The Lights Were Kind of Fun

I was about 10 years old when I had my first migraine attack. I remember being in the kitchen and describing what I was seeing - colorful flashing lights that weren't there. They reminded me of the blind spots you get after looking at a bright light for too long, except these lights moved, changed, and were unlike any light source I remembered seeing before.

Fascinated by my aura

My mother and my sister, who is less than two years older than me, felt my description sounded very familiar. They told me it was probably a migraine and shared their experiences and what I might experience soon. I found it interesting but wasn't feeling any pain, so I continued playing outside. I was excited by this new experience; the colored flashing lights were fun to see. I was fascinated by what my brain could conjure separately from my surroundings. I went outside to play with my little brother and some friends/distant relatives who had come over.

Then the pain settled in

I don't remember how long it was before the pain started. It gradually increased, perhaps just a few minutes later. I can't remember if the lights faded or lost their charm once the pain arose. I decided to go back inside and admit defeat. I had a headache, and my tummy started feeling a little off.

Trying to retreat into a dark, quiet room

Encouraged by my family, I got into bed. My sister asked if I thought a warm or cold washcloth would help - I always preferred cold. I tried to sleep while they tried to keep my shared room as dark and quiet as possible. It was a sunny afternoon in the middle of Texas, the TV was on in the living room, and seven kids aged 5 to 16 were in the house.

Vomiting through the night

I didn't notice much besides the pain and nausea for hours. I wanted to avoid vomiting, but it was inevitable. If sleep would have prevented the vomiting, I didn't get to sleep soon enough. I don't know how many times I had to get out of bed and go to the bathroom to throw up. I might have slept for a while, but still felt off in the morning. I remember waking in the night, feeling a bit better, and sneaking into Mom's room to ask if I should eat something since I hadn't wanted to eat since the headache began.

An excused homework assignment

Mom wrote a note to my math teacher, asking her to excuse me from turning in my homework on time because of my migraine the night before. I liked having an accepted excuse, but only showed the note to the boy next to me, because I realized we had no homework due that day.

Fluorescent lights and light sensitivity

Fluorescent lights flickered in a way that I couldn't tolerate, even when I didn't have a headache, and they often triggered one. All my classrooms had those long fluorescent lights embedded in the ceiling, or hanging down, which was even worse. I still hate all kinds of task lighting. My light sensitivity has never gone away; it doesn't always cause headaches, but sometimes it does. In college, I even got a migraine from sunlight off the white of a vanilla yogurt while on my way to class.

Noises and sound sensitivity

Noise has always been difficult, and there is no way to escape it. I can hear my pulse and other internal sounds even with earplugs or headphones. Earplugs barely block out external noise, and the internal sounds are even louder. Headphones are generally better, providing slight noise reduction and white noise, which makes concentrating easier. Noises that bother me most include screeching or screaming, traffic - especially combined with the stress and smell - and loud music, certain alarms, etc.

No one could pick me up from school

When I was 13, I told my first-period teacher I had a headache and might throw up. She first told me to just put my head down on my desk, later allowed me to go to the bathroom, and once I told her "I did it," she said I should go to the nurse. I didn't have any phone numbers memorized; there were no cell phones back then. Dad was out of town for work; even if I could call him, he wouldn't have left work just because I was sick and wouldn't have gotten to me before school was out. Mom was busy taking my two youngest siblings to doctors' appointments out of town that day.

Managing migraine in the nurse's office

The school nurse let me try to sleep in a small room with a little bed covered with plasticky, artificial leather. She couldn't give me medicine without parental permission. When she asked what my Mom might give me if I were sick, the only thing I could think of was orange juice. Another kid said I should have asked for a Coke or Pepsi, but Mom never let us drink colas. Later, she told me a little soda pop might have settled my stomach. I managed to sleep a little in that room, but I ended up throwing up several more times at school.

Missing school while at school

A few days later, a lady in the main office recognized me and asked if I was the one who was so sick. I eventually got so bored that I decided to go to my last class before heading home on the bus. It was P.E., so I didn't do much once I told the teacher why I was late. I might have had time to visit my other classes with a note from the nurse, asking if I could make up for the work I missed. My family wouldn't have known about my day if I hadn't told them. I had practically missed an entire day of school while at school because I had nowhere else to go and couldn't participate. I didn't think of it as being sick, though, because that wasn't how my family described it. I hadn't realized I had a migraine that day until I described my symptoms to my Mom, who said it sounded like a migraine.

My first period

The first time I got my period, I experienced a headache and abdominal pain that made me run to the bathroom to throw up. Dad took us to do some last-minute Christmas shopping at Toys R Us while Mom stayed home with my baby sister, who had just had open-heart surgery. I started getting headaches and severe abdominal pain during my periods, which was what I thought was supposed to happen. I didn't always throw up, and I don't remember noticing auras during my periods. I usually bled or spotted for more than a week. If I had a migraine, I might not have realized it was happening during my period.

Looking back

Now that I'm over 50, my migraines are milder, less frequent, and I understand them better. Hormones played a significant role. I was likely experiencing hormonal changes during my first attack, even if the outward signs weren't visible yet. I didn't ask to see a doctor because it felt like my parents' responsibility, and I didn't think I had control over my situation. My older sister talked to a doctor and tried medications to manage her migraines. I'm not sure if her migraines were worse or more frequent than mine; maybe she just talked about them more. Perhaps Mom discussed one child's migraines with doctors and thought she didn't need to do the same for the others. Having a baby with life-threatening health issues probably made other concerns seem less urgent.

Never formally diagnosed

As an adult, I tried discussing my headaches with several doctors, but I felt I already understood what was causing them and didn't expect much new information. One doctor asked me to make another appointment to talk about headaches, but he had just told me I didn't have the condition I'd sought help for, and I often had multiple issues to discuss. When filling out forms about migraines, I typically check "yes," but if asked if I had a formal diagnosis, I check "no." I don't believe all my headaches are migraines; many have been sinus-related. Recently, some have come from cervical spinal stenosis. There are likely other factors as well.

It's only migraine with aura

I call it a migraine if I see an aura. My aura starts as an arc of zigzag confetti that flashes and changes colors, beginning at the center of my vision and growing toward the upper right, sometimes fading before it gets to the edge. Usually, the headache starts just after the aura begins, but sometimes the headache starts after the aura is gone. In recent years, that's all it does, especially when I'm taking hormone medicine. When I was younger, the aura was a sign that I needed to relax in a cool, dark, quiet place. If I had a headache before getting into bed, I would likely vomit, usually more than once. It's motivation to try to sleep, but thinking about it doesn't make it easy. Now I go to bed whenever I feel stressed. Most of my migraines have been behind my right eye, but as the pain intensifies, it spreads everywhere, as if it can't be contained. I've also had headaches behind my left eye, though I can't recall if those were associated with an aura on the same side.

The length of my attacks

Usually, my migraines last a few hours, but if it's a mild attack, it may only involve an aura and some sensitivity. If I'm trying to lie in bed but need to get up and vomit every few minutes, I don't consider it over until I've slept and woken up without a headache. I likely will retain some sensitivity for at least a day or two, but the intense pain that makes it impossible to focus usually only lasts a few hours. It's been years since I experienced that level of pain, likely due to my age and hormonal changes.

The risk of hormone therapy

About three years ago, I talked to my doctors about resuming hormone therapy to help control my menstrual symptoms. I learned that some doctors don't recommend certain hormones for people with migraine. I was also reaching an age where doctors became cautious about hormone therapy due to blood pressure changes. If my blood pressure was elevated and I had migraines, the hormones could increase my risk of blood clots at my age.

I told my nurse the story of my first migraine, and she laughed, "Because a 10-year-old would think that was fun." To get an idea of how close I was to menopause, she instructed me to skip a pill on Sunday and come in for labs on Monday. When I arrived on Monday, the lab had no lab orders for me, and when I told them who sent me, she didn't remember meeting me. I shared my first migraine story again, and she laughed as if hearing it for the first time. I got the blood test that day and had a brief discussion afterward. I was unsure if they wanted me to continue the pill, so I stopped.

New diagnoses

A year later, I found out I was anemic and finally had the chance to talk to a gynecologist about my symptoms. Imaging suggested I had endometriosis or adenomyosis. I'm now on medication for it. It stopped my periods entirely, which is nice and seems to alleviate some headaches and my pelvic and lower back pain, but I still have sciatica from the spinal stenosis and often painful gut issues that I am learning more about.