Almost time

[pita300]

Wow! What great news! I hope you keep reaching those milestones!

 

[CQ:)]

Yesterday I went back to the epilepsy clinic at the hospital for my 2 year post surgery checkup.

The neurologist was really happy with how things are going & we were able to go to the next stage of getting me of Tegretol. He told me that I can stop the AM dosage of the Tegretol & just take the 200mg dosage of Tegretol at night.
I stopped the morning dose of Tegretol Today & so far all is good but usually I don't have any side effects until a couple of days into med change. The neurologist wants me to stay on the night dosage of Tegretol for a month then I can go of the night dosage as well. The neurologist has kept the Keppra at the same dose for now.
I usually allow myself 2 weeks after a medication change for any side effects to happen so am hoping that by mid May I will be on just Keppra with no problems.

Usually when I go to the epilepsy clinic I see the neurologist & the neuropsych back to back but Yesterday I waited about 1 hour after I had seen the neurologist & still hadn't seen the neuropsych. The neuropsych ended up coming out to reception to speak to another neurologist & saw me so called me over. She appologised for keeping me so long but she had something come up & had to leave so wouldn't be able to catch up with me after all but the neurologist had updated her on how I was going.

With the program I was part of to have the surgery you only have to go to the epilepsy clinic for regular checkups for the 1st 2 years after surgery. After the 2 years the neurologist at the clinic & the patient discuss whether the patient keeps going to the clinic or just gos back to their own neurologist.
Yesterday when i saw the neurologist at the epilepsy clinic we were both happy for me to continue going to the clinic to see him but from now on it will be every 12 months. My next appt at the epilepsy clinic is booked for 31st March 2014.

While I was at the hospital I called up to see the epilepsy nurse for a quick chat.

When I was at the epilepsy clinic last September I wore my brain surgery tshirt. Yesterday I wore one of my epilepsy awareness shirts 'Epilepsy is just proof of having a brain. What proof do you have?" which also happened to be purple :roflmao:. The neurologist, neuropsych & epilepsy nurse all loved my shirt & the epilepsy nurse & neurologist joked that they look forward to seeing what shirt I will be wearing when I go back to the clinic next year. I have another epilepsy awareness shirt which I told them I will wear next time lmao.

Because I have been under the care of the specialists at the epilepsy clinic I haven't had to see my local neurologist but the specialists at the clinic always send him & my GP updates on my recovery. The last time I saw my local neurologist was in May 2011 (2 months post surgery) & he asked me to come back 2 years after surgery. I am going to wait until after I come of the Tegretol before I go back to see my own neurologist so will probably make an appt to see him at end of May or June & it will probably just be a courtesy visit to say hi & let him see how I am going.

 

[Nakamova]

That's terrific CQ! You must be so thrilled (to say the least). I hope the Tegretol taper goes smoothly.

 

[qtowngirl]

great news girl! must feel so relieving to keep hitting those big milestones.
very inspirational for those of us who will be having those same appts. so happy for you!!!!

 

[2ndchances]

'Epilepsy is just proof of having a brain. What proof do you have?" which also happened to be purple :roflmao:.

Congrats on the milestone, and for continued freedom from seizures! Love the caption on the shirt, must find one!

 

[CQ:)]

Thanks everyone.

When I saw my epilepsy nurse I said to her that since everything has been going so well since my last visit (my stress levels have been low) then hopefully the neuro would be happy to reduce the Tegretol some more. The epilepsy nurse said she's sure the neuro would look at altering the meds & it will all work out.
The neurologist I see at the epilepsy clinic likes to taper me of my meds slowly, before I went in to see him I thought maybe he would 1/2 the dosages again & have me on 100mg Tegretol AM & PM for little while. So I was really happy when I heard that he wanted to get me of the Tegretol with in the next couple of months.

When I had the Tegretol reduced last year I only had a couple of very minor side effects (mild headache, not much energy & tired) which only hung around for a couple of days. So hopefully if I do get any side effects this time they will only be minor again.

 

[qtowngirl]

yes that shirt is awesome! must have some made for awareness.
i seen a pic here too when i joined, a little smiley with a chunk taken out the top and it says, 'I had brain surgery, what's your excuse?'

:roflmao: yes! 2ndchances if i do have one made i'll get one for you too and send it!!!

 

[pita300]

Thats great news CQ. I've got to fine that shirt. I'd love to wear it around my ex....
I'll be nice :bigsmile:

 

[2ndchances]

:roflmao: yes! 2ndchances if i do have one made i'll get one for you too and send it!!!

I have a friend of mine that prints t-shirts... I had one made today! Purple shirt, with black text. It'll be here in time for surgery! :roflmao: Let me know if you want me to order another!

 

[CQ:)]

i seen a pic here too when i joined, a little smiley with a chunk taken out the top and it says, 'I had brain surgery, what's your excuse?'

I have seen a picture of a shirt online which said 'I had brain surgery, what's your excuse?' . I also saw a picture of a shirt that said 'Brain surgery been there done that' fft:

 

[qtowngirl]

I have a friend of mine that prints t-shirts... I had one made today! Purple shirt, with black text. It'll be here in time for surgery! :roflmao: Let me know if you want me to order another!

awesome!! i will let you know as soon as they confirm a date and then i can have it to wear during recovery

what did your shirt say?

 

[2ndchances]

what did your shirt say?

I had her print what CQ had posted.... "Epilepsy is just proof of having a brain. What proof do you have?" But she can print whatever, and the price was right! (I started on Cafe Press first... glad I thought of this girl!) A nice purple color, with black lettering.

 

[qtowngirl]

oh it love that!!!
just goes to show how smart and unique we are above everyone else. ha!
i think mostly due to our perseverance. never ends ever.

if i can ask what does she charge for a shirt?

 

[CQ:)]

Hi all,
It's been almost 3 weeks since I stopped the morning dosage of Tegretol & I am really happy as I had barely any side effects from the medication change. Only thing I noticed was the 3rd day into the med change I was a little tired at times & went blank for a couple of seconds while serving a customer (forgot what I was doing) & only other side effect I noticed was on the 5th day I had a headache for most of the day. I am due to come of the night dosage of Tegretol near the end of the month (approx 23rd April) but I will be away at that time so decided to leave it for a week & wait until I am back home before I come of the night dosage of Tegretol.

I am going on holiday on Tuesday to spend a week with my eldest brother & his family. I don't get to see this brother too often so I'm really looking forward to seeing him & his family. I also hope to catch up with my sister out law (another brothers ex wife) & her 5 boys while I'm away.

I have to go see my local neuro soon so will try to get an appt to see him mid May or early June (by then I should be completely of Tegretol & going fine on just the Keppra).
I noticed that for the last 5 - 6 months that sometimes I stutter, it isn't a bad stutter & doesn't happen to often but I was curious if it was related to the epilepsy. I forgot to ask the neuro at the epilepsy clinic about the stutter when I saw him last month. I mentioned the stutter to my neuropsych in an email I sent her the other week, I assured her I wasn't concerned about the stutter but asked if I should mention it to my local neuro when I see him. My neuropsych replied that she wasn't sure what the stutter was due to, suggested I monitor it & agreed that even though it is probably nothing to worry about I should mention it to my local neuro when I go to see him.
I'm sure the stutter is nothing but since I tend to over analyse things I figured I may as well get it checked out when I see the neuro just to put my own mind at ease lol.

 

[Nakamova]

Do mention the stuttering to you neuro -- it might just be some sort of minor after-effect of the surgery, particularly since it's a relatively new behavior. The neuro may be able to distinguish what you're experiencing from the more familiar developmental stuttering (the kind shown in the movie The King's Speech). Certain details (like whether it always occurs at the beginning of a word) can suggest what's behind it. At any rate, it sounds like it's not a big deal, which is great!

It's terrific to hear that the Tegretol taper is going well. I think you're wise to hold off on the last step until you get back from your holiday. I hope you have a wonderful, relaxing time!

 

[CQ:)]

It's terrific to hear that the Tegretol taper is going well. I think you're wise to hold off on the last step until you get back from your holiday. I hope you have a wonderful, relaxing time!

Thanks Nak,
The last thing I want to do is to be messing with my meds while I am away which is why I'd rather wait that extra week before I came of my night dosage of Tegretol. I emailed my neuropsych to let her know that I decided to stay on the night dosage until I am back home. She agreed that it was best thing to do & she knew my neuro (at the clinic) would be supportive of my decision to wait that extra week until I came of the Tegretol.

Do mention the stuttering to you neuro -- it might just be some sort of minor after-effect of the surgery, particularly since it's a relatively new behavior. The neuro may be able to distinguish what you're experiencing from the more familiar developmental stuttering (the kind shown in the movie The King's Speech). Certain details (like whether it always occurs at the beginning of a word) can suggest what's behind it. At any rate, it sounds like it's not a big deal, which is great!

I've never seen the movie The King's Speech lol.
The stuttering doesn't seem to happen to often so im not to concerned about it. I tried to pin point a reason why I stutter, eg - was it related to the epilepsy/ meds or because i don't always sleep well. My Mum used to have a bad stutter when she was growing up, she barely stutters now so don't know if there is a link there.

I know I'm most likely to forget all about the stuttering when I see my local neuro so I've printed of the email correspondence my neuropsych & I had about the stuttering so I can show my neuro lol.

 

[CQ:)]

Hi all,
It's been 3 weeks since I stopped my last dosage of Tegretol & happy to say I am going really well on just Keppra. This was the best outcome I've had when it came to side effects as the only issues 4 days after I came of the Tegretol I had a bad headache which didn't go away until the day after & 3 days after that I had a mild headache & didn't feel very well for some of the day.

I saw my local neurologist Today, the last time I saw him was 2 years ago but he was up to date with my progress as he gets regular reports from the neurologist/neuropsych at the epilepsy clinic. My neurologist here was very happy with how I am going.

I told my neurologist about the stuttering & asked if it was related to the epilepsy. He said It isn't related to the epilepsy & what I have is a functional speech disturbance which usually relates to anxiety & genetic. I told him that my Mum used to have a bad stutter when she was a child & I recently found out that my eldest brother used to stutter when he was little (after I came out of my neuro appt my Mum told me her Dad used to also stutter) so it looks like my stutter is just hereditary.

Because I am going to continue seeing the neurologist at the epilepsy clinic for my follow up appts I don't need to see my neurologist here anymore, but he said that if I have any problems (eg have a seizure) to just give him a call.

So all going well I shouldn't have to see any neurologists until next March .

 

[Nakamova]

Love to hear the continuing good news CQ.

 

[kyrissa]

I just read this, my first surgery is scheduled for May Day! Insertion of intracranial EEG. Second surgery scheduled for May 8. Possibilities of laser surgery, regular resection or possibly implantation of NeuroPace device. My parents call this week week of torture. More of torture for them since I'm not really with it too much. Had an intracranial back in 2006.
I'm really quite excited. I realize there are a lot of risks and the risk that this will not be effective.

 

[kyrissa]

So nervous!! Intracranial EEG surgery tomorrow. Resection next Friday!