The pain started around 11pm. It’s been a while since I’d had an attack at all, so I figured I could push through it the way I usually do. I’d never gone to the emergency room for pain before, but this was different. I quickly found myself in the worst pain I have ever experienced. Ever. And for perspective, I’ve had two thoracotomies, chest tubes, urethral stents, you name it. This was the worst pain I had ever experienced.
My friend got me to the hospital and they took me directly back—drooling, dripping snot, swollen eyes, and moaning. My hands were shaking and I couldn’t even fill out the paperwork. The triage nurses were fantastic and understood the intensity of what was happening. I was brought back into a room right away.
I was treated by a nurse practitioner who took one look at me, did no neurological exam, and said “we really don’t know how to help you since opioids don’t work for neuropathic pain.” At this point I was barely able to speak, and made it clear that I came in because I had never experienced pain like this and obviously was unable to treat it at home. I did not demand narcotic pain medication, however I demanded finding SOMETHING to get my pain/inflammation level down.
Perhaps the rocking myself back and forth, moaning, skyrocketing blood pressure, swollen eyes or swollen face, shaking, not to mention the dry heaving into a blanket didn’t give away the fact that I was in agony.
A registration tech enters the room to take down history and insurance info. She is so upset by my condition and the lack of responsiveness from my nurse(s)/overseeing attending that she actually leaves her responsibility to find out what the my “team” of providers were up to. She did this not once, but THREE TIMES. Without me asking. And each time she would just shake her head, say she’s sorry, and try to soothe me. That woman is a fantastic provider, let me tell you.
45 minutes goes by. I sat on that exam bed rocking myself back and forth. While I sat there, I imagined myself yanking out my back molars with a pair of pliers. The friend that I was with, Viv, was able to speak for me since I was absolutely unable to advocate for myself. She goes and finds the staff, asking why they are not starting a line when I’m in visible and audible agony? They tell her they’re working on it. Another 20 minutes.
Eventually a nurse comes in with a needle. She gives me the shot in my arm and mentions that she gave me Ativan. Great. So you’ve given me IM ativan which takes about 30 minutes to work (only they don’t tell us this until Viv harass them about why it’s not working) for a patient who is WRITHING in pain. All of the clinical physiological indicators of a 9 on the pain scale were present…and you’re using medication delivery options that take significantly longer than if you would just infuse them..? If I was male or had a kidney stone or a severed limb, would you be handling an emergency like this?
She leaves again. Another 45 minutes with zero communication. Pain has not changed and no one is even asking me about my pain level. Someone is standing outside my door watching me with a weird smirk. I didn’t need sedation. I needed pain/inflammation relief. And the sedation did not sedate me.
I thought maybe it was the level of pain making it seem like we’d been waiting a long time, but it turns out we actually had been waiting nearly another hour. So I was no longer hyperventilating, instead I was curled in a ball rocking myself back and forth. Snot and drool still dripping, bed sheets still being gripped, moaning not stopped. Agony. My face is on fire. Please just make it stop. Viv goes out into the hall and asks what’s going on and what their plan is—I told Viv specifically not to demand pain meds, as we had very much gotten the vibe that they weren’t taking me seriously. Viv found them sitting at the nurse’s station on their phones. Their only plan was to give me the Ativan and let me sit in that room until the worst pain I have ever experienced just magically resolved itself, until I was “no longer anxious.” I had never been anxious. I was in agony! Why was this so difficult to understand? I honest to god felt like I was being passed off as the “hysterical woman” kind of sexist diagnosis thing.
A nurse comes back in and asks me if I think I’ll be able to take a pill now that my anxiety is better. At this point it’s evident that they are definitely not going to start an IV line on me and that they very seriously don’t care. IV steroids are out of the question.
So she brings me a cup and two pills. I ask for a straw, since it’s the only way I’ll be able to manage to get these pills in my mouth and down my throat. I get them down. She makes a comment about how “now you must be having jaw pain?”
No. No, I’m not having jaw pain, I’m having trigeminal nerve pain of the branch that runs through your face. So movement, vibration, touch, drinking, temperature changes are AGONIZING. You’d know that if you’d asked me even a single question or determined my chief complaint.
I ask what she gave me? Percocet. The exact same medication I have at home—the one that didn’t work. Now I know using opioids for neuropathic pain is a challenge, often futile. But that is NOT a reason to not try to relieve a patient’s very obvious agony. Steroids, maybe, ANYTHING. That’s like saying “well we’ve never seen a broken limb quite like this, so we’re not going to treat it.”
Dr. Douchebag finally comes into the room 3.5 hours later. And proceeds to mock my attempt at covering my face in lidoderm. Viv and I exchanged glances. Rude. At this point I was getting my ability to speak back, but I was whispering as to not move my mouth as much as possible. Dr. D snidely remarked about why I found it “necessary” to whisper. And then got annoyed when I tried to spell out a medication and he couldn’t understand me from across the room.
It was apparent from the moment I was brought back into the room that they didn’t want to put in the effort. Refusal to treat, refusal to consult with another colleague, refusal to even google treatment protocol. Maybe that was because they were trying to wrap up their shift, I have no idea. But they didn’t try, that much was clear. And this was only compounded not by poor communication, but by NO communication at ALL. These providers did not re-assess my pain, no vitals, no nothing! It was like they decided to take a late-night break and ignore patient responsibilities. They didn’t disclose their plan, didn’t disclose what medications they were administering, nothing. We were just sitting there in that room for hours while I writhed, cried, drooled, dripped snot down my chin, fantasized about yanking out my teeth, my right eye twitched, and begged someone to make it stop.
I have never felt more helpless. I’m a big believer in saving my 10’s on the pain scale. But I’ll tell you what. That was a 9.3. It was the kind of pain that makes you want to actually remove your teeth or end your life. I don’t ever want to experience that again.
The best part? Upon leaving they handed me discharge papers: “Trigeminal neuralgia is a highly distressing and disabling pain disorder. Seek immediate treatment at ____ Emergency Room should your pain become unbearable or your medications fail to work.”
I learned the meaning of that word tonight. Unbearable. I deserved better. That was just torture. What took hours could have taken a whopping total of 30 minutes if they had just started a line. But of course, that would require them to take me seriously.
I did my part: I brought in my meds, letters from my current doctors, my medical records. I was polite, did not demand certain drugs, did my best to be understanding of staff needs and protocol.
So, Tallahassee Emergency Room, I will not be coming back for this “highly distressing” emergency situation (should it ever happen again). I do not know what is more terrifying: agony so intense you actually seriously think about pulling your own molars out, or the fact that the largest local medical institution is willing to write off someone’s agony as anxiety in order to avoid a lengthy trail of paperwork at the end of a shift.
There are some really amazing comments in the reblogs, the response to this is more than amazing. But I just want to make something clear: this is not us vs. them, patients vs. providers. These three individuals in charge of my care are the minority. I blame those three people and it’s true, I have empathy for them— how much stress they must be under in a broken system in the middle of the night in in urban emergency room. But there is no excuse for the care (or lack thereof) I received. Most importantly: not all doctors, nurses, nurse practitioners are like this. We as patients have to remember not to make generalizations about our health care providers, they same way providers need to treat us all as individual patients/people.
And absolutely, I will be filing a formal complaint and taking it further. No, I sure as hell am not paying that medical bill! I will identify which ER this occurred at when I know what the next step is.