My Migraine Rollercoaster

Migraines have been a part of me since I was in middle school. At first, we didn't really know what was causing them, as there were a lot of things going on at that time. For a couple of years, it seemed as if my migraines would come and go at random times and we never knew why. I took ibuprofen almost daily for my migraines up until my freshman year of high school.

High school

My freshman year of high school was not my year, to say the least. I had an allergic reaction to ibuprofen randomly after I had been taking it for years. I hyperextended my knee in soccer and had to wear a long leg brace for two months. Then the day after finals I had my gallbladder removed. I didn't think I would make it past finals, as I had four gallbladder attacks that month. Since I became allergic to ibuprofen all I can take is Tylenol and that doesn't do much at all for me. My migraines started to get worse at this point.

Looking for relief

They first thought it was a tension headache and they tried different things to help that, but nothing did help. Since nothing was helping, they thought maybe it was caffeine headaches and they wanted me to drink caffeine daily. Tried that and still had these awful headaches. My senior year of high school my doctor did a sleep study and said it was normal so the only option left was botox. At this time botox was not easy to get approved by insurance so I never got the chance to do it. My doctor said botox was the only option left so there was nothing more he could do for me. So I went on my way and just dealt with the migraines for years.

TMJ and other comorbidities

When I was in college, I started having different kinds of migraines and I found out I had TMJ. They tried so many things before they had to do surgery for my TMJ. After the surgery, my migraines went back to my “normal”. I started to develop other health problems so I pushed my migraines to the side to focus on the other problems I was having. At the age of 19, I developed fibromyalgia. When I was 21 I had a severe fibromyalgia flare-up and started to go to a new pain and rehabilitation doctor. He noticed I may have a sleeping disorder and that my migraines were getting worse and worse. He sent me to a sleep specialist where after some testing I got diagnosed with Narcolepsy type 2.

Migraine treatment

After my diagnosis of narcolepsy, they focused on my migraines. They first had me take Topamax and they tried different doses until I was getting severe side effects. I am allergic to ibuprofen and since I could only try certain medications, I was running out of options. I got to the point where I was getting migraines daily and had to take Sumatriptan and Tylenol almost daily and half of the time it didn’t even take the migraines away. A little more than a year ago I started doing the Emgality injection once a month and it was a lifesaver. I went from headaches daily to maybe once or twice a week. This month I started on Ajovy because of insurance, and I am hoping this helps just as well.

Learning to advocate for myself

Due to my fibromyalgia, I have constant muscle tightness in the back of my neck which causes a lot of my migraines as well. In a couple of weeks I will be starting botox on the back of my neck so I am hoping that will help even more. A big thing I learned from my journey is that advocating for yourself is so important. Only you know how you feel so don’t settle for anything less than you deserve!