Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Please Help Me: New To Epilepsy
Sat, 02/16/2008 - 00:28Comments
Re: not really new to epilepsy but...
Submitted by glowstickclo on Fri, 2008-10-10 - 09:08
hi everyone! its nice to know im not the only one that has epilepsy,
i have six brothers and two sisters and not one of my family has epilepsy apart from me :(
all i remember before i have an epileptic fit is starting to feel really ill in the stomache and my head and eyes go really dizzy, then after a few moments i have black-ed out and hear the soft sound of my mum's voice asking if im okay. im only 15 and currently not had a fit in over 8 months, but as everyone knows : your always worried about the next time you have a fit. i feel really sorry for my family as i cant really have fast flashing lights around me, so at christmas mum has to get the slowest ones possible or the ones that dont flash at all.
thanks fo rreading my little story and i will leave comments on others :)
hi everyone! its nice to know im not the only one that has epilepsy,
i have six brothers and two sisters and not one of my family has epilepsy apart from me :(
all i remember before i have an epileptic fit is starting to feel really ill in the stomache and my head and eyes go really dizzy, then after a few moments i have black-ed out and hear the soft sound of my mum's voice asking if im okay. im only 15 and currently not had a fit in over 8 months, but as everyone knows : your always worried about the next time you have a fit. i feel really sorry for my family as i cant really have fast flashing lights around me, so at christmas mum has to get the slowest ones possible or the ones that dont flash at all.
thanks fo rreading my little story and i will leave comments on others :)
Re: Please Help Me: New To Epilepsy
Submitted by drewmo on Thu, 2008-07-31 - 00:29
Sorry to hear about your troubles... No doubt, you've already read about the many forms of Epilepsy. But just in case you haven't done so already, please see your doctor and insist that you get a full EEG and a conclusive diagnosis from a specialist. There is a possibility that these are non-epileptic seizures (NES or sometimes also called PNES). Don't rule this out as a possible cause, even though many hate the idea of there being no 'physical' cause to the seizures. The only way to be sure is through a thorough EEG or VEEG evaluation. In my case, the AEDs I was taking for TLE actually caused tonic like NES seizures! It took a VEEG evaluation to find that out.
Topamax affects different people in different ways. For some its perfect, for others, the side effects are terrible. If you find trouble with it don't be afraid to go back to the doctor and ask to try something else.
And the advice of not going in the bathroom is very good. You don't want to be locked in somewhere, and certainly not in a confined space with a lot of hard objects if you should seize.
Good luck,
Drewmo
Sorry to hear about your troubles... No doubt, you've already read about the many forms of Epilepsy. But just in case you haven't done so already, please see your doctor and insist that you get a full EEG and a conclusive diagnosis from a specialist. There is a possibility that these are non-epileptic seizures (NES or sometimes also called PNES). Don't rule this out as a possible cause, even though many hate the idea of there being no 'physical' cause to the seizures. The only way to be sure is through a thorough EEG or VEEG evaluation. In my case, the AEDs I was taking for TLE actually caused tonic like NES seizures! It took a VEEG evaluation to find that out.
Topamax affects different people in different ways. For some its perfect, for others, the side effects are terrible. If you find trouble with it don't be afraid to go back to the doctor and ask to try something else.
And the advice of not going in the bathroom is very good. You don't want to be locked in somewhere, and certainly not in a confined space with a lot of hard objects if you should seize.
Good luck,
Drewmo