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 - 00:28
Well, My doctor believes that I have epilepsy. I am just starting Topamax. I have these "episodes" in the mornings. I usually get my seizures later that night or the next day..or not even at all.  But the last episode I had was so earth shatteringly scary I had to write about it. I'm 20 and I've just started dealing with all this happening. All of this has landed in my lap at once and I am really freaked out. When I had my episode, which I am wondering if it might be an aura, it starts off like static in my head. It sounds like a shovel scraping lightly on a snowy wet pavement. Then I usually lock myself in the bathroom to catch my breath and tell myself that none of this is real. That I need to get a hold of myself. That is when the worst part comes. I see everything including my body in super fast speed. Like everything is a movie being fast forwarded. And I am trying to keep up with it. Usually there is a small part of my brain that I can control and hear and calm until the episode eventually stops, but this time was the first time it disappeared completely until it eventually went faster and faster until I felt like my brain was going to explode and boil. It was so frightening. I had never experienced anything that scary before. Usually I am scared but not like that. Please help me and tell me what you think. All of this is new to me. I've dealt with passing out and shaking all my life, but now it is getting worse and worse and I am very frightened. Plus with being a senior at university it is very difficult being tired and confused all of the time. Thank you for helping and listening.

Comments

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 

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: not really new to epilepsy but...

Submitted by northperth on Sun, 2010-06-06 - 10:31
 You say that you can't have flashing lights around you. What about going out into the hot sun when the sun rays are coming down strong. I have to stay inside. I have had a few Grand Mals because of that. Now I am more aware of it and stay inside.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.