I've been on topamax for about 6 years now and I think it's about time to get off of it. My memory is so bad from before being on it. People tell me things and 5 seconds later forgot. I work at a job and I'm so lucky that the people there understand me so much. I can eat and eat and not gain a pound with them at all. People always say god your so skinny do you ever eat. Are you trying to lose more weight. The thing is NO I'm not at all.
I'm just wondering if anyone else is having any of these problems at all. Please let me know thanks..

My wife just started topomax today. How long did it take to feel the memory loss? She was on Dilantin but gets sick and doesn't like the loss of balance it causes. We were hoping topomax would be a good choice, plus she wants to lose the extra weight. Sounds like you don't recommend it. I do know that Dilantin causes brain degeneration so that one is definitely out. Good luck.

Hi,
I was on topamax for only 1 month for my absence (petit mal) and complex partial sz. While I was on the drug I had 23 sz. just in one month when I usually average 8-10 sz. a month. I didn't care for the AED because as you mentioned I lost more weight and never wanted to eat except for breakfast and that's because I can't take AED's on an empty stomach.
I have found that a few AED's that I've taken over the yrs. have caused me to have short term memory problems also. I've been on mysoline (primidone) for many yrs. and my short term memory has gotten really bad over the yrs. Sometimes I will ask my husband the same questions 2-3 times in a day but I don't remember. I'm taking neurontin also and I ask myself if that can cause short term memory problems also.
Here's wishing you only the best of luck and May God Bless You!

Sue

I lost lots of wt on Topamax and ALSO lost lots of memory with it. But they say it could be the sz too that are frying our brains. I had to get off it because I had so much tingling all over the place it woke me up in middle of the night even. Tegretol made me gain wt, Keppra sent me into clinical Depression, Phenobarb put me to sleep and didn't help my Simple Partial Sx any. I'm about to try Dilantin and am NOT looking forward. I don't think there is any perfect drug out there yet, unfortunately. Good luck!

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Karenz, 30-something Mom. Simple partial sz since childhood. 4 grand mals. On Keppra

i have been on topamax for about 9 months now and i take a pretty fair amount of it. I lost about 30 pounds in 2 months. I have a lil bit of speech problem but not that much sometimes i get kinda lost in what im saying or thinking or i cant finish what im saying cause i will forget. I have simple seizures and this is the only medicine i have ever taken.

i was on topamax for about 3 or 4 months i cant really remember i have now been topamax free for 28 days my memory hasnt gotten any better but my blood pressure has while i was on topamax i had very low blood pressure at one time it was 64/44 not good for a 22 y/o female but since being off of that drug it has slowly gone back up to normal i havent had the tingling in my hands and feet (that got severe the reason i was takin off the drug) and i have been able to carry on an intelligant conversation without looking like an idiot while i was on topamax i would start talking to someone and the just forget what the whole convo was even aboutit was awful but i am now back to my "normal" self i wish you all luck if you are taking this rug and be very careful

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mother of 3
ages 4,3,and 1
my pride and joy

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

I was on Topamax, or as I call it, the most EVIL pill I have ever taken in all my life!!! I had really bad mood swings! no memory, hardly any balance, and talked like i was about 2years old. A friend of mine was also on it due to migrains and had the same speech problems, she also had the tingling in her hands and feet.

I have been on Topomax for about 3 mo's now & have not noticed any wt. loss but I noticed that I will be in the middle of a conversation & all of a sudden I will just forget what the words are that I wanted to say or my tongue will just get twisted all up & I can't speak. That isn't too bad at home but it is at work when I answer the phone & sound awful.
I take Neurontin, Tegretol (2 different mg) & Topomax. I will have to check w/my neuro. on this matter, I am seeing too many scary things about "Topomax" since I joined this board.
Thanks, Joanne

i couldnt rememeber how long i had been on topamax when i wrote my post last night but after looking i was put on it in feb. although this is a really bad drug when i comes to side effects it did keep me seizure free for the period i was on it i did have to be taken off because the side effects were no longer tolerable i have grand mals only and it did control them from feb to about a month ago when i was takin off of it that is the longest i have been seizure free in about 4 years

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mother of 3
ages 4,3,and 1
my pride and joy

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

Hello Ladies,

I just thought I would drop my two cents in here if that is ok?!
http://www.healthboards.com/ubb/idea.gif
I have read on countless numbers of sites and have talked to my Neuro about this: it is not necessarily the meds that are giving us the memory loss! It is the EPILEPSY!! The "E" is a disease of the brain and since the brain is a complex piece of machienry "anything goes!" Seizures are an over-abundance of electrical firings in your brain. Pending on where in the brain they are, and for most of us that is the TL, that is the area of the brain where memory is stored. The AED's don't help the memory much either but it is the "E" that is doing this to our memories!!!

When we start a new AED because the doctor thinks it is necessary, we are on the look out for anything wrong so we don't have any adverse reactions to the medication. A 'heightened awareness' so to speak. When we are put on "super guard" we tend to find things that were there before but just never noticed much because of one thing or another but now we see it and it IS BAD!! I know the AED's are wicked things sometimes (ok, most of the time) but they are not the 'sole' reason for the memory loss...trust me on this one! Don't blame it all on the AED's even though they deserve it! http://www.healthboards.com/ubb/mad.gif

Before I was diagnosed with "E" and put on meds I had this same memory problem. I thought I was getting old at 32. I used to kid with my family about how the first sign of getting old was not remembering why you couldn't remember...ha ha. I used to have a memory like an elephant. Awe heck, I used to have a memory BETTER than an elephant. People used to come to me to remember EVERYTHING! When I started having seizures (simple partial) my memory went down hill. When I 'advanced' to partial complex seizures my memory was GONE! http://www.healthboards.com/ubb/confused.gif

I hope this helps! I don't want anyone to think that I am telling them they are wrong but just wanted to shed some light on a gray area.

Hope everyone is doing well.

God Bless you all...my family in "E",
KittyMom http://www.healthboards.com/ubb/wave.gif

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

although yes the epilepsy does kill our memeory after every seizure it gets worse i agree but the topamax does make it a little bit worse ok a lot worse i know this for a fact because when i was on it my memeory was horrible i havent had a seizure in almost 6 months once i was taken off topamax my memeory did get better and it is continusly getting better the longer i am off the crap so yes epilepsy makes it bad but topamax makes it worse it does come babck slowly after coming off of it

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mother of 3
ages 4,3,and 1
my pride and joy

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

momma,

I don't disagree with what you are saying. I just stated to everyone that meds aren't the "SOLE" reason for the memory loss. You will never have your memory back the way it was...EVER!! I agree that after being off AED's you will see improvement but like I said, it is not the "SOLE" reason. That is all I was trying to say. I didn't discredit you at all. I was just making a point of fact.

God Bless,
KittyMom

oh i know that kitty i was just clarifying myself i know my memory is better but it will never be the way it used to be i will never be my regular self i have had to many grand mals i know i will never be the same person i was at 15 when my seizures started and even though im only 22 my memory is like that of someone over 50 proven from tests i had done i know i will never be the same and that makes me really sad but in the same breath i have to be thankful that i am still here and alive and doing well whenever i start to get depressed about it i think to myself hey it could be worse http://www.healthboards.com/ubb/smile.gif im just thankful for everyday that i wake up and can enjoy life with my husband and kids

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mother of 3
ages 4,3,and 1
my pride and joy

diagnosed with epilepsy jan. of 97

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

My son has had epilepsy since age 9 (he is now age 23) and he has been on Tegretal, depakote and is now on Topamax and Zonegram. He had weight gain with the Depakote and weight loss while taking the topamax and Zonegram which is great for him because he also has Diabetes, so we were very excited with the results of the weight loss. The worst problem is his severe confusion and memeroy loss since he has been on the 2 meds of Topamx and Zonegram. I believe that the Epilepsy can cause some moderate memory loss but not as severe as I have seen in my son with in the last year since he has been on these meds. We are working with the doctor to get him to try something different, which we had suggested Tegretal because my husband's sister is on this for epilepsy and she has not had a seizure in 3 years. The doctor said it was not the right med for my son and I disagree but the doc will not listen (WHY?). I see in my son how sad it is that he has such a problem with answering a question or even not wanting to do the things that he loves to do, like play hockey and before this he was fine as far as memory and confusion. Now he has had more seizures and some real bad ones that he was hurt and that is very scary. I think the longest he was with out one was 6 months on the depakote. I feel bad for all you folks that there isn't a drug out there that is not bad for you.
Thanks for listening, Kim

Hello again,
What else would you all suggest in place of Topomax? I am going to call my Dr. next week. But before she found Topomax for me, there were 2 others (can't remember names) & they made me soooo sick, I was completely dehydrated from being sick so of course I had lots & lots of SZ's.
Give me any of your info.

Have a great weekend & enjoy life to it's fullest.

JB