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Welcome to the world of Topamax!

Fri, 03/09/2007 - 09:36
Topic: 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: Re: Welcome to the world of Topamax!

Submitted by bex on Wed, 2007-03-14 - 13:32
Allison, You seriously have to listen to those around you as they care about you(which I didn't for a long time) and concentrate on getting adjusted to the medication and accepting the condition. I used be known as the 'durcael bunny' and 'speedy gonzalez' as I always operated at 200 miles an hour and having to accept that I couldn't carry on like that and being signed off of work was a massive thing for me. If you need to take time out you must, remember your the most important person and your health should come first. I was super ambitious and competitive and I have had to acceopt I need to take a step back and slow down, otherwise I will not be helping myself. My hallucinations used to freak me out and were frequent but have reduced, the tingling and numbness remain but doesn't wake me up at night as much. You kind of have to laugh at the memory thing at time calling freinds I've know for years the wrong name, and not being able to retrieve words and I've been told that when I'm having a 'moment' I talk complete and utter rubbish and waffle away and then go back to normal! How bizarre! You must take the advice above and write your symptoms down as it helps the dr otherwise you forget by the time you get there. Bestwishes to you all!!! Always happy to help! Bex

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

Submitted by heathersmithers on Wed, 2007-03-14 - 14:00
Hi Allison Ive been on Topamax (topmariate) for going on 3 years now,,, i am at 300mg a day along with 1200mg of carbamazbine... The memory does improve over time... i cant say that it .... hmmm lost for words here....(just kidding)..grin... gets back 100% but it does get alot better than it does in the beginning... I have gone from calling my kids ...hey you,,, and ya the youngest one over there,,, to actually usuing their names... my spelling has never recovered...which alas is oh so apparent.. but i also have ms... do i have a double wammay on the brain waves going on... I still have my days when i walk into a room only to forget why i am there in the first place... but not anywhere near as often as i did when i first started on the topamax.. As for the appitate... as you have been previously told on here ,,,, nutritonal shakes,,, ensure...etc.. your appitate.. will improve over time... you just have to be patient.. I on the other hand was one of the ones who welcomed with open arms the weight loss.. and much to my dismay my appitate has come back full force now...sigh... grin... So yes things did return to what i would call normal for me... but like most i went through my period of panic and anctually called my neuro and had him reduce the amount i was on at one point and leave me there before bringing me back up....grin... i think it is a feeling that we all get when on this drug... Just a footnote for nayone experiencing the tingling and numbness may i suggest two things... one my neuro told me to eat a banana a day to increase my potasium... i hated bananas...grin so i had my potasium checked by my family dr. and found that my B-12 was low.... perhaps either of those may offer a solution to the tingling. Hang in there... Heather

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

Submitted by Jorge Lango on Sat, 2007-03-17 - 13:53
Hi Heather, what I know is that you can not take Topamax together with any carbamazepine, this is a combination that can give you more seizures and worse side effects. The information I have is that the best combination is Topamax/Valproate and/or Keppra/Valproate. My 5 yr daugther is on Topamax with better seizure control although not enough to me. The side effects of mental slowness and confussion we try to handle by giving her vitamin B6 on a daily basis. Any serotonin precursor is recomemnded since serotonin works at neurotransmissor level. Good luck. Jorge.

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