My life story
I was an extremely active child, walking and talking at a very young age, never sleeping a full night until I started school. When I was 7 I started to have tonsillitis which would return when I finished the antibiotics, my throat was swollen and sore and I developed tonsilloliths or tonsils stones making it hard to swallow and causing severe earache. At the same time my facial functioning became an issue, My GP referred me to the ear nose and throat dept at my local hospital and then on to the National Hospital in London, they were looking for an infection in the Mastoid region.I had a variety of tests, X-rays MRIs EEGs, fronton temporal damage, stroke or a brain tumour was discussed It was discovered that I had a small part missing in the front right lobe.
For as long as I can remember I had what I know now to be absent type seizures, the grown ups called it day dreaming and as a child who was I to question. I remember the feelings, like been in a dream, aware of what was going on but unable to react. I use to wake up on the floor, I was always covered in cuts and bruises with a reputation for being clumsy. My school reports said ‘always daydreaming, needs to concentrate more’ . I had dyslexia and dyscalculia but back in the 70s these were not as recognised as they are today. I was also bullied continually because of my face, so as you can imagine school was quite difficult for me both educationally and socially.
I left school and college and started work. One night on a trip to the seaside I had 2 Grand Mal seizures in one night, I was 18, just got my provisional driving license and had driving lessons booked for the following month. I went to my GP who referred my to a local hospital. I was unhappy with the information and support they provided (one of their recommendations was that I not have children) so I approached my GP who referred me to Northampton General and the Epilepsy Society where I had a specialist consultants and an epilepsy nurse, who was absolutely great but my life plans changed overnight. Over the next few years I tried a range of epilepsy medication all with side effects. I was constantly lethargic and could quite literally sleep 25 hrs a day 8 days a week, my memory became worse and worse.
I always had heavy and painful periods with pre and post menstrual tension which caused more seizures and migraines. I remember going on a contraceptive pill, I could not take the usual oestrogen pills as my medication cancelled them out, so I took an old fashioned testosterone contraceptive pill which caused me to become hairy and put on weight. When I was 22, with the support of the hospital I became pregnant. I had visits from social workers occupational therapists and community nurses, I had a healthy boy. Later l had a conversation with my epilepsy nurse who informed me about the Marina coil as a contraception method and the other benefits. I had one fitted, my periods stopped immediately, I had no pre or post menstrual tension my seizures and migraines decreased.
When I was 30 I heard of an operation at Mount Vernon Hospital Middlesex that could ‘ fix my face’ after a long waiting list, I had several operations over a couple of years, where they took muscle from my breast and nerves from the back of my legs and sewed them into my face. For the first time in ages I had an even smile and my eye did not droop.
At 33, I was still having uncontrolled epilepsy when my epilepsy nurse spoke to me about an operation (with an exceptionally long waiting list) that would be worth looking into . I had a couple of initial appointments with my consultant , I researched the procedure, l was given loads of information which answered all of my questions, my epilepsy nurse even arranged for me to meet with a lady who had undergone the same operation a couple of years previously. I decided to go ahead, I also put my name down for cancellations, I waited 3 years for the letter to arrive.
I had several tests and investigation, neuropsychometry, neuropsychiatric assessments and formal video telemetry. The MRI brain scan demonstrated a clear severe diffuse left-sided hippocampal sclerosis. In addition there was extensive damage particularly in the cortical regions of the left temporal lobe involving most of the lobe, the changes were particularly marked along the supra medial borders. I was diagnosed with refectory localisation related epilepsy with simple and complex partial seizures, and it is estimated that the chances of a further antiepileptic drug controlling my epilepsy was between 5&10%.
Unfortunately the formal video telemetry results were inconclusive and I was required to undergo further investigation, an Inter cranial EEG. This would be an invasive test that required a neurological operation, the implantation of fine electrodes into the substance of my brain and over certain parts of it, called stereotactic insertion of depth electrodes. This required my to have a stereotactic frame fitted onto my scull under local anaesthetic. I remember the drill, it reminded me of one that could be brought at any DIY store. The noise it made was that of a dentist drill. Then under general anaesthetic the electrodes were inserted. They stayed inserted for 5 days. The investigation was successful, and I was offered the opportunity to undergo a left temporal lobectomy.
The operation was a complete success and my seizures stopped immediately. I was still taking epilepsy medication, to be honest I did not mind, I would continue with them indefinitely if that was what it took. I also underwent a visual field test, as one of the risks of the operation was a reduction in my peripheral vision. In this case it was not effected. The first thing I did when I was one year seizure free was apply for my provisional license and l passed my driving test later that year. My insurance is higher but to be honest the positives outweigh the negatives.
I have always worked for social care education third sector/ charity organisations supporting vulnerable children and adults. I find it very rewarding. I thought that now I could drive and I had lots of experience in social care I would apply for more roles, unfortunately I was turned down as I did not have high enough qualifications. I decided to go to university and get a degree. I realised that I would need support re my dyslexia , I got my self a statement of needs which entitled me to additional support and assistive technology. At the same time and with the support of the National Hospital I decided to slowly reduce, with a plan to stop my medication. I did it over a couple of years as I was taking a lot of different medications. I really noticed the the positive difference in my attention and memory recall, although this has been effected and I still find it difficult, especially the memory recall I have found ways to successfully manage it. Words are always on the tip of my tongue, I have a particular difficulty with names, I tried lots of different coping mechanisms however I found some counterproductive, as I was concentrating on one issue I was missing others.
I am currently an independent practitioner working for a third sector organisation, I work with the most vulnerable adults as an independent mental health advocate (IMHA) independent mental capacity advocate (IMCA), a deprivation of liberties (DoLS) practitioner and makaton/ safeguard tutor. I still have migraines but these are managed (to a certain degree) by nasal sprays and injections, the sclerosis on my hippocampus effects my memory but I have many coping strategies in place to adequately manage that. My statement of needs allowed me to access funding that provided me with assistive technology in my work place. My car and motorbike insurance is reducing as the years go by. I have now been seizure free for about 10 years and I truly believe that deciding to undergo the operation was the best decision I ever made. It has allowed me to fulfil my true potential and now I advocate for those unable to self-advocate . I am a member of the Epilepsy Society and attend all of their conferences and seminars I take part in research on epilepsy for the Epilepsy Society and the National hospital London. I have agreed to do donate my brain and spinal cord when I die and I have given permission that the piece of brain I had removed may be studied.