goodbye epilepsy!!!

qtowngirl

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thanks darlin' that means alot :) lol bolding 'the last vimpat day!' made me laugh, so cute and such great support!
i'm not surprised you're not a fan of it :( the first time i tried it i went off after 10 days, my body was like wtf is this? didn't mentally recognize myself and it stressed me out; stress is a big seiz-cause for me so bam! done. give yourself a bit more time, sometimes the beginning effects wear out. doctors have to get it through their heads tho that it's up to US. fingers crossed for you my dear, let me know how it goes. HUGS!!
 
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Congrats on 60 days, qtowngirl!! Keep hitting those milestones, rockstar! :rock:
 

Juju26

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I'm only 7 months into having epilepsy and you are making me very jealous, but still...

CONGRATULATIONS!!!!!

Hopefully, one day, I will be where you are, epilepsy free and living life to the fullest, but until then, I will continue living my life.....to the fullest.

I may "still" have epilepsy, but epilepsy will not have me.
 

qtowngirl

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hi juju :) and thanks for the congrats! trust me tho you don't want to be jealous of me; epilepsy almost 20 years and fresh out of brain surgery... i wish the opposite of that type of life for anyone.
we always need to keep in mind (even if it's way at the back) that 'epilepsy-free' isn't really the case. seizure-free may be the luck, but we still have epilepsy, entirely b/c it's incurable. opting for brain surgery is our way of hoping to make the best of it, and that if we stop having seizures, the lifestyle that brings will last as long as possible.

it is a great frame of mind you have re: 'epilepsy not having you,' that is half the battle and it's admirable for those who can get on that way. i wasn't always able, but now that i risked my life to the 10th degree my thoughts have started to glance down that path.
best of luck to you ;)
 

Nakamova

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Whoohoo! Now it's 61 days and counting, right qtg? So awesome! Even better than the Red Sox' "worst-to-first" season. And I don't say that lightly. :)
 

sunflower

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Q- that is so awesome that the surgery has been successful for you. I'm headed into an E.M.U. in Feb (which totally freaks me out) and I'm concerned about the road from there. How did they determine your eligibility? Were you nervous after stopping your medicine completely? I feel as though I would be constantly worried about having another seizure and, as I'm sure you know, stress is so not good! I suppose I shouldn't worry too much since I haven't even entered the unit. But just asking. I like reading your posts. :)
 

Belinda5000

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I'm happy for you or anyone that's able to say bye to epilepsy.

Belinda
 

qtowngirl

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Q- that is so awesome that the surgery has been successful for you. I'm headed into an E.M.U. in Feb (which totally freaks me out) and I'm concerned about the road from there. How did they determine your eligibility? Were you nervous after stopping your medicine completely? I feel as though I would be constantly worried about having another seizure and, as I'm sure you know, stress is so not good! I suppose I shouldn't worry too much since I haven't even entered the unit. But just asking. I like reading your posts. :)
thanks my dear, just noticed i never answered this, so tell me all about february! (or did we talk about it in another thread?! haha, blame my hippo that's in some jar somewhere...:))

-they determined my eligibility for surgery due to a lesion (something to remove) and having 3 grand mals in the investigation unit. all together that helped them determine original cause of the lesion as 'cortical dysplasia' (lesion began pre-birth due to abnormal cells).
-haven't stopped meds completely - dropped vimpat after two months (that's as soon as they'd let me), lamotrigine will be in august if i stay seizure-free, and carbamazepine i'm staying on for life for a little reassurance.
-there's basically two different roads to take after a surgery like this (especially if stress is one's seizure trigger). be in a constant state of worry, almost waiting for one or expecting the worst, or, keeping upbeat every day (not always easy but worth the effort x a million).
i'm still at a stage where i write down every day i'm seizure-free in my daily calendar book, ie: today, march 9, i am on day 217 sz-free and my surgery was also 7 months ago today. keeping track of these little milestones (every day is one), helps keep my positivity pretty high. i write '217' with a heart around it or '217!!!' and a happy face...... whatever i'm in the mood to add to my number that day, and lol sometimes i'm so stoked that i'm still on the seizure-free train that i draw both!!

not sure if to a non-brain surg patient if that sounds overboard but it doesn't matter, it truly works and my dear, if you do end up facing surgery you will totally understand. counting the numbers my girl... such a great feeling!

on that note my mel is 320 days sz-free today... in 45 days she has gone one year without a seizure. i am so damn excited for her and so proud :bigsmile:

hugs and love and keep me posted :)
nat.
 

sunflower

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Well, it sure is good to hear how wonderfully you've been doing. A good attitude is the best. It sounds simple, but it really is a powerful tool. I'm so happy your number of days is growing.
February seems so far behind me now. Once again I have followed my personal trend of worrying too much about something over which I have no control. It went just fine. My mom was there and we passed the time as necessary. She told them exactly what would happen. Once the doctors decided to remove my clonazepam I began to have seizures. They captured enough and I was home in a few days.
Really, the most disappointing part was the medical bill. Now I owe a few thousand dollars and I know nothing more than when I entered the unit. The only change has been in medication. I no longer take clonazepam. Now I take zonisamide. I had never heard of it. Do you know it? Everything was going fine until two nights ago when I had seizures in the middle of the night and again in the morning. Fail.
I had stopped using this site. I'm not sure why. I should pick back up. I don't know anyone else with this problem and it's nice to connect. I truly hope you've continued to progress. I remember counting the days when I was younger, but as an adult there have not been enough seizure-free days to discontinue medications. I wish happiness to you and yours!
 
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