Tolosa-Hunt Syndrome

*WARNING: the pictures you will be exposed to may make you feel scared or worried, so I wanted to make sure everyone is aware. Thank you!*

People who live with Autism are more likely to live with another mental or physical condition/illness/disability than any other kind of disability that people live with. If you thought I was only living with Autism, wait until you read about this part of me.

Not only do I live with Autism, I live as well with a rare, migraine condition known as Tolosa-Hunt Syndrome. Ever since I was 7 years old, which in coincidence was the year after I became verbal, I started to have migraines a lot. Except, I was having migraines in my left eye. Only in my left eye! I remember it started when I was 7 years old because it was when I was still attending my specialized school, Children’s Center of Monmouth County. I recall not feeling well on the bus rides with my migraines that I use to feel nausea and actually vomit. I had times I had to be brought back home cause I could not make it through. My migraines get so bad that they even make me feel nausea, no matter where I was. Plus, I always feel so out of it and very weak that I cannot get up from bed because the pain intensity of my migraine can get insane.

I have a neurologist that I have been seeing since I was 3 years old, so when my parents called him one late night to let him know what was happening to me with my migraine condition, he told my parents to immediately take me to the hospital. At 7 years old, I encountered my first hospital visit. My migraine condition was getting in control of me that my left eye was feeling stabbing pain all the time and the pain intensified, due to any migraine medication not working for me. As a result from my first-full experience with my migraine condition, my left eye was left in paralysis and turned outward. Plus, I had no control of my left eye lid, nor even my left eye at all. I was stuck like that until the end of 6th grade. It was not easy living with one straight eye for many years. I faced annoyance on its own, even when I was not having a migraine. Despite of performing everything with one straight eye, I did not let it get in the way of my life; I still was being an independent person. I even earned my black belt in taekwondo with one straight eye!

In 2010, and in the summer after 6th grade finished, I received laser eye surgery to correct my left eye. It was a 50/50 chance that my left eye would recover from paralysis and from being turned outward. I will say that it was a miracle! My left eye was back to normal, such as gaining some control of my eye itself and my eye lid. The only exception is that it is stuck dilated forever, as a result from the surgery. After my surgery, and as orders from my eye doctor, I had to perform eye exercises, such as focusing on a pencil coming towards me, to gain muscle in the nerve of my left eye. I did my eye exercises for many years after my surgery, but now no longer need to.

Ever since I was 7 years old, I was hospitalized, year after year, until I was 18 years old. My parents always stayed with me during my hospital days, no matter what was happening with them or with my family. It was not easy for me in my life because I missed out a lot, due to being in the hospital. I have gone through MRI tests, CAT scans, and etc, to make sure everything is good in my head; I always received no changes, as a result from my tests, and that my head is good.

There is so much I have learned about living with my migraine condition. For instance, I’ve learned I cannot take regular migraine medications, like Tylenol nor Excedrin, because my body has built an intolerance to them that it no longer helps me. Currently, I have to take medication that is only prescribed by my neurologist to control my migraines. Plus, my migraines occur in any season and happen the most in the middle of the night; I try my best to go to sleep early, due to them occurring at that time. I will say it has been a lot better with my migraine condition than it used to in the past. I think its because I understand the signs and symptoms of my condition more of now that I know take medication right away. I even keep a spreadsheet for every time my migraines occur in my left eye. My mom helped me change the foods I eat, as well as got me into being active on my own for my health. It is important to educate yourself about what you live with because it can help improve your life towards a healthy lifestyle.