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  #1  
Old 11-19-2009, 04:01 PM
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Update - looking at possible brain surgery


Hi all

Haven't been on here much lately. I been away alot over the last few months. I went away on a holiday for 10 days in October. My parents recently took my Nanna on a holiday for 10 days. While my parents were away I house sat & looked after their menagerie of animals (dog, chooks, bunnies & goats) lol.

I am still taking turns, they are only the smaller turns but happen to often. I saw my neurologist in August & he increased my Keppra so I am now on the highest level of Keppra.

After the Keppra increase I still took turns, all up I took 10 turns between September - November. One of the turns I took I was in a shopping mall & went into a shop while having the turn & don't remember even going into the shop, another turn was just embarrising & the other turns were only smaller turns.

I went & saw my neurologist on Tuesday & he has put me on Neurontin. My neurologist said that the MRIs I have had in the past showed I have scarring on the left side of my brain which was probably caused by the seizures I took as a baby. He told me that because of the scarring on my brain & the fact the anti epilepsy drugs arent controlling my seizures I may be a candidate for brain surgery.

My neurolgoist explained to me that I have to go see another neurologist in Melbourne who will go through my MRI films & epilepsy history. After I've seen the neurologist in Melbourne I will go into hospital to have a serious of tests then it will be decided if I am a candidate for brain surgery.

The neurologist I have to see in Melbourne is 1 of the best neurologists in Melbourne & I can't get in to see him until June next year. I am assuming that I wont be able to have the tests done until late next year & if I do have the surgery it won't be for a couple of years.

I'm not scared about the thought that I might have surgery & have already done some research about the surgey.

Last edited by CQ:); 11-19-2009 at 04:40 PM.
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Old 11-19-2009, 10:33 PM
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Hi CQ - great to hear from you.
Sorry that the meds aren't working for you.
Did you see the video that I found that proves that you can retrain your brain? I will post it below in the event that you were busy and missed it.

http://www.coping-with-epilepsy.com/...s-itself-6968/

Thanks for checkin' in. We missed you.
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Old 11-20-2009, 01:11 AM
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Hi Robin,

I went to check that video you posted but it didn't work. It just went to a different story.

I found something simular on you tube so when I get a chance I'll have a look.
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Old 11-20-2009, 07:05 AM
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Great to hear from you CQ.

Sorry to hear that your seizure activity is occurring unabated. Brain surgery has a pretty strong track record for short term success.

While you are waiting for your appointment and testing in 2010, perhaps it's time to experiment with diet, neurobehavioral techniques or neurofeedback?
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Old 11-20-2009, 12:08 PM
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Perhaps this is why CQ

Quote :
We are currently experiencing some problems with our video player. Our tech department is working on a solution. Our apologies and thanks from watching!
Please note: Full length films are only available from within Canada.
I will check on it again later
These articles might be useful:

http://boingboing.net/2009/06/10/the...hat-chang.html

http://www.normandoidge.com/normandoidge/MAIN.html
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Last edited by RobinN; 11-20-2009 at 12:11 PM.
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Old 11-20-2009, 02:17 PM
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Hi Bernard,

Thanks for the suggestions. I'll have a read of the link & take a look into them.

I am not any of the diets that you have suggested but have cut out a lot of food. Once in a while I do treat myself to takeaway or chocolate/icecream.
I am going to be stronger & try to cut them out completey & now Summer is almost here it's back to fresh fruit,vegies & salads.

I did see that a side effect of the neurontin is weight increase, does anyone know is that because you get an urge to eat more which causes you to put on the weight?

I am seeing an epilepsy educator next month, I'll see if they can help me & what other ideas they have to control the seizures.
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Old 11-20-2009, 02:22 PM
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Originally Posted by RobinN View Post:
Perhaps this is why CQ



I will check on it again later
These articles might be useful:

http://boingboing.net/2009/06/10/the...hat-chang.html

http://www.normandoidge.com/normandoidge/MAIN.html
Thanks for that Robin
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Old 11-20-2009, 02:28 PM
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I don't know about neurontin, but I've gained weight on Lamictal. And it definitely seems to come from a craving for food (especially salt) in the evenings.
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Old 11-20-2009, 02:52 PM
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Originally Posted by Nakamova View Post:
I don't know about neurontin, but I've gained weight on Lamictal. And it definitely seems to come from a craving for food (especially salt) in the evenings.
Hi Nakamova,

I was on Lamictal 2004 - 2006 & I can't remember if I gained weight from it. When I was on the Lamictal I didn't have a healthy diet & was already overweight.

I have since changed my diet & don't have any fatty foods & don't add salt, sugar or margarine to my food. I am still working on what other things I can cut out so i can maintain my current weight.
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Old 11-20-2009, 03:06 PM
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I need to aim for your level of self-discipline with my diet
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Old 11-20-2009, 03:31 PM
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Originally Posted by Nakamova View Post:
I need to aim for your level of self-discipline with my diet
I think it is hard to change diet but the main reason I changed mine was because I thought fried food was causing me to have turns. Alot of the foods I used to really enjoy eating I don't like anymore .

I can go without fried food, choclate bars & soft drinks but I still like ice cream .
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Old 11-21-2009, 10:58 AM
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Oh, CQ


I am sorry to hear of the problems....I wish things were a bit better for you, but hopefully the neurologist in Melbourne can give you some more insight.

I think you're on the right track with taking different foods out of your diet. I know it made all the difference in the world when I changed my diet, in the control and number of my seizures....

Have you considered using one of the actual diets? I know it's hard...trust me, I know.......but it could be worth it...

We'll be here for ya, CQ, no matter what.

Take care!!

Meetz

Last edited by Meetz1064; 11-23-2009 at 01:24 AM.
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Old 11-21-2009, 03:37 PM
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Originally Posted by Meetz1064 View Post:
I am sorry to hear of the problems....I wish things were a bit better for you, but hopefully the neurologist in Melbourne can give you some more insight.

I think you're on the right track with taking different foods out of your diet. I know it made all the difference in the world when I changed my diet, in the control and number of my seizures....

Have you considered using one of the actual diets? I know it's hard...trust me, I know.......but it could be worth it...

We'll be here for y, CQ, no matter what.

Take care!!

Meetz
Thanks Meetz

Last year I looked at the different diets but decided not to try any of the diets. I have found it easier to work by my own diet & gradualy reduce different foods.

I usually try to have a positive attittude about my epilepsy & remind myself that I should be greatful I only take partial seizures or auras.
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Old 11-23-2009, 01:25 AM
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:)


That's cool, too, CQ! We'll still be rooting for ya, though!!
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Old 11-23-2009, 08:12 AM
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Rooting for you here too CQ. Wow, a 7-8 month wait to see a doctor. He muct be good. However, when it comes to brain surgery, you will want the BEST.

Keep us updated.
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Old 11-28-2009, 10:26 AM
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CQ, I also want to extend the best of luck to you.
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Old 11-28-2009, 02:42 PM
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Thanks everyone

The specialist I have to see in June is a top leading neurologist in his area which is why it is long to get in to see him.
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Old 02-09-2010, 03:01 PM
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Hi all

Thought I'd touch base with how things are going for me.

It is still 4 months until I go see the epilepsy Neurologist in Melbourne but I'm sure it will come soon enough.

I have been on Neurontin since November but I am still taking smaller turns usually about once a month.

I've recently started going to the gym to use the gym equipment. I've only been the once so far & was going to go back this week. I have a mild case of vertigo at the moment so thought it was best until I get rid of the dizzeness before I go back to the gym.

Since December I've been seeing an epilepsy educator who I've met up with a couple of times. The epilepsy educator has been good, explaining whats involved with the lead up to the brain surgery (if I am a candidate) & giving me some information for my health.

The epilepsy educator has also been telling me how there are opportunities for people with epilepsy to go on different trips. She was telling me how they have a weekend trip coming up in April & it will be ladies with epilepsy, most of which are around my age group.

In March I am going to be doing 4 - 5 weeks casual work . I'm going to be helping out my chiropractor, filling in for his regular chiro assistant who is going away for a month. I have helped out at this chiropractors before so I'm not to worried about the work. It is fairly easy work & stress free, it might get tiring at times but I'll worry about that later lol.

Will post again in another couple of months
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Old 02-09-2010, 03:09 PM
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Thanks for checking in, it's always good to hear from you.

Good luck at the gym. It took going to the gym 4 times a week for over 6 months but it lessened my seizures and my moods were much more stable. I also felt like my cognitive processing was faster but that can be hard to confirm as it's all my perception of myself.

If you're feeling vertigos you're smart not to go to the gym but maybe you should go for a walk or do something physical. I would think getting the blood flowing properly might help that.
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Old 02-10-2010, 12:56 AM
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Hi Eric

When I went to the gym I decided not to get a membership mainly because its to expensve so I just pay as I go. Because I am on a tight budget I can only afford to go once a fortnight.

I know it's probably not enough going once a fortnight but I think of it as something different to walking lol.

Its Summer here & has been very over the last 2 months so I am not walking as much as I used to. As soon as it cools down I intend to go walking a bit more.

The chiro where I will be working is in the next town to me. I have decided that I will walk to the chiro in the mornings which is a nice 40 min walk. I finish at 6pm & don't like walking home at night so I will have to get a lift home from a friend.
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