The Day That Changed My Life

Prior to getting NDPH, I never knew that people could have headaches that lasted more than a few hours or maybe a day. I also had no idea that there were such things as headache specialists. When I first heard of these things, it took quite awhile for me to get used to the idea! In retrospect, I’d been having episodic migraines 1-2x a month since I was a child, but nothing that wouldn’t go away with a little rest and maybe some motrin. I never knew they were migraines as for the most part, I didn’t really have a lot of nausea or have to lie down in a dark room for extended periods of time. Nobody in my family had ever had migraine, so this wasn’t familiar territory. So let’s go back to January 17, 2001.

I was a sophomore in college. This was at the very beginning of my spring semester, sophomore year. I was 20 years old. I’d recently decided to change my major (not a big change, but sort of a change within the same program), and I was very happy with my decision. It was not a stressful time for me. I say these things because I’m often asked if I was under a lot of stress at the time I got the headache. I was actually sitting in a classroom, waiting for my 9:05am music theory class to start. It was around 9:00am when I first noticed it – this constant pulsating in the right parietal region of my head. If I could draw a line up from my ear to the center of the right half of my head, and then go down maybe 2 centimeters or so, this was the location of the pulsating. It hurt – but it wasn’t excruciating by any means. I thought I simply had “your average headache.” Later, when asked to describe the headache, I kept saying, “Well I’ve had some headaches before, but this is different. The headaches I had before were just your normal headache. You know what I mean?” The doctors would say, “Well…what is a normal headache for you?” I would look at them, puzzled, and say, “Well – I used to get throbbing. I couldn’t stand being around heat. Sometimes I would feel nauseous, but I didn’t throw up. Bright lights bothered me.” The doctors would then inform me that my “normal headache” was in fact, a migraine. I’d had no idea that I’d been having episodic migraine for years!

The first migraine that I can actually remember experiencing was when I was about 8 years old. I was in the basement of our church, practicing for First Communion. We’d been given grape juice and a piece of bread, and we were watching a movie about Jesus and The Last Supper. I remember feeling very sick to my stomach and having this pain across my forehead and behind my eyes that I simply could not explain. I didn’t say anything. To me, it was bizarre to feel this way, and I didn’t want to attract attention. Later on, I remember experiencing the same thing on and off – one night I had a bad one as I was sitting at home in front of the fireplace in our family room. I kept having to go lie down on the living room couch because the fire was too hot. I felt nauseous, and my head was throbbing terribly. But these headaches usually left within a few hours or by the next day.

So when I noticed this bizarre pulsating feeling in my head, the only thought I had was, “hmm…that’s odd…” I went out to the water fountain, took 3 motrin, and went back to class. I thought it was strange that this pulsating did not go away over the next 3 days. I was exhausted, as I wasn’t sleeping very well, and the pain had been steadily increasing. I felt drained from this constant drone inside my head, and it was becoming difficult to focus on my schoolwork. On day 3 of the headache, I called my mom and told her about what I was experiencing. I asked her what she thought I should do, and she suggested that I go to the student health center.

So that same day, I went to our student health center. The doctor there asked a number of questions and did a neuro exam as well as examined my eyes. This was the first time I remember having to describe how this was different from my “normal headaches” and what my normal headaches really were. The doctor diagnosed me with status migrainosus, and he prescribed naproxen (basically prescription-strength Aleve) and promethazine (phenergan, an anti-nausea drug).

That evening, I returned to my one-bedroom apartment that I shared with a roommate who I knew from choir. My roomie wasn’t home when I took the first doses of these medications. The promethazine completely knocked me out. When my roommate came home, she started making dinner and was making a lot of noise in the kitchen, as I was asleep, unmoving, in a chair about 8 feet away. She grew concerned as time went by, and I didn’t even change position. She later told me she even walked over to make sure I was still breathing!

The next day, I awoke still in pain – only by this time, the pain had gotten so much worse. I was scheduled to take the first four sections of the PRAXIS exams for teacher certification that day. (I was in a music education program at the time.) I didn’t want to take the promethazine again, because I couldn’t afford to sleep through the exams and risk failure, so I simply took the naproxen and went to sit for the exams. The first four general exams are considerably easy, and the sections I sat for were reading, listening, math, and writing. I remember sitting there in the listening section, feeling the ever-increasing throbbing in my head, and thinking to myself, “What if this is the last thing I ever do? What if this is an aneurysm in my head, and I die right here taking the PRAXIS? How much would that suck….” Looking back, that’s kinda funny, but at the time, I was terrified! I didn’t know if I had some sort of brain tumor or other serious problem going on. I actually had a benign tumor when I was in high school, so the thought of a brain tumor was actually seeming like a real possibility.

The PRAXIS exams were on a Saturday, and as the weekend progressed, I was starting to get very upset. I was talking on the phone to my parents quite a lot, and they were trying to be encouraging, but I was literally starting to flip out. I couldn’t understand why this headache wasn’t going away, and I was really getting worried about it. On Monday, I went back to the student health center and saw the same physician. This time, I was in even more pain. He decided that we should get a CT scan of my head, and that’s when I decided that I wanted to go home. I was in college about 3 hours away from home, and my dad drove up to pick me up.

My family doctor, who I’d been going to since I was 11, had office hours on Mondays until 8pm, so he saw me as the last patient of the day. He was a great, very caring physician. His twin daughters actually took piano lessons from the same teacher I took from prior to going to college, so we had an additional bond. He was truly concerned over what was going on with me, since he knew I didn’t have a history of migraine – or so we thought! My memory is fuzzy on the early meds he prescribed for me to try to knock out the headache, but I know he prescribed fiorinol and a triptan, which I think was zomig in pill form. I went to the CT scan, which was normal. My headaches continued to get worse, and none of the medications were helping. I was tyring to remain calm as getting worked up simply made things worse, but I had several moments where I was really freaking out over what was going on. We called my family doc after trying all of his recommendations, and he suggested I go to the ER for some bloodwork and an attempt to break the headache. He called ahead to let them know we were coming.

At the time my parents took me to the ER, it was 8 days into my headache, and the first time I would run into some serious stigma issues regarding headaches. I saw a physician’s assistant in the ER, and to this day, I still remember her name and what she looked like. She was nice enough at first, but I think her frustration began to mount as she continued to try various pain medications and my headache just wasn’t really improving all that much. She tried demerol and then dilaudid and then toradol. After the toradol, my headache level actually dropped down to about a 5, so she planned to discharge me. However, I had received all of these medications in pretty close proximity to one another, and I started vomiting. As she realized that I was vomiting repeatedly, she sighed and said, “Well…you can’t go home like this. Now we’re going to have to admit you. They’re going to have to put a tube down your nose if you don’t stop vomiting.” Tube? Nose? Doesn’t sound good… She left the curtained area, and my mom went out also to check on something. At that time, my mom overheard the PA announce to everyone within hearing range that, “This girl has a headache for attention.” I’m glad I didn’t hear that at the time… It was bad enough to be going through this, and that would have really been too much for me to deal with at that point. As the PA was going off shift, my mom was at my side and called out a thank you to her, but the PA dismissed my mom’s gratitude with a hand wave and a frown as she hurried off.

There were no beds in the hospital, so I had to stay in the ER. They brought a hospital bed into the room where I was so that I could sleep on that instead. I was begging for a glass of water or ice chips, but they wouldn’t allow me to have anything. I really just wanted to rinse my mouth out. The doctor who came to see me next was a hospitalist who had been on service for a lot of hours! I remember how tired she looked, and she kept apologizing for being so tired. Wish I could remember how many hours she’d been on, but I do know that it was more than 24! She was very nice… She first mentioned the possibility of an NG tube to drain the contents of my stomach, but then when she asked me about the vomiting and learned that I hadn’t been vomiting prior to coming to the ER and had only vomited twice while there, she said the NG tube wasn’t necessary. Apparently the PA had told her that I had been vomiting all day and wasn’t able to stop. I felt relieved knowing that I wasn’t going to have the NG tube placed. Her plan was to hydrate me and start me on dilaudid. Up until that point, the only time I’d ever received pain medication in my life was after I had the tumor removed. I didn’t know anything about medication overuse headache, formerly called “rebound headache”, but this was the treatment they were offering me. I had not overused any pain medication prior to the ER visit that would have led to medication overuse as the cause of my intractible headache. “Rebound” has never been a part of my headache diagnosis, and I am glad for that. But at any rate, I was started on dilaudid to try to break the headache. Because narcotics like dilaudid only mask the pain as opposed to aborting the actual cause of the migraine (which is what the triptans do), I continued to have the throbbing. Sure, it was a little more dull, but it was still there, and it was upsetting me that even on strong pain medication, I still had this stupid headache. Now I felt loopy, but was still in pain.

At around 5am the next morning, I saw a neurologist for the first time. He said that actually, he was still at the hospital when I came in the night before, and if they had paged him then, he could have seen me and straightened some of this out a lot sooner. Well, I don’t think the PA really felt much like helping me, to tell the truth! He ordered an MRI. In the meantime, a bed opened up, and I was transported up to a regular unit. Upon arrival to the unit, one of the nurses started flipping out and saying that she couldn’t take one more patient. Another nurse nearby said that she was taking me – that the other nurse was not getting a new patient. Later, she apologized to us for the other nurse’s behavior, and my mom said to her, “It’s okay – I don’t think we would have wanted her anyhow!” haha… We never asked for much and didn’t want to be a bother, but it was nice to have a kind nurse and not someone who was very outward about considering us a burden!

That morning, I was taken to the MRI. I remember them reading me a consent form and stating that I needed to sign it. I was so loopy still from the dilaudid that I was having a hard time even seeing the form to sign my name. They asked me what type of music I wanted to listen to while I was getting my MRI, and I said I wanted to listen to classical music. I remember later regretting that as I was stuck in the machine – whatever classical music was playing was very generic and had a very off-key flute! I remember laying down on the scanning bed and having the big plastic part that slides down over the head to keep your head still put into position. I wasn’t scared at that point, but I think I was almost in shock from how much had happened in the last 9 days.

Later that afternoon, I was back in my room with my parents. My dad had actually sat down on the floor between the wall and the bedside table as the room was cramped, and my mom and I kept telling him to get up! We didn’t want anyone walking in and seeing my dad sitting on the hospital floor. haha I remember my roommate talking so loudly. I was so oversensitive to any stimulus at that point that every sound made me feel nauseous. The neurologist came in with two other doctors to give us the report of the MRI, and I remember my dad scrambling to get up off the floor as he was sort of stuck between the bedside table and the wall. My mom and I were of course mortified, but now it’s a funny story when we remember it! The neurologist said that my MRI was fine – that I had some “freckles” on the brain, but that if you scanned any person’s brain, there were bound to be things that would be abnormal. He said that there was a possible cyst on the pituitary, but this wasn’t anything to worry about and not the cause of the headaches. He suggested a follow up MRI in about 6 months. I later learned that the “freckles” he saw were a few of the nonspecific white matter lesions that now have been connected to migraine, although the real cause and implication of them is still unclear. The only other lab value of note was a slightly elevated thyroid level – I can’t even remember which one. He then said that since I didn’t have a brain tumor, there was nothing more he could do for me. He wrote a prescription for a 10-day supply of dilaudid and for a steroid taper. He then said I could follow up with him or just go to my family doctor. He was very abrupt, and he didn’t stick around to answer questions. Instead, the doctor with him, which I suspect was a resident, stayed after to actually write the prescriptions. While the neurologist had been very flippant over the MRI and lab results, the resident showed much more concern, urging us to follow up and get these things checked again – especially the thyroid levels. He answered a few of our questions, and then I was discharged.

Once I got home, we called my family doctor to give him the update. He told me to throw out the dilaudid so that I wouldn’t risk getting rebound headache, so I did throw it away. He didn’t have any other suggestions for now. I missed a week of school, and then my parents took me back to college. The next 6 months were very stressful for me. I had always been a straight A student, and I was having a hard time focusing on classes and practicing piano. I spoke to my parents on the phone quite a lot. I felt incapacitated by the pain many days. Because there was no clear prescription that I should take, I mainly just didn’t take any meds – and relied on ice packs and rest. I spoke to my family doc on the phone from time to time, and he always offered sympathy that things weren’t improving, but he didn’t have many ideas for what else to do. He suggested that I see a neurologist, and that summer, I went to my first neurologist…

…To be continued…