Dealing with Epilepsy

Dealing with Epilepsy

Forty five years ago I stood looking out the window one Saturday when all of a sudden I collasped. Turned out to be a Tonic-Clonic seizure. The first of thousands yet to come. I had no control of my Epilepsy for some twenty five years.

Although all the doctors I saw said I would never have any control of my seizures, in spite of everything I refused to give up and did manange to achieve some degree of control even though it was not complete control and the next twenty years of seizures were unpredictable, it was better than the first twenty five.

As far as dealing with my Epilepsy I had a hard time. I had a nervous breakdown and because of the daily seizures had to quit school in the 10th grade.

About a year after my first seizure at age 14 I had my first experience of Status Epilepticus. In the hospital I was put into an induced coma for about a week or two. When I came to I didn't remember anything of my past, parents nothing. I found out I developed Retrograde Amnesia, my entire life's memories were gone (15 years)and they never returned.

There is always hope however, I did obtain some control and even managed to get a drivers license which I would lose at least 8 more times. But I've got one now and had it for the last 16 months.

Anyone with Epilepsy should have a MedicAlert ID (or similer) in case of emergency. It has saved me more than once. The question I am asked most often is aren't you embarrassed or ashamed you have Epilepsy? Absolutely not, I know about the condition and if other people are ignorant of it that's their problem not mine. NEVER be embarrassed or ashamed you have the condition.

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  • Hi Jake, are you able to lead a normal life now? Lisa's amount of seizures makes new learning almost impossible for her, although some days are worse than others, her long term memory is very good i.e childhood days.I do worry that this could get worse with further surgery though.

    Lisa also had to finish school about 2 years early due to her epilepsy.

    Paul

  • Hi Paul,.....Well, I don't feel my life is as normal as most people's but that's mainly because of my memory. Both short and long term have been affected.

    New learning is almost impossible because of my memory problems. I went back to school a couple of times.but it didn't work out, I just couldn't remember.

    Although I am my mentally handicapped cousin's conservator and his trustee which is challanging to say the least. I find that I am going back to the attorney and asking the same questions which is not a cheap mistake to make.

    One way it's not normal, I can't read a book. I can't keep it straight who's who and how the plot is going. Overall however I suppose my life is pretty normal although it is very difficult.

    Jake

  • Jake, yes i understand how you feel, i know Lisa gets very frustrated for example pin numbers when going to a cash machine.Some years ago now... using a credit card you just had to sign a till receipt in the uk but then what they called "chip and pin" came in where you had to use a pin number for each transaction at the till.I do realise it's all for security but for Lisa it was very difficult and still is to some degree.

    I'm not sure how you go on in the states but i'm sure you have pin numbers like us.

    Just like to add over years you helped many people on the Epilepsy Society forum despite everything, it does make a differance sharing knowledge/experiences.

    Paul

  • Hi Jake and Paul,

    I can relate to the things you have said. I'm a long termer, had epilepsy for over 50 years and had certain types of seizures badly diagnosed at one time, but got it sorted eventually.

    Things are much better though than they were even though we've a long way to go before ordinery people understand epilepsy and it's causes and the very individual kinds of seizures different people have. When I was about 9 I can remember I was having simple and complex partial seizures though they weren't recognised then, only the tonic clonics were. Once at school I had a complex partial (where I lose awareness but don't collapse) I remember coming out of it and a teacher was smacking me and shouting at me cos I was apparently rocking backwards and forwards and talking out loud but making no sense.

    I was said to be a problem child then with a personality disorder, they didn't realuse it was TLE and they were seizures for years.

    I also know what you mean about memory, and I'm clumsy too, but over the years I've become so used to having E now that I lead the only life I know, so I guess it's normal for me. The only thing I can't do really is drive, hold a gun licence or join the armed forces and I'm not interested in any of those things to be honest.

    I still have about 2 simple or complex partial seizures a week but that's much better than when I was having daily clusters, then my life was in no way normal and it too me a few years to make the doctors understand it was the epilepsy, and that was in the 1990s.

    But things have improved positively since then for me at least. I hope things work out for both of you too and who wants to be 'normal' anyway, 'normal' is boring.

    The way I see it now is, if ppl can't cope with my seizures as they are then I'm better off without those ppl.

  • Mimi, it's really shocking how teachers would have reacted not too long back, today we'd get them prosocuted!.It must have been very upsetting for you at the time and to still remember that day so many years later.

    It's also true how they used to lock people away because as they thought people with epilepsy or mental problems were mad, i'm so glad we live in the present day.Things have improved alot over the years from the treatments to the understanding of the condition, however even the closest person to the sufferer doesn't fully understand (& we never will).I'm glad your epilepsy did improve over the years, although i expect you'll never forget those terrible memories from childhood.

    Paul

  • Hi Mimi,

    What an awful experience that must have been for you with the teacher acting like that.

    I understand how painful it is to remember something so crue.

    My Dad was in the hospital out of state for six months (quadraplegia), my Mom and I went with him and my brother stayed home. Money was tight maintaining two households. My brother worked to help out and I tried to get a job too. I applied for a job and told the woman I had Epilepsy, she said "we don't hire cripples" and walked away. That was 42 years ago and it still bothers me today. Your right Paul "you never forget those terrible memories."

    Didn't your eeg show any abnormalities when you were a child Mimi? I was diagnosed in the 60's in fact within hours of the seizure. Two days later our families Neurosurgeon (My Dad and both his parents had brain tumors) confirmed the diagnosis. I don't understand why it took so long to be diagnosed. The grief it caused you had to be awful.

    I was lucky, I eventually got to drive although I never was allowed to scuba dive or learn to fly, a friend of mine did teach me some basics about flying a helicopter which I really enjoyed.

    I'm glad things are better for you know. You cheered me up saying "who wants to be 'normal' anyway, 'normal' is boring" very true.

    Your right about if "people can't cope with my seizures as they are then I'm better off without those people".

    We were lucky Paul, everything crossed that Lisa will get lucky too!!!

    Jake

  • thank-you Jake, it's really nice your thinking of us.How are things in the USA?, have things got better in that part of the world? (seem to remember your from there?) i wonder if you have to battle with people with regards epilepsy treatment and care? we're very lucky in the UK with our National Health Service (NHS) but even here the cuts are starting to dig in.

    Hope you have a wonderful Christmas Day.

    Paul

  • Hi Jake and Paul, yes they did give me an EEG at age 7 and picked up on the fact that I had epilepsy but didn't recognise the complex partial seizures in those days, only the tonic clonic ones. I didn't have absences and they called them petit mal in those days so my seizures where I lost awareness and didn't collapse were't considered to be seizures and even in my teens I was told I was putting these 'turns' on just to get attention.

    It was the 80s before they decided they were seizures and again they still didn't totally recognise a lot of my symptoms as epilepsy until the early 90s. It was also the 80s before they decided I had TLE, before that you were just epilpetic and that was it, no explainations of different types and again til at least the 70s, the only meds available here for epilepsy (any kind of seizures) was phenobabritone, which I was on for about 4 years from age 7. Then much later, closer to the 70s, the new and better meds started to arrive.

    Things are better now though and doctors seem to give me a bit more respect these days. Well some doctors.

  • Hi all,

    Sharing your stories like this is such a generous and useful gift to others. Thank you for being our Health Unlocked pioneers!

    Other 'HU' communities have been going for years, and some have thousands of members, but all of them started like ours with a fabulous few like you who want to help others and make a difference.

    Keep blogging what's on your mind, and if you like Health Unlocked, why not tell a friend about it?

    Eddie, Admin.

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