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Please Help Me: New To Epilepsy

Sat, 02/16/2008 - 00:28
Topic: Living With Epilepsy - Adults
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 plopdan on Sat, 2008-04-05 - 05:48

There is'nt much more than I can add that has'nt already been said.  except don't keep it quiet if you have side effects or it gets worse keep in there there's plenty of people looking out for you.  Remember if your not happy with your doc theres plenty of others.

Good luck and best wishes

plopdan u.k

There is'nt much more than I can add that has'nt already been said.  except don't keep it quiet if you have side effects or it gets worse keep in there there's plenty of people looking out for you.  Remember if your not happy with your doc theres plenty of others.

Good luck and best wishes

plopdan u.k

Re: Please Help Me: New To Epilepsy

Submitted by Orien2 on Mon, 2008-04-07 - 23:34

I'm sorry you are having such a difficult time and welcome to the group.   The first thing they are going to do is an EEG which isn't as scary as it sounds yet isn't much fun.  They glue a bunch of wires to your head and have you do things, flash lights at you and all kinds of things and then expect you to sleep.  I say put them through it  and get them to try to sleep.  Then it's on to the CT or MRI.  The CT isn't that hard just keep your eyes closed if you tend to be nervous in tight places just imagine yourself some where you aren't scared of.  Or if you tend to  get motion sick or confused.  Best thing to do in CT is to close your eyes imagine you are some where else. 

 MRI's are like being nailed inside a drum with an IV in your arm and a guy who is high on PCP banging on it and it will erase your credit cards if you bring them into the chamber.  I'd say ask for some ear plugs and if you are claustraphobic then close your eyes.  They need you to remain motionless for both tests so urinate if you need to before hand because it will take 45 minutes to an hour to complete the test.  I don't know about you but I don't think you want to hold it that long.  You'll need to take off your jewelry, glasses, cellphone and surrender anything like a pocket knife.  

Then if all these tests come back clean then the doctor could order a video EEG.  

I figured if you knew what to expect then it might help you be less scared.  Also you should create an episode diary so you can figure out what is triggering your episodes and you may be able to avoid it.  Good luck and remember you aren't alone in this.  

 

 

I'm sorry you are having such a difficult time and welcome to the group.   The first thing they are going to do is an EEG which isn't as scary as it sounds yet isn't much fun.  They glue a bunch of wires to your head and have you do things, flash lights at you and all kinds of things and then expect you to sleep.  I say put them through it  and get them to try to sleep.  Then it's on to the CT or MRI.  The CT isn't that hard just keep your eyes closed if you tend to be nervous in tight places just imagine yourself some where you aren't scared of.  Or if you tend to  get motion sick or confused.  Best thing to do in CT is to close your eyes imagine you are some where else. 

 MRI's are like being nailed inside a drum with an IV in your arm and a guy who is high on PCP banging on it and it will erase your credit cards if you bring them into the chamber.  I'd say ask for some ear plugs and if you are claustraphobic then close your eyes.  They need you to remain motionless for both tests so urinate if you need to before hand because it will take 45 minutes to an hour to complete the test.  I don't know about you but I don't think you want to hold it that long.  You'll need to take off your jewelry, glasses, cellphone and surrender anything like a pocket knife.  

Then if all these tests come back clean then the doctor could order a video EEG.  

I figured if you knew what to expect then it might help you be less scared.  Also you should create an episode diary so you can figure out what is triggering your episodes and you may be able to avoid it.  Good luck and remember you aren't alone in this.  

 

 

Re: Please Help Me: New To Epilepsy

Submitted by chewie on Wed, 2008-04-23 - 12:28

just another victim of epilepsy, james

   I am also somewhat knew to epilepsy also.  I have auras alot.  I can relate to the super fast speed, in addition though my auras include very loud noise a awful taste in my mouth and my hands shake severly.  when i have an episode I am so scared i just want to drop to the floor curl up in a ball and hide.  Get the feeling that im outside myself and watching what is happening to me.  Im on dilanton wich seems to be an ecellent help aside from it destroying my teeth and gums.  I have found that going into a darkroom with no noise helps me cacth my breathe and focus enough to go to my cave.  A mental hidding spot.  I know it sounds odd but it helps.

just another victim of epilepsy, james

   I am also somewhat knew to epilepsy also.  I have auras alot.  I can relate to the super fast speed, in addition though my auras include very loud noise a awful taste in my mouth and my hands shake severly.  when i have an episode I am so scared i just want to drop to the floor curl up in a ball and hide.  Get the feeling that im outside myself and watching what is happening to me.  Im on dilanton wich seems to be an ecellent help aside from it destroying my teeth and gums.  I have found that going into a darkroom with no noise helps me cacth my breathe and focus enough to go to my cave.  A mental hidding spot.  I know it sounds odd but it helps.

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