Most of the time, a headache is just that. A headache. A continuous pain in any part of the head. Although there are many different types of headaches and headache disorders, it is estimated that about 50% of the adult population worldwide had at least one headache in the past year. Yet sometimes, a headache is a bit more complicated than “just a headache,” as my story will show.
I had my first migraine when I was 13 years old. It was the day of the Christmas assembly at school, when classes were shortened to allow for music and competitive games in the gymnasium at the end of the day. I felt so awful when I got dressed, with this throbbing headache focused on one side of my head that made me feel like I was going to throw up. I buried my head under a pillow because I was sensitive to light and sound. I stayed home for a few hours and slept it off on the couch before my mom took me to school in time for language arts class. I didn’t experience a migraine again until I was in college, when I had a regular run of them during my 5th and 6th years of pharmacy school. After that, I would typically have a few migraines a year, mainly during major seasonal changes or large weather systems.
All of that changed the day after New Year’s Day in January 2016. Pain medication I took for chronic pelvic pain gave me a bout of nausea, so I went to lay down for awhile. I woke up with a tremendous migraine, so I took another nap. I didn’t think much of it because I sometimes get migraines after sleeping and having particularly vivid dreams. But two days later, I developed a migraine on my drive into work. Granted, it was rush hour and I was running late, which added to the stress. I toughed it out for a few hours before heading home a little early to get some rest. But the next morning, I woke up with a migraine so bad I deemed it necessary to go to the emergency room. I was given pain medication and IV fluids, which helped tremendously, so I figured I must have just been dehydrated. Besides, sometimes when I would get migraines in the past, I would be more sensitive for a few days following the migraine, easily getting another migraine.
However, this trend continued on an almost daily basis. I had to call off work multiple times throughout the month of January, resulting in enormous tension at my workplace. (I work in a busy 24/7 hospital pharmacy, so covering my shifts at the last minute often proved challenging). Sometimes I woke up with a migraine, sometimes they occurred at work. Once I had one hit while I was driving into work through a snowstorm and I almost puked all over the steering wheel, which caused me to nearly wreck my car as I starting doing a 360 on a slippery bridge. Thankfully God was with me and I managed to get control of my car before hitting anything.
January 18: “I’m incredibly restless. I can’t sit still at all. I feel tremendous anxiety about missing work today. I feel like a horrible person. But I don’t know what else I can do about these headaches! Maybe I have a brain tumor. It would certainly explain a lot.”
I had 20 migraines in January alone and they showed no signs of winding down as we moved into February. I called the “same day” appointment line one day in January when I wasn’t able to go into work and was told the soonest opening with a neurologist was 4 weeks away. Sigh. But I took it anyway, since I needed to figure out what was going on.
January 23: “This is really blowing my mind. Why does this keep happening? I can’t think of anything else I can do to help myself. I am so sick and tired of having one problem after another. I can’t stand feeling sick all the time. I just want to feel well. I don’t know what to do. I’m doing everything I can think of. Certain things help sometimes, but nothing lasts. I have a headache 24/7 and it escalates into a migraine almost every day, sometimes multiple times in one day. This isn’t any way to live. I just want this to end. I just want to feel better.”
Things got so bad in February that I went on a 2-week continuous leave of absence from work at my boss’s suggestion. It was during this time that I finally had my appointment with the neurologist. He did a thorough history of my headaches and a neuro exam. He actually asked me if I wanted an MRI. I deferred to his judgment, but agreed it wasn’t necessary at the time based on my completely normal neuro exam. I was diagnosed with status migrainosus and given prescriptions for
a zillion eight prescriptions, two of which were to treat the current episode, four prophylaxis meds to take every day, and two rescue meds. He told me to call if I wasn’t feeling better by the following Monday.
Well, I wasn’t. So I called the office and they got me scheduled for 3 days of migraine infusions that week. My first infusion was scheduled for right after my appointment with our reproductive endocrinology and infertility (REI) specialist, as related in I Have What, Now? That day, the medications were split into 7 separate infusions since one of the medications required a test dose to ensure I wasn’t going to have a bad reaction to it. The time went by rather slow, but over the 4 hours we were there, my pain gradually improve from a 5/10-2/10, although it crept back up later that night. But that’s what multiple infusion days are for! And I was thrilled that the day after my third infusion, I was headache free for the first time in 7 weeks!
But it was not to last. The next day I had an intense migraine that lasted all day, one of 12 migraines I was to have that month.
A week after my infusions, I woke up with such a bad migraine I knew a visit to the emergency room was necessary. Luckily, the same physician who had taken care of me during my ED visit in January was on, so we were able to update him on what had happened in the interim. We mentioned that our REI specialist had run some labs and the results had just been released and my prolactin was high, which, per our research, could be indicative of a tumor. To rule anything out, the physician decided to run a CT scan.
“Then I had my CT scan, which took about a minute. I sat longer in a wheelchair in the hallway waiting to be brought in than they actually spent scanning me. Luckily, the scan came back normal, so they were able to give me Toradol and rule out a brain tumor. So at least that’s a relief. [ED physician] said anything large would have shown up on the scan, so unless there’s something really tiny on the pituitary, it would have been seen.”
After seeing the neurology team, I was given a steroid burst and sent home on a steroid taper (I preferred that over being admitted for more migraine infusions). The staff neurologist also recommended increasing my dose of amitriptyline, one of my prophylactic medications, from 30 mg to 50 mg.
It was only 4 days after that ED visit that we would learn that everyone’s initial thoughts regarding my diagnosis were about to be proven wrong. Follow the rest of this story in Hell in My Head.