"hello" from a new member!

tabbycat

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i found this forum yesterday when trying to find info on epilepsy. i must say it seems like a good place! i suppose this is where i should introduce myself. i'm a bit (understatement of the year) sad/worried/nervous/ashamed/angry because it seems like i had a seizure on friday, for the first time in 10 years. so this is why i need to get some info on epilepsy and i need to accept the fact that i've got it (back). it started in 1996 and i got tegretol in 1997. no seizures or seizure-like thingies since 1999 so in 2006 my doctor suggested we try to remove the medicine. from dec 06/jan 07 i started experiencing some things that was new to me, still do. so because of that i booked an apppointment for a check up. more to rule out epilepsy. but this was before the seizure on friday. the good thing is that i've got an appointment in 2 weeks time. don't want to bore you with too much information just yet! /tabbycat - 37 y.o. in sweden.
 

epileric

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Welcome to CWE

Glad you like this place. I've got to say that I've found the people here very supportive as well as informative.

I think you're so lucky to have had your first seizure in 10 years. I was born with mine & I think my record for going without them is about a week. Funny how when I got a seizure after a week I was upset to have had it rather than happy to have made my new record. I can only imagine how you feel after 10 years of being seizure free.

I'm also on Tegretol & even though it doesn't fully control my epilepsy it does a better job than anything we've found yet.

There are other alternatives you might want to look into. The one that interests me the most is Neurofeedback even though I can't afford it yet. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Also you might want to look at your sleep habits, eating habits & stress levels to see if you can figure out what triggered this seizure after not having any for so long. I keep track of all those things every day. It's helped a bit but I'm still looking for my triggers.

Meanwhile make yourself at home & I'm sure everyone will drop by to say "hi" soon. They're a great crowd.

Eric
 

tabbycat

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thanks for your response! i think that's so true - but i didn't see it myself; that i'm lucky to have been seizure-free for such a long time. i can choose to focus on that instead! after all, there's been a bad few seconds in ten years. (when it comes to epilepsy, if these other things i experience is epilepsy as well at least it hasn't bothered me too much.) it hasn't been a bad ten year period. i need to change perspective!

thanks also for the neurofeedback-info! apparently there's a place in my town who works with it.

sleep/eat/stress - yes i'm working on that! thing is i'm much less stressed at the moment than i have been in the past.

thanks again!
 

RobinN

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Hi and Welcome to CWE

It could have been that you came off the med far too quickly for your body to handle. You did get use to the med in your system if you have been on it for 10 years. I know when my daughter came off of a med, I made it much slower than what the neurologist recommended. I could tell her body needed that.

Nutritional changes have made the largest improvement for her, as has neurofeedback.
I hope you find information here that is useful to your situation.
 

tabbycat

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hi! it took nearly 8 months to come off the tegretol, and that's over two years ago now. i agree with you, surely it must affect the brain/body to use medicin (no matter what kind of "drug") for such a long period of time. especially a medicine for something in the brain itself! i read somewhere on the internet that if one gets epilepsy as an adult + try to remove medicine and the seizures come back it's not worth trying to remove the medicines again later on. sigh. i guess i have to come to terms with this...!
 

dfwtexas

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Hi, welcome to our group. I don't recall us having any members in Sweden. I found this place last year when I started having seizures at age 47. I was searching for a place to learn more and this place was the best I found. It is a real mix of people with E and family members/friends of people with E. All types of seizures are within the mix so it is easy to find others with similar experiences to share.
Glad to hear you have an appointment, be sure to let us know what they say. Stress and sleep issues are big triggers for me. Start a journal to see if you can determine your triggers and it will be helpful to your doctor.
Jennifer
 

skillefer

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hi tabby! Welcome to CWE. :) As you can see, a friendly bunch. :) If you have any history of diabetes in your family at all, or if you know you really like starches and sweets, ask your doc to do a blood sugar test too. Low blood sugar can trigger seizures also. And in the meantime, stay away from caffeine in all forms (tea, coffee, sodas, energy drinks, mate, etc...) as well as OTC meds for flu, cold, and allergies. (antihistamines and decongestants can also trigger seizures) Hope this helped..and welcome to the group. :)
 

Meetz1064

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Hello there

and it's nice to meet you! Welcome to CWE!

You'll surely find lots of new friends here, and plenty of information, too. If you can't find it here, ask, and we will try to point you in the right direction to find the answer to your question.

Do start a journal--it will help you track your triggers, and figure out if there are any foods that you need to cut out, etc. Sleep patterns should be included in it, too as well as how much time you spend watching TV and on the computer or playing video games. Keep an eye on the MSG intake--it is a neurotoxin, and can be trigger also.

Good luck, and take care!

Meetz
:rock:
 

tabbycat

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thanks for your response! it feels so much better in just a couple of days since i found this place! i must ask if there's a way of replying to more than one persons post at a time? i will definitely keep a journal of what i do and what happens!
 
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welcome! you are among friends

Hi Tabbycat,
I had a seizure at the age of 4 and not again until age 16. At that time I was placed on Tegretol and have been Tegretol ever since. I have tried, too, to come off the medicine but I cannot. I agree with the others, keep a diary of meals, sleep pattterns, stress, etc. My seizures are triggered by stress and/or lack of sleep.

Enjoy your time here. We all know what most can only imagine. We are here for your shoulder and there's always someone here 24/7.

WELCOME!:woot:
 

tabbycat

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time to update! i went to the neurologist today and in his mind there is no doubt that i have partial seizures (simple i presume, since my consciousness isn't affected). same as before... he gave me lamictal instead of tegretol. tegretol was just fine for me so i hope this medicine will take care of the seizures as well. i'm a bit anxious about starting taking it though since it's new for me. oh well. a bit annoying that the "seizure-like-thingies" i mentioned IS epilepsy and i've been having them far more often that necessary the past two years. (i consulted my former neurologist about them and she said, on the phone, that she didn't think it was epilepsy.)
 

rufaba

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Hello.. I just find this place today... soo.. even when I'm new too .... welcome..!
I got a dislocate & broken shoulder due to a seizure on June 4th.
I didn't have a seizure since my first one 8 ys ago... I reduce my Keppra and Bang..! got it back.....! so... here I'm trying to find some answer to my questions...
anyway .. good luck...

Rufaba
 
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