'Go With Your Gut'

Caoimhe Fleming:


"I was diagnosed with Juvenile Myoclonic Epilepsy(JME), along with some visual symptoms which are still unexplained, but hey, that's what makes my epilepsy unique!


At first, my seizures (or "fuzzy eye things" as I called it as an anxious nine-year-old who desperately needed an explanation for what was happening to her which was beyond her control) were just visual, it was about a second of my brain going fuzzy and me seeing neon coloured dots on a black background, no one could know when I had one. The GP sent me to opticians at first, they couldn't really do much except say that I had perfect eyesight, (that, as well as much more, has changed) so the new went back to the GP who then referred us onto an ophthalmologist.


He was quite nice to me, let me have breaks in between him shining a bright light in my eye for five minutes at a time only to not really find anything wrong with my eyes or optic lobe. He wanted me to have an MRI just to make sure there weren't any tumours or aneurysms happening.


My MRI was scheduled for the last day of third class, a week after my 10th birthday. I was so nervous that I cried as the radiologist prepped me and pressed the button to slide me into the machine. I felt trapped in this little space-like tube that my ophthalmologist insisted I be in. I could hear the loud beeping and booping in the background while I was listening to Classic FM.


When it was over I was more nervous about the results than anything else. They came back as unremarkable, (which is really a depressing way of telling someone that they do not have anything obvious wrong with their brain, in my opinion) which then meant we needed to have a regroup meeting with my ophthalmologist to see what the next steps would be. He then told me that his conclusion was that it was just stress and that I should maybe take up some mindfulness exercises. However, a couple of years later when I was talking to my mum apparently when I was sent out of the room (which I always thought was for them to talk about how to make me better without me knowing.. I was a very optimistic kid ok?) he told her that I was seeking attention, and that now that I had the MRI, my needy heart would have been filled. (I mean he didn't say it like that... but it was along those lines...sufficed to say I don't think I would ever want to willingly go into a scary, noisy, white tube machine where I can't move).


So me and my (annoyed) mother went home and sure enough the "fuzzy eye things" seemed to fade away over the summer holidays... then school started, and they started back too. Our GP then decided to not send us back to the ophthalmologist, as she and my mother both knew that I wasn't attention seeking. She decided to send me to a neurologist. I really did not want to go after the ophthalmologist saying that it was just stress, I didn't want to waste a medical professionals time nor did I want to waste my parents money, foe something I didn't think was worth it. My parents however, being as amazing as they are, knew that it wasn't just stress so told me not to worry and just to see where this meeting got us.


The meeting wasn't "satisfactory" to say the least, he did a couple tests to check my health, and then, like the ophthalmologist, pinned it down to stress. As the "fuzzy eye things" persisted, my parents demanded to see him again towards the end of the school year. When we met up with him again, he said the same thing, it was stress and it would go away over summer time...it did... this made me feel horrible, I was costing my parents hundred of euro just to be told it was stress. Then, like clockwork, when school started, they started...again. My parents thought that it could be linked to the severe bullying that I was going through from third class until now. They talked to my school and desperately tried to make and end to the bullying for about the millionth time. It did not work, nor did it work the past 999,999 times.


Then in October, I had a "fuzzy eye thing" in my kitchen, my mum saw it and asked if that was one, I of course said yes, since then my "fuzzy eye things" progressed, while it felt only slightly different to me; my visual symptoms were the same but my hands involuntarily jerked outwards, but to a spectator my eyes (quite dramatically) rolled back, and my hands jerked out very oddly. It only lasted a second but it became a struggle to do anything, especially in the morning and evening when I would be having about 30-50 within the space of 4 hours.


My parents were able to film the jerks one morning when I couldn't even put my hair in a ponytail because my hands would jerk out about every 10 seconds. They then booked a third appointment with the neurologist. While waiting for this, my mornings and evenings got very hard to live, it would take me 5 minutes just to tie one of my shoes laces, my mum had to do my hair every morning and I dropped about 20 plates and bowls while carrying them.


When we went to the neurologist and showed him the video and he immediately recognised it a epilepsy, he booked me an EEG. When we got out, I cried (honestly it was mainly to do with the fact that I wasn't allowed to cycle anymore...I don't really know why my parents let me ride it in the first place..?) but we were mainly relieved that there was an answer and that I wasn’t making it up, it wasn't stress, it was something!


So then my EEG was on the eve of Christmas Eve, my hair got super greasy and I still to this day think that that it quite unfair! Then on the 15th of January 2013, I was put on 250mg on Keppra (Levetiracetam) and over time the dose built up-to 1000mg, however that made my eyesight horrible, so we quickly reduced that and I was put on Zarontin (Ethosuximide) which had terrible side effects, I couldn't go to school for the whole day for about  month and a half because I was so dizzy, (luckily that was when

I found 'Say Yes To the Dress, so Monti and Lori kept me well entertained), and now it has been about 3 years with a stable medication dosage, 500mg Zarontin and 750mg of Keppra. I haven't had a breakthrough seizure since October 2017, which means I'm one step closer to getting back on a bike!


I have shared my story because it shows that if you have a gut instinct, you MUST follow it, my parents didn’t believe that it was stress, so they followed their belief, and lucky they did! I am now a healthy 16 year old who just had to take a couple pills  a day to be the best she can be!"



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