Brain still behaving itself (most of the time) :)

[CQ:)]

Hi all,

Well Tomorrow will be 3 years since my surgery, things seem to be running pretty smoothly at the moment but I still have a couple of things I want to bring up with my Neurologist at the epilepsy clinic when I see him at the end of the month.

The great news is I haven't had any tonic clonics or complex partials since the surgery but I still have the funny feelings in my head, usually I get at less 1 a month but most times I have at less 2 a month.
Most of the time the funny feelings don't affect me as once the strange noise goes away I can get on with with every day life but I have had 2 funny feelings where I have started to write gibberish. The 1st time I sent a friend a private message on FB while I still heard the strange noise & the message ended up being a lot of gibberish, my friend knows about my epilepsy & I've spoken to her while in a seizure so she did panic thinking I had gone goofy (her word for when I used to have seizure). The other time I wrote it in my old seizure journal a few minutes after the funny noise went away & what I wrote was all gibberish with a lot of words that don't even exist.

With the gibberish episodes I joke that I get bored with the English language so decided to create my own language to confuse everyone (even me) fft:. That being said I am still curious about them & I actually think they might be some type of simple partial. Because I don't know what these gibberish episodes are I am waiting until I see the neurologist to discuss them with him before I declare myself seizure free.

Either way I'm not to concerned because these funny feelings are nothing compared to my old seizures & I can still live a normal life which I am very grateful for :banana:.

 

[Cint]

I think it is wise of you not to declare yourself seizure-free yet, especially since you're still having these "funny feelings". Good for you. At least you're not having those CPs nor any TCs. And you're not letting those funny feelings effect your life. :clap: Can't believe it's been three years already!

 

[CQ:)]

Can't believe it's been three years already!

Yep, those 3 years sure have gone fast . I have the day of work Tomorrow as it is a public holiday in the state I work in (Labor day holiday). I was saying to my Dad the other day that it would be my brains 3 year anniversary on the 10th March, he said to me 'how nice of them to have a public holiday for your brain :roflmao:'

I think it is wise of you not to declare yourself seizure-free yet, especially since you're still having these "funny feelings".

I do know alot of these funny feelings occur if I am stressed about something or over tired but there are still some funny feelings I haven't found a trigger for.

When I had the 1st gibberish episode in November I emailed my neuropsych as to me it wasn't normal. She asked me if I noticed the funny feelings have increased since I came of the Tegretol in April last year. I had to look in my seizure diary where I keep record of any funny feelings I have. I realised since June (when I 1st started writing the funny feelings down) I have had at less 1 funny feeling a month (I couldn't remember if I had any in May) where before I came of the Tegretol I was only having them every couple of months, usually when I was over thinking something or was stressed.

When I had that 1st gibberish episode the Neuropsych had spoken to my neurologist & he was happy to see me earlier if I preferred but I decided it was just as easy to wait until March as the funny feelings don't really affect my life (90% of them happen when I'm at home).

I keep my epilepsy nurse & neuropsych up to date with how things are going but I usually only ask them about the funny feelings if I am concerned about them eg the gibberish & when I've had a few funny feelings close together but I write them all down & will be taking a print out of all the funny feelings I've had since June & the gibberish episodes to show the neuro when I see him on the 31st March.
I think I might need a minor adjustment in my meds but of course I won't know what the neuro will decide until I see him in a few weeks.

 

[CQ:)]

I have a few epilepsy/brain surgery shirts all of which I had made up by a family run t-shirt/clothing printing business in Australia.







Because Today was 3 years since my surgery I wore my shirt which says 'Brain surgery, been there done that!'. This afternoon I was at the checkout of the supermarket & just after I paid & was about to walk of a lady behind me told me she liked my shirt. I thanked her. She said that she can relate as she to had brain surgery. I told her that it was 3 years Today since I had my surgery & she said her surgery was 6 years ago. I didn't talk to her long as I didn't wan't to hold the line up plus my parents were waiting so I'm not sure what her surgery was related to or if she had success.

I thought it was a cool coincidence that I happened to bump into a stranger who also had brain surgery :roflmao:.

The last 2 times I have been down to the epilepsy clinic I have worn one of my surgery or epilepsy shirts. When I went down to the clinic for my 18 month checkup I wore my other surgery shirt 'I survived brain surgery & all I got was this lousy shirt' & last year at my 2 year checkup I wore my 'epilepsy is proof of having a brain' shirt. All my specialists at the clinic have complimented on how they love my shirts & last year my neurologist & epilepsy nurse joked that I will have to keep coming to see them at the clinic just so they can see which shirt I have on :roflmao:.

I have already decided that when I go to the epilepsy clinic in a couple of weeks I'll wear the epilepsy shirt which says 'Epilepsy hasn't stopped me living my life' because I feel that it suits me in regards to where I am with my life at the moment .

 

[Nakamova]

Congrats CQ! I hope you had a terrific day. I'm glad that things have been going so well over the last three years.

 

[Fedup]

CQ

It will show you how stupid I am, not realising this. I am glad things are going good for you and I hope they continue to do so. You should get one of your Signature "I know the meaning of LIFE ... Laughter Is Freaking Essential!" it is so true.

 

[CQ:)]

CQ

It will show you how stupid I am, not realising this

Hi Liam,
No idea why you are saying you're stupid but you aren't stupid.

CQ
You should get one of your Signature "I know the meaning of LIFE ... Laughter Is Freaking Essential!" it is so true.

I like that idea, migh have to think about doing it onder:

 

[CQ:)]

I have my appt at the epilepsy clinic on Monday afternoon, in a way I'm looking forward to it as I hope to sort out the funny feelings (mainly the gibberish). Also I always look forward to catching up with the epilepsy nurse & neuropsych who are a huge support.

I live in a country town & the epilepsy clinic is in the city which is a 3 - 4 hour drive each way. I have to get up real early so I can get the 6.30am train to the city which will get me to the city later that morning, I am getting the early night train back home which will get me home by around 10pm.
It will be a long tiring day but definitely worth it as the epilepsy clinic I go to has some of the best neurologists & epiologists working there.

I know I'm going to be exhausted by Monday night so have taken Tuesday of work so I can get some rest & recover from Monday lol.

Another cool thing is I haven't had any funny feelings since end of February so am hoping I can go the whole of March with no funny feelings. Although if I was to have a funny feeling I'd be fine if it happened on Monday while I am chatting to the epilepsy nurse, neuropsych or the neurologist so they can see what happens (usually i have them mainly at home so no witnesses).

Anyway I'll post an update on how it goes

 

[Nakamova]

Good luck! I hope you have a good visit with the neuro and get caught up on your sleep the next day.

 

[CQ:)]

I'm finally getting around to posting an update on how my appts went at the epilepsy clinic on Monday.

When I saw the neurologist we discussed these funny feelings I have been having, he asked me to describe them the best I could & if they were like the auras I had pre surgery. I said they were a little different as the funny noise only started around July last year.

They aren't 100% sure what these funny feelings are but they are thinking they might be auras/simple partials. I'm not to worried if they are seizures because I always thought the funny feelings were epilepsy related & the ones where I wrote gibberish were simple partials.

The neurologist & I discussed medication & we decided to put me back on Tegretol so I am back to taking 200mg Tegretol twice a day along with my Keppra. I have no problems with being back on 2 meds as I was on that combo from March 2012 - April last year & it worked well.

The neurologist wants to monitor these funny feelings & see if they reduce or stop now the Tegretol has been added. I have to email either my neuropsych or Epilepsy nurse in a month to let them know how I am going on the Tegretol & they will let my neurologist know. The neurologist also wants me to go back in 6 months time for another follow up appt.

After I saw the neurologist I saw the neuropsych then went up to have a quick visit with the epilepsy nurse.
When I saw the neuropsych I told her that I've been thinking it might be better to stop setting myself goals of how many years I want to go seizure free & concentrate on other goals which aren't epilepsy related.
She agreed it was a good idea & we chatted more about that, what other goals I have & a few other things.

I managed to go 18 months before my 1st funny feeling but they didn't start to become regular (monthly) until after I was 2 months post surgery & I went almost 3 years before the 1st gibberish episode so I can't complain. Also these funny feelings do not affect my life or my work at all .

Apart from these funny feelings which the neurologists are working on getting under control they were all really pleased with how well I am going & how much I am enjoying my job.

 

[CQ:)]

I started back on Tegretol on the 1st April & had pretty minor side effects.
Only issues I had was sometimes I was a little vague like I was on my own planet (I've had that feeling before during other med changes so wasn't to worried) & there were a couple of times where my memory was more dodgier then usual. These side effects only happened with in the 1st 2 weeks after I started back on Tegretol.

I was going pretty well with no funny feelings but ended up having 1 on Wednesday night (30th April) which was just this strange noise I get. Once the noise was over I waited a few minutes to write it in my journal but when I did write it down it was mainly gibberish.
I'm not too concerned as only having 1 funny feeling for the whole month is pretty good.

I had to email my neuropsych & epilepsy nurse a month after I started back on the Tegretol so they could update my neurologist on how I'm going.
I was going to wait until early May because I wanted to see if I had any funny feelings in April before I emailed them.
I ended up emailing the neuropsych & epilepsy nurse on Wednesday night after I had the funny feeling.

I now just have to continue writing any funny feelings down to show to the neurologist when I see him again but can still contact the neuropsych or epilepsy nurse if I have any other issues/concerns. I do have to go back to see the neurologist around September but the clinic I go to only makes their appts 1 month ahead so have to email the neuropsych or epilepsy nurse around August to get the date of my appt.

So I'm pretty happy with how things are going & will just wait & see now that we have added the Tegretol if the funny feelings will reduce.

 

[Cint]

I started back on Tegretol on the 1st April & had pretty minor side effects.
.......
I was going pretty well with no funny feelings but ended up having 1 on Wednesday night (30th April) which was just this strange noise I get. Once the noise was over I waited a few minutes to write it in my journal but when I did write it down it was mainly gibberish.
...........
I'm not too concerned as only having 1 funny feeling for the whole month is pretty good.

Sorry to hear you experienced that "gibberish" and you had to go back on Tegretol, CQ. But thanks for your wonderful spirit, despite it all! :woot:

So I'm pretty happy with how things are going & will just wait & see now that we have added the Tegretol if the funny feelings will reduce.

Keeping my fingers crossed for you. Let's hope those 'funny feelings' will subside.

 

[CQ:)]

Sorry to hear you experienced that "gibberish" . But thanks for your wonderful spirit, despite it all! :woot:

Thanks Cint,
I've had the gibberish before but it has only happened a couple of times, either while I was heard that strange noise or not long after.
I usually try to see the good side of it & try to work out what it was I even wrote lol. I said to my epilepsy nurse that maybe I should start making up meanings to the strange stuff I write fft:.

I usually get the strange noise when I have these funny feelings, I'm used to it but it's still annoying because although it probably only lasts a couple of minutes it always feels like it is longer.

Sorry you had to go back on Tegretol, CQ.

It's all good Cint, it was nice to be back on 1 epilepsy med even if it was only for 12 months but if adding the Tegretol back will help reduce these funny feelings then I'm fine with that . Apart from the minor side effects I had when I 1st started back on the Tegretol I haven't had any issues.

Keeping my fingers crossed for you. Let's hope those 'funny feelings' will subside.

hopefully eventually I will be able to go that whole calendar month with no funny feelings at all but time will tell.

I'm not going to complain too much because these are just minor issues which we are working on & I can still live a normal life .