Betsy


I have had hemiplegic migraines since I was around 6. I was sitting in my house watching TV (I can still remember what was on that night) and went numb. I couldn’t string two words together properly. I was acting drunk and looked like I was having a stroke. I didn’t understand what was going on, but ended up in the ER. I remember being up all night in pain, with tubes, monitors and weird stuff on me. But all the tests showed that everything was completely normal! [Tweet this]

I got migraines every 6 months like clockwork as a child. My parents handled them like they were an annoyance and obviously had been told by the doctor what to do when I had an attack. But a child with hemiplegic migraines? I realize now how scary it must have been.

My migraines scared people. I would suddenly look drunk or like I was having a stroke. Then I would get violently ill with sensory issues. I chose not to discuss my migraines much. When I had an attack, the school was generally kind. I had a good relationship with our school nurse. She was terrified the first time she saw me during an attack. I told her what to do and what to expect beforehand. She was awestruck by my patience, understanding and maturity for a 12 year old.

Through high school and college, many people didn’t understand that my migraines were real and serious. My freshmen-year roommates made my migraines a living hell, flashing lights on and off and blasting rock music at full volume. It was bad. One girl complained to the school that I shouldn’t have special privileges just because I have a headache. The problems got so bad that I was approved for a medical single for my sophomore year. I still got migraines, but learned that with a daily pattern of working out, eating and studying properly, I was able to control them. Even with the typical college life of partying and late nights, I survived knowing I could not pull all-nighters. It took a lot of discipline.

Since then, I have worked in politics and retailing. I have learned how to deal with the headache pain, and the nausea seems to have faded away. I still encountered managers who didn’t believe how bad my migraines were and companies that were unsupportive. I have dealt with migraines most of my life. They are still a pain, but I’ve learned to control them with 21 years of trial and error. Honesty is the only way I’ve been able to stay in the working world with them.

I realize now that my migraines have taught me how to be calm in bad situations, how to communicate effectively, and how to deal with things. I have learned to see the positives about them. I see and hear things better. I feel things more intensely than most people, and often joke that my migraines are like a reset button. They still suck – I just try to see the silver lining. [Tweet this]