Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Welcome to the world of Topamax!
Fri, 03/09/2007 - 09:36Topic: Medication Issues
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: Welcome to the world of Topamax!
Submitted by GuidonGirl on Wed, 2007-03-14 - 11:41
Well I am two weeks strong guys and the tingling is getting better. The only thing that is really bad for me right now is the appetite thing. I am a little concerned because I have always been a light and I mean LIGHT eater and now I am eating even lighter...another phone call to the old doctor. I guess that is why we pay them the big bucks right?
But, the memory thing has its good days and its bad days.
It is just hard when you are a journalist and you have to keep your words straight when you are on deadline and your thoughts are straying.
My mom and editor gave me some great advice while I was and am still getting used to this drug...
"Take it one day at a time...SLOW DOWN! Allison, you used to take your speedy writing and quick wit for granted, slow down, think it out and this too shall pass. We all have our things to deal with and just give it some time because sometimes that is all you got...time...you should know that Ms. Deadline." :)
Our tingling and our hallucinations and memory loss are simple reminders of the struggles that we have to deal with the medication we have to take...but think of the alternative...I think the best way I feel better about this diagonsis of E is being and REMAINING positive!
The best to all of you!
Allison
Re: Re: Re: Welcome to the world of Topamax!
Submitted by Christina41586 on Wed, 2007-03-14 - 12:01
If the worse thing you get is the tingling and memory issues, then stick with it. If you get the insane vomiting and kidney stones, then I'd recommended leaving it behind! I'm 20, recently diagnosed, and I've gone through Topomax and am now on Lamictal...I have the dreaded rash, but not apparently bad enough for them to stop taking it. To bad it also isn't working fully.
The appetite loss I could deal with, as long as I did high calorie protein shakes, but once I started throwing up, it was over. I spent four days on IV nutrition before going home and taking something else.
I don't know whats next for me, I find out Friday!
Re: Welcome to the world of Topamax!
Submitted by Bee91 on Wed, 2007-03-14 - 11:25
Hello. I was on Topamax for 2 weeks. I did feel the tingling in my entire face...I remember talking and all of a sudden I was like...woah....my whole face is numb...Im not sure if i like it or if i dont like it wow....its soooo cool....ugh...its sooo weird... It was a horrible drug for me...but i think that was one of the strangest feelings I have ever felt. I had horrible hallucinations on it so after two weeks i had to stop taking it.