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Old 02-18-2008, 10:39 AM
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Hello - new member


I am new to this site, and have recently had epilepsy diagnosed - very scared, but in some ways a relief too...finally an explanation for problems I've been living with for a long time (déja vú, auras (smell, taste), flashing lights in peripheral vision, 'hallucinations', lost time, unexplained bumps and bruises...).

neurologist says I have absence, atypical absence, simple partials and has put me on Keppra.

Sorry, not feeling up to saying much at the mo', except for hello and I look forward to getting to know you all over time.

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Old 02-18-2008, 11:46 AM
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Hi Joe, Welcome to CWE.
It is a scary time. My daughter was diagnosed a year ago, though she has tonic clonic seizures (the kind where you fall to the ground and shake) and she is only 16. Last month she had four. They are pretty scary, but they tend to happen at school.

We have tried four meds and they have not worked out for one reason or another. This month we are attempting to be careful with her diet and supplements and so far only one.

I hope you find your way around easily. Holler if you need anything, and know that we have all been through this rough dose of reality, and are here to lend an ear and shoulder.

Take care of yourself.
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Old 02-18-2008, 12:37 PM
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Hey Joe, welcome to the forum.

I always recommend the epilepsy 101 thread for people who are newly diagnosed.

I understand that you may be bummed out right now, but don't fret. Epilepsy is no big deal once you get the seizures under control (and most people with epilepsy do get control eventually).

My wife had excellent results completely eliminating her absence seizures with EEG neurofeedback. I highly recommend it.
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Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback.

Would you like to help support this forum?

We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners.
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Old 02-18-2008, 01:09 PM
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Cool Hello Joe!...


Welcome to the coolest forum on the planet!
Folks are nice here.
All's I can say is keep your stress down...don't let it rule you!
I highly recommend music for that!...especially exploring new music you've never tried before!

Peace
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Music\auditory Stimulus and the Epileptic Brain...List of music/epilepsy related links...CWE Members can also visit Speber's Auditorium where they can vote on how different music affects them in simple polls.
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Old 02-18-2008, 02:13 PM
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hi joe,

welcome to CWE... everyone here is really nice.... btw I have

# Simple Partial (also called Partial Sensory)
# Complex Partial (also called psychomotor or temporal lobe)

the visual 'hallucinations' and lost time I know how scarry that can be.... keep your chin up there is lots of help here...

b6 helps with keppra

also im going to be trying this soon http://www.coping-with-epilepsy.com/...ed-atkins-diet

(((((((((hugs)))))))))

angel
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Last edited by angel; 02-18-2008 at 02:37 PM. Reason: add link
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Old 02-18-2008, 02:26 PM
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Hey Joe.

Welcome. It may be scary now, but believe me, it gets easier the more you learn. Looking forward to getting to know you better.
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"If you are going through hell, keep going."
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Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.
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Old 02-18-2008, 10:16 PM
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Hi Joe! Welcome to the group. It's a pretty friendly bunch. Feel free to ask any questions. There's lots of people here who have alot of info. Again, welcome.
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Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it will become your destiny."

Epilepsy 101
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Old 02-18-2008, 11:53 PM
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Hi joe! I was recently diagnosed as well. I have simple sensory. I'm still unsure as to what all it compasses as I am now learning that things I thought were "normal" could be included. My main thing is that I smell burning and then have what I always thought was a panic attack. I hope the Keppra works for you. I was put on gabapentin. I hope this forum helps you in your journey.
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Old 02-19-2008, 12:14 AM
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Welcome


Hi Joe,
Hope the forum brings you many answers and a warm welcome. Stay Healthy!
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Old 02-19-2008, 07:37 AM
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Thank you all for the warm welcome...feeling a little more at ease...it's good to talk and find a safe place to be...
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Old 02-19-2008, 08:27 AM
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welcome to the fourm.
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When will life be nice and sweet to us with out epilepsy, i think not for a long time i will be allwyas on meds i been told that by my nureo
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Old 02-19-2008, 09:16 AM
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Welcome to your new haven


I am pretty new here as well, but an old dog to epilepsy (26 years). Take the time to educate yourself about epilesy per Bernard's suggestion. It takes away some of that scary unknown feeling when you understand the language and other details.

These moderators and hosts are terrific and truly caring. Along with them, you will find a ton of other friendly people who understand what you are going through.

Take the time to visit some of these forums on Keppra. Don't let it scare you away, because it can be a very effective medicine. I have been on it for 4+ years without a tonic-clonic seizure. I also take Phenytek (dilantin). Pretty heavy doses of both. I want you to be familiar with what you might see with Keppra. It can have side effects, but they are much easier to deal with if you understand them ahead of time. This doesn't mean you will have them, just be aware. I don't plan on changing anytime soon even with the side effects, because it works for me.

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Old 02-21-2008, 12:03 AM
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Joe!

Welcome to CWE, and I can understand
being scared, I get scared too; and I
won't deny it. Epilepsy is hell! Hopefully
Keppra will be a blessing and will work
for you and not be a nightmare.

Welcome aboard and browse around
and there's a lot to learn from here at
CWE!

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