Almost time

[Nakamova]

My aunt had essential tremor. It as no big deal, just the occasional hand-shaking. She had to be careful if the she was holding a full cup of coffee, but that was the extent of it.

[CQ:)]

Thanks Robin.
I'll look into the magnesium.

I'm not to worried about these shakes because it has been happening for years & never to bad. I got curious about it because last week both my hands started to shake where usually its only one hand or my leg. When both hands started shaking it was probably more my own fault though because the day it happened I had just been to the post office to collect a large heavy parcel. Instead of using a shopping trolley (shopping cart) I decided it was just as easy to carry this large parcel across the road to where I had to take it.

[CQ:)]

Hi all,

Today is the 1 year anniversary of my surgery & I am now officially 12 months seizure free .

Technically I was 12 months seizure free this February because the last seizure I recorded in my seizure diary was 13th Feb 2011. But I am pretty sure I had at less 1 aura between that time & the 2 weeks leading up to my surgery so wanted to wait until Today before I celebrated my 12 month seizure free anniversary.

Since my last update I have been going really well, still doing my voluntary work & I have been getting the odd bit of casual work at the chiropractor (who I've helped out in the past) just filling in when his regular assistant needs time of.
I'm still looking for permanent work, at 1st I was just looking for part time work but now I am 12 months seizure free I'm ready to look for full time work.

I am also doing a correspondence course - Certificate III Business which is done via the internet. It's pretty good as it's not to hard, I can go at my own pace, I have an assessor who marks all my work & if I get stuck I can just ring or email them for assistance. I have a neighbour who is also very familiar with this course & has offered to help out if I need it .

I am due to go back to the epilepsy clinic on March 26th for my 12 month review with the neurologist & neuropsych. I am expecting this appt is when I'll find out which anti-epileptic drug the neurologist will decide to gradually ease me of

Now that I've reached the 12 month seizure free mark, I'm ready to aim for the 2 year seizure free mark .

[Kaitybugsmom]

Congrats CQ!! This is absolutely FANTASTIC!! Woohoo for you!

[Nakamova]

Pop the champagne CQ! I'm so happy for you!

[alivenwell]

Congrats! Hope this all works out well for the next year. Keep up the brain exercises with the business courses.

[qtowngirl]

CQ I was thinking about you this morning while having the umpteenth 'brain surgery/what do I do/I'm too scared' talk with my bf and I'm like, 'wait, it's March 10th I know someone who just hit their 1-year mark!!'
I'm so happy for you and wanted to come on and say WAY TO GO GIRL... must feel so good... and YOU GOT IT go for your 2 years!!
Lol I'm going to follow you around now to see how you're doing and keep my fingers crossed for ya for next March!!

[CQ:)]

Thanks everyone.

I don't know if aiming for the 2 year seizure free mark is to big of a goal but I figured I may as well see how I go .


I used to talk to a lady who had her brain surgery in November 2010, I had met her 9 days after her surgery. I will admit she was really helpful in the beginning & gave me heaps of tips & advice on the surgery.
This lady had started taking partial seizures again about 8 weeks after her surgery so she assumed I would eventually take seizures again as well. About 3 months after my surgery I was talking to this lady & I told her that I hadn't had seizures yet. I said I wanted to wait until I was 12 months seizure free before I would say the surgery was considered a success & she told me it would be highly unlikely that I would be able to go 12 months seizure free. I guess I proved her wrong . The more we talked the more I found she was comparing us to much & she started coming across as bossy so about 6 months after my surgery I lost contact with her.

I also talk to a lady on an Aussie Epilepsy forum who had right temporal lobe surgery 12 months before me & she was also great with tips & advice lol. She is now 2 years seizure free & is in the process of going through her final medication reduction. She is still on 1 medication which she'll be on for the rest of her life but it's going to be a smaller dose.

I'll be posting an update in 2 weeks after I've been to see the neurologist & know what medication they will gradually take me of. I'm a tiny it nervous about how I will go with coming of the med because this will be the 1st time that I have come of an anti-epileptic drug by itself. In the past every time I've gone of an anti-epileptic drug it has been automatically replace with another med (except for Neurontin but I was taking of that when I had my Video EEG). I'm not trying to worry about it too much though as the epilepsy clinic I go to has a great team of neuros & I know that which ever med they take me of they'll be doing it very slowly.

[Kaitybugsmom]

Proof that each person is different. For you, I hope that we will be congratulating you many more times for many more years!

[CQ:)]

Proof that each person is different. For you, I hope that we will be congratulating you many more times for many more years!

I always say not one person is the same & we all have different stories about our epilepsy.
I don't see the point in comparing myself against other people & assuming what worked or didn't work for me will be the same for someone else.
All we can really do is share our stories, hope that we can all help each other .

[pita300]

CQ Thats great news!! I had a right temporal lobeectomy in the late 80s. I did end up on 1 med for the rest of my life. And that's ok to get my life back. I did start having Auras again. But I went 15 years with out and I'm not ready to call those seizures.their is nothing greater feeling than knowing your 1 step closer to regaining your life back. Best of luck to you!

[maryltyme]

Congratulations!!!! So happy for you. Hope the next year, and the year after that, and after that, and after that, and so on, and so on,.....you get the gist of it, right? May the rest of your long, wonderful and prosperous life be seizure free! I love you jokes : )

[MissSkittles]

Im from Melbourne!
What hospital did you have your surgery at?
I had it at The Austin Hospital??

[CQ:)]

Im from Melbourne!
What hospital did you have your surgery at?
I had it at The Austin Hospital??

Hi Miss Skittles,

I'm from NSW but I also had my surgery at the Austin Hospital.

[CQ:)]

I went back to the epilepsy clinic on Monday for my 12 month check up with the Neurologist & my Neuropsych. I also caught up with the epilepsy nurse for a quick chat & to let her know how I'm going.

Everyone was really happy with my progress, I told the Neurologist, Neuropsych & epilepsy nurse how I'm aiming to go 2 year seizure free now & was a little worried that it was too high of a goal. They all told me that aiming for 2 years seizure free is a good goal & they were confident I will be able to reach the 2 year mark .

I discussed reducing the meds with the Neurologist & we decided to slowly take me of the Tegretol. He has halved my doseage of Tegretol (instead of 400mg twice a day, I'll take 200mg twice a day) & I will stay on this new doseage for 6 months.

I'm allowing myself at less 2 weeks to get used to the new medication doseage. If I do have any problems with the new med change I just need to contact my neuropsych or epilepsy nurse & they will speak to the neurologist then get straight back to me.
I go back to the epilepsy clinic for another checkup in September.

[qtowngirl]

Way to go CQ, that's great news. TWO YEARS here you come!!

[Nakamova]

I hope you feel great on the lower Tegretol dose!

[CQ:)]

Hi all,

It's just over a month since the Neurologist lowered my Tegretol dosage & everything has been going great .

Apart from some very minor side effects when I 1st lowered the Tegretol I have been going well on the new dosage.
The only side effects I had from lowering the Tegretol happened a week into the medication change - for a couple of days I had a niggling headache which hung around all day & for about 4 days I felt like I had no energy to do anything & felt really tired.
I can't complain about these side effects because they were nothing compared to other side effects I've had with medication changes

[Nakamova]

Yay! Keep the good news coming!

[Chaz1]

"aiming to go 2 year seizure free"

gosh thats wonderful to hear, lowered meds and know (by your sharing) you have gone a long way to get here so no easy feat.

But U bring real hope CQ.