Welcome! Log in or Register

My Experience of Epilepsy

  • image
17 Reviews
  • You'll have to take drugs for years - perhaps for good
  • touching
  • Write a review >
    How do you rate the product overall? Rate it out of five by clicking on one of the hearts.
    What are the advantages and disadvantages? Use up to 10 bullet points.
    Write your reviews in your own words. 250 to 500 words
    Number of words:
    Write a concise and readable conclusion. The conclusion is also the title of the review.
    Number of words:
    Write your email adress here Write your email adress

    Your dooyooMiles Miles

    17 Reviews
    Sort by:
    • More +
      19.08.2011 11:02
      Very helpful
      (Rating)
      1 Comment

      Advantages

      Disadvantages

      Don't let it take over you have so much to live for.

      ~~~~~~~~~ I was diagnosed with Epilepsy at the age 13 after having my first seizure at school, which wasn't the best place to have it as waking up on the floor with a paramedic stuck in your face isn't what I would call a pleasant experience to say the least. After that I went through all the test's such as EEGs and Cat scans etc but everything came back fine and normal so I was told by the specialist it must of been a one off and to go home and forget all about it, which was great I skipped out of the hospital that day but a few weeks later I had another seizure and it was then the doctors decided it was epilepsy after all. When I got the phone call and was told I felt like I should cry or something but I just couldn't to be honest I wanted my mam to move out the way of the television so I could finish watching my program. The first medication I was put on was Epilum but the side effects were I had a huge appetite and as an example I would go through roughly 12 bags a crisps a day plus other things so the weight piled on and my confidence dropped, I tried everything to stop but just couldn't so I begged the doctor to put me on something else in the mean time my seizures were infrequent and I never knew when one was going to come on which is something that scared me but I tried to let it bother me too much. Finally when I was 16 the doctor relented and I was changed onto another medication called lamotrigine and I lost 3 stone, I went to college my seizures were finally in control, my confidence was back with a vengeance and it would be 3 years before I had another one, although it would be my worst one to date as I split my head open and had to have 3 staples in my head although I cannot remember any of my seizures and I cannot tell you exactly what happened that night, I suppose I'll never know but it doesn't matter I try not to think about it as you'll go crazy trying to make sense of it all. It's been 4 years since my last seizure and I've never looked back, I've learnt how to drive and someday's I forget I even have the condition I never let it rule my life as I can do anything I want as long as I take my medication I'll be fine. It's a serious condition but one that's made me value life and I'm more determined than ever to succeed in whatever I choose to do, all you have to do is be cautious and sensible but don't let it take over your life as you have so much to live for. ~~~~~~~~~~~

      Comments

      Login or register to add comments
      • More +
        08.11.2010 16:08
        Very helpful
        (Rating)
        11 Comments

        Advantages

        Disadvantages

        A complex condition

        Waking up crashed out on the kitchen floor with a horrible taste in my mouth and a pounding headache, you would be forgiven for thinking I had over-indulged on alcohol, but instead I was just fifteen and had suffered an epileptic seizure for the first time. My parents were divorced and I was staying with my dad, and the last thing I remember before waking up, is getting a bowl of fruit and sitting down to watch a silly gameshow. After that I woke up, but in between my dad said I had walked into the kitchen and he ran in, having heard an allmighty crash, to see me convulsing on the floor. Although it was scary for him, I think his mind immediately turned to the prospect of Epilepsy as his sister had the condition. He promptly arranged me in the recovery position and called a cab to take me to the University College Hospital (UCH) in London. While waiting for the cab I ran into the bathroom and threw up a mixture of blood from where I had bit my tongue during the event, and a whole concoction of exotic fruit! Too much information, I know, but this is an honest account of Epilepsy, from a personal perspective. It was all a massive blur for me, and a little confusing, especially when the doctors decided to keep me in hospital for a few days to run EEG's and other tests. My mum and sister were in Ireland (where we lived) and it was a lonely time, despite my dad plying me with trashy magazines and sweets to cheer me up! While in hospital I was diagnosed as having Epilepsy, but despite me having had a seizure in front of the glitzy gameshow, I was not seen to have Photosensitive Epilepsy, where sufferers are often prompted into having seizures as a reaction to flashing lights. I have never since had a seizure as a result of being near flashing lights, but I have had a number of other seizures. I was given Phenytoin and sent home and I was on this outdated (but effective for me) medication for years until I asked for it to be changed due to unknown side effects and the fact that newer medication was available. Most of my seizures occured at night, so I always assumed I had nocturnal seizures, particularly as they would happen when I was in a deep sleep. I would wake up, often with a bitten tongue, and to voices which seemed to come from another planet. It took me a while to come around from these episodes and realise where I was, or whose voice I was listening to, usually my worried mums as I still lived at home. Once I remember to my horror finding my bedding in the process of being changed when I came around, and was hugely embarrassed that I may have lost control of my bladder, especially since this was in the company of both my mum and my boyfriend when I was eighteen. Often, on waking, I would struggle to remember what day it was or what I had been doing before the event, until I was fully recovered. My seizures were 'tonic clonic' meaning that I would lose consciousness and my entire body would convulse, but there are many other kinds of seizure including 'absences' where the person literally appears to go blank for a few seconds and may miss some of a conversation. These seizures can be really minor, or really life-shattering depending on their frequency as a person can have a whole series of them, meaning that they miss large chunks of the day and are unable to function properly. Having worked at a national Epilepsy specialist for a few years, I became very much more aware of the condition and how differantly it can affect people. Some of the people I worked with had very severe Epilepsy to the point where they spent their lives taking a cocktail of medication and living with profound associated learning difficulties. Yet some of the people I worked with had a mild form of the condition, which was easily controlled. There really are so many different forms so it's impossible to generalise, yet sadly everyone still does. Like I said most of my seizures occured with no fore warning and during my sleep, except for the most recent one, which I'm pleased to say was several years ago now. I remember clearly crossing a busy road and feeling my head go fuzzy, my ears ringing and everything going in slow motion. I knew instantly that this was an 'aura' and that I was going to have a seizure. It was the scariest thing as I had no control whatsoever and was in a very dangerous location. Next thing I knew I woke up in a car, with a strange man explaining he was a paramedic. I still have no idea who called the ambulance, but I'm very grateful that someone did, and that I obviously made it to the other side of the road first. Personally I would go months and months without having any kind of epileptic activity, but sadly I never went long enough to be able to drive, until a few years ago. At first this wasn't an issue as I lived in towns and cities, but when I settled down in the countryside, I really needed to learn to drive and resnented the fact that I was unable to, due to a condition that was totally out of my control. Now that I haven't had a seizure for so long I appreciate driving and not having to take any medication, but it is always something that hangs over me. I don't know if I will ever have another seizure, but sometimes it occurs to me while driving with my baby, that if something were to happen, I could not stop it and it could result in devastating consequences. But I try not to think like that as I want to live my life and not be at the mercy of things that I have absolutely no say over. I would like to point out that Epilepsy is a condition where the brain misreads impulses, resulting in seizures of varying intensities depending on the sufferer. It can happen to anyone but some people are more prone to it than others for a variety of reasons. Some children have seizures in childhood and grow out of it, never having any in adulthood. These days we don't say the word 'fits' hence this is the first mention of the word, which I personally hate. The National Centre for Young People with Epilepsy is an excellent starting point for anyone wishing to find out more about this condition and to find out where to go, and what to do next. It dosen't have to be the end of the world, and luckily in my experience I have been able to live a full life, however having worked with more complex cases, I feel very lucky indeed that this condition was not all-consuming for me and has not left me needing care or continual support.

        Comments

        Login or register to add comments
          More Comments
        • More +
          13.10.2008 22:27
          Very helpful
          (Rating)
          5 Comments

          Advantages

          Disadvantages

          not as hard to live with as you think.

          i started experiencing the symptoms of epilepsy in my early teens, i would be talking to someone then just go blank as though i was daydreaming, i knew i had had one after it had happened but didnt know they were coming. my mother took me to the doctors and when asked if anyone in my family had it, my mother replied " her nan was mad " and the doctor replied its NOT a sign of maddness, but it just goes to show how some people saw epilepsy, the doctor then passed me on to a specialist at addenbrooks hospital, where i had some tests done to see what my brain activity was like, i laid back on the bed and had wires ( sorry dont know the correct term for them, hope you understand what i mean! ) attached to my head, then was told to close my eyes while lights were flashed, then open them , then blink, as i was a teenager i found it quite scary. after a few weeks i went back to the doctor for my results, which came back as having epilepsy, all be it a mild form, petite mall its formally known as. i was put on medication to try and control them, but still had quite a few. i had a lot of stresses in my childhood and had a very bad relationship with my mother and step-father and this in turn made my " turns " a lot worse as in my case stress and anxiety bought them on more, i had one very bad one when i had a sleep over round my friends house, i was about 15 and slept in the bedroom with her, i went to close the door in the dark and bumped my head on the wardrobe, next morning my friend told me i was convulsing on the floor for about 30 mins and her parents didnt know what to do, in the end when i had calmed down they put me to bed and i slept for the rest of the night unaware of anything, my friend also told me her parents didnt want me to stay over anymore because of it. i dont blame them, they were obviously unnerved by it and didnt understand. when i was old enough to go clubbing with my friends and experimenting with alcohol i tended then to have a lot more, especially in the morning they would come thick and fast, and i would be left feeling very tired after, so i soon learnt i couldnt keep up with friends and kept to the same drink and in moderation, which actually didnt bother me as much as i thought it would. i then seemed to grow out of it in my early twenties, just had a few episodes whilst i was pregnant, still very mild ones. ive learnt now to just live with it, i cant change it but hopefully i will one day grow out of it as some people do, there are only two things i wish for one is that i hope my daughter doesnt get it as its heredity and the other is to be able to learn to drive as its a real dream of mine, but if not then it wasnt meant to be.

          Comments

          Login or register to add comments
          • More +
            19.02.2008 14:58
            Very helpful
            (Rating)
            5 Comments

            Advantages

            Disadvantages

            Speak to a doctor

            Before you read this and assume you or someone you know as epilepsy, please please note that this condition varies from person to person and can only be properly diagnosed by a doctor. This is my personal experience of epilepsy. I am a 22 year old woman and was only diagnosed last year at the age of 21 that I had this condition. I had suffered for ten years prior to this of severe migraines and was always off school and attending regular tests etc at the doctors as the severity grew. I was given tablets to stop the pain but nothing ever seemed to stop the actual migraine from occuring. Last year, one Monday morning in December, I got up for work as usual, went downstairs only to feel extemely sick. I felt very heavy and exhausted all of a sudden. I went back upstairs and went to the bathroom and basically collapsed next to the toilet. Bearly having the energy I shouted for my mum. She came with her boyfriend who by the time they got there had to wake me up. They picked me up and put me to bed and I slept for 14 hours before waking up. I felt very unwell the following days and eventually went to the doctors. After this I was sent for endless amounts of blood tests and urine samples were taken etc but they were not sure what it was. I have private medical insurance with my work so went through them and had a MRI scan, another blood test and a ECG which concluded I had a very mild form of epilepsy. During this time I had to have three months off work although I only passed out a total of three times but couldn't travel to work for safety reasons as I commute to London every day. I have on a very low dose of tablets which I take three times daily and funnily enough - I haven't had a single migraine since!! Thats not to say to those who are reading this that migraines mean you have epilepsy. In my case it meant that. Since then I have had two passings out but my family, friends and work colleagues all know how to look after me which is very important and after a couple of days I feel in tip top shape again! The only way it affects my day to day life is that I am very light sensitive and don't like flashing lights. As these appear few and far between, this is easily combated. If you have any worries or concerns regarding epilepsy in yourself or someone you know, please contact a doctor and speak to them about these concerns. The doctor will be able to help and advise you.

            Comments

            Login or register to add comments
            • More +
              28.11.2007 02:47
              Very helpful
              (Rating)
              22 Comments

              Advantages

              Disadvantages

              Live your life as if you don't have the problem if possible.

              Epilepsy is something that anybody could suffer from during their life, this piece is just my life living with the condition. My experiences should be treated as such, how the condition affects me. We are not supposed to give advise on how this affects others, because everybody who has this compliant is affected differently. My History I was fourteen in 1968 and very active in sports mainly swimming. I swam every week night. However, one lunchtime I was looking in a shoeshop window and had what I can only describe as an aura, it felt as if my head was being forced to look over my left shoulder. I found out later that your head doesn't move it's only your eyes, it is the strangest feeling, not nice. I obviously passed out because I woke up, with a big graze down my cheek from the edge of the glass window, in Bethnal Green Hospital. My first but not last stay in a hospital. I was diagnosed after many tests with epilepsy and was given the drugs phenobarbitone, now phenobarbital, phenytoin and Epilim which is not a nice name for a control drug for an epileptic, but I can see the funny side of it. I then had to attend the London Hospital (at that time one of the best in the world) and had an EEG and other various tests including blood tests this was in the days before CT scans I believe, because it wasn't until I had a CT Scan at Russell Square Hospital that it was diagnosed that I had a cyst on my brain. This was in the early seventies and I was told it was microscopic so don't worry I would have to wait until it grew considerably larger before it was a real problem and something could be done about it. I obviously started going out with girlfriends at this time, this was fine I didn't fit (have a siezure) in front of any of them. I found that as I got to the age of sixteen I started losing girlfriends a couple of weeks after going out with them. This puzzled me as the first few times it happened I had no reasons why I was losing them until about the third time when the girl who was very nice told her parents about my condition and they forbade her to go out with me anymore. The reason they gave was fairly weird as they said the epilepsy could be passed on to any children we might have. I had to laugh at this I was sixteen and had only just met this girl I can only assume that this was the reason the others got rid of me. I decided then and there to keep on telling the truth about my condition as I thought that apart from being dishonest, by keeping my condition secret, that anybody who went out with me knew at the beginning and if they knew then, they wanted the whole package. However, I never let Epilepsy affect my life unless I had a fit well I had no control over those. The first and easily the biggest way it affected me was when I went with all my friends at seventeen years of age to get my Provisional Driving License. I was pulled into a back room, I had answered yes to having Epilepsy on my application, and made to sit and wait for somebody in authority to explain that I wasn't able to drive and that I would need 3 years clearance from fits to be considered for one, and a letter from my doctor. All this doesn't sit well with a seventeen year old. Update it is only one year now. Epilepsy itself is an electrical discharge from the brain which causes your body to lose control of itself for a short time. This is what the doctors told me back then. Forward to 1975, I got married that year, didn't have a fit at the wedding etc., seriously the fits went from a couple a month to monthly every two or three months and then back again all over this period of my life and I was still on the same medication. This changed around that period. I stopped taking Epilim and went from three phenobarbitone and three phenytoin to two of each per day. I am still taking that combination of drugs to the present day and have been informed that I will probably be on the same dosage for the rest of my life. I have been to many Hospitals all over London so will not bore you with them all. But I was on monthly, two monthly then three monthly and finally six monthly visits to the London Hospital for check-ups. On one of these I was told I would have to have yet another CT scan. Also an MRI scan at Russell Square I believe this was the one that changed my life. In 1983 I was at work, when I got a phone call from my wife telling me that the London Hospital wanted me in the next day. I went in and was told that the microscopic cyst on my brain was now the size of my hand and it needed to be removed for me to stay alive. Who knew I didn't, the epilepsy hadn't changed and the cyst was the cause of it. About two days later I was prepared for the operation, I wasn't worried about it, wasn't scared, I had the best surgeon in the world doing my operation a Mr King, so why did I need to worry. I woke up the next day in intensive care with a bandage around my head and a ball to catch blood hanging from it. I had no pain whatsoever from my operation. The incission started just above my eyes went directly up over my head and came down at the back of my ear. I also have drill hole in various places. The worst pain I got was from thrombosis in my arm from clots otherwise for me it was easy, not so for my family. Looking at me you cannot see a scar and it is only when I point them out it is apparant. The thing is they saved my life, although I didn't have any ill effects, but scarred my brain so the fits continued. One thing the Hospital did do and I don't know to this day if it was a joke and that is to shave off just one half of my shoulder length hair. I didn't know about this until the bandages were removed from my head about two weeks later. This meant when I came out my Dad had to give me a crewcut to match the already growing hair on the shaved side. I'm sure somebody in the Hospital had a wicked sense of humour. I had a year off work after being in Hospital for three weeks, then life continued with the fits getting further apart every year. I waited until I had three years clear before going for my license and was told on application that it was now only one year. I got my license in 1992, drove old cars for just over ten years then bought a new car. I did 2,750 miles in it, then whilst on a train to Liverpool Street, in 2003 I had a mild fit. I was taken to Newham Hospital and have not driven since, I won't, it's not only my life on the line. So much for a new car should have stayed with second hand. I have had fits at various times apart but have not got that one year yet, but I will, then back to my now old car. My point is there will always be people out there worse of than you so try to make the best of life. Last year I cannoed 60 Km down the River Harken in Sweden and I'm 53 with epilepsy so just enjoy life, I intend to. Sorry to have written so much but there was a lot to write about. I have also been told that everybody is prone to epilepsy, you are just unlucky if you get it. Update This year I have had fits on three occasions the latest being the 18th of November, in my sleep, so not so bad. However the one I had in February was the worst that I have been hurt when having a fit. I fell badly hitting my eyebrow on the edge of the stair. There is a dent there now so I must have broken or chipped the bone in some way and I got the worst black eye that I have ever seen. It was a bit embarrassing when going to meetings. I look forward to being free from this condition again. So I can get back to driving. Footnote: My mother always blamed herself for my epilepsy and as you can see it was the cyst so no blame, even if it was hereditary I wouldn't have blamed anybody. It's just my misfortune. On epilepsy being hereditary my doctors told me it wasn't, but I have found an internet site which states that if one parent has it and it is idiopathic (this means arising spontaneously or from an obscure or unknown cause) epilepsy. Well I didn't know what idiopathic meant and I'm sure I'm not the only one. Apologies for the meaning in brackets LOL. But seriously, the risk is supposed to be 4%, rising to 10 - 20% if both parents have it. With Symptomatic epilepsy the site states that there is a slight increased risk, which is strange as the person with the epilepsy has hit their head or something like it. Apparantly the risk of epilepsy to the general population is 1% and for family members of persons with symptomatic epilepsy the risk is 2%. The site finishes with the fact that it can be said that if one of the parents has epilepsy the risk of the child developing it is so remote that most people can ignore it. This also applies to idiopathic epilepsy (with the possible exception of juvenile myoclonic epilepsy) and even more to symptomatic epilepsy. My point to all this is parents, don't blame yourself if someone you love has epilepsy, it isn't your fault and the person with it, if they are like me, just wants to forget about it and doesn't want to see their parents blaming themselves. These are my personal experiences and opinions and I thank you for taking the time to read this. © dvdsprks2 2007

              Comments

              Login or register to add comments
                More Comments
              • More +
                06.01.2005 16:50
                Very helpful
                (Rating)
                5 Comments

                Advantages

                Disadvantages

                A parent's view

                I would just like to point out that this review is based on my personnal experience. And holds the sort of information I would have liked to be told by the doctors, not the actual medical jargon they came out with. Thank you My six year old son Michael has epilepsy. I remember his first big seizure vividly, he was four months old and laying under his baby gym, when he let out an almighty scream and went totally stiff this lasted a few minutes and then he went to sleep. Now as my husband also has epilepsy I was very calm during this, maybe too calm, I'd seen it all before and already suspected that my baby was having absences (another type of seizure). So I phoned the doctors surgery and asked for a doctor to come and visit. Then all hell broke loose, I was advised to call an ambulance and take him straight to A & E. He was admited for observation and after having many absences was put on his first medication and diagnosed as having epilepsy. ************************ So What is Epilepsy? ************************ If you think of your brain like a huge electrical circuit, epilepsy is like a lot of short circuits firing off in the brain. In the UK 1 in 133 people has epilepsy, so there's sure to be at least one of your aquaintences that has epilepsy even if you don't realise it. Epilepsy is the second most common neurological condition after migraine. The majority of people with epilepsy find that their seizures are controlled by the first drug they are put on, however for others control is never fully established, unfortunately my son fits into the latter group. ************************ How is it Diagnosed? ************************ Although there are tests that can be performed my son's epilepsy diagnosis was based on clinical observation, in otherwords the doctors and nurses saw him seizing. The tests that he also had are : EEG (ElectoEncephaloGram) - Wires were attached to his head and conected to a computer that read his brainwaves. He had a couple of different types, one was sleep deprived when I had to keep him awake from about 4am. The other lasted for 48 hours. Although neither caught any seizures we did learn that there was something wrong with both halfs of his brain. CT (Computer Tomography) scan - For this he was sedated, and a very large and noisy machine took pictures of slices of his brain. Again nothing was found but he will be have a more sophisticated version (MRI) done soon. Blood tests were also taken to check if there were any medical conditions that could be causing seizures. ************************************** So what does a seizure look like? *************************************** Umm good question, seizures look different in different people, so I can only describe the types of seizure my son has and what they look like. Tonic/clonic A tonic/clonic seizure is what most people would recognise as a seizure. Michael will fall to the floor and his whole body will convulse. These generally last from 1 to 2 minutes, for my son these are his least common type. Absence In an absence Michael will go completely blank, although he will continue whatever he is doing he is unconcious and "loses" the 30 seconds or so the absence lasts. Partial Seizure Michael's most common seizure type, for Michael this is either a shoulder shrug, or picking his lips not what most people would think of as a seizure. At his worst he was having hundreds if not thousands of these a day. Drop (Atonic) With this seizure Michael simply drops straight to the floor. There are other types of seizure but these are the ones that I'm familar with. ************************** So how is it treated?? ************************** The majoriy of epileptics are successfully treated with the first drug they try, I beleive the figure is approximately 70%. My husband is one of these, if he takes his drugs he remains seizure free. For others like my son, the best we can do is keep the seizures to a minimum so that he can develop as best as possible. For others surgery is an option, where the part of the brain causing the seizures is removed. For yet others the ketogenic diet can help. And for a very small minority there is nothing that can help, and they will continue to fit all of their lives. *********************** Living with epilepsy *********************** For the child who is undiagnosed life can be difficult, they can be labelled disruptive, lazy, unattentive when they are actually having small seizures that mean they are "not with it most of the day" . For my husband, his epilepsy means he has to take drugs every day, is unable to drive, and finds working difficult. For my son it means every day is a challenge, besides the drugs he takes, he must be watched constantly (he once had an absence and walked in front of a car). He needs to wears sunglasses while outdoors as reflected light affects him. He will probably never be able to drive, and we are not sure if he will be able to live independently. But I must stress, he is at the worst end of the spectrum. ****************************************** What to do if your child has a seizure ****************************************** Make sure they are safe, this is easier with a child than an adult. If they are hitting their head on the floor then put something under it. This is all you can do at this stage. If it is their first seizure call an ambulance. If the seizure lasts more than 5 minutes or another one starts before the child regains conciousness Call an ambulance. If you have emergency meds now is the time to give them. When the seizure finishes, you will probably find the child goes to sleep, now is the time to check the airways and put the child in the recovery postition. If the seizure seems unusual for your child and you are worried call an ambulance, otherwise let them sleep it off while you keep an eye on them. ********************* What not to do ********************* Do NOT try to physically stop the movements of the child, you may end up injured and the child's bones may break. Do NOT try to put anything in their mouth while they are fitting. My brother-in law wanted to put his hand in my son's mouth, I said "you're welcome, but I'm not doing first aid when he bites your fingers off" ******************** And Finally ******************** This review is based on my experience as the mother of a child who has had epilepsy for 6 years. It is not a replacement for advice from a doctor. No matter if your child has epilepsy or not, you learn to cope with whatever life throws at them and love them for who they are. ************************* For further information ************************* Please visit : General : www.epilepsy.org.uk For parents : www.pokwe.uk.org

                Comments

                Login or register to add comments
                • More +
                  21.04.2002 12:40
                  10 Comments

                  Advantages

                  Disadvantages

                  • " touching"

                  As I wrote earlier I was diagnosed with epilepsy when I was 6. I will go into a bit more detail if it helps anyone who reads this. The first time I had a seizure I didn't know what was going on, I woke up went to get a glass of water and I dropped the glass and my dad came running, I couldn't see anything, only hear his terrified voice, it scared me. After that night it became common for me to have a seizure every night, and when I didn't I was grateful. I felt like such an outsider because my brother and my sister were so scared to sleep in the same room as me. I then began to go to the hosipital once a month to have tests done on me to figure out the cause, tests such as CAT scans and MRI's, but the doctors couldn't figure out why I was having them. After a while a medication was found, but it had terriable side effects, haor loss, vomiting, and a bunch of other effects. I took my chances and I didn't take the medicine. I continued to have seizures, but I only had them in my sleep. One night my sister had to call 911 because I wouldn't come out of my seizure and she was afriad I would choke on my tounge. After that experience I only had a few more seizures before I just suddenly stopped having them. I don't know why but they just stopped. I hope that this story is encouraging to anyone who has delt with the experiences or is now dealing with the experiences that I have.

                  Comments

                  Login or register to add comments
                  • More +
                    13.03.2002 21:07
                    Very helpful
                    (Rating)
                    22 Comments

                    Advantages

                    Disadvantages

                    • "You'll have to take drugs for years - perhaps for good"

                    A little over a year ago, I came out of my bathroom. (What an opening sentence, eh? I bet you're hanging on my every word...) The next thing I can remember was being helped into an ambulance and being taken the 16 miles to my local hospital (passing, on the way, the much nearer Kidderminster Hospital, which had been insanely downgraded shortly before). I certainly wasn't "all there" at the time, and didn't even bother to ask the ambulancemen why I was being packed off to Worcester until a little way into the journey. When I arrived at Worcester's Ronkswood hospital, the doctor who examined me told me I had had what is known as a "grand mal" epileptic seizure. This is what people tend to think of when they think of epileptic fits, if they think of them at all (incidentally, I prefer the plainer word "fit" to "seizure", despite its unfashionableness these days, so will mostly use it here). However, there are also "lesser" types ("petit mal", which is particularly common in children) in which the patient retains consciousness, perhaps with only a momentary blackout, lasting no longer than a blink. Anyway, the doctor decided that there was no reason to be particularly concerned for my condition, so made ready to discharge me. By now, I was feeling a little bit groggy, but by no means ill - it felt a little like coming round after a general anaesthetic - so went off to get a drink of water (my throat was very dry) and to go to the toilet down the corridor. The fact that I was allowed to walk these 50 yards on my own encouraged me into thinking that was it for the day. Right, thought I, all a bit irritating but we can stop worrying now, and look forward to going home. Famous last words. The next thing I knew, I was on a hospital trolley (or "external patient supervision device", as Alan Milburn would probably have it). Irritating person that I am, I'd had another fit. Given this, the doctor decided that it would be prudent to keep me in overnight, so I had some clothes, toothpaste etc brought from home, and began to compete in the NHS's most common sport: waiting for a bed. So I waited. And waited. Oh yes, and had another fit. On the trolley. This time (I should warn those of a sensitive disposition, or anyone who is eating, to look away now), I bit my tongue. Hard. You might think you've bitten your tongue hard when eating, but really it was nothing compared to this. My tongue's entire right side swelled up to about twice its normal size and turned a particularly interesting shade of purple (or rather, several interesting shades of purple. Wonder what Damien Hurst would have made of it?). Believe me, when I woke up it was a very nasty shock (though, as often with these things, the pain didn't come at once), and it took quite a few weeks to heal up completely. The one advantage of this third fit was that I got a real bed, which allowed me to sleep reasonably well overnight. After some quite acceptable cornflakes, I was discharged in the morning, but walking back to the car was a nightmare. This wasn't because I'd bashed my legs on anything, but because of the violence with which I'd shaken them during my seizures. (The violence of an epileptic fit of this nature also explains the force with which I bit my tongue.) If there are any dedicated athletes reading this, you can get close to imagining how I felt by doing a very strenuous workout, and then stopping without the slightest bit of "warming-down". Now, magnify that pain several-fold, and you'll have a vague approximation to how I felt Even with the maximum dose of painkillers, it was not at all pleasant. I spent the next few days off work, as I could barely move, but suffered no further fits. It was necessary to have a couple of follow-up appointments, though, partly because about one in ten f irst fits are caused by brain tumours. Thankfully, my brain scans showed no cause for concern in this department (and yes, to all the comedians out there, they did show a brain!). In fact, the causes of epileptic fits are still not at all well understood, and around a third of people who have a fit never have another. I've given this rather straightforward and unsensational account of my experience in order to reassure people that an epileptic fit, though unpleasant for the patient, their family and witnesses alike, is not a terrifying happening to the extent that a heart attack or brain haemorrhage is. If you come across a person having a fit, whatever you do *don't* try to wake them up - it won't work, and you'll probably get hurt yourself because of their violently thrashing limbs. The best thing you can do is to move any obstacles out of the way. Only attempt to move the person if there is immediate danger (eg if they are likely to fall off a roof). You might also put something soft under their head if the ground is hard, but beyond that, just stand back. They *will* recover by themselves, honestly. The drug my doctor prescribed for me was carbamazepine, which is a very common one. Perhaps the best-known trade name for this is Tegretol. (Doesn't it sound like a wood treatment? <Canadian accent on> "Tegretol - no-one does wood more good".) As with many medicines, the leaflet inside lists an absolutely enormous list of terrifying potential side-effects, but this is largely to protect the makers legally, and most of them are very rare. Having said that, it's not at all unknown to suffer some of the "lesser" side-effects, especially if you have any other sort of neurological condition. (I'm lucky in this regard.) Of course, it must be appreciated that it is extremely important to follow your doctor's advice, as epilepsy affects different people in different ways. For example, in some cases you may not be able to drink alcohol (I can, I'm pleased to say). Prescribed doses vary quite a bit - anything from 100mg to 1200mg a day (1 tablet = 100mg) - depending on several factors, including the severity and frequency of seizures. There's a good deal of confusion (even among epileptics themselves) about what people with epilepsy can and can't do. For example, in certain restricted cases they may be able to drive (I can't, at least not unless I go several years without any seizure at all). Jobs which involve overseeing the safety of the public and require absolute confidence that the person will be alert at all times (train driver, pilot etc) are mostly off-limits, but there's no reason why an epileptic person shouldn't work normally in 95%-plus of occupations. In the majority of cases, overcoming the attitude of certain colleagues (though most are simply ignorant of epilepsy rather than actually unpleasant) is likely to be your biggest hurdle. Another common misconception about epilepsy is that "epileptics can't use computers". Someone tell me what I'm doing now, then. I admit that this was the first question I asked the consultant at my checkup - he made it quite clear that the idea was "utter rubbish" in most cases. Sensible computer use, he said, had almost no effect on the majority of patients, though non-stop 8 hour PlayStation sessions might be a different matter. What is relevant is that I should not use too large a monitor (this is one reason I get irritated by people who say "you need 21-inch screens these days" or websites that require 1024x768 resolution). Still, everyone's case is different, so the important thing is to check with your doctor. When going out, it's not a bad idea wear a (reasonably discreet) bracelet, or to carry an explanatory card in your wallet, indicating that you have epilepsy, and summarising what people should do in the e vent of a fit (which, as I said above, is generally "not a lot" - though when, and only when, the convulsions are over, rolling them into the recovery position to help breathing is reasonable). Doing this will also help to reassure your friends and family, who will naturally be concerned for your safety when you go out alone. To sum up, then: having epilepsy is a flaming nuisance, as you have to remember to pop the pills (and to explain what they are to certain people in authority!), and you can't help but wonder slightly about every tiny little headache or slightly-longer-than-expected blink, but it's by no means an insurmountable barrier to enjoying yourself. Provided you didn't have your heart set on being a racing driver (now you see why I love driving games so much - it's the only way I can get behind the wheel!), you should be perfectly able to enjoy a full and happy life, even to the extent of writing appalling puns in Dooyoo titles... ======================= A note on the language: I am well aware that a considerable number of people with epilepsy dislike being referred to as "an epileptic", as it can be seen as implying that the condition is more important than the person. Personally, I'm quite happy to be referred to as such, which is why I've used the term once or twice here.

                    Comments

                    Login or register to add comments
                      More Comments
                    • More +
                      14.02.2002 19:35
                      Very helpful
                      (Rating)
                      34 Comments

                      Advantages

                      Disadvantages

                      Epilepsy. The very word still carries a stigma and can create fear. For anyone that has witnessed an epileptic seizure (I think that is a much better word than "fit"), you will know that it can be quite scary. As a teenager at school I had a close friend who suffered from major seizures quite frequently. At first it was terrifying but you soon learn how to cope and not to be overwhelmed by it. I nearly said, "frightened" but that rather gives the wrong impression. The one thing that never failed to sadden me was the reaction of Joe Public if it happened when we were out and about. I suppose it is ignorance. That was a long time ago and I would like to think that as a society we have come a bit further than that! I was not to know, at that time, how useful these early experiences of epilepsy were to be; or how they would come to affect me personally not too much later. Those of you that have been following my opinions will know that Lady Luck has not always looked down kindly on me! She has also been pretty unfair to my eldest child, my only son who is now twenty-two years old. I have already written about him and his two other major health problems. It is, indeed Philip who has epilepsy. As a small baby he nearly died from a severe food intolerance, which was not so widely recognised even as recently as twenty-two years ago! He has lactose intolerance. We finally had a diagnosis and Phil had been put on a special diet and begun to flourish. It was all very inconvenient in those days. We are so lucky now, you can get everything you need from the chemist or supermarket and everything is thoroughly labelled! Not so then- everything had to be ordered from the Doctor and food made freshly (better anyway really!) so that you knew what was in it! So, it was rather a lot of effort but at least he was well. At about the age of ten months odd things started to happen. He would be lying on the floor playing quite happily and all of a sudden he would go totally limp. His eyes were open but he had no idea that I was there or of anything else that was happening. His head rolled a bit and I also noticed that he was dribbling profusely. I picked him up but he was completely floppy. I ran downstairs to get his Dad but by the time we got there he was sitting himself up gingerly. He seemed very disorientated. As luck would have it the Health Visitor was coming later that day. I mentioned it to her, but she felt I was imagining it! She did not put it quite in those terms but she poo- pooed my fears and said he was probably asleep. Well, I am not a stupid person. I know that babies do suddenly nod off unexpectedly, but not with their eyes open! It did not put my mind at rest so I made an appointment for the GP. True to form, you had to be ill a week in advance to get an appointment!! By the time we were seen the "occurrence" had happened again a couple of times. The third time it happened I desperately tried to pull him round. He was clearly unconscious. I even pinched him to see if I would get a reaction! I felt bad but I needed to know if he was merely sleeping with his eyes open! Off we trotted to the doctor. The doctor did not take it particularly seriously although he did examine him very thoroughly. Phil had had a cold and he put it down to that. A month went by and it was happening more frequently. His sheet at the head end of the bed was often soaking. I thought perhaps it was urine and that he had turned round in the night. So I smelt it- nice! The things we do for our children!!!! It was not urine. Back we went to the doctor. He said he would refer us to the hospital but he was not convinced there was anything going on. I noticed he had written on the letter to the hospital "possibly a neurotic mother?". I was fuming. We went home to wait for our appointment. In the mean time the health visitor was sent round. I told her that I was very angry that such a thing should be said about me to the hospital and that it was utterly untrue. She agreed with me and said she would talk to our GP. While she was there Phil had a very small seizure. Thank God, someone else had seen. She agreed it was not right and said she would have the appointment sped up. By now this had been going on for about three months. Philip was walking holding on although he would not let go. It was difficult for me to carry him about, as I was very pregnant with my second child. He was a very intelligent little boy and was already talking in sentences, albeit simple ones! I took him to the hospital but they could not find an obvious problem. They informed me they thought he was perfectly ok and could I possibly be over reacting?! I told them what the Health Visitor had seen and they changed their tune a bit after that! They told me to bring him back in three months with a written chart of everything that happened. Within those three months my daughter Laura was born and we had to move house. Phil was also walking. In the new house the stairs went straight up, more or less from the front door. They were amazingly steep. One day I had not realised that Phil had gone upstairs and I went to get the post. There was a resounding crash as Phil went headlong down the stairs and landed at my feet. Fortunately, they do bounce a bit at that age! He knocked himself out briefly so off we went to casualty in an ambulance. (My car was off the road at the time). When we got there the Doctor thought he would send us up to neurology for an EEG (a brain trace). The doctor who had seen me when we went before just happened to be on duty. Phil was sitting on my lap facing the doctor who was taking notes. Then it happened- right in front of the Doctor! I have never been so glad to see a seizure. I hope that doesn't sound awful! "You see!" I said, "I told you!" < br>The Doctor said he felt I was due an apology. He asked if I minded if he tried to induce a fit while the electrodes were on Philip's head. He flashed a light on and off in his face. This definitely had the desired effect and they were able to see exactly what was going on as it was happening. At last, we were getting somewhere. After many more visits and tests it was decided that Phil had Temporal Lobe Epilepsy coupled with Photosensitive Epilepsy. He was put on medication which then confined all the seizures to when he was asleep apart from if he encountered flashing lights. The medication made him very dozy and we had to work hard with his learning skills. When he got to the age of three. We had huge problems finding a Playschool who would take him. It was a huge stigma and people were worried if anything happened it would frighten the other kiddies. I began to feel like a leper. Fortunately we did find a nice caring playgroup that took him on happily as long as I stayed. After 6 months they were happy to cope without me. Mostly he was fine, most nights he had a seizure but as long as he took his medicine regularly he was great during the day. Then, another disaster struck! He and his little sister were great pals and did everything together. She was vocally extraordinarily forward and at twenty months old could hold a decent conversation with you. I could hear them upstairs chatting happily away and left them playing. We had a stair gate so they were nice and safe. Or so I thought! I went into the garden to hang out the washing. When I came back I went upstairs to catch Phil spooning the last dregs of a full bottle of epilepsy medicine (Epilim) into his little sister. There was no way he should have been able to reach it. We had a high shelf for his medication only ten inches lower than the ceiling. It seems that Laura had felt left out and wanted medicine like her brother. Being a kind and loving elder brother he liked to pande r to her every whim! He had pulled a huge Victorian chest of drawers across the room and balanced a chair on top. He then went mountaineering! Even I could not move the chest on my own! Had I not been in the garden I would have heard the furniture being dragged about. This is a guilt I carry to this day. My baby girl could have died. These days they both think it is hilarious and often tell the story. Off we dashed in an ambulance to casualty. The Doctor was really nasty. She said my baby could die and it would be my fault for not keeping the medicine safely. This was unfair, I would never have thought a three year old would or could move furniture that I found too heavy to move. They gave Laura an emetic to make her vomit. They told me that she would be extremely sick but as it was my fault they would leave me to clean up all the floors! She was very sick and yes, I scrubbed all the floors. I was young and did not like to make a fuss, besides which I was more worried about my baby! To cut a long story short she had several days in hospital and is still here to tell the tale. She writes on the site sometimes! Look out for Greeneggsandham. We quickly bought a locking cabinet after that We then moved to Basingstoke. When Phil started school he was a bright little boy but his education began to suffer. He was a fluent reader at four and was quite numerate, too. To achieve this he needed loads of cajoling as the medicine made him very dopey. He was sent to the school nurse at lunchtime for his second dose. His teacher said he was under achieving because he was dreamy and wouldn't concentrate. I explained (as I had done when he started school) that this was due to the medication he was on. "What medication?" "The stuff for his epilepsy that you send him for every day" I thought she was an utterly stupid woman. These days he would have a special needs teacher assigned to him! Anyway, we muddled through. A s everything was now only happening at night we agreed, with the hospital, that when he started secondary school he should be weaned off the medication. This was to give his education a chance! It seemed fine! It has always stayed at night time seizures apart from the Photosensitive Epilepsy, which he has to watch out for. I will explain more about that in a minute. Ironically. He had only been off the medication for a few months when he contracted juvenile arthritis. I told you life had not been fair to him! I hope that these days the stigma is not as bad and I am sure schools are more clued up, but I thought I would share my story in case it helps anyone. They think that Ezekiel, Joan of Ark and Lewis Carroll had Temporal Lobe epilepsy, so I will tell Phil he is in good company. The only shame now is that he has not been able to drive. His arthritis has returned and driving would have been useful for him! Let me tell you a little about epilepsy. I won't go in to huge detail, as there are doctors on the site who could do it much better than me! WHAT IS EPILEPSY? Simply, it is a symptom of an underlying disfunction of the brain. It causes braincells to "misbehave" if you like! It can affect only part of the brain - focal epilepsy or all of it- generalised epilepsy. Epilepsy is extremely complex and there are many subtypes. PARTIAL EPILEPSIES This type have a clearly defined focal area in the brain, e.g. frontal lobe, temporal lobe etc Characteristic symptoms are motor difficulties down one side of the body and visual hallucinations. This reminds me of my migraine- how strange! The following are types of partial epilepsy: OCCIPITAL EPILEPSY BENIGN OCCIPITAL EPILEPSY FRONTAL LOBE EPILEPSY BENIGN ROLANDIC EPILEPSY MESIAL TEMPORAL LOBE EPILEPSY PARIETAL LOBE EPILEPSY Phil's symptoms were pretty much the Benign Rolandic Epil epsy although they said it was temporal lobe. In those days they were far more unsure about things, and were honest enough to admit it! GENERALISED IDEOPATHIC EPILEPSIES These have no defined area of the brain. Ideopathic means that there is no clear environmental cause and it is assumed to be genetic. The EEG can be normal between seizures. BENIGN MYOCLOMIC EPILEPSY IN INFANTS JUVENILE MYOCLOMIC EPILEPSY CHILDHOOD ABSENCES (PETIT MAL) JUVENILE ABSENCES CLONIC SEIZURES (GRAND MAL) GENERALISED SYMPTOMATIC EPILEPSIES These also have no focal part of the brain. It can all be affected. Symptomatic means that there is a structural abnormality of the brain. This includes: INFANTILE SPASMS LENNOX-GASTAUT SYNDROME PROGRESSIVE MYOCLONIC EPILEPSIES UNCLASSIFIED EPILEPSIES FEBRILE FITS EPILEPSY WITH CONTINUOUS SPIKE AND WAVES IN DEEP SLEEP LANDAU KLEFFNER SYNDROME RASMUSSEN?S SYNDROME WHAT IS THE CAUSE OF EPILEPSY? Up to 2% of the population has epilepsy. The true number is almost certainly higher, but due to the stigma and fear many people do not seek treatment. In 75% of cases there is no known cause. The other 25% the causes are: Brain injury to the foetus during pregnancy (ooh, the mind boggles) Birth trauma, such as lack of oxygen Poisoning from either solvent abuse or environmental factors e.g. lead poisoning Post infection- meningitis Head trauma e.g. car accident Alteration in blood sugar levels (hypoglycaemia) Brain Tumour or stroke Genetic defect PHOTOSENSITIVE EPILEPSY This can be part of another type of epilepsy or it can, more rarely, be suffered on its own! Seizures can be brought on by strobe lights, flickering fluorescent lights, looking out of a train window, sunlight flickering on water and sometimes-geometric shapes such a s checks and stripes. This is a shame for youngsters as it makes discos a bad idea. Even these days Philip avoids discos. At weddings he is often found outside chatting with a fag and a drink! He feels it just isn?t worth the risk. Flashes of 5/30 Hz per second can bring on seizures! Thankfully, VDU?s are usually ok. Interestingly, the lights and shapes can bring on my migraine. I wonder if there is a connection? So there you are! I bet you thought that epilepsy only came in two types- Grand Mal where the seizure has you writhing all over the floor, or Petit Mal, where it as though somebody has temporarily pulled out your plug!! As I said, it is a very complex disorder. There is no need to be afraid if someone has a major seizure. Turn them on their side and do not interfere too much. Treat them gently when they come round. Most of all please treat an epilepsy sufferer as though they are normal. I hated it when people called my little boy a freak! Thank you for reading.

                      Comments

                      Login or register to add comments
                        More Comments
                      • More +
                        28.10.2001 07:07
                        Very helpful
                        (Rating)
                        8 Comments

                        Advantages

                        Disadvantages

                        I have had epilepsy for nearly 20 years now, Im now 20, my first seizure was in the middle of swimming at school, sank like a stone apparently. The second was at home and involved me going blind. The next was a full on convulsion. So then the round of doctors and specialists started, leading me to feel like a guinea pig. EEG's, X-rays, deliberatly having seizures started so docs could monitor it. Having holes poked in my arms to take blood to monitor drug levels. Oh yes and then the drugs...started with Epilim, just made me hugely depressed, went on to Carbamazepin and Acetadolmid, then Phenytoin. Well after 4 years of being experimented on, I gave up the drugs figuring that having a seizure every now and again was better than the wild mood swings, the headaches, the bleeding gums and the weight gain. And they went for 3 years. Then I got pregnant, at the time I was not aware that seizures can increase at this time. I was not informed that I had to take extra folic acid luckily my seizures didnt start again until the day after I gave birth. Then I was humiliated, the nurses wouldnt let me hold my girl unless someone was by me all the time, that really depressed me. So I went back on Epilim, same old side effects so I moaned to the drs and got Lamictal, this drug has made such a difference to my life and everyone else I've known who takes it. You see its way more expensive than ordinary drugs. 8 years ago it cost £65 for a months supply compared to £2.00 worth of Diazepam and Epilim. So no matter what the quality of life cos of the side effects guess what they dish out first. Then for the first time in my life I was seizure free for 7 years, till guess what I got pregnant again! and they went manic, from nothing to once idea. Believe me, having a grand mal seizure when 7 months pregnant is not fun, higher levels of medication sorted that. But since then I've had greater difficulty in controlling them. What causes them for me? Stress: the number one, exam times at university are hell. Aromatherapy is good for it, but there are problems there which I'll cover in a mo. Caffeine: I never knew this till this year! 20 years I've had it and no-one told me caffeine can act as a barrier to medication. I went caffeine-free a few year ago cos of headaches, but then started drinking loads and sparked it off. Period times: This is common, its because of the change of hormones, but I know have a contraceptive which seems to have balanced out my hormones and this seems to have worked. Not sleeping Not eating Generally not looking after myself. Luckily I am not affected by flashing lights, strobes or alcohol. Seeing as I'm an ex-alcoholic my life would have been hell! Now this year I have finally found a number of contra-indications to epilepsy, i.e things that epileptics shouldnt use. You may be surprised Caffeine Evening Primrose Oil St Johns Wart Metronidazole (an antibiotic) Sage Oil (used in any way) Ciprox (so we're a bit buggered if anthrax gets here) I'm sure theres a lot more but people just dont know about these things, companies should be a lot more responsible and put these issues on their packaging. It may be a good precaution for people with epilepsy to avoid these things So there we go! This turnt out to be an op on the things to avoid the doctors dont tell you about! Maybe next time I shall explore the more social side, and talk about depression, anxiety attacks and self acceptance

                        Comments

                        Login or register to add comments
                        • More +
                          06.10.2001 23:21
                          Very helpful
                          (Rating)
                          2 Comments

                          Advantages

                          Disadvantages

                          I have suffered from Epilepsy since a child, something that as a child I just accepted and it didn’t really have much influence on my life, however as you enter your teens things start to change, I so desperately wanted to be ‘normal’ if there is such a word. There is so much peer pressure that I used to keep the fact that I had Epilepsy to myself, luckily I never had an experience where I had to inform anyone as the seizures only happened in my sleep, this is no longer the case and I have been known to have them during the day. I still don’t tell people that I suffer from Epilepsy, regardless of what people say there is still a stigma attached to it and I want people to know me as a person and not an individual with a ‘Label’, I sometimes feel that I have a big luminous sign on my forehead in big letters stating ‘EPILEPTIC!’. Because of the Epilepsy I suffered from depression as well although initially I didn’t realise it, but being prescribed Prozac was the best thing that I’ve ever done, I’m not suggesting that this is the answer as each individual is different but it was the answer for me. Okay I still suffer from Epilepsy but I feel as if I can cope with it, I still don’t go around announcing I suffer from Epilepsy if I’m being perfectly honest I am embarrassed about it, stupid I know considering that amount of people that suffer from Epilepsy I’m sure there are many people out there who can relate to what I am saying. I always remember one day I had an appointment with the Epilepsy nurse at the local hospital and I remember asking if I will always be an ‘Epileptic’ and she very rightly stated you are not an Epileptic but a ‘person who suffers from Epilepsy’ and I thought you are so right I am a normal human being and not an individual with a label…

                          Comments

                          Login or register to add comments
                          • More +
                            10.09.2001 18:56
                            Very helpful
                            (Rating)
                            85 Comments

                            Advantages

                            Disadvantages

                            Um… there's a rather graphic description just following, so be warned. Bear with me though, it turns out alright in the end. A long, long time ago I was living with a man called Mark. It was one of those nice, peaceful relationships; I don't think we ever exchanged a single cross word in the two or three years our relationship lasted. Mark was, and is, a nice man. We even worked together, in fact that's how we'd met. One day we were sitting in the staffroom eating lunch. I was reading and Mark was chatting and laughing with everyone else when suddenly he leapt to his feet. The chair scraped backwards and fell over and the noise made me look up, startled. All I could see was Mark, a big man, well over six feet tall and about fifteen stones, with arms raised and fists clenched, looking for all the world like he was coming toward me in attack. It was one of those freeze-frame moments, you know? I just sat. I couldn't move and all I could think was that no one else was moving either, except Mark. I don't think I'll ever forget the look on his face. To me, sitting there terrified, it looked like a snarl: his face was contorted and rigid, bubbles of saliva were around his mouth and his eyes looked as though they'd been suddenly afflicted with cataracts; they were glazed and unfocussed, and yet they seemed to be looking straight at me. Horrible, slow-moving moments took an age to tick by and then he fell to the floor, still rigid, but jerking and moaning. One of my colleagues, an ex-nurse, rushed forwards with her jacket which she rolled up and pushed under his head. I, and everyone else, still just sat, staring, shocked, afraid, unable to move. And still the time ticked by so slowly. Eventually, after what seemed like hours, no, not hours but a simply unmeasurable amount of time, Mark stopped twisting and and convulsing and began to sigh deeply, with the longest, most drawn-out breaths. An ambulance arrived, som eone had called it, I've no idea who, and I went with him to the hospital. Inside the ambulance Mark was awake, but dazed and confused. He held on to my hand for dear life, like a small child in a strange place, afraid to lose sure contact with its parent. He couldn't remember what day it was or what year it was, and when asked for his address gave a street name I didn't recognise, but later turned out to be the house where he'd lived as a very small boy. He wasn't sure who I was either, but realised that he should know, and his face crumpled into sad, frightened, unsure tears. I felt like doing the same, but just sat there holding his hand back, as tightly as I could, head whirling but trying to look calm and encouraging. The rest of it, the casualty department, the nurses buzzing to and fro, the doctors, the white coats, the tests, the serious questions and answers, today they are all a blur. I only remember Mark, the chair scraping, the awful look on his face, and how terribly afraid I was, and how terribly afraid he must have been. And that was the first time I saw an epileptic fit. That was a long time ago and since then I've seen Mark have many more seizures, each one a little less frightening and distressing for both of us. We're not together any more: we've both met and married other people and we've both had children. But we still work together and, happily, we're still friends, good friends. Mark turned out to be severely epileptic. His fits are big fits, seizures I should really call them: they last for a long time, up to fifteen, maybe twenty minutes each sometimes, and despite high doses of medication he still has them fairly regularly. His life has changed quite a lot – he can no longer drive a car, for example. Epileptics are required to give up their driving licences and can reapply generally after a year free of seizures but Mark has never been free for more than a couple of mo nths at a time. Still, we live in London, and the public transport service is good, and his wife drives. Mark must make sure that nothing interferes with the absorption of his medication and so late night vindaloos after an evening at the pub are pretty much out of the question for him. He needs to walk away from stressful situations more than the rest of us do, and he needs to make sure he gets enough sleep and that his sleep is of a regular pattern. Mostly though, his life carries on as normal, much as yours does, mine does, or anyone's does – he goes to work, he has a social life and he insists as loudly as anyone that his daughter is great. So it's not so frightening any more, for either of us, or for anyone else close to Mark. After a while we even developed a joke between us – after a seizure I'd give Mark ice-skating style marks out six for the "artistic impression" of his fall, straight into the recovery position being at least 5.9, of course. His mother didn't find it very funny, but we did. In some ways Mark has even found benefits to being diagnosed epileptic – although the seizure I described above was his first, full convulsive fit (or Grand Mal), it is thought that Mark had suffered from non-convulsive seizures (or Petit Mal) throughout his life. It has made sense to him of many past events: times when he thought he couldn't remember the lesson he'd just attended at school, or where he'd got with his homework, or what his mother, or his friend had just said to him. He'd often felt stupidly forgetful as a child, and considered himself to be not as bright as he should be, and had spent a lot of time trying to conceal and cover up those "white spaces". Now that he knows their cause he's felt his self-confidence and happiness in himself to grow and flourish as it always should have done. So in a strange but good way, it's made his world a more secure place. Ther e are many different types of epilepsy – seizures range from those Petit Mal "blank moments" which can last for several minutes or just a moment or two, to the Grand Mal convulsions which Mark has, lasting anything from seconds to those long minutes I described. And there are many, many epileptics too – did you realise that one in twenty people in the UK will have a seizure at some time in their lives? And that one in fifty will be diagnosed as epileptic? That's an awful lot isn't it? The condition can be controlled in the vast majority of patients, for about two thirds of sufferers modern medication will mean fit-free living. Few are like Mark and continue to fit regularly, but there are still large numbers of people like him. And so, although it is a terribly frightening thing, to see someone in convulsion, you should know that as a general rule there really isn't so much to be afraid of. It looks so dangerous, I know, but mostly it isn't anywhere near as bad as it appears. I've taken the liberty of pasting one of those sexy little bullet point lists from the British Association of Epilepsy's site (http://www.epilepsy.org.uk) to show you that most of the time there is little you can or should do until the seizure is over and when you should be worried and seek help: WHAT TO DO: * Put something soft under their head * Prevent others from crowding round * When the convulsive part of the seizure is over, roll them on to their side to the recovery position * Check they are breathing easily * Stay with them until they regain full consciousness * Be reassuring and minimise any embarrassment WHAT NOT TO DO: * DON'T try to restrain the person having a seizure * DON'T put anything in their mouth or force anything between their teeth * DON'T try to stop the seizure * DON'T try to move them unless they are in a dangerous place e.g. in the road or at the top of stairs * DON'T give them anything to eat or drink until they have fully recovered WHEN TO SEEK MEDICAL HELP: * Someone has injured themselves badly in a seizure * They have trouble breathing after a seizure * One seizure immediately follows another * The seizure continues for longer than usual * The seizure lasts more than five minutes and you do not know how long they usually last * It is the person's first seizure. So you can see that unless the seizure lasts for an overly long time, or the person has injured themselves in their fall, there really is little you can do. Don't feel helpless – it's truly because there is nothing to do, except wait for it to be over. The most important "right" thing to do comes when the person is beginning to regain consciousness and the seizure has ended. Read those words above, "prevent others from crowding around". That's really important. As epileptics start to come around remember that they have no real memory of what's happened. They're confused, a little bit scared maybe, and the last thing they need is to see crowds of faces peering at them. Often, the person will have a friend or relative with them and in that case you really are better to walk on by (after quickly checking with them they don't need you for anything practical, like carrying bags to a car, of course), for a familiar, reassuring presence is all they will need. All you will do by hanging around is add to any distress felt, and chattering and discussing the person is just not nice, for them as they start to be aware of who's around them or what they're saying, and also for the people trying to look after them. At work, even now, I find myself raging inside at the people who will insist on standing about talking about Mark and his seizure, however well-meaning they are. It's a "does he take sugar" kind of thing, you know? In fact, I'm only sitting here writing this, because one of those well-meaning work colleagues made Mark cry just the other day at work by asking me questions about him as I sat with him after he'd had a seizure. They didn't mean to, but they did. If the person is alone then you need to just sit with them quietly, answering their questions briefly but reassuringly, and persuading them to lie still until they're fully recovered. Most people are very disorientated and sleepy for quite a long time afterwards, so don't worry if their words don't make too much sense, just talk quietly to them and make very sure that they can get home safely for a good long sleep. Of course, if you're out in public and you can't find an ID bracelet or card with any information, and you're at all unsure, then call that ambulance. But do try not to be afraid. And do try to stop people doing that crowding in thing if you can. I'll stop now, because I'm starting to go on, I can tell. I really did tell you that story for a reason though – because I want you to know that if epilepsy ever touches your life in any way, if it touches you, or a member of your family, or one of your friends or work colleagues, or even someone in the library, the shops, or the street, that mostly you've no reason to be as afraid as I was. Epilepsy is not a matter for fear or revulsion, it's just an illness that people suffer from, like any other illness. It doesn't mean mental illness or handicap and it has no reflection on a person's abilities or capabilities, it just means they have epilepsy. For my friend Mark things have turned out just fine, his life is a happy one with a few inconveniences, like driving, that really are minor ones on a cosmic sort of scale, he's no "different" to you and I. And you shouldn't think he is. Oh yes, and I'd like to say thank you to Mark, because when I asked him if he'd mind me writing about him here, and if he'd like me to change his name he said, "Of course not. And why would I want you to change my name?" For more, and better information than mine, head off to the following three sites: http://www.epilepsy.org.uk http://erg.ion.ucl.ac.uk/NSEhome http://www.epilepsynse.org.uk/pages/index/home/

                            Comments

                            Login or register to add comments
                              More Comments
                            • More +
                              18.03.2001 17:15
                              Very helpful
                              (Rating)

                              Advantages

                              Disadvantages

                              This opinion was inspired by Sunbeam’s earlier opinion which helped me to put pen to paper. As a sufferer of some 20 years of this neurological disorder I have found that in my case the best way of dealing with it is to live life to the full whilst treating it with the respect that such a problem deserves. My condition stems from a series of sporting injuries; playing both football and cricket I received 3 blows to the head within a space of three weeks. Two weeks after the last injury I was walking down my local high street with my parents when I suffered my first major seizure. It was devastating for my parents as I had been tested when I was younger as part of a rolling programme and had received a clean bill of health. The following 18 months were equally scary for me as I struggled to cope with one set of drugs after another but I was fortunate enough to have a dedicated consultant who urged my parents not to wrap me up in cotton wool because of what had happened. As a result of his advice my parents allowed me continue to cycle to friends houses and still to play sports. Because of this my confidence never suffered the blows that some receive and I learned to go out and live life. Once my confidence had risen to the levels that it had enjoyed before that first seizure I was able to go ski-ing, something that a lot of people with this problem at the time were unable to do because of the blanket approach that was often taken by doctors in advising parents what activities their child should and should not do. Since that time I have enjoyed eleven years in the full contact hobby of English Civil War re-eanactment. On a closing note, believe in yourself and you will be able to do things that you never thought possible. I heartily agree with the publication of the do’s and don’ts that have been already posted but I would like to post one other. Please always check wallets and purses as I always carry a bright orange card issued by my GP which has my current tablet dosages and contact details for home, partner and work. Live life! Mark Ghazarian aka ‘Guz’

                              Comments

                              Login or register to add comments
                            • More +
                              14.03.2001 04:33
                              Very helpful
                              (Rating)
                              3 Comments

                              Advantages

                              Disadvantages

                              I will start off by saying I myself do not have epilepsy but I once had a boyfriend who did. Every night he would have a fit and it would scare me because I did not know what to do or expect. After talking to my boyfriend he told me that if he had a fit I was to just leave him and he would come out of it on his own.I found he only had fits when he was asleep so when we out together I knew he was safe. I slowely learned that if I wanted us to be together I had to accept his faults. Dont get me wrong Im not saying having epilepsy was his fault because it was not. Anyway on the seventh of may 1999 I recieved a phone calling telling me my boyfriend was dead after I found out I was so lost. I never got the chance to say goodbye or sorry as we had argued. After waiting for several months there was an inquest in to how he had died the coroner explained he had been takening his tablets as recommened but his last fit had been to much for him to take and he had died. Epilepsy is a silent killer and I urge anyone out thatplease make the most of what you have because one day it may not be there anymore.You may never get the chance to say goodbye.

                              Comments

                              Login or register to add comments
                              • More +
                                07.03.2001 05:32
                                Very helpful
                                (Rating)
                                11 Comments

                                Advantages

                                Disadvantages

                                Seeing someone take an epileptic can be a frightening experience, so I thought I would take a few minutes to explain a few things about epilepsy. What is Epilepsy. **************** A seizure (the word which replaced "fit")occurs when there has been an electrical malfunction in the brain. The brain sends messages to parts of the body constantly. One way of understanding a seizure is simply that the nerve cells that communicate a message temporaily are disrupted and the brain tries to work hard to understand what is happening. There are many types of seizure (over 40, according the the British Epilepsy Association website.) These can be put in two classes. Grand mal =big Petit mal = small. For full information please see: http:/epilepsy.org.uk ( The British Epilepsy Association) or http:/epilepsyscotland.org.uk (The Scottish Epilepsy Association) The British Association has useful First aid advice. ************* My experience ************** I was diagnosed in America in 1980, at the age of 8. I had just come out of a swimming pool, walked into the house of a relative..... looked at the kids playing on the computer and took a seizure. After 3 days in hospital and numerous checks, I was diagnosed as an Epileptic. Seizures can be caused by numerous things, heat, light, food etc. As time went on we found out that my Epilepsy was triggered by light. (Photosensitive epilepsy) I was not allowed to swim, ride a bike and use computers. ( I still have to be careful, even with a screen filter.) Seizures used to be a regular occurance, especially through my puberty, but I can always relate a fit back to looking at an intensive light. (ie being too close to a TV) I have now been seizure free for 7 years. Medication There is a lot of medication around. I used to take 5 tablets a day...... now I am down to two. What happens to me personally. ** NOT ALL EPILEPTICS ARE THE SAME.******* I personally get a few minutes warning of a seizure ........ so I would normally talk you through it. Some people get no warning. I get a throbing headache. I see a flashing ball of light in my left eye. I begin to lose my focus. My eyes can not fix on one object, no matter how hard I try. I go into a full seizure. My body jerks, "foam" at mouth and lose consciousness for a few minutes...... I come round with a massive headache an sleep it off. An ambulance is not usually necessary for someone who has taken a seizure, but may be required. eg Someone has hurt themselves, their first seizure etc. What to do if you see someone take a seizure ******************************************** Do try to turn the person into the recovery position ( on their side) The person may have saliva coming out their mouth and turning them on their side helps to keep the airway clear Put something soft under their head. A person taking a seizure will move arms and legs about. Make sure that their is nothing in their way that could harm them. Reassure the person. DO NOT ******* Panic. Move the person unless they are in danger. Put anything in their mouth, this blocks the airway. Do Not restrain the movements of the person. Do not give them anything to drink- until they have fully recovered.

                                Comments

                                Login or register to add comments
                                  More Comments