Epilepsy
pauluk
Posts: 193 Forum Member
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I got epilepsy when i was diganosed with chronic fatigue syndrome. It usually happens when i get overtired. I get bad ones and mild ones. I sometimes just jerk. i swimg foward or my hand shakes. Worse ones is when my whole body shakes my legs go up in the air and my arms shake while i make strange noises. I`m lucky though as i never pass out. There are many diffrent forms of epilepsy. What have other people experinced with epilepsy and what triggers it?
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I had epilepsy when I was younger and had similar symptoms, I'm in remission and often things I found which scared me often caused me to start fitting, however mine could also appear for no reason, mine also could not be diagnosed and completely stumped a team of expert doctors from Alder Hey in Liverpool. Don't worry, you are not alone.
Hope you find the source of your problem and is easily diagnosed. Good luck.
If you want to know more, PM me.
My husband has epilepsy as a result of a head injury in a bad car accident.
He's on medication for life - no such thing as remission with epilepsy.
I expect Richard Hammond (Top Gear) should be worried.
Paul
I have had epilepsy since birth, and was diagnosed at 7 monhs. I suffer all extremes of seizures and have been hospitalised twice in the past year. Forgive me but, from what you say, what you have does not sound like epilepsy brought on by CFS, as the two are not usually connected. You are fortunate not to suffer grand mal seizures.
Epilepsy is an illness which has never been given the public attention it deserves, compared with something like diabetes. It is starting to become more apparent, publicly, with more research being carried out into the causes, etc. The only possible cure for epilepsy, is brain surgery and, as with all operations, there are risks involved. It can be successful, and you will be seizure free for life; it can be unsuccessful, and you can end up like a cabbage; or you could die during the operation. I am not a candidate for the surgery as, in order to be suitable, the epilepsy has to be limited to one side of the brain. I have it all over my brain. Plus, I think even if I was suitable, I would rather take medication, and have periods without grand mal seizures - although the petit mal occur multi daily - than suffer any negative effects.
Having epilepsy has a hugely negative impact on one's daily life, one's actions and one's family. Despite what some people say, I never experienced any adverse reactions growing up, at school. Everyone who knew me just accepted it. The main thing I miss is being able to drive. That limits me. I live at home with my mum and, when I bought a house with the intention of moving out, I ended up in hospital, and my mum had to bring some realilsm to the mix; it is not safe for me to live alone. Have you heard of SUDEP? (sudden unexplained death in epilepsy). I try not to let it affect the way in which I live my life, but there is a difference between being optimistic and being impractical.
Compared to a lot of people I do believe, however, that I am extremely fortunate. If life tosses you a few lemons, you simply have to make up some lemonade.