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Can Anyone with Epilepsy or a Seizure Disorder Help Me? - August 26th 2012, 08:59 AM

I had infantile spasms as a baby. When I was 14 I started having these episodes where I move back and forth ( swaying sometimes I cant control my head movements), stare off to space and become unresponsive.When the episodes are done I am confused and tired. Even the ER doctors have witnessed it. I was prescribed Tegretol but it didn't help. When i had an EEG it said I have no seizure activity. But I am not faking these movements ( and I am not doing them on purpose) and symptoms and my neurologist believes me. What's wrong with this picture? could it be that maybe my seizures aren't triggered by flashing lights or rapid breathing? I've heard that sometimes the EEG can't show every seizure activity.
   
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Re: Can Anyone with Epilepsy or a Seizure Disorder Help Me? - August 26th 2012, 11:08 AM

Maybe it is a stress related disorder? What are you doing at the time of the seizure like episodes?
I've had a seizure, loss of consciusness and shaking of my left side and was drooling. It was scary when I lifted my head, I felt so heavy and was like 'what the?' mine happened during a blood test.
   
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Re: Can Anyone with Epilepsy or a Seizure Disorder Help Me? - August 26th 2012, 11:52 AM

Hello! I've got a great understanding of what you're going through. I had this back in 2009. Mine was diagnosed eventually as non-epileptic seizures. Which is a seizure disorder caused by stress. There are a whole host of factors that could trigger off an episode- it's best to keep a diary of them (ask someone to help you if you're unaware) and hand it to your neurologist.

EEGs won't pick up an seizure activity unless you're having one right there and then! Best to suggest you ask for a longer term EEG monitor so it can record your brain activity for a longer period of time in hope of catching an episode. Also, speak to your doctor about your medicine. Some medication works for some and not for others- there are a whole host of drugs out there to be tried.

I hope you manage to catch an episode soon on an EEG but don't give up trying. It's good that your doctors believe you- that can change and sometimes you may have people challenge your symptoms. Don't let them. Keep strong and fight until you get a diagnosis. For me it took 3 months of trying to get it under control. All the best!
   
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Re: Can Anyone with Epilepsy or a Seizure Disorder Help Me? - August 26th 2012, 06:56 PM

How are you managing your seizures now?
   
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Re: Can Anyone with Epilepsy or a Seizure Disorder Help Me? - August 27th 2012, 01:59 PM

For me it's knowing my triggers and avoiding them. I have to recognise when I'm getting over stressed and literally remove myself from the sitatuion and unwind. It's hard and took me a while to get on top of it but I've managed it its hard but keep going! You'll get there
   
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