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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 banffgirl on Sat, 2008-02-16 - 18:38

i have had e all my life and it has progressively changed as i aged cuz your brain chemicals change is what my neuro told me in my 20s when i started having tonic clonic instead of just abcesce siezures. now 49 i have uncontroled e for the last 5 years though i was told some people it gets better in the 40s, some worse, some stay the same. what you are discribing sounds familar. except i lose my hearing during it, it feels like i am falling fast into a black hole or some thing slowly the sound goes away till there is nothing. and your brain feels all wierd like. then when it goes away the sound wooshs back and i am all dizzyand headachey. i also get what i call brain storms which feel like a electrical storm deep in your brain. have you had eeg or veeg done? now that shows surface brain activity, the deeper in your brain the more the activity is what researchers have found over the last 3 or so years, it might be longer but thats when the articles start that you can find. i would definitely talk to your neuro about this. some say they are psuedo siezures or fake siezures that are not real but your subconsious mind makes them. also you say your doctor believes you have epilepsy, that  another reason why i asked if he ran a eeg, is he a neuro? topamax has symtoms that are hard to get use to. confusion is a big one. if it is interfering with your school work, tell him and ask to switch to something that doesnt effect the brain so bad. ask him if lamictal would work for you since most people i have talked to say they think clearer on it, i spent the last 2 1/2 months being switch to it from zonegran and i can think clearer, though i am still on keppra and they did reduce my kolonopin which slows your thought process. i dont know if any of this helps, but the most important thing is to have a good neuro, the best is a epilepsy specialist neurologist that you trust.  good luck and God bless.

banffgirl 

i have had e all my life and it has progressively changed as i aged cuz your brain chemicals change is what my neuro told me in my 20s when i started having tonic clonic instead of just abcesce siezures. now 49 i have uncontroled e for the last 5 years though i was told some people it gets better in the 40s, some worse, some stay the same. what you are discribing sounds familar. except i lose my hearing during it, it feels like i am falling fast into a black hole or some thing slowly the sound goes away till there is nothing. and your brain feels all wierd like. then when it goes away the sound wooshs back and i am all dizzyand headachey. i also get what i call brain storms which feel like a electrical storm deep in your brain. have you had eeg or veeg done? now that shows surface brain activity, the deeper in your brain the more the activity is what researchers have found over the last 3 or so years, it might be longer but thats when the articles start that you can find. i would definitely talk to your neuro about this. some say they are psuedo siezures or fake siezures that are not real but your subconsious mind makes them. also you say your doctor believes you have epilepsy, that  another reason why i asked if he ran a eeg, is he a neuro? topamax has symtoms that are hard to get use to. confusion is a big one. if it is interfering with your school work, tell him and ask to switch to something that doesnt effect the brain so bad. ask him if lamictal would work for you since most people i have talked to say they think clearer on it, i spent the last 2 1/2 months being switch to it from zonegran and i can think clearer, though i am still on keppra and they did reduce my kolonopin which slows your thought process. i dont know if any of this helps, but the most important thing is to have a good neuro, the best is a epilepsy specialist neurologist that you trust.  good luck and God bless.

banffgirl 

Re: Please Help Me: New To Epilepsy

Submitted by banffgirl on Sat, 2008-02-16 - 18:38

i have had e all my life and it has progressively changed as i aged cuz your brain chemicals change is what my neuro told me in my 20s when i started having tonic clonic instead of just abcesce siezures. now 49 i have uncontroled e for the last 5 years though i was told some people it gets better in the 40s, some worse, some stay the same. what you are discribing sounds familar. except i lose my hearing during it, it feels like i am falling fast into a black hole or some thing slowly the sound goes away till there is nothing. and your brain feels all wierd like. then when it goes away the sound wooshs back and i am all dizzyand headachey. i also get what i call brain storms which feel like a electrical storm deep in your brain. have you had eeg or veeg done? now that shows surface brain activity, the deeper in your brain the more the activity is what researchers have found over the last 3 or so years, it might be longer but thats when the articles start that you can find. i would definitely talk to your neuro about this. some say they are psuedo siezures or fake siezures that are not real but your subconsious mind makes them. also you say your doctor believes you have epilepsy, that  another reason why i asked if he ran a eeg, is he a neuro? topamax has symtoms that are hard to get use to. confusion is a big one. if it is interfering with your school work, tell him and ask to switch to something that doesnt effect the brain so bad. ask him if lamictal would work for you since most people i have talked to say they think clearer on it, i spent the last 2 1/2 months being switch to it from zonegran and i can think clearer, though i am still on keppra and they did reduce my kolonopin which slows your thought process. i dont know if any of this helps, but the most important thing is to have a good neuro, the best is a epilepsy specialist neurologist that you trust.  good luck and God bless.

banffgirl 

i have had e all my life and it has progressively changed as i aged cuz your brain chemicals change is what my neuro told me in my 20s when i started having tonic clonic instead of just abcesce siezures. now 49 i have uncontroled e for the last 5 years though i was told some people it gets better in the 40s, some worse, some stay the same. what you are discribing sounds familar. except i lose my hearing during it, it feels like i am falling fast into a black hole or some thing slowly the sound goes away till there is nothing. and your brain feels all wierd like. then when it goes away the sound wooshs back and i am all dizzyand headachey. i also get what i call brain storms which feel like a electrical storm deep in your brain. have you had eeg or veeg done? now that shows surface brain activity, the deeper in your brain the more the activity is what researchers have found over the last 3 or so years, it might be longer but thats when the articles start that you can find. i would definitely talk to your neuro about this. some say they are psuedo siezures or fake siezures that are not real but your subconsious mind makes them. also you say your doctor believes you have epilepsy, that  another reason why i asked if he ran a eeg, is he a neuro? topamax has symtoms that are hard to get use to. confusion is a big one. if it is interfering with your school work, tell him and ask to switch to something that doesnt effect the brain so bad. ask him if lamictal would work for you since most people i have talked to say they think clearer on it, i spent the last 2 1/2 months being switch to it from zonegran and i can think clearer, though i am still on keppra and they did reduce my kolonopin which slows your thought process. i dont know if any of this helps, but the most important thing is to have a good neuro, the best is a epilepsy specialist neurologist that you trust.  good luck and God bless.

banffgirl 

Re: Please Help Me: New To Epilepsy

Submitted by faith49 on Sat, 2008-02-16 - 20:34

I am about to see about getting a VNS myself. I have had E since I was six. I just turned 48. I cannot help but wonder if your seizures are caused by your hormones I have read that when a woman goes through perimenopuse it can excerbate a medicle condtion she already has. Ask your neurologist whether your seizures are affected by your hormones. The neurologist who treated me for over 30 years thoght I was going into perimenopause well before I learned I was.

Faith49

I am about to see about getting a VNS myself. I have had E since I was six. I just turned 48. I cannot help but wonder if your seizures are caused by your hormones I have read that when a woman goes through perimenopuse it can excerbate a medicle condtion she already has. Ask your neurologist whether your seizures are affected by your hormones. The neurologist who treated me for over 30 years thoght I was going into perimenopause well before I learned I was.

Faith49

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