I should have started this blog years ago.
Here's a bit of background about me:
I used to experience weird moments of déjà vu which
became more intense. I would hear whispers and emotions I couldn't
explain. One day my mother found me standing in my hallway, staring into
space, making swallowing sounds and spitting on the floor. This had never
happened before, so she took me straight to my GP and I was basically diagnosed
with epilepsy on the spot.
So the fun begins. I plan to use
this blog as a bit of a narrative. If you've got this far, thanks for
reading.
I was referred to a neurologist and had the obvious MRI and EEG, which showed
'sharp and slow wave complexes' (whatever that means) and I was shown a picture of my brain,
which was really interesting. My Neuro said, "you see those white
patches there, there and there? Those aren't supposed to be
there." It was bizarre. Those white patches are what cause my
seizures.
I was experiencing simple-partial and
complex-partial (absence) seizures. Thankfully I have never had a
grand-mal / tonic-clonic seizure, which is what I assumed epilepsy was before
my diagnosis.
In simple terms, while my brain was
developing some tissue didn't go where it was supposed to go, which means it
interrupts the neural pathways. Weirdly I found out it can also cause
things like hypermobility and gastrointestinal problems - both of which I
suffer with. PVNH doesn't usually present until early twenties and I
understand it is universally fatal in males. I suppose I'm lucky in that
respect.
I was prescribed Tegretol
(Carbamazepine), which made my seizures worse, I hallucinated, I had to quit my
job and I ended up with in depression. I spent nine months in a stupor
until I met my Sapphire Nurse (epilepsy specialist nurse) who immediately
changed my medication to Lamictal (Lamotrigine) and it changed my life.
My seizures decreased and my mood changed.
Everything was pretty good, until a few
months ago, when I started to experience migraines which would have me in bed
for days, sometimes weeks at a time. I spoke to my Neurologist who put me
on Zonisamide as well as my Lamictal. This seemed to work, but I was also
experiencing what I can only describe as 'whooshy' feelings more and more
frequently. Not auras or seizures, just feelings of slight panic, like
something is going to happen. I spoke to my Neurologist again, who decided to change my Lamictal to Lacosamide, while sticking with the
Zonisamide.
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