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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: Re: Welcome to the world of Topamax!
Submitted by curlycuess on Sat, 2007-03-31 - 14:46
I am36 yrs old and on 200 mg Topamax and 1400mg Carbatrol a day. As soon as my Dr. added on the Topamax my seizures stopped!! So I have been seizure free:) for 4 and a half years. I was having Complex Partials and of course I'm always afraid that they'll come back from some reason or another....stress, not enough sleep etc. But of course, as we all know the AED's Topamax in particular have their side effects. For me, the biggest problem I have with it is the word-finding. I'm always getting stuck on words when I'm talking. It's soooooo annoying. My math skills have also gone just down the tubes. I absolutely cannot figure out my a tip in a restaurant anymore. I can, but it takes forever. I'll sit there and stare at my receipt for the longest time trying to do the math in my head and half the time I'm just staring at it not even doing any math at all. All that stuff has just slowed waaayyy down. I definitely do need a lot of sleep and I notice it majorly when I don't get enough. I'm a zombie the next day or two. The biggest thing on my mind lately with all this has been do I want or should I have kids with my epilepsy? THat's probably another whole entry but while I'm here I'll just say that I've always thought that it maybe just wouldn't be the best thing for me because of the meds and the side effects and the risks to the baby and also would I be able to handle kids being tired with not enough sleep and would that be healthy for me over all. I know a lot of women have healthy babies who have epilepsy but I just don't know if its right for me and do I want to change my meds when they're going so great and I haven't had a seizure in so long on what I'm on, do I really want to adjust my meds for pregnancy. Do I want kids that bad? I'm just not sure? Ok, now that I've written a novel here. I'll just leave it at that. You all have a great day.
Re: Re: Re: Re: Welcome to the world of Topamax!
Submitted by bex on Mon, 2007-04-02 - 08:58
After Heathers advice, I've started on a Banana a day and a vitamin drink (berocca) which contains 85% RDA b12 and I'm sure the pins needles are improving. I'll let you know when I am bored of bananas. I too have nights where I wake up and am so wide awake its like I could get up - so will be interested to know how you get on with your specialist, keep us posted.
Like you all, sleeps a major thing or I'm a zombie who can't function. Saw my neuro the other day who wanted to add on some Keppra after coming off Lamictal which didnt work for me. I've decided to just stick with Topamax for now as monotherapy which will be going up the next few weeks once I come off another drug.
I love the way we have the same experiences - the bill thing - I always got the bill passed to me in restaurants cos I was like the maths expert and now my friends help me to try and work it out!
Curly, as for your concerns on pregnancy, have a look at the womens sections. I don't see epilepsy stopping me, my neuro said to me the other day at the moment my epilepsy is going through an active stage and this could stop so why put your life on hold but it depends what you truly want. I think if I have kids I'd come off the meds and go back on them after (even though the neuro doesnt agree). So pleased the meds are working for you! Take care.
Re: Re: Welcome to the world of Topamax!
Submitted by Leanne Carter on Wed, 2007-03-28 - 19:34
I have been on Topamax since October 2006, I am still increasing my dosage at the moment to 400mg. I have found the drug good, I get the tingling in my fingers and toes but i only find that while I'm increasing my meds. I have lost weight but my advice to people is to eat often and to eat a high potein diet, lots of fish is good for brain function. I have to stop drinking frizzy drinks as they taste flat (which is a good thing as they are full of sugar). I have stopped smoking, as the desire for smoking has gone since I have since I have been on this medication, so thats a good thing. I haven't been as tired on this medication as I was when I was on Epilim, I get up in the mornings now as before I couldn't get out of bed. The only thing that worrys me about this drug is when I get my Period is for a couple of nights I wake up in the night and can't get back to sleep for a few hour and then Im a wreck for a few days, so I'm seeing the specialist next month. I seem to get seizures around the time of my periods and I only have seizure in my sleep. I hope that this medication can work for me as the side effects work for me alot better that the Epilim. I think the key for a lot of people is watching what we eat, eating the right food and getting the right vitamins and minerals from the foods we eat.