Hi there

Hello all.. I haven't had epilepsy for that long.. In fact my first seizure happened close to the end of November (2016).. So I'm still in the process of learning how to live with it.. I have tonic-clonic seizures as well as nocturnal seizures..

But the good news is that I've been 2 and a half months seizure free so it seems that the pills my doctor has me on now is working.. (Epitec 100ml)

It has been one hell of a journey and as much as I hate it and feel the depression that sometimes want to rear its ugly head.. I know that my family is there for me..

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  • Hi - I'm not quite sure of your age or circumstances, but I have epilepsy to and have had since I was 10 - I'm now 55 years old. I live my life to the full and do not let epilepsy control it.

    I went through a low point in my life when I was in my early 20's but one day, I was asked to form a discussion group for student social workers. This was most therapeutic, so I started a support group - the only one in the Cape Province, which I ran for 26 years. This gave me a huge boost in confidence and self esteem and I realised that I could use the negative energies of Epilepsy to do something positive. I also started setting goals and beating down those challenges I was faced with and turned my life around. I felt confident enough to start studying civil engineering when I was 30. I no longer run a support network but remain very active with Epilepsy SA as National Vice Chairperson.

    Epilepsy is only a condition and it can be managed better by yourself too. A positive mind is a great start and look beyond the barriers, however large or small. So many people tell themselves they cant swim, walk to the shop, ride a bike, do a sport, etc. etc. because they have epilepsy. When one starts creating those small barriers, they become big ones and in no time they are in a box with a whole lot of negative thoughts - these create subconscious stress which can stimulate the onset of a seizure.

    You need to do the things in life that you are capable of and that you want to do and enjoy them. I used to do long distance swimming challenges 1.6km (1 mile), I have been a cyclist most of my life and mountain biker. My wife and I belong to a cycling club doing long distance (approx. 80 - 100km) road cycling on a Saturday and Mountain biking when we can - we also do a night mountain bike club ride (2hrs) up the mountain overlooking the Southern suburbs. It is awesome in the dark seeing all those lights below and Epilepsy is the last thought if at all on my mind. Many have asked but what if you fall or drown due to a seizure - well my response is that at least I went out doing something I enjoyed.

    I am on medication - Epitec and Convulex and have about 1 seizure per year. I fell rather badly when I had my last seizure but the seizure was due to my poor management of my condition - had a couple of drinks in the festive spirit one evening before we did an early morning ride and I had not had sufficient water to drink and did not boost my medication. That with a late night and exercise was a recipe for the incident. I learnt by it and pulled myself together again - it happens to the best of us. Hydration is a great lesson - lets pray we get rain.

    I hope I have given you some assistance - don't sit and let depression set in - there is too much to live for - you just need to step out and work at it.

    Regards

    Tim

  • Thank you for sharing your experience. It is a good feeling knowing that some people out there know what it's like. I've had it where people look at me as though I'm speaking a foreign language. And then go on as though it's something that is just a once of thing that one can control.

  • It sounds like you are on a path to being better stabilised. Epilepsy is often stress related and I know a few people who have no seizure history but have gone through extremely stressful periods, which has stimulated the onset of a couple of seizures. When they have passed this period they have been fine. We all have a threshold which can be difficult to measure.

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