Lessons in epilepsy and other things that don’t happen to me…

I’d had two encounters with Epilepsy in my life before. The first was when I was a boy; a close friend (and I’m happy to say one of my oldest friends still today) had epilepsy and I was somewhat aware of the fact it was an issue for him, I particularly remembered his worries when he started driving as to how it posed a threat if it should resurface. The second was much more recently with my sister’s daughter. She was diagnosed with sleep epilepsy which was a long, several year battle for them. Finally medication was established that thankfully normalized their lives. Despite both these experiences, I guess it is the nature of the human condition that we don’t have the real capacity to appreciate some things without experiencing them ourselves. A dear friend wrote to me recently about what was happening to me and he said “I suppose all of us have our blinkers on, to some degree or another”, it was a comment that struck a powerful chord with me, particularly in respect to this illness. It was a relief being given a diagnosis to the episodes and at least I now knew that it was unlikely that I was going to suddenly drop dead from them. Make no mistake though, epilepsy is horrible. I researched the condition and discovered there are lots of different types that can be caused through brain tumours and luckily I was suffering from the mildest and least disabling form. My epilepsy causes a type of seizure called ‘simple focal seizures’ which means that there is a very localized swelling in the brain. In my case this is caused by the tumour pressing around the speech centre / part that controls sensation on the right hand side of my body. This starts an electrical disturbance which is turn partially disables those parts of my brain for a short period of time. In my case, the actual seizure, whilst disorientating, is not actually that bad. But the build up (anything up to 2 - 3 hours of feeling absolutely dreadful, distracted, agitated, depressive and worst of all, just unable to think normally), and the fall-out (feeling so tired as to often need to go to bed for hours) is unbearable. My the time I was diagnosed with the brain tumour I was now having about 4 - 5 seizures a day, so pretty much felt almost incapacitated by it all the time. Dr. B had prescribed an anti-seizure tablet called ‘Levetiracetam’ which was my first foray into the world of the hard-core medication they wheel out for these sort of problems. I knew I had entered a new world here when I read the ‘side-effect’ list and one of the first ones listed was ‘suicide’. I was initially prescribed 250 mg but the target effective dose was 1.5 grams so I was going to have to increase the dosage by a factor of 6 to get to a level that would ease the symptoms. The medication works by reducing the overall amount of electrical activity in your brain (thus the possible ‘depressive’ side effects) which in turns raises the threshold of a seizure to a level where you’re unlikely to experience them. The reduction in activity causes extreme tiredness for a period whilst you adjust which is why you can’t just go straight onto the full dose. The ideal increment approach is an additional 250 mg every two weeks until you reach the target, but this can be done faster if required. In my case, by the time I got through the weekend the seizures had become so bad that I went to the GP to ask to increase the dose immediately, which they allowed. It took another 3 weeks before the symptoms were relieved and it was one of the toughest times I’ve faced to date. The removal of the symptoms was a blessed relief when achieved. I’ve never been a big fan of the whole ‘diagnose / prescribe’ culture of western medicine and instinctively feel a more holistic approach to well-being would be preferable; however, never in my life has a simple tablet made such a massive different to my standard of life. I’ve been really lucky with no major side-effects and it has literally restored me from being in abject misery into a relatively normal functioning person. Long live ‘Levetiracetam’! The multi-disciplinary meeting that Dr. B mentioned happened on the Tuesday and I got a phone-call with an appointment to go to Oxford the following Wednesday - Dr. P was travelling with work so I was scheduled to meet one of his team, Dr. L. Go here to the start of the journey. Go here for next blog entry. Go here for previous blog entry.