As a migraine patient, I feel let down by the ER
Before I dive into my personal frustrations, I want to say that I have utmost respect and appreciation for ER doctors, nurses and staff. It is not an easy job. It’s stressful, demanding and incredibly necessary. I genuinely feel appreciative that we have people in the world who are willing to dedicate their careers to helping others in this way.
That said, as a migraine patient, I feel let down by the ER. While I am definitely ignorant to the preparation that ER staff goes through. I can say that, from my perspective, it feels like there is little education on the topic of migraine. On one hand, I get it. ER doctors and nurses need to learn about so many different illnesses and conditions that I am sure it’s impossible for them to dive deep into every single illness, especially those that are not critical. I understand why migraine would be lower priority on the long list of things that they need to learn.
Here’s a bit more detail on how I feel that the ER is missing the boat for me, as a migraine sufferer:
I Leave Feeling Worse Than When I Went In
I have visited the ER more times than I can count for my chronic migraine. It’s devastating to think about how many times I have dragged myself into a cab to take me to the hospital, desperate for relief. The more devastating part is to think about how many times I have later dragged myself back home, feeling more defeated than when I went in. I wish that it only happened once, but, unfortunately, it has happened during every single one of my ER visits.
In result, I have learned that the ER is not for me when it comes to migraine. I cannot mentally or emotionally handle the defeat of leaving the hospital without relief another time.
The Lights and Sound
This is a minor detail, but the ER is a migraine sufferer’s nightmare thanks to the light and sound. Given that I live in Manhattan and the ERs (even at the nicest hospitals) are packed, there are never any dark corners for me to hide in. Instead, I am often on a bed in the middle of a large room with intense bright lights and incessant beeping noises. While I am generally fine with loud noises, the repetitive beeping noises of the ER make my head throb.
“We’ll Start with Reglan & Toradol”
I swear, no matter how many times I tell my ER doctors that Reglan and Toradol don’t work for me, they’ll ignore me and say, “OK. We’ll start you on Reglan and Toradol.” This situation is 100% expected every single time that I go to the hospital. As a patient, it seems that they are following some general migraine protocol that they are supposed to put me on. But, while I am struggling in pain, it’s hard to comprehend why they plan to make me sit through more hours in the hospital ‘trying’ medications that have never helped me. It feels inefficient.
My Pain Feels Invalid
Although I am in chronic pain, I have made it a priority to stay away from pain medication. Personally, it is a path that I do not want to go down. My reasoning behind this is that I don’t think that pain medication will be a solve to my illness and any potential room for addiction is not something that I am willing to take a chance on.
That said, I am willing to try pain medications when my pain is so strong that I am barely holding on. The unfortunate news is that when I ask for pain medication in the ER, no one will prescribe it to me. Even though I am looking at the pain medication as a one-time “get out of jail free” card, it’s never an option. This is something that I can’t comprehend. Why is my pain not viewed as worthy of pain relief, even if it’s a short-term solution? It doesn’t feel like my ER doctors view my pain as real.
There’s Nothing for Me
When the Reglan, Toradol and fluids don’t work, what happens next? Most often my ER experience ends and I am discharged. I have pleaded out loud, “Please help me. I am in too much pain to go home. Please help me,” but it never seems to work. They’ll hand me to discharge paperwork anyways. This moment is exactly why I feel worse when I leave from when I went in.
Now, as I slowly walk out the door, not only am I in pain, barely holding on for my life, but I feel like I am not taken seriously and not worthy of help. To put it simply: I feel helpless. Every single time.
After years of experience, I have learned to only go to the ER that is associated with my neurologist’s practice. Here the doctors know more about my history and they have been open to letting me try Depakote and trying a round of DHE from time to time. While these options don’t solve the problem, I appreciate that the doctors are taking an extra step to improve my pain.
While I believe that everyone needs to find the solution that works best for them and always go to the ER when they feel it’s necessary, I have found that the ER is no longer an option for me and my migraine.
I respect and deeply value ER for everything it does to keep our communities healthy and alive. That said, as I migraine patient, I personally feel forgotten and I can only hope that sharing my perspective can spark the fire to make someone think a little differently about how migraine patients are treated in the ER.
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