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The idea is simple. Let’s teach each other about each other. About our health and wellbeing. And about our illnesses. Furthermore, let's dispense this knowledge to our surroundings. Because an illness changes with perception, and this perception can make all the difference in the way we live.

Student run. For the student in each of us.

Stories

Tania F.

Samia Shahnawaz

On July 26, 2013, I woke up around 6:30am. I was tossing and turning and the whole room was spinning! I kept running to the bathroom across the hall because I felt I was going to be sick to my stomach but nothing would happen. At around 7:45am I got so dizzy thought I was going to throw up and suddenly burst into a violent grand mal seizure, which I was not aware of at that time. To this day my mom says she can remember my gasp and cry right before it occurred. My mom immediately called 911. When they arrived I was lying on the floor in the proper position. Due to that incident I suffer 3 compound fractures in my back that did not go detected until my sister who is a nurse demanded I have an X-ray performed. I saw a recommended doctor for about a year but after failing 2 or 3 anti epileptic drugs he started to get frustrated with my case and wanted to put me on anti-anxiety drugs and antidepressants.

At around 7:45am I got so dizzy thought I was going to throw up and suddenly burst into a violent grand mal seizure, which I was not aware of at that time.

My sister did some research and found an amazing new neurologist for me. Due to their help, vigorous testing, and education we were able to start making some traction on my condition. My case was presented at 3 national conferences that I know of due to its rarity and difficulty to manage. Eventually I met Dr. McKhann, one of the best neurosurgeons in New York City. He had suggested I come into the hospital have an intracranial EEG. Sixteen days later they discovered I was having 60-80 subclinical seizures per hour in addition to two other types of seizures one being focal and the third being NES. After 16 days in the hospital and 10 probes being places in my head I was ready to go home. I was told a few weeks later that I was a candidate for surgery due to my seizures- we just needed to figure out which type.

When I returned to see the doctors after many many visits we decided that we were going to move forward with brain surgery which was actually just a few weeks ago. Dr. McKhann and his team went into my brain and, using a technology called laser ablation, they were able to open a small hole in the back of my head on the left side and use tools/tech to burn 3.5 inches of my brain where the seizure activity was occurring at my hippocampus and amygdala area.

Listen to your gut! It will get better! I always had a fighter’s attitude with a smile on my face but now I feel like a fighter who won my first match!

I am still suffering from small seizures but that was expected post brain surgery. Most people don't even know why they have seizures. I have to be honest and say head trauma was induced from interjecting in an altercation  that my ex-boyfriend was involved in at the time. I knew I should have gone to the doctors at that time but I ignored my gut feeling. Listen to your gut!  It will get better! I always had a fighter's attitude with a smile on my face but now I feel like a fighter who won my first match! Next round we will see. However my goal in life is to really help others and speak up about my incident. Doctors are still learning a lot about epilepsy and that is why I lived and continue to live by my motto, "Say how you’re feeling, don't let anyone doubt you - regardless of personality, degree or white coat... Only WE know how we feel!"