Woman standing at the ER front desk

Frustrations in the ER

I don’t know if it’s a good thing or a bad thing when the doctors and nurses in the ER start to recognize you. On one hand it can make it easier to get care you need but on the other hand, it means you probably go to the ER more often than you would like to admit. When my migraines turned chronic, I began to average one ER visit every 2 months.

I was lucky that my insurance company offered a small emergency department for its members that was a step above going to Urgent Care, but didn’t have all the bells and whistles of a full ER, like the ones connected to major hospitals. This allowed for more personalized care and I didn’t have to compete with patients with life-threatening issues (clearly they take priority over my migraine!).

Trial and error at the ER

The first few times in the ER were trial and error to figure out what worked best to calm my week-long migraines. With each visit, we unlocked the secrets to making each trip more productive. I learned to cap my pain level at an 8 or 9 on a scale of 10, so that I would be taken more seriously. A 10 should be reserved for those in labor, in severe accidents, or on the verge of death. I figured out the right combination of drugs, I knew what time of day was best to go to the ER, and I knew that if I called my neurologist first he would put in orders for me when I got there, making the whole process pretty smooth.

The doctor who refused to prescribe me painkiller

After a year of successful ER outings, I ran into a new doctor I’d never seen before. She made it very clear that she did not approve of my regimen of an anti-inflammatory, steroids and a painkiller. Stunned that she would vary from my secret recipe, I tried to plea my case. If she would just look into my records, she would see that this is what has helped me in the past. In fact, she could ask her colleague who I saw roaming the halls earlier- that doctor had treated me many times successfully. Surely she would vouch for me. This particular time, my neurologist hadn’t returned my calls about sending orders to the ER, so maybe paging him would help the situation. But no, this doctor was determined to treat me her way, meaning no painkillers.

Understandng the opioid predicament

I absolutely understand the fine line doctors have to walk with painkillers. More people overdose on opioids than all other narcotics combined. It is a serious problem in our country. But I was not a drug seeker. In fact, the drugs the doctor ordered, I had already given to myself at home in hopes of avoiding this trip. I needed relief that sadly comes from a good shot of Demerol. I know that painkillers don’t target the root cause of the migraine, but coupled with the other drugs it gives my brain a chance to rest after days of constant pain.

I had to endure a long speech from the ER doctor on the dangers of opioid use and rebound headaches. She mentioned that she saw in my chart that I had completed a 12-week pain management program, so she should know that I was educated about the issue. With a raging migraine, it was difficult to fight back and advocate for myself. I felt like a little kid being scolded by my mother.

Getting support from my neurologist

After 8 hours in the ER with no relief, I gave up. Clearly I was not going to get what I needed to break this migraine cycle. I called my neurologist the next day to discuss how to avoid this problem in the future. He put in a standing order for the meds I need when I go to the ER and so far it has worked. But I had to return 2 days later because the migraine still had a hold on me. My go-to concoction was used and I was on my way to recovery.

Need to remove the drug seeker label

I know that not everyone has the luxury of a small emergency department that works closely with your doctor. Trust me, I don’t love the fact that I have doctors and nurses there who know me by name. I try very hard not to abuse the system, only going after trying DHE and Toradol for days at home. Each year, about 3 million people visit the ER for head pain and I bet the majority of them are not satisfied with the care they receive. Doctors have to prioritize life-threatening patients over migraineurs. There are no tests to prove you are having a migraine, so they have to assess each situation and treat to the best of their ability. Sadly, it seems that the first label they put on us is drug seeker. There has to be a better way.

A pain scale study

A study was presented at the American Society of Health-System Pharmacists convention in 2013, suggesting that the typical pain scale of 1-10 is outdated for migraine patients. Everyone has a different pain scale, making it difficult to treat the pain appropriately. Asking a patient if they need more pain medication is more productive than asking their pain level. Some patients report a high pain score hoping the doctor will dole out pain meds. In this study, one group of patients was given pain medication as determined by the physician based on the patient’s pain level. The other group was given pain meds with a standing order to repeat after 15 minutes if the patient felt more was needed.

The patient driven method saw significantly more improvement in pain relief within 60 minutes than the physician driven method.  Pain meds don’t always work immediately and having an order to repeat the dose allows for a quicker response and relief than having to wait until the doctor has time to come back and check on a patient before administering more medication. To read the full study, go here.

Hopefully, this practice will become more routine for migraine patients in the ER. Until then, the ER continues to be a place where stigma runs deep. Here are some other nuggets of info when preparing for an ER visit. What are ways you try to make your ER visit quicker and more effective?

Why does the emergency department treat me like a drug seeker?

Tips and Tricks for a Successful Emergency Department visit

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • Susan
    4 years ago

    I have had so many of the same experiences going to an ER. At one visit, a Dr. I had not seen before, flat out said that I was a drug addict! What he didn’t know was all of the non-narcotic meds I had used to try to get rid of the migraine before going to the ER! ERs just don’t get it! In fact, this particular ER doesn’t even have a code in their data base for Migraines, only “headache”! They are a very very last resort for me!

  • Sally
    4 years ago

    I normally won’t go to the ER unless it is an absolute last resort and nothing else is working. My last visit was a perfect example of why. After waiting over 2 hrs to be seen I get a PA who clearly knew virtually nothing about migraines. Insisted on giving me Toradol and Reglan even though I told him I had already tried it at home. He said it was a miracle combination and my headache would be gone when he returned in 20 minutes. Was clearly disappointed when this did not work. Told him only thing that works when I get to this point is Demerol. I need to sleep. Asked how often I use narcotics. Thought my husband was going to punch him. Only would give me Delaudin. Finally gave up and went home. Total waste of time.

  • Krystolla
    4 years ago

    Thanks for posting this, it gives me some hope. I’ve pretty much given up on ER visits, no reason to suffer through the trip and the wait in order to be treated like a criminal.

    I’ve had everything from much needed hydration and painkiller to ‘there is nothing we can do for you’. I had an earnest young doctor tell me that Benadryl was the new miracle drug for migraines, it would just take a while to work so I should go back home to wait. I know I’m not my own best advocate in the middle of a migraine.

    Now I’m thinking if I come up with a plan with my neurologist maybe I’ll have a better chance of actually getting help next time.

  • riverleigh
    5 years ago

    My last trip to the ER was a mess. I would rather eat nails then go to the ER. I wait until I am so sick and debilitated and so far beyond pain before I go. HATE the ER. I had a migraine for 7 straight days. I went to the clinic to see my doctor on day three. He gave me a Toradol injection. It didn’t help. Went back the next day. Same thing. By the end of the week it was obvious I needed hydration therapy and stronger meds. After 10 hrs in the ED, and having been given IV fluids, IV Reglan, Toradol, Benadryl, Zofran, Ativan and flexaril, I came home. It took days to get over the medication and the truth is the headache was still there-I just didn’t care…

    I have been going to the same ED for thirteen years. I may have to see an ER doctor maybe once in two or three months. Maybe. But still there is no routine for treating people with migraine and really it is “what you get is what you get”. Depends on the doctor. I receive my healthcare from the Veterans Administration. The nearest VA hospital ED is over 40 miles away. I cannot drive when I have a migraine so I cannot get to the VA ED when I am sick. My doctor is not available after 4pm or weekends and there are no on-calls in our VA system. When I come to my local ED it is the luck of the draw if I get treated with respect or treated as a drug seeker and unfortunately there is no doctor I can reach to verify that yes, I have migraines and at times require emergency intervention. There is no doctor who can vouch that I am not in the ED “to get all the narcotics ever prescribed on the planet to satisfy my horrible drug addiction!” It’s just me and sometimes a friend who show up needing help because medication failed.

    I am a nurse and so I do understand all the ins and outs of treating patients who need pain relief. I am drafting a letter to the head of the ED to ask if a protocol could be created to treat migraine in the ER-one that would reduce wait time and provide a waiting place, identify need and standardize medicinal response. Perhaps if such a protocol were in place coming to the ED for the help migraine sufferers in this area need will improve and doctors would have a framework from which to work that would ease their concerns about prescribing pain medication-particularly those drugs often associated with abuse or addiction. I am also considering starting a migraine support group so that perhaps more voices could be heard in this area about the seriousness of migraine. For now though, the ED experience is the one experience of migraine that I HATE the most. It tops the list of what I could wish away if I could wish away anything about migraine.

  • Ujima Moore
    5 years ago

    Jamie. Thank you for the great idea regarding patient relations. That is a very proactive approach to prevention and treatment. At one point I had great health insurance provider and everything was a one stop shop and the ER was like my home turf and they new what I needed without any fuss. But occasionally I did encounter that one provider who treated me like an addict and disregarded my input.

  • Ujima Moore
    5 years ago

    Thank you for sharing and I think the ER visit is one many of us can relate to. In 2007 I was visiting the ER once a month and endured many misguided pain management treatment until a change in insurance at my job resulted in an effective temporary fix for debilitating pain. At first doctors thought I was drug seeking or just didn’t know what I was talking about until I flat out refused the typical drugs they expected me to want. They tried vicodin, Tylenol, Ativan, valium, morphine, Percocet… all the usual suspects. During a visit a sympathetic physician discovered Dilaudid is the only thing that worked. Sometimes vomiting before a shot helped the pain for several hours. Which would allow me enough time to sleep and prepare for the rebound.

  • Vanessa
    5 years ago

    I don’t think a lot of insurance carriers cover trips to the ER that are not life-threatening.

  • Katie M. Golden moderator author
    5 years ago

    I wanted to share that I just found out about a bill that’s being introduced in Congress called NASPER (National All-Schedules Prescriptions Electronic Reporting) that would create a National data base to monitor prescriptions for opioids. This could potentially help us in not getting treated like a drug addict in the ER. The treating doctor would be able to go to the database and see how many doctors have prescribed opioids for you and be able to treat you accordingly. The Bill also supports finding ways to create opioids that include abuse deterrent technology. Meaning if you crush it up (as many addicts to do get a better high), the pill would take on a jelly form therefore making it impossible to snort. Let your legistlator know if you support this Bill. Here’s more

    http://www.durbin.senate.gov/public/index.cfm/pressreleases?ID=5aa9c928-1dc6-417d-8385-b9de1c68b693

  • Katie M. Golden moderator author
    5 years ago

    Jamie,
    You’ve got some really great suggestions on what’s working for you!
    That’s so smart to work with patient relations BEFORE needing to go to the ER, making the experience more smooth. Being proactive and not reactive is the best approach.

    And I’m going to steal the idea of writing thank you notes to the ER docs!

    Thanks for sharing!
    -Katie

  • Patricia Aldridge
    5 years ago

    Hi Katie, Wow, I felt like I was reading my story. I can’t tell you how many times I have been looked at like an abuser of drugs, I have even been called a “drug addict” by Physician’s. One of them made a mistake of saying it in front of my husband, not good. When it is time for me to go to the ER, I am at the point that it is time to get a “cocktail by IV” which consists of Toradol, Benadryl, Pheneragen & Demerol. It took many years to find the right combination. Like you I had doctors that had no problem understanding that cocktail and had no problem administering it to me. But on the other hand, I have had many who refuse to give it to me. My Neurologist even understood why Benadryl was part of the cocktail where other doctor’s questioned it. Like you I had a standing order, but I ran into the same problem, some honored it and most didn’t. To this day, I am refused treatment at the ER, they want to give me meds that are not painkillers and there is a reason why I am at the point of an ER visit. So, thank you for posting your story. For the first time, I don’t feel alone. I still don’t get treated and the sad part is they won’t even call my Neurologist.

  • Katie M. Golden moderator author
    5 years ago

    Patricia,
    You are not alone! It really sucks when they won’t take the time to call your neurologist. Like you, I go to the ER when I’ve exhausted all other options with what I can do at home and know that the strong stuff is what I need to break the cycle. I pretty much use the same cocktail that you do. All we can do is come prepared and hope for the best!
    -Katie

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