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Welcome to the world of Topamax!

Fri, 03/09/2007 - 09:36
Hi All! Well I am new to all of this...new to this community and new to epilepsy. I refer to all it on Super Bowl Sunday Mayhem...kind of silly...but that is when I had my first seizure. I am only 23 and it came out of the blue. The sickest I have ever been is when I had the the flu really bad...I have only spent one night in the hospital when I was little...I had the slightest clue what to do. A month later...including blood work...a CT scan...five more seizures...stroke like symptoms...an EEG...an MRI and SO ON AND SO ON the doctors figured it out. Thank goodness. Anyways...I started my wonderul medication journey as postive as I could on Lamicital but got the one side effect I could---the dreaded rash (that was HORRIBLE and really scary by the way) and was taken off that... Now I am on Topamax. Has anyone gotten numbness in their lips? It is the weirdest thing? I have been reading all the other forums for the past few days about the other tinglings in the hands and feet and have all of that too, not to mention the extreme forgetfulness and memory loss. It doesn't help when you are a journalist and you have to remember words to write stories! HAHA! Luckily I have the most understanding editor in the world with a...um...CRAP...forgot the word...oh...sense of humor....a BIG sense of humor. While I think of the words that I forget...he just sits blankly and says UM UM UM...You can do this...haha. I am only 6 weeks into this new world of epilepsy and medication and any advice or tips anyone can offer would be amazing and greatly appreciated. I know I may not be able to offer profound advice or superb information, but I might be able offer my support! P.S. I am so bummed that my taste buds went from this stuff too...COFFEE...my STAPLE tastes like crap...how are journalists supposed to function without that! haha...(Don't worry, it's decaf!)

Comments

Re: Re: Re: Re: Re: Re: Welcome to the world of Topamax!

Submitted by heathersmithers on Sat, 2007-03-17 - 15:08
Hi Jorge Thanks for the information,,, i will bring it up with my epileptologist on Monday.. i have an appointment with him at the epilepsy unit at the hospital...sigh... most likely due for a med change anyway,,, they seem to like to twist things up every now and then...though im not sure,, as i also have a ms neuro appt. that day as well,, im hoping to start on injection therpy soon so i am not sure if right now is a good time for a med change... Ah well they only have 5 weeks...grin and then im going fishing..lol... again ... thankyou,, if i can go off the carbamazepine,, that will cut the daily intake down by 6 pills a day and for that i would be forever in your debt...smile Heather

Re: Re: Re: Re: Re: Welcome to the world of Topamax!

Submitted by bex on Tue, 2007-03-20 - 13:12
Heather your comments on memory improving are refreshing to hear. I frequently return from places not knowing that I had gone there for something and have lists for everything. Did it affect your concentration and if so has that improved? Also I am definitely going to have to start eating more bananas as I do suffer with daily numbness of fingers and toes! I also went off coffee interestingly! Thanks to all for sharing your experiences.

Re: Re: Re: Re: Re: Re: Welcome to the world of Topamax!

Submitted by heathersmithers on Tue, 2007-03-20 - 13:22
Hi Bex The concentration does improve ...honest...grin... I still have bad days with both the memory and concentration,,, and multitasking on my off days drives me nuts... i used to thrive on it... i used to manage a business and i loved going to work,,, i am now a stay at home mom,,, of course i had to pick the puberty years to develop this...sigh...lol There are times when i can concentrate and multitask no problem and other times when more than one person in the house is talking to me at the same time and it is almost like my mind is just shutting them out,, it is to hard to focus on them all at once...grin So i just tune them out... Taste buds are a common loss with topamax...sigh... i used to be a diet coke fan... the only pop i drank... all day...grin..i did not drink coffee to begin with so no loss there... Now the only pop i find that i can drink that tastes alright is gingerale...sigh...but at least there is one... On that note,, my own ep neuro is lowing my topamax and adding in a third med,,, sigh.. but not taking away the topamax totally,,, in here you will find alot of us that at times feel like we are the lab rat...grin... it may take awhile to get the right meds adjusted.. and when you feel that okay i can live with what is happening ,,, the neuro feels he can do better...lol But again i would strongly suggest if the tinglying goes anywhere besides your fingers and toes.. or persists... get your b-12 checked.... not that bananas are bad for you though...grin.. Have a good day Heather

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