“This won’t go back to normal / If it ever was”
– “Soon You’ll Get Better” by Taylor Swift ft. Dixie Chicks
As of today, when I am now writing this, it has been ten weeks and four days since I was discharged from the hospital following treatment for an intense migraine. I feel very strongly that I should write about this – that I want to write about this – but I almost don’t know how to. The bruises on my arms from the IVs and the blood draws are gone now, but I still feel bruised. Parts of my time in the hospital, and the time that led up to it, seem black to me now, but thinking about the entire experience conjures an anxious feeling in me that is almost akin to a fight-or-flight response. I still haven’t decided between fight and flight. I suppose my body automatically chose fight for me, but my brain is still leaning towards flight. I don’t think I will ever be able to truly convey what this time was like for me. If you did not live it, or at least live it with me, I don’t think you will ever be able to understand. Unless my life mirrors yours. To my fellow migraine sufferers, my fellow spoonies, I salute you. We’re pretty tough, if you ask me.
This all began in September, perhaps the second week or so. Exact details are completely lost to me now. I got a migraine. This is not exactly something to write home about, seeing as I live with chronic migraine and deal with a constant headache that fluctuates to a full-blown migraine multiple times a week. This particular migraine did not go away, which isn’t out of the ordinary for me either. Several times a year, I will have a migraine that lasts for about a week, at which point I contact my neurologist and I go in for an IV infusion of multiple medications to break what I have come to call the “migraine cycle.”
There was a hitch in this plan this time. I had recently begun seeing a new neurologist. It wasn’t that I didn’t like my old neurologist, or that I thought he wasn’t doing enough. It was just that nothing was changing and I was frustrated and I wanted someone else to look at the situation. Initially, I had been satisfied with the care I was receiving from the new office. I had gone into the office for an infusion over the summer to break a migraine cycle. These positive feelings changed rather quickly when the new office basically did nothing to help me. For weeks, I lived with this migraine. I endured this pain. They did not return phone calls. They were slow to set up an infusion. It was awful.
At this point, it was October. Yes, October. It had been a month. And there was something different about this migraine. It was an ever-present companion. The pain level ebbed and flowed. At times it was better and at times it worse, but it never left me. I started to feel desperate. I felt like I was going crazy. I rested in dark rooms. I did yoga. I used ice packs and cold cloths. I even went to urgent care for an injection of Toradol, an anti-inflammatory medication commonly given for migraine pain-relief. The next day I took my Shakespeare midterm because I felt slightly better and I didn’t want to have to deal with putting it off and thinking about it later. The day after that, my new neurologist’s office finally got in touch with us and said I could come in for an infusion that day. I was given a combination of medications that I had taken before and gotten relief from.
That was Wednesday. Everything changed Thursday. I woke up at four o’clock in the morning confused. I wasn’t really sure why I was awake, and then I realized it was because of my head. The pain had woken me up. I tried to fall back asleep but I couldn’t. I couldn’t do anything really, other than wake my mom up and tell her that something was wrong. I tried to lay back down again, but I couldn’t stay still. My father gave me a priesthood blessing. I took Tylenol. I kept grabbing my head. At some point I sat up in bed and started rocking back in forth. I always try to avoid crying for any reason when I have a migraine because it makes the pain worse, but for the first time in my life the pain was so bad that I was involuntarily shedding tears. The words of a Taylor Swift song, the same one I quoted at the beginning of this post, kept running through my head. When I have a migraine, the pain is always concentrated in my forehead but this time the entire right side of my head was hurting.
And then suddenly the pain subsided, just a little. Enough to make me think that instead of rushing to the emergency room, we could start by going to urgent care. The same doctor who saw me a few days before when I got the Toradol injection was there, and she wasn’t wasting any time. She noticed the entire right side of my head, where the pain was so bad, was red – from my cheek to the skin behind my ear. She called the emergency room and sent me there immediately with papers explaining what she had seen.
My experience at the ER was not a pleasant one. Despite the severity of my symptoms and how they differed from what I was used to, my nurse was disinterested at best. The attending physician wrote me off as just another migraine patient and ordered the typical “migraine cocktail” they give in the ER. The only person who seemed particularly concerned was a medical student working with the attending. By the time I had received the medication they had ordered, I didn’t feel “cured” by any means, but my pain level had decreased. Combine that with the fact that I was so sedated I could barely walk and I was ready to go home. It wasn’t perfect but I hoped it would be enough.
My struggle with my new neurologist continued. I was given new medication to try, but I was told that if that didn’t work, there was basically nothing else they could do. It was at that point that I made an appointment with my old neurologist. While waiting for that appointment, I continued to be in extreme pain. I was barely able to work on assignments for school. I was barely able to do anything, really. There were multiple times that I debated returning to the ER. One day, when things were particularly bad and I was back in I-think-I’m-losing-my-mind-mode, my dad gave me another priesthood blessing. I am not exaggerating when I say I experienced a miracle that day. My pain decreased more than it had in weeks. I was able to rest that night. I was able to keep going. I know this was a tender mercy from my Heavenly Father.
Finally, on October 29th, I saw my old neurologist. I think he could tell something was wrong, aside from the fact that I had told him a very long (and, to me, traumatizing) story. I always brush off what is wrong. I always say I am okay when I am not. But that day I looked in his eyes and told him he had to do something because I could not continue in that state. He submitted orders for me to be admitted to the hospital the next day.
And so, after waiting half of the next day for the hospital to call and say that they had a bed ready, I was admitted. I was, somewhat shockingly, happy to be there. I knew that this was the first step to me feeling better, and I was willing to accept being in the hospital if that’s what it took. By the time I was admitted it was rather late, so only one thing happened of note that day: my port was accessed. I had my port implanted because I get IV infusions regularly and I have horrible veins. However, when you’re in the hospital, you can’t just simply have the nurse access your port, as one would expect. First the attending physician has to put in an order for your port to be accessed instead of just a regular old IV. Then you wait several hours. Then the “IV Team” comes to see you. They are not just regular nurses – they are IV professionals, and, by extension, port professionals. The two members of the IV Team who came to see me, Bob and Dave, quite honestly deserve their own reality show on TLC. Bob was training Dave, who was new to the hospital, and Bob had quite obviously missed his true calling as a stand-up comedian. He kept up a running commentary while preparing to stick a needle in my chest. At one point he almost fell on top of the chair my dad was sitting in. It was an experience, and it was the exact hilarity that I needed after having just been admitted to the hospital for the worst pain of my life.
My neurologist was a bit concerned that there could be another cause for the severity of my pain, so he ordered several tests. The problem was that if I had something like a ruptured blood vessel, the migraine medication he would give me would worsen that. Therefore, everything had to be ruled out. This was how I ended up getting a dose of Ativan at six o’clock in the morning on my second day in the hospital because I have slight claustrophobia that could bother me during the MRV (a form of MRI that looks specifically at the vessels in the brain). (To be clear, I have had more MRIs in my life than I can count, and I have not needed any medication to assist me since I was, like, six. The doctor was worried about me.) Before my MRV, I was taken to get a CT scan where I met a super-nice, super-gregarious nurse who, upon hearing what I was there for, told me, “Well, you’re just falling apart, aren’t you?!” (Yes, yes I am.) I was supposed to go to the MRV immediately afterwards, but they weren’t ready for me. In fact, they weren’t ready for me for hours. Meaning the Ativan I had taken was pointless. To top it off, they gave me another dose of Ativan. So I was feeling nice and calm for that MRV, which was actually a highlight of my time in the hospital. Those of you who have had any form of MRI done before know that it is very loud. I think somehow I ended up in the pediatric unit, and the very-nice technician asked me if I wanted headphones during the test, or if I wanted to listen to music, asking, “You like pop music, right?” I was ready to sob right there on the spot. That day, Selena Gomez, Halsey, and the Jonas Brothers got me through my ordeal.
By the time I got back to my hospital room, the attending physician (who just happened to my own neurologist on this day) had determined that my test results were okay and I could proceed with the planned course of treatment. This treatment was DHE, a fairly extreme migraine treatment that is typically given via IV. DHE can be given in outpatient infusion centers, but getting it in the hospital is preferable because of the extreme side effects it can cause. I was feeling very optimistic when I began the DHE even though I knew it could be intense. However, it was only a few hours before I started noticing those dreaded side effects everyone talked about. I was hit with extreme nausea that was almost unbearable. My nurse brought me crackers and soda and hesitantly informed me that sometimes the nausea can be so bad that patients cannot continue the treatment. Eventually, I had to take a dose of Phenergan, the anti-nausea medication that had been prescribed for me. I’ve taken Phenergan in the past and I’ve had some mild issues with restlessness because of it. But what happened that night was unlike anything I have ever experienced. I was up all night with severe muscle spasms that would not stop. What made it even better was that Phenergan is a very sedating medication…as is Ativan, which I had had an extra dose of. So, when I tried to get up and move around, I was quite literally flopping back in my hospital bed because I didn’t have the strength to get up. This seems really funny to me now, but at the time I thought I had reached my breaking point. At some point I managed to get a few hours of sleep. I woke up that morning feeling horrible, vomited, and went back to sleep. Later that day, my mom mentioned something that the doctor said when he made his rounds that day and I had absolutely no memory of it. Thankfully, they switched my Phenergan to Zofran, which I have no problems with.
At some point during all of this madness, I got another visit from Bob and Dave. My neurologist wanted to give me some additional medication to attack the migraine that was not “compatible” with DHE, meaning it could not also be run into my port. I needed another IV, but since I am such a hard stick, they sent in the IV team with their fancy ultrasound machine to find a vein. And find one they did, although it was quite deep and a bit difficult to get to. This IV worked fine for approximately twenty-four hours, at which point it began to hurt. My nurse checked it and ensured and that it was still in the vein, but sent the IV team to look for another possible spot. This time I was visited by another, less entertaining member, who found another, much less painful spot for my IV. Getting stuck twice was worth it when the first IV began to hurt more than my head.
I can’t quite accurately describe everything that happened in the hospital. Everything has bled together in my memory. I also feel like a part of me has blocked some of it out because it was a very painful time, not just physically, but emotionally as well. I can remember bits and pieces, like when I went for another MRI and said I could walk instead of using a wheelchair and almost fell over. I remember that the food was basically inedible and my parents had to keep going to get me pound cakes and brownies from Starbucks. I remember my favorite daytime nurse who made me laugh so hard at one point that everything felt okay for a second. I remember my favorite nighttime nurse who tried her best to let me get as much rest as possible even though they have to come check my vitals every few hours. I remember getting my blood drawn in the middle of the night so the results would be ready for the doctor in the morning. I remember most of the side effects of the DHE fading, except for the leg cramps which only bothered me when I stood up (which wasn’t very often). I remember my mom reading texts and Facebook messages from family and friends to me. I remember attempting to watch Live PD but falling asleep.
Most of all, I remember thinking I would go home one day. But then my pain increased again. And the attending came back and said he had talked to my neurologist on the phone and he had said I had to stay another day. The second he left the room, I dissolved into tears because part of my mind thought those twenty-four hours meant everything. And then I remember finally being discharged the next day. I was not completely well. On that magical scale of one to ten, my pain level had decreased to about a four. That was good enough for the new attending. And at that point, it was good enough for me too.
I cannot fully explain the ways in which this has changed me. My migraines are mostly back to normal now. My pain is no longer unbearable. They have returned to their natural rhythm. But nothing else has. The only thing I have done since I have left the hospital is go to see two movies and go the store a few times. All of these excursions have left me in bed for two days following. I spent some time with my extended family recently and it was a true highlight for me after all that I’ve been through. It knocked me out for three days. I can barely leave the house for medical appointments. I went through a long period of time when I couldn’t even read. If you know me, you know this was like a death sentence. I have very little physical strength. And to be honest, I have very little emotional strength left at this point.
I had a very profound thought during all of this. I would go so far as to call it a revelation. It happened shortly before I was admitted to the hospital. I was praying, pleading with Heavenly Father not so much for relief, but for comfort. And it was then that I realized that He had always been with me – that Jesus had always been with me. They were with me in my room on that Thursday morning when the pain was so bad that I genuinely thought I might be dying. They were there with me in the emergency room. They would be there with me in the hospital. They would be with afterwards. Even if I felt alone, I would not be. Even if I felt like I couldn’t keep going, I would. They would make sure of that.
“When You don’t move the mountains I’m needing You to move / When You don’t part the waters I wish I could walk through / When You don’t give me answers as I cry out to You / I will trust in You”
– “Trust in You” by Lauren Daigle