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No One Took Me Seriously

I had always had strong, overwhelming deja-vu experiences.  This dates back to as far as I can remember.  Then one day, when I was 24, I was at work at my retail job and was completely overcome with this amazing sensation of deja-vu that started in my head and traveled through my whole body, leaving me feeling electrified.  My head felt like it was on fire.  Every movement, every sound, every word someone spoke, every little noise and every color contributed to this deja-vu experience.  It grew so intense that I felt I had to run away to make it all stop.  I kept running into walls as I clumsily stumbled into the back room and the floor and the ceiling met as one as I flopped into a chair, lost in this wobbly, terrifying nightmarish reality.  A few co-workers came running back and said words incomprehensible to me, but I couldn't find a way to form a reply.  A few minutes later, I knew that I'd better get myself to the restroom right away lest I urinate myself.  I barely made it.  As I walked out, I heard music playing in my ears as though I were waking up from an alarm clock radio.  This was simultaneous with a powdery, rubbery sensation in my nose.  I tried blowing my nose but the sensation took almost a full minute to pass.  Over the next 30 seconds, reality drew in and someone handed me a cup of warm tea.  I tried to describe what had just happened, but I didn't really know how to make it make any sense.  It was truly an experience.

These episodes started happening daily.  At my boss' insistence, I went to my family doctor.  I described them in detail and she was completely taken aback.  She said it sounded like anxiety, wrote me an RX for some xanax, then sent me on my way.  I despised the xanax.  And the episodes didn't stop.  Two weeks later, I was back in her office with the same issues.  She recommended I try massage therapy.  I tried.  The episodes continued but with less frequency.

A few short months later, I moved about 120 miles away for work.  The episodes continued and started to grow more intense.  Almost two years later, I found a doctor where I live now, described my symptoms in detail, and, once again, he said it "sounds like anxiety" and gave me xanax.  I sighed, took the xanax (less than prescribed) and was not the slightest but surpsrised that the episodes continued.  I googled my symptoms and was directed right to this page.  I went back to my doctor and told him this and demanded a referral to a neurologist.  Within three minutes of describing my symptoms to her, she told me I was having complex partial seizures.  A few days later, an MRI revealed a tumor on my brain stem as well.  She started me right away on anticonvulsants and diagnosed me with temporal lobe epilepsy.  Like clockwork, every 30 days, the seizures would start again and my anticonvulsant dosage doubled.  My neurologist referred my to a neurosurgeon to determine whether or not the tumor was related to the seizures.  After another MRI, it was determined that there may be a correlation, or there may not.  But the tumor would have to be removed either way.  I was referred to the Cleveland Clinic.  After months of testing, the neurology team there diagnosed me with a DNET tumor with gliomas forming from it.  No correlation.  Because of the frequency of my seizures and the side effects of the anticonvulsants they tried me on (I almost died from one), not to mention the cancer growing in my head, the surgery all happened relatively quickly.  Five doctor visits and a demand for a referral to a neurologist (which I was told by the doctor "I don't really think a neurologist is necessary but, if you insist..."), and look what happens.  Amazing.

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