March 22nd 2016, Neurology Appointment 11:15am-
It started off like any other day, my girlfriend and I had taken the morning off work to attend my appointment together.
I was very naive in the mindset that I would walk into the consulting room and be told something other than ‘Laura, you have epilepsy’, but I honestly didn’t believe it would be so quick…
There had to be an alternative reason for these seizures?
I couldn’t really have epilepsy?
How can you know for sure?
What tests will be conducted?
There were so many questions buzzing around in my brain, but in that moment I almost didn’t believe my neurologist and I didn’t absorb the information.
If I’m being completely honest, and this may sound very strange to some, but it actually felt somewhat anti-climatic. My brain refused to accept this idea and I think it was because my EEG’s, ECG’s and blood tests etc. had all came back normal. There was no evidence for me to think any different about myself, other than the fact that my Dad was also diagnosed with epilepsy in his twenties.
The consultation was very brief, I was asked if I had previous head trauma to which I said no. Any acute stress? No. Blah Blah Blah.
Once the formalities were over I was told I would begin a treatment of Keppra 250mg twice daily, and work my way up to 500mg twice daily whilst I waited for my MRI Scan to be booked into a slot.
I was also waiting for an appointment for what I believe was a photo-sensitivity test which consisted of about ONE MILLION led lights to be shone into my eyes at different rates… I could be exaggerating about the amount of lights but how I didn’t get sunburn that day is beyond me!
Much to my dismay, I cannot remember what this test was actually called, hmm it must just be the AEDs…
So here I am in the consultation room being told I have epilepsy and I’d now be on medication long term, and then I’m swiftly shuffled to another room for a Nurse to ask me questions and give me a list of things I can no longer do. Here is said list:
– You can no longer take a bath if you’re home alone or without telling someone you’re in the bath or shower.
-You can no longer use bathroom locks.
-It is not advised that you cook on the stove using the rings closest to you, always cook at the back of the stove.
-I can’t have a job that requires lone working.
-Try not to iron when you’re home alone.
– You can no longer drive for a YEAR, all going well you’re seizure free for that long.
– You can no longer give blood.
-Don’t drink much or get drunk, ever.
-You cannot cycle unattended, but try to avoid it if possible.
-You cannot go swimming alone.
-You can no longer scuba dive- like, ever.
The list goes on… Especially depending on the type of seizures you suffer from.
What fresh hell was this?!
I won’t lie, this last one made me laugh because it is certainly not something that crops up in everyday life but c’mon; that’s a hefty list of normal, everyday tasks you’re reeling off with no alternative.
I wanted to know what I could do!
I was just feeling lucky that I wasn’t elderly or alone, but I soon started to worry for the people of this criteria.
Round 1= LED Light Testing-
I believe this is a test that is carried out to see if you have photosensitive epilepsy. I got my head all glued up with the little probes and hooked up to a monitor and asked to lie on a sweet ass comfy chair.
The burning beam of white lights then shone at me only a few inches from my face and I was instructed by the nurse to open and close my eyes, and to blink quickly or slowly depending on the setting she had chosen for the test.
They also filmed the entire test which I am pleased I did not see as the camera was pointed in a very unflattering direction.
I should add that if you are invited to take this wonderful eye burning test, that you bring a hat along with you because you will not get any of that awful glue out of your hair until you get home and give it a good scrub!
After all that, I was not photosensitive and this was not how my seizures are triggered.
Round 2= MRI Scan-
Now this was something I was definitely not looking forward to. I frantically researched the size of MRI Scans, how long you were shoved into its tiny black hole, and how loud they would be. Trust me I left no stone unturned!
I was petrified, and the internet does not make it better as claustrophobic horror stories are plentiful online!
DO NOT BE AFRAID.
It’s a complete waste of your time, you get to chill out with a some headphones and a dreadful radio signal, and are surrounded by foam shapes to ensure you remain in the correct position.
I won’t pretend the space in there isn’t small, and it is noisy even over the headphones, but all you do is close your eyes and its over before you know it. You just have to dance inside your head to the terrible music and try your best not to Get Jiggy With It.
After all that, I was thankfully told there was nothing abnormal about my scans, but they still couldn’t pin point what triggers my seizures.
I was then informed that I had generalised Tonic Clonic Seizures, and to this day I am still trying to figure out all of this new terminology.
The next dose of fun relates to my medication… but I will get to that another time!
Yes, that pun was 100% intended…