Siobhan’s Story Epilepsy and me To tell the full story of how I developed epilepsy, I have to go back to my childhood, as I was never in good health from then. I was born in Lisburn and shortly after I was released home to my parents, they realised something was wrong. I was brought to the RVH in Belfast where I had to undergo serious operations on my bladder and bowel, because of this I went deeper into bad health and eventually my veins collapsed because of all the treatment. At this time the surgeon looking after me had decided to put needles into the frontal lobes of my head to set up drips. This continued for some time. After the operations I then proceeded to take convulsions. I was very ill and close to death on a few occasions, although I don’t remember any of this. As I grew my health improved but I was left with side-effects until I was seventeen. When turning seventeen in 1988 I was at secondary school and on the way back from a day trip to a local theatre I took a grand mal fit which I was unaware of until I was at home in bed an woke up confused and disorientated.
After this first fit I was brought to my G.P who referred me to the City Hospital in Belfast. The neurologist was a Mr Patterson. He then proceeded to do scans, one of which was a CT scan. When this was done they started me on drugs the first being Epilim tablets. I immediately found the effect of these as they would make me drowsy. I was left on these for some time, while keeping account of my turns and the type of them. After a few years I was done with school/college, still taking drugs, but fortunately Mr Patterson had retired. Over the years I had a number of different drugs namely, Tegretol and Epilim, but because of the epilepsy I have it is hard to control and so experimenting was the only way forward. I then went out to work in the caring field, learnt to drive and did so for some years. The doctors at this time then tried different treatment. I was admitted to the RVH for 3-4 days, I was taken of all drugs, attached to a machine to read my brain function and pick up the difference when on drugs and when I took a turn off them.
My turns are usually a monthly occurrence, and these I am not aware off. In between these I take AURAS which if last long enough can leave me with side effects. After all the scans and tests I was also referred to the Walton Centre in Liverpool which specialise in BRAIN INJURIES and particularly the operation for curing epilepsy. I attended this in the hope it would be my saving grace.
Brain Injury Awareness Week 2010 Siobhan’s Story Epilepsy and me
Unfortunately it was not to be as after they went through my records, done their own tests they came back with this result
My epilepsy is called FRONTAL LOBE as this is where the damage is. They also discovered what they described as a FLAP OF SKIN on the brain which causes the turns.
They told me this could be removed but it could come at a high price (i.e.) It would not completely cure it.
I could be left with a full stroke on one side which could also affect my speech, and so leave me worse of than I am today. I did not take this chance but was left severely frustrated and depressed at this outcome.
HOW EPILEPSY AFFECTS MY LIFE
Epilepsy is something you would never like to see anyone taking or having. If you are a child in your own home you are generally alright, but when you leave home you are very restricted. I was as unlucky as I met the wrong person, got married and was deserted.
As you can imagine this in no way helped my problem. At first I was working and driving had a lot of independence, but this soon came to an end when I had three car accidents, and so am lucky to be living at all. Now I am single again I find it so frustrating that I am back relying on my family for getting around. When you loose your independence it is such a major thing which so many take for granted.
As the years went on my specialist continually changed my medication, but I have being settled on the same tablets now for a long time. MY MEDICATION IS AS FOLLOWS:
NEURONTIN 2400mg daily. TEGRETOL RETARD 12OOmg daily. KEPPRA 1000mg daily. CITRALOPRAM(anti-depressant) VIT B TABLETS and INJECTION every three months.
In more reason times I have been prescribed Frisum tablets for the after effects of the turns. I now attend Drumcoo Centre in particular The Cedar Foundation to do a computer course on a one to one basis which I really enjoy and feel relaxed at. I have just received a certificate for passing eleven ICT modules through OCR at NSP level. I have also received a certificate for First Aid and I recently began voluntary work one day a week. All these things though small helped me personally for building my low self esteem and confidence. Finally, I must add the two people in Cedar Foundation Anita McCreary and Darragh Collins helped me so much which also gives back a little of my independence. I live in hope that in time my epilepsy may stop but at present I am very much stuck with it and all that goes with it.
Siobhan Mc Ginn Brain Injury Awareness Week 2010
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