A case for CAM: Experience of Epilepsy

by Tristan Day

Today I would like to share with you my story and experiences of my condition; epilepsy. Throughout this story I would like you to be aware that here I am now, happy and in control for in parts of the story I must give the honest truth and relay the sad emotions that I once had. I consider myself extremely lucky to be able to tell my story knowing that by the end, all is well. I shall recall the events to the best of my memory:

It was on a happy day that I was introduced to the concept of illness. I had thus far only experienced extremely minor changes to health, perhaps the odd cold and very rarely did I have to take a day off school to recover. This stood for my family and friends too, and so I was sheltered from the true power of illness. A part of me thinks that all children should be sheltered, because the burden of ill health is substantial and surely it can only be good to prolong a life without this worry.

Although exhausted, I had enjoyed not only going bowling with my family but then going to the cinema immediately after! We never really got treats like these, but there I was enjoying both on the same day and you may not be able to imagine, but for a young boy these really are events to treasure. We arrived home at about three o' clock that afternoon, and my family (my three brothers and parents) naturally went about their tasks and in the children's case, we did whatever we wanted. That is what it is like when young, impulse is the only guide and true spontaneity rules. There I was just running I cannot say why around the kitchen, when passing a mirror caught my eye. I stopped, and leaned in closer to inspect what I thought might be a small mark on the left side of my face. What was that? I made to move my right arm up to touch it, to bring my arm across my body and to wipe the mark from my face. Of course, I have no doubt that I was still calm at this point, but for a reason unbeknownst to me I could not move my arm. My body was defying my thoughts, and before this point I had never even considered this as a possibility. I shouted then, just a blunt statement, I cannot move my arm! and all of a sudden the muscles clenched, and this brought my arm up to my chest where it began to shake violently. I tried to move my legs but this strange muscle tension seemed to rapidly spread across my torso and limbs and I fell to the floor. Mum? I shouted in fear, panic and confusion. My vision blurred and the mixing colours made it impossible to see anything. My entire body started to shake and I heard my dad calling for an ambulance, I heard my mum talking about a fit and I heard my own breathing turn to a rough snorting sound as my tongue fell and partially blocked my breathing. I"m sorry that my memory is less sharp after this point, I vaguely recall someone sticking their fingers into my mouth that made it easier to breathe again, and the strange sensation of spinning. The difficulty of breathing and lack of self-awareness made it feel like how I would imagine drowning to be. A single word repeated itself in abstract form, dominating everything: help.

The next thing I knew, I was lying still on the floor of my kitchen. Soaked in sweat and savouring the cool touch of the tiles to my skin. I hand't the motivation or the energy to move my position, and so I merely opened my eyes. I was lying with my head on a pillow on the floor, with sympathetic and worried faces of my siblings and parents surrounding me. I tried to move but mum stopped me from even attempting to stand, and explained that an ambulance was on the way. This was the problem with living in the countryside, she joked, "It takes forty minutes for the emergency services to arrive!' I realised I felt awfully sick and the memory of the journey to the hospital is not a pleasant one. The rattle of the road and even the look of the brown and dry cardboard sick bowl they had given me seemed to be urging me to vomit. Time passed with only my thoughts really, I remember mum stayed with me for the rest of the day, whilst different questions were asked. Looking back on it, I think I was kept in the dark about a lot of what was going on. I don't remember having it all explained to me until a lot further down the line, during my first meeting with a consultant paediatrician, Dr Hall. I had undergone strange tests such as an EEG, and then a CT scan of my head. At this point, my understanding of what had happened was that sometimes the brain"s electrical activity becomes too much for normal functioning. Some people were more susceptible to this than others, and when this happens, the body becomes uncontrollable and can be caused to twitch and convulse. This was clear to me, but I recollect an almost defeatist attitude to trying to explain it to me at the time, which confused me. I don"t know how the decision was arrived at, but I was started on medication one and a half tablets twice a day. I didn't know what it did; I was just told that the medication would prevent me from having another seizure. This sounded perfect to me, and so I simply started taking them every day of my life.

I never really considered my condition after this, except for when I had the hospital check up every six months or so. There were rare times when I would feel a slight involuntary twitching in my arm but it would subside after five minutes with no further effects. Looking back at those few years now, I think I probably was more tired than I would normally be. I often woke up feeling like I needed to have another eight hours sleep, but of course I attributed this to my age. Teenagers always felt like that, right? At the time I didn't even imagine that this drug could have side effects. It was around the age of thirteen, when Dr Hall started to suggest that I come off the medicine that I started getting upset. My life was fine, I was enjoying school and was healthy and fit free. Why should I come off medicine? The fear of another seizure would always dictate and overrule my desire to be off medication. My thought being that I hardly cared whether I was on these tablets for the rest of my life. And so it was not for another few appointments that I was convinced to come off medication, and see if I would be okay. Dr Hall had explained (I listened in whilst he explained to my mum) that fifty per cent of people who have a fit never have another fit again. He also added that many children diagnosed with epilepsy lost this diagnosis over their adolescence. Reluctantly I stopped taking my tablets, the medication which symbolised safety to me and tried not to think of the possible consequences.

English class on a Tuesday afternoon always dragged on far longer than seemed fair. I think the clock at the front of the class was placed there to taunt us, to show us not only how much time was left but also how slowly time was passing itself. I watched the second hand slowly ticking and concentrated, trying to will it to tick faster, as the readings of Macbeth passed my ear. I felt dizzy - I must have been hungry and glanced across at my friends to reassure myself that they were"t paying attention either. One of them smirked at me as I rolled my eyes. Everything was normal and none of this was out of the ordinary routine, and so I often wonder what made my second seizure occur. I suddenly felt the gripping feeling of muscle tension, starting in my right arm again and swiftly taking my whole body with it. I crashed on to the floor and I think this must have rendered me unconscious because unlike the first fit, I cannot remember much after this point at all. This time no ambulance was called, I woke up in one of the beds that the school nurse has to offer. Again, I was completely exhausted and again I failed to consider what this actually meant in my life. I was immediately prescribed my original medication, and continued with the same dose as before. Something had changed though, and I think it was the fact that the secondary fit made me realise that actually this condition wash"t improving, and it really brought home to me that it could strike at any time. This was a stressful thought, and one that occupied my mind frequently. The second reason that this was especially awful was that with my age came intelligence and thoughts of the future. I knew that this meant that I may not be able to drive when I turned seventeen, that at every waking moment of my life I might have to be wary that I could fit and take appropriate measures to keep myself safe. I was only thirteen, and all of these thoughts were troubling me.

I started to notice the chronic fatigue to a greater degree as I entered that time in my life when public exams must be taken. I could"t concentrate for hours at a time like I needed to be able to do, and I often felt too tired upon returning home from school that I would"t complete or even start my homework. I was slightly more aware of this than I was when younger and so at my next appointment, I asked Dr Hall if I could change my medication. I think it is unacceptable that at this day and age I was being prescribed a drug that caused me academic difficulties and so put my future at risk. At last he was talking to me though, and although mum still accompanied me to the appointments, I felt like I was more in control. The new drug I tried gave me fresh hope for the future!

The side effects of my first medication included joint pain and often experiencing blurred vision. This was even worse than the second, and meant that the frustration and stress rose substantially. There would be days when I would barely participate in class, and keep talking to a minimal as I just wondered how to heal. It seems a strange concept I know, but I refused to believe I was just a helpless victim to epilepsy; there must be a way to help. Strengthening my will to heal was the fact that I could't drive on my seventeenth birthday. The DVLA had refused my request for a provisional licence, and whilst all my friends were discussing driving lessons I had to stay quiet and be jealous. I will have their pleasure soon enough, I would tell myself.

At this point I started doing my own research into treating epilepsy, which turned out to be one of the best ideas I"ve ever had. I was glad to find that there were plenty of other people just like me - that fact in itself lifted the feeling of isolation from my head. Others experienced the same side effects, the same stress and worrying thoughts and even better, there were stories of people that had become independent of treatment. The more I read, the more I couldn't help but notice one particular treatment option that kept being mentioned. Neurofeedback. This sounded intriguing, and with the excitement that comes with new hope, I feverishly set to work to know it inside out. It was a complementary medicine (this sounded like something my parents would automatically doubt) that involved teaching yourself to be able to manipulate the EEG impulses and so try to avoid the impulses that encourage propagation of seizure. Sounds simple enough, and if it would allow me to lower my dose of medication then I would be more than willing to give it a try. I actually called and booked a preliminary appointment by myself without consulting my parents. They offered free appointments to discuss treatment options in my local Complementary and Alternative Medicine clinic. I was so nervous about going that I hadn't really thought of any questions to ask once I arrived. This worry proved needless because the practitioner proved calming, kind and helpful. I really felt as if they were interested in what I was seeking to get out of their services and made me feel that whilst I was in the room with her that I was the most important person that they needed to deal with. Neurofeedback involved about thirty sessions of roughly thirty minutes that quite simply taught me the necessary techniques I needed to reduce those impulses characteristic of epilepsy. I approached the subject with my parents that night and surprisingly received quite an open response towards it. They told me that if I really believe it could help then they would fully support me in it. Exactly what I wanted to hear! Just the one catch, I had to ask Dr Hall of his opinion. I managed to call him the next day and his response seemed a bit wary, as if he thought it wasn't going to benefit me but didn't want to say it outright? I wash't sure what to think of this but neither was it going to stop me! My first biofeedback appointment was when I was eighteen years old when I was in the last term of my sixth form. I was nervous not because of what I was about to participate in, but because I had all my hopes resting on this method. Would it help, could this treatment really replace the action of a drug? My first session was one hour, and this hour alone was worth so much. The practitioner had this calming presence that meant that my anxiety seemed to leave me whilst talking to her. She very confidently stated the facts about Neurofeedback, and I could clearly see that she was enthusiastic about this technique matching my emotions. I had the sensors attached to my head just like when I had my original EEG, but this time there was a screen showing the impulses to me. 'Now,' she announced excitedly, 'our aim is to lower the amplitude of these waves'. I learnt to recognise these 'danger waves', the impulses that were lifting my risk of having a seizure. The techniques used to help me achieve this involved concentrating on just one thing of my choice, such as a word or phrase. I chose peace to be my word and at one point an auditory feedback sound was played where I was to try and lower the pitch of the sound as much as I could. Although I can't say I felt an immediate effect on myself from this session, at least I could understand the treatment and imagine myself improving at it, which is more than I can say for the drugs.

The thirty sessions took place over the next four months, twice each week. I continued taking my medication throughout, but once finished I slowly reduced my medication, a little bit each week until I was on half the dose of my original treatment. I felt in control of my own medication for the first time since I had started them at aged eight, more than a decade ago. The reduction in my carbamazepine dose brought about a huge difference in the side effects I was feeling. I could get up in the mornings far more easily and my inattention problems seemed to wane. It's amazing what a difference it can make, all in just four months! Dr Hall was intrigued by my experiences and asked me to take him through the biofeedback treatment as much as possible, saying he would look into the evidence behind it. Now I make an effort to replicate what I was doing in the feedback sessions each day in real life. This was difficult at first but by the end of the sessions I had learnt to recognise the feeling of dampening those impulses, and this was extremely rewarding.

I am now thirty years old, and I have not had another seizure since the second one. I will not bore you with the happiness I have had over the last decade, success is what we all aim for but it also makes for a boring tale. The aim of me retelling this tale is to highlight the importance of open mindedness and persistence especially in health care. If I hand't have researched the topic myself then I would never have found out about Neurofeedback and perhaps I wouldn't be in the position I am in now. If I hand't been encouraged to try and reduce my medication, I may well have accepted the fact that I would have to live a life with the severe side effects that I had experienced. In no way am I putting down the conventional method of medicine, but I hope from this story you may learn that perhaps this evidence-based non personal approach to medical care is somewhat flawed.

Socrates once said, 'The unexamined life is not worth living' and this is something I often quote to those near me. The sheer quality and quantity of advantage"s I have had the privilege of receiving as a result of the examination I did of my life cannot be said. New discoveries and new insights potentially found from reflection and introspection are plentiful. Whenever I tell someone my story I do not ask for sympathy or even interest. What I do ask is that something is taken from it. Medical care should be near the top of the priority list for everyone, and so intelligent decisions must be made. There is an obvious need for a whole person approach, and to advance the care that has had so many leaps forward in the last century - we must look to the mind. Reflection Writing this short story was a unique experience for me. It was an extremely rewarding experience on a personal level. I was diagnosed with epilepsy after a full body seizure on the 16th March 2001. On that date I was just eight years old, and with little understanding of the true ramifications of having a seizure. Naturally, the account of the seizure is my honest recollection of what happened that day down to as much detail as I can remember. It is the first time that I have written down my memories, and I found it surprising how easily I could recall that day. The memory has stuck in my head - perhaps because it is the most powerful experience of biographical disruption that I have ever had. It is also true, that my mother pressed my tongue down whilst I was fitting so that I could breathe, just one of many things that I can appreciate more now than in the weeks after the event. I will also mention however, that all other aspects of the story are fictional. Researching in detail the precise applications and uses of biofeedback has been enlightening as I have always wanted to research more about the options an epileptic has in terms of treatment. It shocked me to find that a third of epileptics are uncontrolled through their medication. In 2004, I was on a family holiday in Sri Lanka when we visited a tea factory. Attached to this tea factory was a herbal medicine outlet, where I can remember the lady looking me in the eye and telling me that if I gave her a month then she could cure my epilepsy. Of course this was impossible at the time, but the confidence with which the words were said had a powerful effect on me. It was wonderful to think that if Western medicine failed me then there was a kind of backup solution. Questions explored in my short story such as - Would I have benefited from more time to talk about my illness? Would I have appreciated more choice in my treatment, had it been completely explained to me? - will stay with me throughout medical school and into my career, where my future patients will hopefully receive holistic treatment with attention to detail and respect for individual difference.

Tristan Day, Whole Person Care, Year One, 2013.