To the Doctor who ignored my Rare Disease because he thought I was drunk,
I don't blame you. I get it. A girl in her mid 20's comes in disoriented with slurred speech and shielding her eyes from the light, obviously assuming she's drunk seems like a pretty good call. It seems like a safe call. Except there was nothing safe about it.
I was quickly approaching the 4 hour stroke window (according to my neurologist). I knew I needed a CT scan. I knew we were running out of time. I was afraid this time it wasn't just an Hemiplegic Migraine, I was afraid it was an actual stroke. And I was scared because I had no way to tell you what I needed.
By the time I got to you I had already been to an urgent care center. I had collapsed there and hit my head, which is when my speech went out. I had had symptoms coming on slowly for an hour before I arrived in urgent care and even though I had multiple hemiplegic migraines in the weeks prior to this, this one felt different, so I went in.
They called an ambulance to take me to the ER you worked at. Somewhere in between being at urgent care and getting to you it was never relayed that I had hit my head. If it had been, I would have been sent to get a CT scan immediately. But since it wasn't, I was put in a bed and left in a hallway.
The ER was really crowded and understaffed that night so there were no rooms left and you had to have a male nurse give me an EKG in the middle of the hallway. The nurse looked so embarrassed, he asked if I had had one before and I tried to nod yes. He looked a little relieved, and said he was glad I knew what was going on. After the EKG he poked my finger with a needle. It was the 4th time that had happened that night. They kept telling me they needed to recheck my blood alcohol levels since no alcohol was showing up.
He put my bed back in my spot in the hallway and said you'd be there soon. The next hour or so is a blur since HM's cause a lot of cognitive problems. I vaguely remember you coming over and me trying to say my name and that I was there for a hemiplegic migraine, but it came out as a jumbled mess. I can't remember much of what you said. I remember you leaving and coming back a few times. And I remember you telling me to calm down when I started crying and saying that you can't help me until I can tell you what is wrong with me.
About an hour and a half after I got there, a female nurse came over and said she was going to start an IV. I was so afraid it'd be like the last time I went to the ER for an HM, the doctor would wait until I was exhausted, drug me and send me home with no memory of how I got there. I was finally alert enough to find my phone and send my friend my location and told them to get someone there. I couldn't be alone anymore, not if I couldn't talk. I was afraid someone would mess up and give me the wrong medication or something. Of course this freaked out my friends, they know I never ask for help so if I am asking, something must be seriously wrong.
She picked up my right arm to place the tourniquet, but when she let go to grab it my arm fell back down. She asked me to lift my arm, and was frustrated when I didn't. She lifted it again, but it fell the second she let go. She looked at me and asked if I was able to lift my arm and I tried to shake my head no. She asked what I was in for and I tried to say 'hemiplegic migraine' but it was still coming out jumbled. She took my right hand and asked me squeeze as hard as I could. When my hand didn't move she dropped it and ran to get you.
I could hear her explaining my symptoms as she led you to me and said she thinks it was time to call a stroke code. You told her that wasn't necessary, I was just drunk. She told you she has already checked my blood alcohol level and that wasn't it. You grabbed my right hand asked me to squeeze, and when I couldn't, told the nurse to insert an IV into my left arm while you continued checking me for a stroke. After she got the IV in my arm she tried to move my phone. I took it in my left hand and started typing as fast as I could. I saw you roll your eyes, thinking I must be fine if I'm texting. I handed the nurse my phone and she started reading it to you. "I have hemiplegic migraines. They mimic a stroke. This happens a lot, but this one feels different. I only come in if it's different. Please help me." You asked what was an HM and she left to go Google it.
When she came back she explained what it was while you finished. You were trying to get my eyes to follow your finger up, down, left, right. But my right eye was unresponsive, much like the rest of the right side of my body. She told you in rare cases HM can lead to a full blown stroke, seizure, or a coma and that it was time to call a stoke code. You were only half listening, you were more focused on trying to get my eye to respond. You tried snapping and acting as of you were going to hit me, but I didn't respond at all. You asked if I was alert enough to type and asked how long have I been having these. I typed "9 years." You asked if I had seen a neurologist or headache specialist. I typed "yes, 11." She asked what they suggested and I typed "they don't know, it's rare. But the last one said go get checked out after 3 hours." She looked at you and said again, it's time to call a stoke code. You asked how long had this one been going on. I typed "6:30pm" and you pulled the nurse away, hoping you were out of earshot and said "It's after 10. She's been here for an hour and a half and I ignored her because I thought she was drunk. I've never heard of these before, but I get why she was crying. She's having a stroke. She knew what was happening and had no way of telling us. She knew exactly what she needed. I might have just killed this girl and what's worse is she knows it." The nurse told you I wasn't dead yet, but I might be if they don't do something. She asked again if it was time to call a stroke code and you finally said yes. I quickly text my friend before you came back and told them to get somebody there asap, it didn't matter who. The nurse rushed me to CT and you left to go find the neurologist.
By the time we got to CT I could tell she was about as scared as I was. The nurses moved me, strapped me in, and did the scans without removing any of the metal on me. Another nurse ran in and said they had recess ready for the stroke patient, but she said it wasn't needed. It wasn't a stroke. The other nurse in the room said if it wasn't a stroke what could it be, and she said it had to be a hemiplegic migraine.
She brought me to a room and said they would ask the neurologist what to do next. I typed out "no triptans, no narcotics" and she said she'd make sure the neurologist knew. I checked my texts and had a few from my friends asking if I was drunk. One of my friends was there and was told they couldn't see me because I was drunk and sleeping it off. I text her and told her to come back to my room and that I had been in CT when she got there.
Over the next few hours my friend and I talked over text. Even though she knew I had a lot of health problems, she had never actually seen one of these before. I had her call my mom, who was across the country in Seattle. Her and my little sister were ready to catch a last minute flight to New York since it had been a long time since I had one that bad, but I had my friend tell them it was fine, I just thought they should know. The nurse came in and talked to my mom for a while and said that they had just given me some medication. My mom told them to monitor me closely, because usually the medication makes it worse and depending on how high my pain levels are, I'll black out and forget everything. Sure enough, after 20 minutes it made my pain worse, but I was slowly getting my speech back.
I could see you walking past my room to see how I was doing although you never came in. I had my friend ask for my nurse, but they said she was with another patient and someone else would come in. I told them my pain was becoming unbearable and I needed something asap. You came in and asked how I was doing. I said it hurt worse and you looked so relieved to finally hear me talking after 6 hours. You came over and took my hand and asked me to squeeze it. I tried, but I still couldn't move it. I could see the fear in your eyes and hear the panic in your voice as you begged me to try harder. My friend told you I couldn't move and started to explain why. You stopped her and said "I know...I-I'm...her doctor," then you left.
My nurse came back as soon as she could and was happy to see I could wiggle my right foot. I had sent my friend home, it was late and I just needed someone there while I couldn't talk. She gave me more medication and told me to get some rest. I called my mom and talked to her for a while, then tried to take a nap. A few hours later the paralysis had subsided enough that I could begin to move my right side. My nurse came back in, thrilled to see that I was able to sit up and asked what happened. We sat and talked for a long time about what I have and my life with HM. She told me she had assumed it was alcohol, but once she checked the BAC she had no idea. I told her no one ever knows what to do so they give me meds and send me home. And that the assumptions that I'm just drunk and not sick are a huge part of why I haven't drank in over two years. She said next time come back there, since now my charts are in their systems and I'll be able to get help faster.
I could see you standing outside my room watching me. After a long time you came in. You said you were glad to see I was okay, then you left and never came back in. I was discharged a few hours later by the male nurse that did my EKG. He told me he hopes he ever has to see me again, but at least they knew what it was now and would be able to help.
So to the doctor who ignored my hemiplegic migraine because he thought I was drunk, I hope you know I don't think this is entirely your fault. I don't blame you. Not for the lingering paralysis, not for the weeks of recovery I had to go through, not for the cane I had to buy, not for the jobs I lost while I was recovering...none of it. When you have a disease that only affects 0.03% of the population (according to the migraine center) it's not a shock when no one knows how to help you. And this really does happen all the time, multiple times a week.
I'm not better, but I'm getting there. It's been about 6 months since that night and I'm pretty convinced I will never have as much feeling in the right side of my body as I do in my left. I don't need my cane as much, but I've found it definitely makes navigating NYC with HM easier. The brain fog has been awful, but I'm managing okay.
But I do hope you learned something that night. I hope you went home after your shift and educated yourself on hemiplegic migraines in case you ever encounter another patient. Or in case I come back, and with my luck it's only a matter of time until I do. And I'll make sure to come back to your ER, because no matter how bad it was, it's still the most help I have ever received in an ER for these. But next time, I won't be so understanding. Next time, if you ignore me and say I'm just drunk, it will be your fault.
Photography by Amanda Crommett