not sure how to title this

[qtowngirl]

200 2x a day. So, same, or you're on 400 2x a day? If so, ouch. It wasn't until the doubling that I got the 'dopamax' thing everyone was talking about.

 

[msuder0583]

same thing with me. 200 the morning 200 in the evening, and yes..dopamax feeling......major feeling..i feel your pain. good thing is i am never hungry, about 6'1 and never get over 170 pounds. but i think the bad effects outweigh the good. what bad side effects you get?

 

[NeuroNotes]

Every since the increase in meds, my spelling,memory,cognitive and recognitive abilities have sucked.

LOL, I can relate. I'm sure this place is a little more forgiving, but I still find myself self-conscious at times because I'm a newbie here. Over the last few years I spent a lot of time rewiring and creating new neural circuity. It can still be challenging sometimes because after a seizure I might have a setback in my progress, but I keep plugging along. Also, I can see a word in my mind but when I type it out, it's a completely different word. I'm also bad at leaving out words in sentences and yet when I proof, I see the word in my minds eye and miss correcting it. I can proof several times, and still miss them. :embarrassed: I've seen a lot of progress so I'm not giving up. Neuroplasticity is where it's at. Also, being able to be proactive about childhood epilepsy, and seizure disorders in general, has been therapeutic for me in more way than one.

In fact, my abiities my have gotten so bad, I went to a psychologist today formy disability they had me doing these tests, like a monkey would do and I was failing them. lol

Mike, I really admire your fortitude and perseverance for going to college and wanting to become a teacher. You have my utmost respect. If the general public only knew how difficult it is for people like us with such challenges. We have to work 3 times as hard, if not more. I especially had challenges when I was in elementary school due to absence seizures and TLE. It did take a while for me to forgive and get over the senseless judgements that adults were so quick to place on me as a child. I was told that I was deliberately not wanting to pay attention, and I did get in a lot of trouble during those years because of that, both by teachers and my parents. They also didn't understand why one day I could ace a test, and fail them the next. I didn't understand either, and I was so frustrated. No matter how much I studied for a test, I might forget it all by the next day. My character was judged, and it caused confusion as a child because I was still trying to get to know myself beyond others perception of me. It is my earnest hope that in future generations (hopefully in one generation), children with seizure disorders won't experience the humiliation and feelings of low self-esteem that stems from a lack of education and empathy in our society.

Below is an Epilepsy education video produced by the Center for Seizure and Epilepsy Education in British Columbia, in partnership with the Canadian Epilepsy Alliance.

http://www.youtube.com/watch?v=<obj...ays" allowfullscreen="true"></embed></object>

I also wanted to mention that I'm glad to read that your school and doctor are assisting you during this time. That is awesome. I really hope your doctor can refer you to another specialist if he doesn't specialize in this area. It will save you a lot of trial and error. Thanks again for being so open and receptive with me, yesterday, and for the friendship.

 

[qtowngirl]

From topamax I never did really get any until the doubling and the 'duh' feeling. But like I mentioned in a post the other day, I think some of the 'duh' has to do with depression as well. Between the two I don't know what the hell to do most days. Keep my mind on my work, try not to be a bawling idiot, and tell myself constantly that it's not going to be like this forever, that it can't be.
I think I have to go back to what we started talking about a few days ago, and like Cint said too, it's highly possible the side effects are coming from a mix of too many drugs, not one drug in particular. That's just too many to bear. How come you feel it's from the topamax, any reason?

 

[msuder0583]

neuro your respnses are so long, sometimes it's so hard to keep concentrated. lol not because i don't find them ineresting but with the T combined with meds I can't stay concentrated for very long. It's not problem as far as the friendshipo, acceptance, etc. Yeah, I know autism is high concentrated on but epilepsy isn't nearly as noticed. People need to understand that our meds can cause alot of problems, and even with out them. I read that each seizure can kill brain cells. Of course, that is not good at all. and yes I think memory is my most major problem. I noticed that today with the pschologist

 

[msuder0583]

qtowngirk =p

I was thinking the Topamax because the side effects didn't really hit me hard until I bumped up the 400 per day. Then again when I bumped up, I was also through on 1500 mg of Keppra. Before that I was solely on 600 mg of Lamictal and I was fine. And from the research and reviews of Topamax it seems I'm not the only ones that are having these problems with it

 

[Cint]

I was addressing Mike, personally. He was very concerned about dementia, and I was only trying to give him a little hope. I was not making the assumption that brain plasticity had not already been discussed on CWE before now. Cint, based on a few of your comments addressed to me, I sense that my texts have been misinterpreted by you, and perhaps others. I had to go back and reread my posts because your post seemed curt in nature. It should be OK to repeat data here (on an individual basis) without being called out on it. So I went through this thread to find out what I might have said to trigger such a response from you. The confusion on my end was that I was addressing Mike, one on one.

I found this:

I wrote:


It was late for me and I was tired when I posted about being surprised. My text could have been worded better. I can understand how that might have been misunderstood. It was not meant to be perceived as the fault of the members of CWE for not recognizing his symptoms by now. We were all trying to do our part in assisting Mike, yesterday. My comment was in reference to the fact that CWE is saturated with a lot of educational posts, with many sharing information about simple partials. My surprise was that Mike had not yet noticed similar symptoms until yesterday. The comment was directed at him, which is why I also thanked him for putting up with my forthrightness ("putting up with me"). I also apologized for assuming that he already knew he had this particular seizure disorder.

Please accept my sincere apologies for any misunderstanding.

I'm still new here and would greatly appreciate your patience and support as we get to know each other better, while learning to cope with epilepsy.

Kindest thoughts,

Victoria

I guess I did misinterpret your posting and sorry if I came across as curt in my response. I forget that some are new here and post things that have been discussed in the past. Your apology is accepted and thank you for putting up with my forthright nature. Sometimes that what TLE does to a person.

 

[msuder0583]

i hear that

 

[qtowngirl]

qtowngirk =p

I was thinking the Topamax because the side effects didn't really hit me hard until I bumped up the 400 per day. Then again when I bumped up, I was also through on 1500 mg of Keppra. Before that I was solely on 600 mg of Lamictal and I was fine. And from the research and reviews of Topamax it seems I'm not the only ones that are having these problems with it

That damn Keppra. I must say I've done a fair bit of reading too and wouldn't touch that *!#*@! either. I guess I'm biased though, I've been on topamax already and didn't mind it, at least for a couple years. Do you find mood problems with keppra, like anger/rage/all over the map, that sort of thing?

 

[msuder0583]

yeah.....hence the kepprage...=)

One minute you will be fine, and then the next minute you just wanna rip someone's hit off. It's terrible. They really don't even have to say anything to you. You just have this built up anger. I'm an an anti-depressant but I think my anti-convulsants are so strong that the anti-deoressants are pretty much useless. If I were you, I'd agree and stay away from keppra

 

[NeuroNotes]

I guess I did misinterpret your posting and sorry if I came across as curt in my response. I forget that some are new here and post things that have been discussed in the past. Your apology is accepted and thank you for putting up with my forthright nature. Sometimes that what TLE does to a person.

Thank you Cint for accepting my apology and for your understanding.

 

[qtowngirl]

Msuder:
Yep... I didn't even give the doc time to start talking about 'this type or that' when I had a breakthrough and had to start a third one. I'm like, 'Not going on Keppra.'
That sounds awful Mike, just awful (sounds like you're comfortable with the name now-pls say so if not). I think there's a whole different life waiting for you if they would just change your med situation. Interestingly enough it's in our hands, not the doctors. Speak your mind and if you don't like what he says/does, seek another. In this game you have to just keep dumping neuros until you find the right one, and then they're a keeper!!

 

[NeuroNotes]

neuro your respnses are so long, sometimes it's so hard to keep concentrated. lol not because i don't find them ineresting but with the T combined with meds I can't stay concentrated for very long. It's not problem as far as the friendshipo, acceptance, etc. Yeah, I know autism is high concentrated on but epilepsy isn't nearly as noticed. People need to understand that our meds can cause alot of problems, and even with out them. I read that each seizure can kill brain cells. Of course, that is not good at all. and yes I think memory is my most major problem. I noticed that today with the pschologist

Thank you for bringing that to my attention. I'll be more aware in future posts. =)

 

[msuder0583]

yeah you can call me mike. yeah im hoping the meds do change by the time i get out of school or even whil i'm in school cause it's making tings real tough, cause it's gonna be a teacher for elementary school students when you're drugged up all the time. and that's a good point that you make that it's in our hand. my dad actually called me today to find a neuro even though i have been going to the same one since i'been diagoned, she just won't drop my meds. it's terrible. oh well. when you had your breakthrough did they just up your current one?

 

[qtowngirl]

Mike,
1st breakthrough: added topamax to tegretol
2nd: doubled topamax
third: added lamotrigine, upping tegretol and getting rid of topamax

 

[msuder0583]

oh so you're not even taking topamax anymore?

 

[qtowngirl]

Will be for a bit here, start ramping down in six weeks or so (slow down on one while getting used to another). Just started the lamotrigine within the past week, this is going to take a while =(

 

[msuder0583]

im on lamictal. it's a great med. i've been on for awhile. but the problem is, you can build build up an immunity to. I started out on 100 and now on 600, so....but the side effects aren't nearly as bad

 

[qtowngirl]

Oooh, that's a big jump. Immunity I don't want. Side effects either, and on that note I don't know that I'll be staying on it anyway - swollen eyes and rash on my arms and back from the first pill. Trying a half dose of that now, it's so small you can't even tell it's in your mouth! God, the times of our lives.
heehee, surprised someone hasn't said 'get a room already you two.'
It's been nice talking to you, made the day easier that's for sure. I have to go now though and get groceries, fun fun. Have a great night.

 

[msuder0583]

nice talking to you as well. if you wanna talk again i'll be around