Is it, or isn't it?

My previous post was written weeks ago and I just got around to posting.  Since then a lot of bad things have been happening and my Neurologist cannot confirm whether or not they are to do with my epilepsy.  As you can imagine, this is very frustrating and I have to keep apologising to my Specialist Nurse for all but yelling at her down the phone.

I have been signed off work since the beginning of September until early November and I have an MRI booked for the 26th October.  My symptoms are currently the 'whooshy' sensation I mentioned, visual disturbances/nystagmus, feeling very drunk and/or hungover, headaches/migraines, dysphasia (difficulty with speech), muscle twitches, unexplained emotions and exhaustion.  I rarely leave the house, which is doing nothing for my mood.  I am in the process of changing meds, so you could suggest some of these might be side-effects of the Lacosamide... if the symptoms hadn't started two weeks before I started taking them!  

I am slowly titrating my meds and I haven't noticed any change in symptoms.  My Specialist's advice was to "wait and see" - I was not at all satisfied with this advice and I insisted on an MRI and an EEG (she is getting back to me re the EEG).  I need to know they are not going to come back and say "good news! the MRI is clear!" and leave it at that.  

I have cancelled holidays and deferred a university course because of this.  I need to find out what it is and how to fix it.

An Introduction

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.

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.

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.