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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 jimbyjoe on Mon, 2008-02-18 - 22:06

hi there

i'm sorry to hear about your recent onset of epilepsy - though there is definitely help. The only advice for now I can offer is what banffgirl did - find a GOOD neurologist and let them take care of you. I'm not sure how the public vs private health system works in the US, though in Australia I have had one from both sectors. I know the public system is there to provide for the community (here it is free), but my teenage epilepsy didn't get any better under the public system Neurologist. After switching to a private neurologist (A/Prof Cecille Lander, for those in Brisbane), my life started to turn around. It cost my parents a bit at the time but it was definitely worth it.

I didn't need any contact with her until 2 years ago when I had a seizure after 10 years of not having any. Once again she helped put my life back on track, ie sleep, diet etc - but that's another story.

 So I encourage you to try and get a good neurologist who knows what they're talking about and trust them.

k

hi there

i'm sorry to hear about your recent onset of epilepsy - though there is definitely help. The only advice for now I can offer is what banffgirl did - find a GOOD neurologist and let them take care of you. I'm not sure how the public vs private health system works in the US, though in Australia I have had one from both sectors. I know the public system is there to provide for the community (here it is free), but my teenage epilepsy didn't get any better under the public system Neurologist. After switching to a private neurologist (A/Prof Cecille Lander, for those in Brisbane), my life started to turn around. It cost my parents a bit at the time but it was definitely worth it.

I didn't need any contact with her until 2 years ago when I had a seizure after 10 years of not having any. Once again she helped put my life back on track, ie sleep, diet etc - but that's another story.

 So I encourage you to try and get a good neurologist who knows what they're talking about and trust them.

k

Re: Please Help Me: New To Epilepsy

Submitted by just sam on Sat, 2008-02-16 - 20:10
I know it must be so frightening. Hopefully, the medication will start to get these episodes under control.  I also believe that what you are describing are seizures and finding the right medication is really trial and error. The fact that you do not lose consciousness indicates that these are probably simple partial seizures.  You also mention that you can see your entire body in superfast speed.  Many times, people who have these seizures have out of body experiences, yet their sense of awareness remains intact.  This sounds similiar to what you are describing.  Have you had an EEG done yet?  If so, was there anything showing on the temporal lobe?  Just curious as it sounds very similar to things I've gone through the past year.  If it's any consolation, I'm also on Topamax and it's controlling the seizures very well.  You just need to get to the right dosage first.  Just to note, Topamax can make concentrating even more difficult so just be aware of that.  The other thing I found is that Topamax did not make me tired like other drugs did, so that's a huge plus.  Hang in there and keep in touch.

Re: Please Help Me: New To Epilepsy

Submitted by norma on Sat, 2008-02-16 - 22:51
I understand what you are going  through and the symptoms you described are a little like mine. I was diagnosed with psychogenic non-epileptic attacks after being sent to a hospital who deals w/ seizures and they video taped all the seizures I had for a week and then gave me output when they had enough information to go on. I was on alot of medication like keppra and topamax and this hospital took all  meds away to see what the cause was finding out the seizures I have are caused by stress and past events that had happened in my life. It got worse after my mom died at 61 yrs old four yrs. ago and thats when my seizures got out of control. Topamax is very good for migraines too. So where both new to this but I hope I helped a little on your concerns.

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