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Finding the Cause of My Chronic Migraine Headaches

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I have coped with migraine headaches since I was 5 years old. Since this wasn’t typical for a 5-year-old, my parents took me to the pediatrician, who at first accused me of faking them for attention. My parents told them I wasn’t the type of who faked sick and was very honest. I was then sent us to a neurologist. The neurologist ordered a CT scan of my brain to see if he would be able to tell if something was wrong. Though I was very young and don’t remember most of this, I remember being scared and my parents and extended family being worried and scared.

Upon getting the CT results, the neurologist told us that there was an irregularity and he needed me to have an MRI to get more detailed images. In 2000 even MRI images were very low resolution. The MRI showed a small cerebral cyst about the size of a grape blocking the cerebral spinal fluid in one of the ventricles of my brain. I didn’t understand most of this, and wouldn’t until I took anatomy and psychology classes in college.

After finding out about the cyst, the doctors told us they were surprised that migraines were the only symptom caused by the cyst. They also added that the cyst might not actually be the cause of my migraines. They told us that cerebral cysts are congenial, meaning I was born with it, and usually not cancerous.

I underwent brain surgery in the summer between kindergarten and first grade. I remember being very scared and upset. I was mostly upset that the nurses and surgical staff wouldn’t let me take the angel pin my grandparents had given me to protect me in surgery into the operating room. Not my proudest moment, but what do you expect of a scared 5-year-old?

The surgery itself was very “simple” as far as brain surgeries go according to the neurologist and neurosurgeon. The procedure involved drilling a small hole into my skull and inserting a syringe with a tiny needle to pop and drain the fluid from the cyst. I was in a medically induced coma for about a week, so the scar tissue the syringe had created could heal. I was very fortunate that the surgery itself did not cause damage. After a couple weeks of being in the hospital and undergoing two more MRI’s, I was finally released.

My family and I were very disappointed to discover I was still having constant migraine headaches that I rated a 7 on the pain scale. I then underwent a few more tests and procedures during first and second grade, and the doctors tried several different medications to try to control them. I vividly remember having a spinal tap and it hurting really bad for a couple days after. I returned to school directly after it. My parents didn’t want me missing anymore school than I absolutely had to. I remember my teacher and a couple of my friends in first grade checking up on me that day.

When I was 7 years old my constant migraines stopped. We believe this is mostly because I had stopped eating processed lunch meats that contained nitrates. In sixth grade I began having migraines again once a month or so. These migraines would only last a day or two, but they came with extra symptoms including blurred vision, confusion, nausea and numbness of my hands and face.

This type of migraine is the only one I have a clear memory of. I was in in my sixth grade English class and we were discussing part of a Shakespeare play in groups of four or five kids. I was reading and talking to my classmates when my vision started to blur and my head hurt worse than I could ever remember it hurting. I was sensitive to the flourescent lights and the noise of the room. After several minutes of trying to wait it out, I finally asked the teacher if I could go see the nurse. When I got to the nurses office she took my temperature, which was normal. She then handed me an ice pack, which for us was a frozen sponge in a zip lock wrapped in a paper towel, and told me to go back to class. I was scared that I was unable to confirm our address and my mom’s cell when the nurse tried to verify it.

I was about halfway down the hall when the nurse came out of the office, calling for me to come back. She had just read my file and saw that I had a history of migraines. By the time my mom arrived to pick me up I was very confused and slurring my speech because I couldn’t think well enough to form a sentence. I could not tell my mom and the nurse my locker combination, address or home phone number. I also had some patches of numbness that were moving around my hands and face.

My mom drove me to Children’s Hospital in St. Louis where I had my surgery years earlier and helped me into the ER. We had to wait two hours before there was a room available. By that time my migraine and all the other symptoms were gone. After that I went back to the neurologist who tried out several medications. I was then getting migraines once every six months or so. I stopped eating processed meat again which helped, and I continued like this until college.

In college the stress and undiagnosed anxiety and depression caused me to have migraines, and again I had stroke-like numbness in my face and hands that moved. I panicked and went to the hospital thinking something might be really wrong. I was told that numbness is sometimes part of migraine symptoms. My parents and I did decide that I should have another MRI to rule out any changes with the cyst or regrowth. I found this process facilitating now that I had some knowledge of brain anatomy from my psychology classes.

I started to rule out other foods to figure out what was causing my migraines and the numbness. I finally figured out I was having a reaction to MSG. Since glutamate in monosodium glutamate is a neurotransmitter, the artificial MSG I was eating was causing my neurons to misfire, causing patches of numbness. For a while I decided to eat vegetarian and that helped a lot because there is natural MSG in red meat. I now eat only chicken, fish and pork to avoid the natural MSG, and my migraines are very infrequent as long as I avoid MSG.

Getty image by Katarzyna Bialasiewicz.

Originally published: March 6, 2019
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