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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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kerribookwriter

kerribookwriter

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Hi all,

I'm the new girl here. Writer and editor by day. Mom (day and night). And I've almost reached the 2 year mark of being diagnosed with Epilepsy. A scary thing to live with and a scary thing to cope with.

Some days are better than others. I work really hard not to let it keep me down or keep me from being myself.

The meds are my #1 biggest challenge. Still working on dosages and having major side effects. In fact, I found this forum because I did a random search to see if there were others out there having the same symptoms I'm having.

What a wonderful community you've all created here and I look forward to getting to know you.

Best,
Kerri
 
Hi Kerri, welcome to CWE!

I hope you can get the meds figured out. Which one are you on now?

Best,
Nakamova
 
warm welcome kerribookwriter..

cant beat CWE - my Son of 26 has E...so much to learn here, sharing and true caring..we need each other..u have come to the right place, to feel at home..

we look forward to getting to know u too...
 
Thanks for the welcome, Nakamova.

I'm on Keppra XR now but I've been on 2 others that didn't work out. Hoping this one will work but I'm having trouble adjusting to a larger dosage.
 
Very nice welcome, Chaz. Sorry about your son. Has he had it since childhood?

Nice to chat with others who have "been there done that".

Speak soon,
K.
 
Welcome C.W.E. kerribookwriter. Its a good place with the best people.
 
Hey kerribookwriter, no he diagnosed at 23 after 2nd T/C and EEG confirmed seizure activity, but if we look back now, he had partials when he was young…they can be so easy to miss...
but sure not being beaten with E diagnose...we look to every possible option/alternative out there to avoid med increase and sometimes med increase is the right solution (he takes depakine, low dose for his size)...he living the life of any 26 year old and we ALL staying and keeping positive....
 
Welcome, and I hope you find a good amount of insight from the people here. They know so much and can relate so well. Amazing people, and you will feel a lot less alone in regards to dealing with E.
 
Yes welcome, I have been on Topamax since I was about 40. I started having seizures while I was sleeping. And now just this week starting having just "blank-out starring" I see the Dr. tomorrow. but, just being on the topamax was effecting my memory I am afraid what something else will do or a higher dose..... and why does someone have a seizure at almost 40????
 
Welcome! I also found this while doing a search - though I wasn't diagnosed until April. It's a great community with lots of different experiences :)

Sent from my Vortex using Tapatalk 2
 
Hi Kerri,
I'm also a journalist/editor but in sunny Melbourne, Australia. I run my own freelance business and take occasional contracts in communications roles. I have a gorgeous 10yo daughter. I'm 44 and was diagnosed with this crappy condition eight years ago after a few night seizures and then a tonic clonic. I now only have simple and partial complex szs, which involve me zoning out for anything up to a couple of minutes. I'm on Keppra (1000mg am and pm) and was on Epilim as well. However I zoned out while driving three months ago and had to surrender my licence for at least a year (HORRIBLE!). Thank God I didn't hurt anybody but still HORRIBLE to not have licence.
Dr is weaning me off Epilim and onto Vimpat. I've been on it for three weeks and have had two pretty mild seizures in that time, which is slightly better than usual as I wld usu have one about once a week. Hopefully when I increase Vimpat it will further improve.
It's a really hard condition to cope with and nobody other than fellow people with E can understand, no matter how hard they try. But I do try and remind myself as often as I can that there are many, many, many worse conditions. And I'm also grateful that it's me with it, and not somebody I love as that would be very hard and I admire those who do deal with that.
I'm sure we'll chat ... :)
 
Sorry to hear that, Chaz.

Good for you on staying positive. My 11 yo daughter has had juvenile diabetes since age 2 and I've always been so positive for her. Always wished it was me who suffered instead of her. Now, I have my own demon to deal with.

No one ever said life was easy.

Thanks for the support!

Chaz1 said:
Hey kerribookwriter, no he diagnosed at 23 after 2nd T/C and EEG confirmed seizure activity, but if we look back now, he had partials when he was young…they can be so easy to miss...
but sure not being beaten with E diagnose...we look to every possible option/alternative out there to avoid med increase and sometimes med increase is the right solution (he takes depakine, low dose for his size)...he living the life of any 26 year old and we ALL staying and keeping positive....
Click to expand...
 
I've VERY encouraged by the lovely welcomes and the support thus far, Muay.

Many thanks,
K.

MuayThaiFighter said:
Welcome, and I hope you find a good amount of insight from the people here. They know so much and can relate so well. Amazing people, and you will feel a lot less alone in regards to dealing with E.
Click to expand...
 
Hi Teresal,

Well, I just had a birthday so I won't reveal my age but I will say that I was in my thirties (and totally healthy otherwise) when these hit me like a ton of bricks. So, I feel your pain here.

Best of luck with your doctor visit. Let us know how it goes!

Thanks for the welcome.

Best,
Kerri
teresal said:
Yes welcome, I have been on Topamax since I was about 40. I started having seizures while I was sleeping. And now just this week starting having just "blank-out starring" I see the Dr. tomorrow. but, just being on the topamax was effecting my memory I am afraid what something else will do or a higher dose..... and why does someone have a seizure at almost 40????
Click to expand...
 
Hi RunningGirl,

I was diagnosed in December 2010 but at the time they thought it would be a "one time thing". Guess they were wrong.

The whole treatment things seems like a huge guessing game to me. Hang in there and thanks for the welcome!

Best,
Kerri

RunningGirl85 said:
Welcome! I also found this while doing a search - though I wasn't diagnosed until April. It's a great community with lots of different experiences :)

Sent from my Vortex using Tapatalk 2
Click to expand...
 
Hi AlliOz,

I can't wait to speak with you further. We have a lot in common. The writing/editing to the tween age daughter and a later diagnosis.

All that AND the driving restrictions. Besides the medications side effects and dosage adjustments--the driving restrictions make me crazy. Every time I have a seizure my state requires a 6 months license suspension. This makes life with 3 children beyond tough.

So, I hear ya.

Waves across to Oz!

Best,
Kerri


AlliOz said:
Hi Kerri,
I'm also a journalist/editor but in sunny Melbourne, Australia. I run my own freelance business and take occasional contracts in communications roles. I have a gorgeous 10yo daughter. I'm 44 and was diagnosed with this crappy condition eight years ago after a few night seizures and then a tonic clonic. I now only have simple and partial complex szs, which involve me zoning out for anything up to a couple of minutes. I'm on Keppra (1000mg am and pm) and was on Epilim as well. However I zoned out while driving three months ago and had to surrender my licence for at least a year (HORRIBLE!). Thank God I didn't hurt anybody but still HORRIBLE to not have licence.
Dr is weaning me off Epilim and onto Vimpat. I've been on it for three weeks and have had two pretty mild seizures in that time, which is slightly better than usual as I wld usu have one about once a week. Hopefully when I increase Vimpat it will further improve.
It's a really hard condition to cope with and nobody other than fellow people with E can understand, no matter how hard they try. But I do try and remind myself as often as I can that there are many, many, many worse conditions. And I'm also grateful that it's me with it, and not somebody I love as that would be very hard and I admire those who do deal with that.
I'm sure we'll chat ... :)
Click to expand...
 
Hi Keri,
Welcome to CWE.

I think you will find this forum to be such a help. I've learned so much here.
 
I haven't been on for some time and just saw your post. I just thought how amazing you are! Here I am still not use to this... the meds. I don't know if thats part of the depression or not driving or being 50 now.... all I know is it sucks! you just have suck a great attitude! I so need that!
 
Welcome Kerribookwriter!

You have found an amazing community of caring and knowledgeable members.
Feel free to ask any question. It is likely someone here has some experience and will help.

My daughter is on 1500 keppra XR. She hates it. How do you feel, if you don't mind me asking....

Tom
 
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