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sindy25

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Hi my name is sindy,I had a granmal seziure on the 8th of october and have been learning that all the other things that have happened over the years have been seziures to. The doctor says i have a seziure disorder and started me on keppra today. Im scared and dont know what to expect cause this is all so new. the seziures seem to be more frequent now then they ever were before and most of them i dont rember having so there is all these holes like missing time in my days now. i found this website while looking up the medicine they put me on. thought maybe it would help and i wouldnt feel so alone and lost.
 

epileric

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Welcome Sindy

Trust me..... you're not the only person with seizures that feels alone & lost. I've had seizures all my life & I'm aware when I have one but it's only recently that I've learned that I black out for part of it & don't remember anything.

Keppra can have some pretty bad side-effects. When I took it I had to really focus just to read one sentence and couldn't read a 2nd sentence without forgetting the first. I was also very moody, depressed & angry.

Those seem to be common side-effects of Keppra but understand that they may not happen to you. All anti-epileptic drugs have different side-effects but we never know which of them (if any) are going to effect us until we try it. There are also numerous alternative treatments that might help in conjunction to the Keppra (or any drug).

Meanwhile, make yourself at home. The people here are really supportive & have lots of experiences to share. You also might want to check the "library" on this site to look something up or use the "search" option at the top of the page.
 

Nakamova

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Welcome Sindy!

I send a big hug to you. A big tonic-clonic (grand mal) seizure is hard on the system and the psyche, especially if it's the first one. When you're first diagnosed, everything seems strange and scary, and there are a lot of unknowns. But you've come to the right place -- everyone here knows what you are going through, and the collective experience of CWE members is a terrific resource for you to draw upon. You're not alone!

One of the best recommendations I learned on this site is to keep a seizure journal. It can help you "fill in the blanks" and it can also help you keep track of medication, dosages and side effects. It's a great way to track potential seizure triggers as well. If you can record physiological data (like what you've eaten, or if you're unusually tired), you can potentially identify and avoid the things that can lower you seizure threshold. Fatigue is the #1 trigger, but there are other things like diet/metabolism, hormones, stress, flashing lights, etc. that can be triggers as well.

Now that you've started Keppra, it's a good idea to note how it's making you feel, and if it seems to be helping with seizure control. It can take awhile for the body to adapt to anti-seizure meds, so you may need ti to give it some time to get a handle on things. Some people have reported having mood swings on Keppra, and also that taking Vitamin B6 helped with that. If you notice yourself getting unusually moody, angry, or depressed, talk to your doc and consider taking the B6.

Best,
Nakamova
 

Endless

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Hello, Sindy. And welcome!

I was diagnosed about 9 months ago. I felt so scared and alone. I didn't understand what was happening to me, and the effect the meds were having on me. My family and friends couldn't understand what I was feeling, and I felt like I had nowhere to turn.

This forum was a lifesaver for me. People who not only understood and supported me, but educated me, too.

I'm so glad you found us.

I was on Keppra for awhile. Different people do have different side effects. I'm hoping this medication works out for you.

I agree about the importance of a seizure journal. It helped me identify my seizure triggers, to understand that more than half of my seizures are at night, and that my migraines are postictal (after seizures).

Here's a string that gives links to lots of resources and formats for seizure journals:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

Everything is going to be okay. Know we are here with you. <<<big hug>>>
 

Minkels

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Hi Sindy! Welcome to the forum. Sorry to hear about the grand mal, but glad to hear that you have finally been diagnosed and have an answer for all those other events over the years. You won't feel alone here; there are plenty of helpful people here and although I am new here, I can say that I've recieved a great deal of advice and some very helpful answers to my questions.

I am relatively new to this as well; I had 2 grand mals back in June of this year out of nowhere, then continued to have them. I was put on Keppra, then the doctor left town permanently and the new doctor put me on several meds....We have a very limited pool of neurologists here...lol.

Anyhow, I hope that you do well on the Keppra and that it works well in controlling the seizures.
 

Meetz1064

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Hi, hello

and how do you do, Sindy? It's nice to meet you!

Welcome to CWE, and one of the friendliest places to ever be!

LOL, no, I don't always speak in rhyme--it just seems to be coming out this way at the time.

Anyway, Grand Mals, also known as tonic clonics (I abbreviate them as t/c's) are an annoyance. And sometimes problematic if you're injured from them. Please make sure that those around you know how to deal with them properly.

However, being properly informed about seizure first aid doesn't mean that you have to be turned into someone that is like the Boy in the Bubble movie. You can still lead a pretty active, normal life.

There are ways to help yourself manage your seizures in addition to taking your meds to keep your life as normal as possible. Consider things like diet changes--some of us have issues with food allergies that are related to our seizures. Sometimes managing your seizures means wearing a simple pair of glasses to cut down on photosensitivity (if you are photosensitive) or putting a glare screen on your computer.

Learn how to manage stress using various relaxation techniques--yoga is a great one for example--and one of the main known triggers for seizures can lessen in intensity easily.`

Even taking the time to just go for a half hour walk will help, too.

Now, have fun hanging out and kicking back. There's plenty of people for you to meet and make friends with here. Lots of information to find in all the nooks and crannies.

And plenty of fun at the dinner party, here in this AWESOME house that Mr B has built just for us. So welcome, and have fun.

Feel free to rant anytime. We're here to lend an ear, and be a friend.

Now, if someone has some decent coffee? I've burnt it AGAIN........URGGGG.

Take care.

Meetz
:rock:
 

BuckeyeFan

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:cheers:

Welcome Sindy! Come on in and stay awhile. I brought the good coffee. Can never let Meetz make it. :)

:cheers:
 

huskymom

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Hello Sindy!!

Forget the coffee....tastes like burnt water! Have some hot chocolate with carmel, my personal fav! I have been on Keppra for about two years now, and have no big side effects. Just lucky I guess. I do take it in a combination of drugs though....vimpat, carbatrol, keppra and prozac. I am able to work full time and do most things that I want. When I do have a seizure, mostly at night, if I feel totally trashed the next day, I just stay on the couch. I used to feel bad about that, but I am over it now. Nothing you can do. Just one of those things.

Anyway, welcome! It is great to meet you!! :hello:
 

Cint

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Welcome Sindy with an S,

I'm also Cindy. Having a grand mal (tonic clonic)seizure is a very scary thing. I had my first 30 years ago and still have them on occasion, along with complex partials. I've been on Keppra now for 7 years and experience depression along with it so I take zoloft, too.

I hope you have a good neurologist who answers your questions and have a supporting family. We're here to support you. :tup:
 
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Welcome to home away from home (unless your computer is at home...)!

There are so many caring people here that you're sure to find some new friends. ^_^
 
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