My Epilepsy Story, and acting like a fish out of water!

So I am doing this story to tell you, my dear readers, about me living with Epilepsy.

I was born in 1991. During the 90's there were two UK Prime ministers, they were John Major, and Tony Blair. In the US during the 90's the two Presidents were George H.W. Bush and William (Bill) Clinton. So you have an idea of the world I was born into. 

My Mum said it was natural birth, though it required the help of forceps to get me out, as I decided I was too warm, comfy and getting free food, and didn't want to come out. I personally think this was very cruel, dragging an innocent helpless child out of the womb into the cold, bright hospital! In 1991 I was born, and at first the hospital and my Mum thought I was healthy... famous last...erm...thoughts?

My Mum says within weeks of being born it was obvious there was something not quite right (something I routinely think to this day!) Whilst I was in my cot sleeping I would shake and do weird stretching movements. When she saw this happening, she took me straight to the hospital where she was told "Stop fussing, it happens...she will grow out of it." My Mum's gut instinct was telling her different. As I grew I kept shaking and stretching and my Mum kept taking me to the doctors and hospital and again "she will grow out of it..." So finally, my Mum accepted it and to let me 'grow out of it.'

When I hit the terrible twos, not only was the shaking and stretching going on, but I was late in developing my speech. My Mum was worried but she was again told by doctors and health visitors not to worry as "she will talk in her own time." I started to walk age 2 and that is when I started to face plant the floor. Apparently I must have enjoyed the taste of concrete! My Mum said I never tried to stop myself falling and she couldn't stop me as the onset was so sudden. It was like I was puppet with my strings being cut. This face planting is now known as an atonic seizure.

Atonic seizures are where the muscles suddenly become limp. It can affect part or all of the body and will normally result in the person falling if they are stood. This is why you often see Epileptic children wearing head protection. In the 90's that wasn't the case, especially where I lived. Medical science and intervention was very different back then. You can read more about atonic seizures here.

When I was 2 or 3 years old my Mum and Nana decided to take me to a church in Nottingham where I lived at the time. There was a stage in the church, where Christmas plays were put on. I was running (I use the term loosely, it was probably more like stumbling at speed!) about on the stage, and according to my Mum I was pretending to fly and be a fairy. I ran to the edge of the stage and was shouting "Mum! Nana! Look" I was flapping my arms. The next thing my Mum and Nana said they saw, was that my face went blank and as they were shouting my name I had fallen off the edge of the stage and made best friends with the floor. I banged my forehead, so we went to the hospital, and that's when it was decided that we needed to see a specialist. I also had a spectacular atonic seizure during my first year of school, which you can read about here.

My Nana and I, aged 2 or 3

At age 5, after seeing a Pediatrician specialising in neurological disorders called Dr B, and after conducting an EEG, and an MRI on the brain, I was diagnosed with epilepsy. Dr B couldn't be sure if the epilepsy would ever go and he felt there was more to it.... From age 5 to age 8 I was put on Epilim (sodium valpourate.) During this time I saw an educational psychologist who said "I would get by on my looks" but had "nothing between my ears" You can read more about that in this post about my other medical monstrosities!

At age 6 I had my first tonic-clonic seizure. It was during the Easter holidays and I was playing out in the garden with my younger brother, sister and Mum. My Mum said I stopped watering the plants and I started to cry and complain about a metallic taste in my mouth, then my eyes went to the back of my head and I went all stiff. I then started to shake and my breathing wasn't steady. During this seizure I got abrasions from the concrete, which was just the icing on the cake as I couldn't dress up or wear a box on my head for weeks. These things are important to children! I was rushed to hospital where they cleaned my scrapes, reviewed my medication, and said to increase the Epilim. A tonic-clonic seizure is the type of epileptic seizure most people will recognise. They have two phases. The Tonic phase is where you lose consciousness and all your muscles go stiff, and you are at risk of biting your tongue. This is followed by the clonic phase where you convulse and your breathing can be affected. You can find more information about tonic-clonic seizures here.
Many people, including me, have a symptoms of a focal seizure, commonly called an aura, before a tonic-clonic seizure. For me, my aura is and has always been a metallic taste in the mouth, although it can manifest as many things, such as a sense of impending doom or auditory hallucinations.

Grandpa and I, when I was a hormonal teenager!

From the age of 6 to age 9 I had a mixture of atonic seizures and tonic-clonic seizures. At the age of 9 they suddenly stopped...then came back back with a vengeance when I was 11 years old. It was my Grandad's birthday and we had just sung Happy Birthday and done his cake. I felt a bit dizzy, so I went away from the party and sat in the front room to get my bearings again. I began to get a metallic taste in my mouth... all I remember is thinking 'oh no, not again.' Mum came in the room, and then the next thing I knew I had woken up on the floor. Mum said I had a tonic-clonic seizure. During that summer when I was 11 I had over 20 seizures. The consultant I was then under Dr M decided it was time I was put onto Lamotrigine, as this was more suitable for teenagers and hormones!

From 11 years onwards I mainly had tonic-clonic seizures with the odd atonic seizure.

Throughout my teenage life it was a pain and the seizures were so tiring. I would have to have time off school, which sucked as, oddly, I loved school. I loved my friends, I loved learning and I just loved life. Sometimes I would go into school looking beaten up because I had hit my head or something during a seizure. This was frustrating as it was a time when safeguarding was becoming a big thing and, no matter how many times we told the school the cause of my injuries, they kept suspecting I was being harmed. It took two years and many letters for them to realise I was in a loving and nurturing home, just not the healthiest bunny.
When I was at college I saw another conultant called Dr M, who took a different approach, and agreed I had epilepsy, but with the incidents with my heart, one of which you can read about here, he felt the heart could have influence over the Epilepsy. So the heart and Epilepsy were causing twice the trouble for me.

At university the seizures carried on, and I still looked beaten up at times...

Then this year in March 2018, I suffered a 25 minute tonic-clonic seizure. When I came out the seizure I woke up in hospital, where my specialist broke the news that I had suffered a Traumatic Brain Injury due to a lack of oxygen. My whole world turned upside down. I couldn't remember things. I couldn't talk properly, it took days for me to be able to talk again. My emotions were like a rollercoaster and I turned into this snappy and moody person I didn't recognise. I didn't want to see my friends. I became so anti-social. I was like a defenseless child scared of the world. I had to relearn everyday things that we take for granted, such as feeding myself and dressing myself. To this day I drop food on myself and I wear my clothes back to front. I now have horrific migraines that make me want to hide away in the dark. I have extreme memory issues - funnily enough I forgot about this part and had to put it in when editing. Fortunately, six months on I am finally starting to feel more like myself. My mood is more stable and the irrational fears, whilst present, are far more manageable.
Medication-wise I am now on 1500mg of Keppra (levitracetam) twice a day, 500mcg of Clonazepam three times a day, and a 400mg of Gabapentin. This has finally got me to a more stable stage where I only have tonic-clonic seizures once or twice a month, instead of once or twice a day!
Each day I make small improvement, but my consultant said its going to be a long battle. Well people, I am in for the long battle!

Me this week, recovering from my TBI with the help of mother nature

Oh shoot, I forgot to mention I also have absences, I go all spaced out, and away with the fairies, but I come back eventually. I think that is everything, though with my memory as it is at the moment...

Epilepsy isn't the easiest thing to live with, but with the love and support from my family, friends and pets I am getting through this. I couldn't ask for any more from my family and friends. I have to have someone with me at all times, as my seizures are very violent, but Mum and Gareth have stepped up to the plate wonderfully. Also, despite never having been trained in that way, Scarlett, my dog, has developed a sixth sense, and normally gives me thirty seconds or so warning of a seizure, before I have my aura. This gives me time to take extra clonazepam as a rescue medicine and reduces the impact of the seizure. Dogs really are wonderful!

There is one sad thing that has happened because of our government's recent policies and I don't usually mention this. In Yorkshire, Epilepsy nurses have been cut. I was told back in March 2018, that I should see an Epilepsy nurse within 3 months. To this day I have seen no nurse. When I contacted the neurology department they admitted there had been cuts to the epilepsy nurses, and because I was considered a lower risk due to the support network I have in place I could not be given one. This should not happen. The government needs to stop cutting funding to the NHS, in the long term it will only end up costing more anyway. Myself and others need the NHS, so, Theresa May, please leave our beloved NHS alone and fund it better! The NHS staff do an amazing job!

In the future, I am thinking of trying CBD oil, if my neurology team think it may be appropriate. CBD Oil room wrote a rather interesting article which you can check out here on the benefits, though it is definitely something I will discuss with the consultants first!

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