Here’s how it happened.
A week ago I was in the midst of a gastroparesis flare.
“Drink two cups of coffee a day,” said my doctor.
And I started out by drinking one.
When the migraines started two days later, I went back to my doctor to let him know that they had triggered a new migraine cycle. He prescribed me a medication called Relpax. Even though I’ve failed many, many migraine medications I was happy to try another one.
And I did try it. And when it didn’t work I went back to my fail-safes— 800 mg of ibuprofen, shots of torridol and percocet.
But after a few days the migraines got worse and the medications stopped having their usual affect.
On Sunday night I mixed promethezine and torridol in with my saline and while it didn’t stop the pain, it put me into a tumultuous sleep.
By Monday I realized I was out of medication to try and eventually, when the migraine hit that day, I would have to go to the hospital to get an injection of dillauded—my usual medication when my other medications failed.
We got to the ER at 8:00PM that night. I called my doctor and was surprised when a woman answered the phone. She said she was his on-call PA. I told her what was happening, what my usual procedure was at the ER, and asked if she could call ahead.
We waited forty-five minutes in the ER before being called back.
After another long wait, the ER doctor came and said she’d spoken with the PA and would send the nurse in with the medication.
But when the nurse came in she explained that she was going to give me promethezene, torridol and benadryl.
I told her I had done promethezene and torridol at home already and that hadn’t stopped the cycle—hadn’t my doctor mentioned this?
I called the PA who said that my doctor said, in exact quotes:
“Under no circumstances is she to get narcotic pain medication.”
I sat there totally shocked.
I mean I’m not oblivious. I know what’s going on in the world. There’s a huge opioid addiction problem. Doctors are under a microscope as the FDA cracks down on pain management prescriptions. I also know that narcotics are not a long-term treatment plan for migraines. That they cause rebound headaches. That they make you zombie-d out. That they’re bad for your stomach. That they’re not to be taken as a first resort.
Which was exactly why I was there. How could my doctor not know that? I have a port. I can inject non-narcotic pain medication straight into my veins. I have percocet—even oral dillauded at home. I make sure I see my doctor without fail every two weeks so that he can have a good grip on my physical health—but also my mental health. I signed a pain management contract with him to assure him that I wouldn’t go to other doctors for pain prescriptions outside the hospital. It had been seven days of migraines. Wasn’t that enough pain to deserve relief?
Why was he blacklisting me in the only emergency room I regularly go to? Why would he relay this to a PA—to an ER doctor, but say nothing to me?
If my treatment plan was changing, didn’t I have the right to know before I was humiliated in the midst of a migraine?
And as far as my treatment plan changing and me not being able to access relief (and yes, that’s what it is, not results—relief after seven days of migraines,) what was he changing the plan to? Because he KNOWS I wouldn’t go to the ER if I could take a shot of torridol at home. And he prescribed them—so he knows I have access to them.
They didn’t discover the cure for dysautonomia or cluster headaches between then and our last appointment together. What did he expect me to do?
Well, he clearly intended for me to take the cocktail he knew I had failed, and go home. So I did.
I called the PA again and tried to set things straight but by then it was too late. He had already spoken with the ER doctor and said the words “under no circumstances is she to get narcotics.”
Effectively labeling me a drug addict, pill-seeking patient in this ER forever.
They discharged me, my head throbbing, now also from confusion and tears and I went home.
I’ve felt this horrible, shrinking, humiliated feeling overcoming my whole body since I walked out. I don’t know how to even come to terms with the betrayal. How do you even confront a doctor about something like this when you’ve worked with them for over a year? When you’ve let them into the worst moments of your pain? When you’ve trusted them to do no harm?
With him being on vacation and me being in a crisis in the ER—this was not the time to change the game plan. He could have spoken to me beforehand if he felt like I was overusing pain medication. He could have handed off responsibility of my pain management to a pain management specialist (who I would have happily gone to).
Instead I have no one to help me manage my treatment until he gets back on Tuesday. I won’t violate our contract and go to a pain management doctor or another general doctor until we’ve sorted this all out. I also can’t go back to the ER if the migraine gets unbearable again. Hell, I’m not sure it’s a good idea for me to ever go back to that ER again. Getting labeled as drug-seeking is basically shutting the book on patients like me. I will not be treated as a sane human with a chronic illness, I’ll be treated like a wild addict.
I know. This happens to all of us at some point. The doctors give up, feel the pressure of treating a patient who doesn’t respond to medication the way they should, think the best way to handle the situation is to rip away the only temporary solution the patient has. Not understanding that it will throw us into an absolute panic to know that the next time pain hits: it’s not an uncertainty—we will suffer. And our suffering will be a continuos guilt-fueled loop as we question over and over again: is this real? Why can’t I make myself better? Why can’t I will-away the pain?
I have a horrible feeling I can’t shake off. But I guess that’s just what the drug-seeking label is supposed to make you feel like.
Feel free to share your “drug-seeking” shamed moment in the comments below.
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