In May or June (this year), I noticed that I frequently have headache, nerve pain (inside my head) and I often feel disoriented. Good thing, I already know how to manage it. That’s what life is with
Neurofibromatosis (NF) and I’m used to it. Then a few weeks ago, I’ve been feeling disoriented and I almost had a seizure. I know the feeling every time I’m about to have seizures. I just know. Amazing, right? I just have to stop what I’m doing, be calm, drink water, drink my anti-seizure, drink water again, and deep breathing. Inhale. Exhale. It works all the time! I never had seizures ever since I started doing this. Almost seizure but it never succeeds! I always win! Haha.
After that, I told my mom that I almost had a seizure and told her about that ‘
disoriented feeling’. Then we remembered that it’s been a while since my last cranial CT scan to monitor my tumors. After that, my mom told my neurosurgeon, Dr. Lopez about it and a few days after we got the letter of request and I was scheduled to have the CT scan at PGH-FMAB.