TELL US YOUR STORY!
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phylisfeinerjohnson posted:
Reply
 
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dancer86442 responded:
Hi Phylis,

I had to go to your site to see what this was about. :) Did you post a link to the Article?

Heads Up everyone/anyone. Phylis would like to try her hand at writing a book. :) :) She would Like to Use Your Story. So, if you have it in Profile & would like your story to be in her book, please let her know. If it ain't in your profile & you want to be included, Tell us your story, here & Now. :)

Phylis, most everything you need to know is in my Profile. You have MY permission to copy/edit/Print! :) Let me know if you wanna add More. :) HUGS!

Hmm! Maybe you could get More stories by Posting your intent on Facebook, too. :)

Love Candi
 
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phylisfeinerjohnson replied to dancer86442's response:
Once again, I tried to post and failed. I don't understand. Sometimes it works and sometimes it doesn't.

If you'd like to share your story, either go to http://epilepsytalk.com/2011/07/22/tell-us-your-story/ or pfjohnson@comcast.net .

All contributions would be most welcome, so we can tell the world our stories. And maybe even educate them a bit.

Thanks in advance.

Phylis Feiner Johnson
www.epilepsytalk.com
 
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pennsygardener responded:
Hi my name is Maxine, I've had Epilepsy since 1981 my very first seizure was in 1980 while I was 7 months pregnant with my first child. At first they thought I had toxemia. My first few seizures were GM's then evolved into complex partials. I, like you, love to write.....Poetry! In recent yrs I haven't been writing, it became increasingly more and more difficult due to concentration and cognitive probs caused by my medication (at the time, tegretol and topamax). I am half way through an education in Interior Design. Stopped by the concentration, cognitive, short term memory and aphasia probs. Right now I work at a Sr Home in the Housekeeping Department.....its a very humbling experience. I'm glad you are still writing.....and hopefully my focus will energize as yours has. Good luck and God bless.
Maxine
 
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reginapu replied to pennsygardener's response:
Hello, Maxine! I'm sorry to hear your sad story. Are you okay now? If you don't mind, can I ask you how much meds you are taking?

I posted my story "postpartum seizures." So if you want to read mine, please take a look at them. I've suffered from postpartum seizures daily. When you found that you had GM at the 1st time and continued to have seizures, what did your doctor say to you? Did he/she say hormone is a main trigger?
 
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pennsygardener replied to reginapu's response:
Hi Regina, thank you for posting. I'm on vimpat 350mg daily and 1600 mg daily. I've had intractable epilepsy for 3 yrs now.
I can only remember four other times since 1980 where I wasn't controlled. Now its hard for me to tell, if it was med toxicity, menopause, or stress that helped cause my spiral downward. At this time we also moved, renovated a house, and took on as landlords to a property. When I first saw a neuro at the age of 21 he put me on phenobarbital (mostly used for children) and never did a blood test!! I ended up seizuring continuelly and was hospitalized, and given a dilantin drip. My second dr., set me up right away with routine b.tsts. but meds had to be changed occasionally. I remember distinctly saying yrs ago...when you go through menopause you'll probably have probls. No Dr. has ever broached the subject of menopause/hormone prob. I see a new dr. next month (Epileptologist) I'm going to bring it up, and ask more Q's bout VNS. How are you? How do you find yourself here, do you or a loved one have Epilepsy? Thanks, Maxine
 
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pennsygardener replied to pennsygardener's response:
PS 1600 mg of Tegretol.
 
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reginapu replied to pennsygardener's response:
Hello Maxine! Yes, I've had intractable partial seizures daily after giving my daughter birth. Now, I'm switching meds again (Lyrica to Zonisamide). I'm taking Carbatrol and Clonazepam as well. Well, It's really hard to go through this situation and to take care of a baby...

You are taking 1600 mg of Tegretol; that's really high doses. Are you tolerating them well?
 
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pennsygardener replied to reginapu's response:
Well for the most part, I tolerate it. I get dble vision, and I'm always tired. Of course I've had saying words backwards for yrs and short term memory probs.....always its definately a pain the A....! Wow...you are on three meds?? It IS hard to take care of a little one, even when you're not on meds!! I hope you and your baby daughter are doing good today. :-)
TTYL
Maxine