A Tale of Two ER Visits
Like most of you, I dread going to the emergency room. Lately I have been very lucky, despite my visits being somewhat frequent due to changes in admitting policies and urgent care. Though the new ER treatment guidelines by the American Headache Society don't really help me or apply in my case, since I have two types of Imitrex at home and am already chronic, my local hospital knows me and my situation. Recently, they have almost always treated me decently, for which I am grateful. Every emergency department is different and I know how fortunate I am.
I have been needing to go about every four weeks. At my very last appointment with my headache specialist's assistant (one of the reasons I left; I always had to see the assistant) she theorized that I might still be having hormonal cycles even though my ovaries and uterus had been removed due to the severity of my menstrual migraines.
At any rate, something has me on a monthly cycle, with unbearable intractable migraine hitting once every four weeks. So far, the CGRP studies have not halted this. The only time in recent years my ER visits stopped was when I was able to regularly see Dr. Mac, my pain therapist, visits which were discontinued due to issues with Medicare over a year ago. Now that we are getting new insurance, I am eagerly awaiting restarting the sessions of biofeedback, relaxation, and pain counseling, and I look forward to sharing that experience with all of you.
Five weeks ago I went in after fighting severe migraine for a week and a half. John dropped me off, because he had been traumatized by being my advocate during horrible ER visits of the past – getting yelled at and condescended to and threatened by doctors in this very hospital – so he can't stay with me anymore. It actually goes better if I get dropped off and picked up now, though I'm sure in many emergency rooms it would be a bad idea to try this method, as patients with pain and no one accompanying them are often suspected to be drug seekers.
As always, lately, stages one and two of the visit went well. I was treated very kindly in triage (as usual my vitals were all over the place), and immediately helped to a dark quiet room. Within fifteen minutes, I was talking to a lovely physician's assistant who actually had my file, referred to it, asked me a few “have you tried this” questions and listened patiently to my whispered answers. We briefly discussed the study. She asked the typical “what usually works” which I've always guessed must be part of the protocol, since she was holding my file. I told her. She said she would get me what I needed with a kind smile, ran through a quick neurological exam, and slipped out.
There is one doctor I always dread seeing, “Dr. Black,” the only one who seems to have a problem with me, or perhaps the hospital's new protocol. Most likely both. I have heard that he doesn't have a great bedside manner with “regular” ER patients either (which for some reason makes me feel better). When this visit had practically ended without hearing Dr. Black's voice echoing in the hallway, I lay back easy, knowing the agony was going to come to an end soon, entering stage three of the ER visit, after seeing the doctor but before the medication. But then, suddenly, the door opened and a tall orderly swept in, his face a blur in the dimness.
"Hey, you know what, there is nothing we like better in hospitals than warm cups of urine.” Falsely jovial. My easy relieved feeling turned to stone in my stomach. I wasn't worried, but I did feel indignation as I dragged myself off the hospital bed and accepted the sterile cup. I let my hair cover my eyes and made my way to the unbearably bright bathroom, managed to put a little in the cup despite being dehydrated (and without vomiting) and brought it back to my room where I set it on the counter and crawled back into my fetal position on the bed.
My nurse from before came in immediately and didn't meet my eyes. “I um... I couldn't get very much.” I stammered.
She said quickly, “Oh, this is enough, don't worry. I just... I have to get these results and then you'll get your meds, okay?”
I had been urine tested in the ER one other time, and it was right as I was getting to my room, so it felt very random and routine. And in fact the cup was still sitting there, untested, when I left two and a half hours later. This time it felt like punishment, like being taught a lesson. I assumed they were looking for heroin or other narcotics not prescribed to me. I couldn't help but think back over the last couple of days, because like an HIV test or a pregnancy test you know will be negative, it is difficult to not consider the consequences if it would turn out not to be. I knew there would be only what I had listed as having taken for this migraine, my prescribed medications. Nausea started clawing its way back up my throat as my level 8 approached a 9. I was angry. Then I wasn't so angry. I thought, well okay. This is how they are able to treat my pain, by proving to the DEA or whoever that they eliminated every possibility I was an addict, clean urine to show I am not a drug seeker. Except that a urine test really proves nothing. It would only prove I hadn't had illicit opioids in the last 3 days. And then I was angry again. And still hurting so, so badly, while I lay there, waiting.
The nurse came bustling back in after what seemed like an hour but was probably less than ten minutes. She was pulling and carrying all the drug stuff: the IV cart, a tray of clacking medicine tubes, and some sort of fancy wheelie computer. I never really look. “Okay, we're all set, we're going to get you feeling better,” she said, still sounding a bit guarded, or was that my imagination? Or the haze of pain?
She typed into the computer, scanned my bracelet, asked me which arm to use (always the left, the right has a valve in the vein) and tied the elastic band around my upper arm. She used a different spot than I am used to, but the needle went in okay, literally just a pinch. Breathe in, breathe out. Four different medications, pushed into the IV, also dripping fluids, one at a time. And it was done. Breathe in, breathe out.
The pulsing burn in my head was vaporized into a low tingling buzz. A mosquito bite of pain in comparison to what had been a raging fire. My body untwisted, my arms relaxed and fell to my sides, the oxygen monitor on my finger beeped occasionally, pleasantly. My toes uncurled. Breathe in, breathe out. The comfort of stage four and the unbelievable relief of pain easing its grip.
But then a shaft of light pierced my low-pain cloud and a voice cut through: Dr. Black. I had suspected he must be here in the hospital because of the drug screen, but why come talk to me now? Often the attending will come in to check after a PA, but usually before the medication is given. He said, drily ironic, “Hello again.” He said, “What is different about this headache? Why are you here? Why did you come in?” He was relentless, drilling me.
It felt difficult to even open my mouth to speak. I'm not sure I did, at that point. But Dr. Black kept talking. “I could do another CT, but if this is the same type of headache, there is no reason to. You know, emergency departments, they are for broken bones. And... and bleeding.” I still remember that hesitation, the way he spat out “bleeding.” He might as well have said “real medical problems.” I struggled to figure out what he wanted from me. He said again, “Why are you here?”
I think he really didn't know what to say to that. He walked out. John came to get me an hour later. The more I thought about it afterward, the more convinced I was that the urine test was Dr. Black's way of telling me that as far as he's concerned, I don't deserve emergency treatment for pain. That he is going to make me jump through every hoop he can put in front of me. He knew there wouldn't be illegal drugs in my system, but he wanted me to feel suspected. And ashamed.
This week, I had to go back again. I was scared, after Dr. Black's insulting interrogation and urine screen. But it got bad enough that I needed to go, and I told myself that in the past two years I've almost always gotten what I needed. And even if I didn't, fluids and anti-nausea meds alone would help some, bring things down a few notches, maybe allow me to get some sleep. This time I needed my parents' help, as John had to teach on campus. I pulled on brave-girl pajama pants, gathered my basin, ice, and Frozen blanket and was dropped off as usual at the glass ER doors.
Stages one and two went well as expected. My nurse was kind and named a doctor who would be in soon, and it was a name I didn't recognize, which could be good or bad. When he came in, though, he was nice. Everything went smoothly. He recommended a referral to a local pain management doctor (even though I already have one). When I left two hours later, my level 9 pain was down to a 3. Two visits, two completely different outcomes... emotionally anyway. I left both times feeling better physically, having gotten the medication I needed, but the first visit left me feeling angry, confused, and broken. The second visit I left feeling cared for and whole.
A doctor's attitude makes all the difference. Similarly, I think about my own attitude, and how I only go to the ER because I have run out of options. My neurologist and primary care physicians cannot administer injections of any type in their offices for urgent care. I used to be admitted to the hospital about every nine months for DHE infusions. Now there are national shortages of DHE, and here, only hospitalists can admit patients, through the ER. As someone with frequent, severe migraine, there are times when the pain gets to be too much, and even my rescue medications stop working. Only then do I go to the emergency room. I am polite to everyone, saying please and thank you, grateful for their care. But I appreciate being treated with respect in return.
Because every hospital is unique, every emergency room across the country treats its patients differently. Please feel free to share your ER experiences in the comments.
Have you shared your migraine story with us yet?