Hello
my wife is 34 years old and I have been married for 5 years my wife had ep prior to us meeting she had only had seizures aprox every 6 months or so and usually pet ma seizures and has not taken meds since she was about 15 years old. Our son was born 4.5 years ago and when he was aprox 3 months old she had a very bad grandma seiz, in hospital for days and did not even know who I was. That was 4.5 years ago. Before this time she was a healthy happy woman. After that seiz we found what we thought was a good neurologist he pescribed topmax and had my wife work her way up to 1000 mg a day based on her eeg, well if you know at all about these crazy meds you can imagine the results. She lost allot of weight and became a nut. After that he reduced her to 500 mg a day and things got allot better than they were. Well since then we have been thru many doctors and in march of 04 we found a doctor who I believe in and he seems to try but she is still on topmax 200mg per day. It seems that ever since she has been on topmax she has so many health problems. In the past few years she has been told that her constant back pain is fibormioliga so they give her meds for that, she has a different sleep pattern every week, she always seems to get really motivated about new things but never follows thru with anything, it seems like she gets sick allot like stomach aches, nausia, headaces, etc etc, am I alone with these symptoms ? Before she ever took these meds she was a happy outgoing woman, my wife is now 34 years young and I swear she never had these problems before these meds, you can listen to the doctor and sometimes you think they have no idea what the hell they are doing, can her meds cause all this mysterious illness, she has no seizures now but feels like she is going to in frequently, say once a month. When she has her eeg is shows seizure activity in her left rear brain above her ear so she definitely has ep but I think this topmax is screwing up her mind and body she had tried the traditional meds when she was a kid, dilanton and tegritol but said they made her feel sick, does anyone have any advice with some experience under their belt??????

Thanks, frustrated husband Confused

P.S. Sorry about the spelling
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First Helper kelly207
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replied July 20th, 2004
My grandmothers crazy doctors give her topamax to lose weight! Well any way one night I was having a bad migraine and it was on a saturday and my local pharmicist was closed until monday!! And g-ma said she had migraine medicine so she gave me one 100 milligram topamax to take well I was scared to take the whole pill so I broke it in half and after I took it I got very sick feeling I felt like I had got nauseated and kept gaging and for two weeks after that my tounge felt numb like when I drunk a coke...Etc... Carbonated drinks felt like drinking water!!!!! That is some seriously strong medicine.. My dad has had 6 grandma seizures in the last 2 years and he takes dialantin 100 mg and they control them but when he stops taking it he has them he also has minor seizures often in between!!! His are due to a very bad car accident!!! Grandma seizures are very scary!! But try to get your wife to try dilantin again they are pretty good for controlling seizures and now that wife is a lil older her body may adjust to them better!!!!!!!
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replied July 20th, 2004
Wife On Topamax
I was on topamax for a while .I lost a lot of weight and my nuerologist increased the doses before I could convince him to decrease them as it was not only affecting my weight but day to day life. I would be asking your specialist to wean her off topamax and try something else,when I went off topamax I tried a few others but have since settled with nuerontin along with dilantin and tegretol which are the main two stabilisers for me.
I have heard unusual reports about dilantin and women ,one been that it causes excessive hairiness on thier legs
good luck, keep trying ,and even if you dont find something that completly controls her epilepsy ,you may find a combination that reduces the frequency or severity of them.
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replied July 25th, 2004
Topamax And Epilepsy
Hey man,
i've been in a similar situation as your wife. I was a normal guy until I got one too many concussions from football and dropped to the ground one day with a grand mal seizure from scar tissue on my brain on my right temporal lobe. I've been on dilantin, lamictal, keppra, and now I am on topamax, and all have f***ed with my head in some way. I'm 24, I can't drive, I live at home with my parents, and am trying to get back on my feet in life. When this kind of thing happens, your life gets turned upside down. You feel motivated for a short time, then you never see your projects through to the end. I know how your wife feels. And every failure piles up. Each experience adds on, and each seizure is remembered by your brain. I really can't say anything on the meds except keep trying them until you find one that fits. It took me 2 years and 4 meds until I finally settled down. I was schizo, depressed, violent, crazy, and in jail for awhile, and now, on topamax, I am seizure free, and back in college. Try finding a specific epilepsy center that specialized in only that. My first 2 doctors sucked. I ended up going to the mayo clinic in minneapolis that was good and barnes jewish hospital epilepsy center in st. Louis. Good luck. Keep fightin.
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replied July 29th, 2004
Topamax
That drug screws with thinking. I couldn't remember anything!!! Tell your doctor to put her on keppra - I love it ! I will probably need another drug eventually, but for know my seizures are under controll, and I don't have to feel like my mind is gone.
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replied July 29th, 2004
My doctors also put me on topomax a few years ago. Talk about raging psychotic!! My husband said he was so freaked out he didn't know what he should do, run for his life, or stay and risk pain to help me!! And that was only after three weeks of topomax! You need to insist to your doctor that this cure is not worth it. When my husband phoned my doc to tell him, my doc admitted that this frequently happens, but sometimes when it doesn't it's a good med. I would definitely never try anything like that one again, and now when my doctor suggests new meds I ask him on a scale of one to ten how it rates to the experience I had on topomax. It's really frustrating, but the best thing you can do is just keep seeing different doctors until you finally find one who works well with you and your wife. I've had epilepsy since I was 15 (20 yrs now) and i've seen so many doctors. But now I have one who actually listens to me, and he knows that i'm not going to pull any punches when I talk to him about my health, so he knows he can do the same.

By the way, much credit to you for sticking by your wife so selflessly, I can only imagine how devastating this is for you to go through as well. Many women don't have that kind of support, and you should know that you being there makes a huge difference. All the best!
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replied August 15th, 2004
Topamax - Calcium Deficiency
Hi
i was on that drug for a year the max, I when I hit my level diagonsed by my nuerologist, I started to have big problems. My attatcks did not improve (i have partial refractory epilepsy) and my health started to diminish slowly without me realising it, or I just ignored it thinking it was nothing. I soon got to the stage where my body was exhausted everyday (please note, I was attending a gym on a regular basis and was very fit at the time), but it came to the point I could barely push myself. Within weeks, my body started to hurt from top to toe, then I found it almost impossible to walk as my legs were in pure agony and I started to limp. And, I lost over 2 stone in 4 weeks even though I was eating a healthy and balanced diet. I had the features of an escolotan and felt sick everyday, diaroiah (not sure how you spell it sorry) all the time. What the doctors eventually found out, was that the tablets had caused a calcium deficiency in my system and as a result my bones deterioated and my body could not cope with the food I was processing. Thankfully, once my nuerologist saw me in this state she was very quick to act and got me off them as soon as she could.
I for one, will never ever go back to those tablets, they almost ruined my life and even though it was a year ago, I still feel a bit on edge about it all.
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replied April 22nd, 2005
Always remember, medicines work differently for everyone. I'm on 200 mg topamax daily. I never lost 1 pound. At first, it effected my thinking. Actually, for quite some time. I even lost my job over it. (at a doctor's office, no less) she was a very non-understanding doctor!) it still effects my memory.
Epilepsy is still new to me. I was diagnosed in june 2004. I do not have convulsive seizures. I have mostly photosensitive seizures, first thing in the morning and late at night. And the topamax helps control my migraines.
Good luck to you.
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replied May 17th, 2005
Some of the side effects of topomax are, trouble concentrating, back pain, joint pain, numbnes and tingling in hands and feet, problems sleeping, anxiety, depression, suicidal tendencies, agitation, problems finding words, confusion, mood problems, sleeplessness, short term memory loss, sensitivity to sunlight....To name a few. Topomax is also used to treat depression, migraine headache, etc. It just depends on how your body reacts to it. My hubby tried dilantin, and was such a pain in the butt. Agressive, screaming, etc. I don't recommend that one, but again, its how your body acts to it. There are plenty of other drugs she can try, depakote, dilantin, etc. I would ask for your dr to make a switch, a gradual one, or ask for something to help with the nuttiness. Otherwise, she's your wife, you love her, would you rather her not have seizures and be a nut, or have them and be okay the rest of the time? ( I don't actually think there's a choice, i'm just illustrating.)
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