydrocodone: I explained that Cody had a vicious cough that had persisted for five months and that they had filled the prescription numerous times in the past. Though this Schedule 2 medication was typical for a dog’s cough, when I returned to the pharmacy the next day—even though the prescription was dated correctly, and confirmed by the vet’s office to be valid—she paused and shrugged, refusing to fill it. I put out my hand. “Give it back to me, please.” She gave it with obvious relief.

Only as I left, did I realize that though the prescription had passed official muster, as well as having Cody’s name as a patient from a vet’s office, followed by the designation as a “PET,” the powers that be in the pharmacy had judged me to be an addict: I also filled my Oxycodone there and the two drugs were similar. Pharmacists are now the final arbitrators: the question had become whether I was asking to fill the medication for myself or whether for my dog—even if it was written by a reputable local veterinarian whose office had confirmed it.

Fast Forward:

I am a person with chronic pain, who has used her medication’s instructions to the letter, who has passed every necessary urine screen over the last ten years and for all substances. I have now been threatened with losing those medications altogether, and am perceived as one who breaks the law, rather than a person with nearly sixty-five years of pain. There are thousands of us out there who suffer—sometimes in silence—because the consequence of speaking up is too great.

I am venturing out today with this column for those who are too frightened to do so—but increasing numbers of us are beginning to band together: “I am a patient in pain! Treat me as someone in need rather than as a drug addict.” Drug users find it to be easier to buy Oxycodone on the street, never having to satisfy the regulations of Congress or the DEA or the suspicious questions from pharmacists who are not even qualified to decide whether to distinguish between a patient or a criminal. “Medication” is no longer “medication” when it is denied to those who are verifiably in need of help. It’s damned sad when a dog or cat can get a prescription for a Schedule 2 drug like Hydrocodone, rather than someone one in honest pain—like a patient with a crushing spine injury. Or even a series of devastating migraines.

The “Opioid Epidemic” brought vast changes in the prescribing of medication: it broke apart communities, killed citizens, and demonstrated that Big Pharma was an evil money machine. Pill mills were identified and stamped out; doctors who wrote fraudulent prescriptions were prosecuted, but those who suffered in chronic pain were denied their medication and judged by many to be addicts.

An incisive article in P J Media written by David Manny observed that those who had committed a “crime” of such terrible proportion suffered as a consequence brought their victims nothing but agony. Those victims had endured a system which confused “compassion with weakness […] They are the forgotten casualties of the Opioid Wars.”

But those “forgotten casualties” of the Opioid Wars were real, considering the legitimate level of pain the avalanche of true patients were experiencing. People with chronic pain were ignored instead of being supported: instead, Big Pharma, insurance companies, unscrupulous doctors and pill mills made disgusting amounts of money by taking advantage of the real pain patients were beginning to experience sometime back in the 1990’s.

Now, in response, when such a patient walks into an Urgent Care Clinic, or his internist’s office, he/she is generally advised to take Tylenol instead of getting a prescription for something stronger, despite Tylenol’s inadequate relief. And unlike drug addicts, chronic pain patients are generally average citizens with continual problems who must apply to a Pain Specialist’s Clinic; their pain is like a migraine in nature, or a back injury, a slipped disc, surgery gone wrong—those who will soon have to testify to their continual pain month after month, or year after year. As David Manny says, “Chronic pain has become surveillance with a stethoscope […] It’s a system that doesn’t allow for humanity. It provides for policy. And policy has no room for grace.” It seems to me that policy governs by unreasonable and cruel rules. Suddenly you become an individual who breaks the law.

But now these patients who fight for themselves have become a band of survivors ready to revolt. We are no longer willing to remain in relentless pain and must battle humiliation instead. For some, isolation increases, depression gets deeper, and ideas of ending their lives grow more and more strong. They begin to decide how they will accomplish making plans to end their lives—to begin to believe that getting out of their suffering would be better than remaining on a terrible merry-go-round of pain. Compassion might help, but chronic pain is only treated with suspicion. “The war on opioids was supposed to end exploitation,” says David Manny. “Instead it's creating a new one: a slow bureaucratic form of abandonment, done not in alleys or backrooms, but in waiting rooms and denial letters. Let this be the time we finally say: ‘mercy is not weakness.’

We should stand up now and shout that compassion is what we must have, and we need it badly. It is simply what must be done. Ultimately, it is justice.