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A Tale of Two ER Visits

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?”

Wow.

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 finally answered. “I just couldn’t handle the pain anymore.”

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.

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

  • rmyoung10
    1 month ago

    I know I’m a couple of years late on commenting, but am in the midst of an intractable migraine and doing some research.

    I usually have fairly mild migraines that are wiped out by Maxalt. Or, they’re weakened enough to be barely noticeable. Because of that I waited over a week before calling my neurologist about how to handle it. (I now know to go in much sooner…)

    My neurologist didn’t send me to the ER, I just did IV therapy in her office. They have a room set aside for it. I got Toradol, an anti-nausa drug, magnesium and fluids. Didn’t wipe it out completely. I didn’t have time to sit for another IV, so got a prescription for Prednisone. I’ve only taken one dose, but migraine is still here.

    I’m concerned about what will happen this weekend when my neurologist’s office is closed. Not sure if I should power through or go to the ER and possibly have an experience like this. My pain has gone anywhere from a 2 to an 8, making it’s way to 9.

  • Rosalita
    3 years ago

    I’ve had nearly identical experiences. There is a “Dr. Black” at the ER I use. When IV steroids did not even dent my pain, he sent me home saying he could not do anything else for me. I asked him to please not discharge me. He made me leave. I considered suicide when I returned home. The pain was unbearable. If I didn’t have children, I may have followed through. I ended up returning to the ER hours later. Thankfully, Dr. Black was gone. I was admitted and stayed for 2 days while they tried to get the pain under control. I’ve seen Dr. Black again since. He refused to give me any pain medication until I was again admitted which was fine with me. However, the first pain medication he gave me was Tylenol. Yep, plain old Tylenol tablets that I immediately threw up. Then we I got to my room he refused to order pain medication through my IV and made me take Vicodin tabs even though I was vomiting. Great guy. Doctors like him are one reason chronic migraneurs end up committing suicide. Very unfortunate that people like him go into medicine.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Ugh. I too am sorry about your experiences Rosalita.
    elizabeth

  • DonnaFA moderator
    3 years ago

    Hi Rosalita, I’m so sorry to hear that you had such a terrible experience. Did you speak to the hospital board to report the way Dr. Black treated, or failed to treat you? You may want to read Tips and tricks for a successful Emergency Department visit which may be helpful to ensure that you don’t have such an unpleasant experience again.

    Thaks for sharing your story. We’re glad that you’re here. -Warmly, Donna (Migraine.com team)

  • tlocker
    3 years ago

    1. TOTALLY agree with the labwhisperer, at the time if awful ask right then and there– or when well, CALL the patient advocate and explain your experiences: good and bad is best, but at the time bad most important.

    2. GET A LETTER WITH RECOMMENDED MED REGIME IN ER. Either from your Pain Specialist, Headache Specialist or Neurologist, especially if local. Even a PCP or the ER doc that treats you well outlining what disorder you have,what works, how long you’ve had the disorder,how long they’ve been treating you, etc. While ER docs don’t always follow it exactly, I’ve found it helps. I carry one in my billfold, local ER has it on file; and have not had a bad experience since.

    3. Many insurance companies have “Care Coordinators” available for chronic disorders. As someone on this line mentioned, spending thousands of dollars on unneeded ER care is something insurance (including Medicaid) would like to avoid — they may be able to help. Dig around in your insurance papers or website — or call and request one.

    4. Seems like gray hair and wrinkles helps. Apparently they haven’t read the stats on painkiller abuse, but as I’ve gotten over 40 and then 50, there seems to be less concern about my “drug seeking”. Of course we are “drug seeking”, we are in PAIN. Duh.

    Lastly, I wish all ER docs were forced to eat a quart of ice cream in 4 minutes without any warm water, just to get a “hint” of the pain we experience.That’s just me being mean.

  • tlocker
    3 years ago

    1. TOTALLY agree with the labwhisperer, at the time if awful ask right then and there– or when well, CALL the patient advocate and explain your experiences: good and bad is best, but at the time bad most important.

    2. GET A LETTER WITH RECOMMENDED MED REGIME IN ER. Either from your Pain Specialist, Headache Specialist or Neurologist, especially if local. Even a PCP or the ER doc that treats you well outlining what disorder you have,what works, how long you’ve had the disorder,how long they’ve been treating you, etc. While ER docs don’t always follow it exactly, I’ve found it helps. I carry one in my billfold, local ER has it on file; and have not had a bad experience since.

    3 Lastly, many insurance companies have “Care Coordinators” available for chronic disorders. As someone on this line mentioned, spending thousands of dollars on unneeded ER care is something insurance (including Medicaid) would like to avoid — they may be able to help. Dig around in your insurance papers or website — or call and request one.

    4. Gray hair and age helps. Apparently they haven’t read the stats on painkiller abuse, but as I’ve gotten over 40 and then 50, there seems to be less concern about my “drug seeking”. Of course we are “drug seeking”, we are in PAIN. Duh.

    Just have to add, I wish all ER docs were forced to eat a quart of ice cream in 4 minutes without any warm water, just to get a “hint” of the pain we experience.That’s just me being mean.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi tlocker!

    I’m so sorry that it took me so long to respond to this. Thank you for your comments! For a time, I did have a letter from the physician treating my migraines to take to the ER with me stating that she knew about my situation, that she was fine with me seeking treatment in the ED, and letting them know what works. EVERY doctor I ever gave it to resented the fact that they were being told what to do. I imagine every hospital is different. Probably the doctors there now wouldn’t be offended, but the nice ones don’t need to see a letter / treatment plan anyway.

    I am 43. I dye my hair, but I guess that could be one of the reasons things have gotten better for me at the ER!
    Best,
    elizabeth

  • labwhisperer
    3 years ago

    There is a patient advocate/ombudsman at all hospitals. PLEASE contact them with your experiences. Also, writing a letter to the hospital CEO may help spark some change. I suffer from migraines- were chronic, now down to 4 a month. I am also a director of a patient care department in a hospital. I am someone who worked in the trenches for 20 years before going into management.
    I will tell you that we don’t want Physicians with bad behavior either. To do that, we need to hear your experience. I am sure other patients and nurses have been treated poorly too. Our hospital reads patient letters at our monthly hospital wide meeting. We cringe when we hear your “story” but are greatful so we can have some ammunition to deal with our problem employees.
    Also, with the narcotic overdose epidemic, horrible regulations are being forced upon Physician’s, hospitals and pharmacies. Your experience helps us modify them too.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    labwhisperer,

    I’m sorry it took me so long to respond to this. THANK YOU so much for your comments! It’s wonderful to know that there are people on the inside who really care about our experiences. Next time something bad happens there, I WILL write a letter to the CEO. When I fill out comment cards, I always write that I appreciate the care I receive there (I have never gotten a comment card for Dr. Black, of course). Thank you again. ~elizabeth

  • DonnaFA moderator
    3 years ago

    Hi labwhisperer, thanks so much for sharing your insight. So many of our members struggle with ER trips, it’s nice to know that a real avenue for change exists.

    We’re glad that you’re here! All Best, Donna (Migraine.com team)

  • ChoctawCharli
    3 years ago

    I am fortunate to live in a small town. But we are lucky enough to have a WONDERFUL little hospital. It has both a very modern and well equipped ED and a wonderful Outpatient Clinic BOTH located within the hospital itself. I emphasize this because of an interesting quirk in Obamacare law. My cronic M are so bad I end up at the ED any where from 2 to 4 times a month. For the last several years, with the encouragement of the VA Authorization Department, I went to the Outpatient clinic. I get shots for my migraines instead of IV. We have discovered the shots take longer to work, but work longer. Anyway, three months ago, I went to the OPC (where everyone knew me, called my doctor almost before I could lay down and I was usually on my way home in less than 45 minutes) and was told I had to go upstairs to the ED from now on, because the rules had been changed. I had to been SEEN by a doctor. Hmmmm. Okay, so now I go to the ED which, BTW, is approx 3x more $ than the OPC. Guess what? Only once in the last 4 visits have I SEEN a doctor. They just call, I still get the same Rx, the same way, for three times the amount of money. I know, I am not paying the bill out of my own pocket, but still…..

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi ChoctawCharli!

    First of all I’m sorry it took me so long to respond to this. I’m going back through old articles to look for comments I might have missed. I’m glad that your little hospital is so great! I’m in a small town too. And I live in fear of rules changing. I am glad that you still get treated well, even though your insurance has to pay more (and therefore probably you too). Take care! ~elizabeth

  • treat2c
    3 years ago

    Hi Elizabeth!

    I was both happy and sad about your post. Sad because your experiences are parallel to my own, but happy to hear that I’m not the only person to receive mixed levels of care.

    For me, I spent a year where I was in the ER about once every six weeks. Some of the doctors were awesome, but some clearly did not believe in treating migraines with painkillers, which were required whenever my migraines would become out of control over a course of several days. In addition to the pain, my migraines made me dizzy, nauseous and unable to sleep more than a couple of hours a day. Even when I came to the ER throwing up with a rapid heartbeat, highly elevated blood pressure and tears of pain streaming down my face, there were some doctors that insisted on treating me with the exact medications that failed me at home before trying anything else. This meant that they purposely and willfully delayed stabilizing me, sometimes for over an hour, just to prove that what I already told them about my migraine’s lack of response to those meds was true. Those doctors would eventually treat me, but I was subjected to a lecture on how they were doing me a favor because they do not believe in having migraine patients come to the ER for treatment.

    Personally, I want to tell them to shut up about their personal beliefs and Do Your Job! My insurance pays good money to keep me stable. I pay good money to my neurologists and pain specialist to see me on a regular basis, but my migraines are so severe that even with all of that support, the medications fail. Sometimes, intervention is required and when a patient requires those services, the ER doctors are obligated to provide assistance. They are NOT required to pass judgement on their patients. If they need to screen for drug abusers, do that. When you realize there is no history of drug abuse, I do not care how often a patient has the symptoms that support the need for treatment, shut up and help!

    My firm belief is that nothing will change until migraine suffers demand that the people who set the policies at every hospital in the country, foster initiatives that treat every migraine sufferer. This includes training the staff in how to compassionately and respectfully treat those patients who require treatment for chronic, aggressive migraines.

    As a side note, I got so sick in July that I was admitted to the hospital for a DHE treatment. It took 5 days, but it worked. I still have headaches, but the treatment significantly reduced their severity, allowing my at home meds to do their job.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi treat2c! I’m sorry it took me so long to reply to this. I used to go to the hospital about once per year for DHE infusions lasting 2-3 days. I also used to have DHE at home. Now after years of shortages and my tolerance for the side effects going down, I no longer use it at home, and my hospital’s policies changed so I can’t be admitted there. The only way to be admitted is through the emergency room.

    I have dealt with so many doctors who simply don’t “believe” those with chronic illness should come to the emergency room for treatment. It’s so frustrating.

    Thanks for being here!
    elizabeth

  • DebinIndiana
    3 years ago

    Dear Elizabeth, I read your article with great interest and empathy. Wow, it’s nice to know others go through this. Unfortunately, my neurologist office is the one that patient shames me rather than the ER and I just dread starting over again. The way things are said, the attitude, does make all the difference to us as patients. Now when I have compassionate care anywhere, I tell them how much it meant to me, so they know it really does matter! Thanks for sharing!

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Hi Deb, I do the same and always let the people who are kind know how much I appreciate it. I’m sorry that your neurologist’s office doesn’t treat you well and I understand exactly what you mean about starting over. It is so so hard. I have to find a new family doctor and even though our new insurance is all set I am dreading making the calls. Thank you so much for your comments. I’m glad you’re here!

  • RockyMtnGuy
    3 years ago

    My sister used to end up in the ER with migraines. She would suffer aphasia and lose the ability speak, which would cause panic among innocent bystanders and they would call 911. I have always tried to avoid going to the ER because they have no idea what to do. They used to shoot my sister full of morphine, which did not cure the migraine, but made her feel so good she didn’t care. My solution was to go jogging, which usually made the migraine so bad it crashed to a halt.

    However, when sumatriptan came out, it made things a lot better. I had to use the injectable version because in a very severe migraine my stomach shuts down, and the pills don’t work, so I had to put it directly in the bloodstream. Nowadays, I start by using the pills, and if that doesn’t work I use the injector.

    Lately I have discovered that ginger is just about as effective as sumatriptan. Sublingual application. Put 1/4 teaspoon of ginger powder under your tongue, and wait 10 minutes. Your tongue absorbs the ginger, knocks down the migraine and lets the sumatriptan pills start working. Amazingly, ginger is about as effective as sumatriptan. I found a clinical study on PubMed that proved it. It just doesn’t last as long, in my experience, and even ginger can have nasty side effects if you take too much. But, ginger candies, who can argue with that as a migraine cure?

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Thanks for your comments! I love it when I find something simple and easy that really works. Ginger makes me gag, but I have read great things about it for nausea. Sumatriptan works great for me too. Take care!

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