Wednesday, March 10, 2010

Growing out of epilepsy .

I thought this might be encouraging for those who have to live with epilepsy .
It's been 10 years now since my last seizure - I appear to have grown out of it [ I'm 44 now ] . 
Just to confirm - 'epilepsy' is a very broad term describing regular convulsions and what works for one person does not necessarily work for another - and I'm no doctor but I can share what I know from experience .

Firstly , I experienced a lot of prejudice regarding the condition even though they are trying to create more awareness of it . Back in South Africa I was unemployed for 2 years and was turned away from 3 definite jobs because I hadn't done my military training due to the fact that the army wouldn't have me because of the epilepsy .  That was enough to scare anyone away from employing me even though I had a specialists letter stating that I could do any occupation I wanted since it was fully controlled on medication .

I was having ONE seizure a YEAR ! ..... in my sleep ! ... each new school year , with all the change , the stress caused a fit one night of the year and that prevented me from getting a job for two years after leaving school .
An EEG showed that my condition was not hereditary - probably from a [ one of many ] knock on my head as a child . 
I think I was about 13 when I had the first one in my sleep ... BUT : I had been having migraines for a few years already . One specialist suggested that a bad enough migraine could do enough damage to cause epilepsy but who knows ? One thing I do know is that I stopped having migraines when the epilepsy started and when I stopped taking my medication for a while I had one massive migraine and the fits returned .

Once on medication again [tegretol] it was ok but my concentration was impaired . 
When I moved to a different town [ from my hometown ] I started having fits every 6 weeks - in my sleep . Apparently my eyes started changing colour and my skin got a strange smell a few days before each episode . This carried on for the 7 years I lived there until I went onto the really strong medication [ Tegretol ]
[I moved to New Zealand 8 1/2 years ago  after being 'controlled' on the Tegretol for 18 months , much less stress here has helped ! ]
I hadn't had a fit for 5 years and stopped taking my medication [ for the second time ] - one night I had to work very late which messed up my sleep pattern for a few days .... 3 days after that I had my first migraine in 10 years which scared me ... besides the fact that it paralyzed my left arm , took away 90% of my eyesight and my speech for half an hour - the worst I've ever had . 
The fits never returned but the migraines did - now I just learn to eat properly , get regular sleep and don't eat a large bowl of ice-cream before going to sleep - or white chocolate ! .... all the things that triggered the epilepsy trigger migraines with me ...... I haven't had another one for three years now since I don't do any more late overtime at work .
Strangely , from the early years ,  the medication that agreed with me most was Epilim and this was used effectively to control my migraines as well - I stopped taking it a year ago now .
I believe it is the epilepsy and strong medication that affects my memory .... I'm a bit like a high speed computer with a small hard drive and not enough RAM . I used to get 100% for maths at school and 25% for history - all processing power with no memory .
I also have an active interest in photography and maintain a blog regarding my learning process .
I earn a living as an auto electrician and started another apprenticeship recently as a diesel fuel technician .
I'm not dumb but my memory is bad - still good enough to live normally but nothing like it could be .
In the mind :
Now on to some advice , as mentioned this may not work for everyone but it's worth thinking about .
As a child I could 'trigger' "deja vu" by concentrating on an object . It's really "temporal lobal partial dysplasia" - when your mind 'slips a gear' and what is going into your brain is already coming back out of your memory before you register that it is happening ... and you think " I've been here before - this has happened before " or " I dreamed this and  now it's happening ! " ..... it's just a glitch in your memory for a while and usually only happens to most people in a strange place when the mind is more active and more susceptible to instability .
People with epilepsy often have it just about anywhere at any time and when you think " I've been here before and this has happened before " you then think "of course I have , I'm lying in my room  so why do I feel like this? " .
Anyway I can no longer do this [ trigger it ] but simply talking about it to people , or writing a blog about it , usually means I will have a restless night's sleep with crazy dreams even if I've had no trouble for a year .... because you can trigger these things with your mind to a large degree .... and conversely control them by not dwelling on the subject too much !
I met someone a while ago with similar problems , he told me that he once had a fit while watching the sun go down and convinced himself it was the sunset that did it ... for the next few weeks he had a fit each time the sun went down .... he was triggering it in his mind !
Anyway I talked him into getting healthy , eating better and exercising more . We went for hikes in the mountains , he got fitter , ate healthier and eventually got his drivers license back because he never had a fit for 18 months ! . When I moved to another town he got out of shape again .. and started having fits again . That's a lesson in itself - regular exercise and good eating patterns can work wonders !
besides that if you have a problem with epilepsy simply sharing it with someone that has the same condition can work wonders on your mental well-being - simply knowing you are not the only one with the problem and your experiences aren't unique to you .
And , as mentioned , even though you can't necessarily fix the problem totally with your mind you can make things a bit more bearable by not dwelling on it too much to the point where you are actually creating more problems with your mind ... nobody needs to add to the problems epilepsy causes !
I was 'lucky' in that it was only in my sleep but sympathize with people still battling with the condition .
If you want to just talk about it feel free to contact me via my profile on the right :) .
Cheers , Desmond . 

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