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Topamax, please help!!
Thu, 03/03/2005 - 10:56Topic: Medication Issues
I have just started my daughter on Topomax for newly diagnosed "Generalized Epilepsy". Some of you may remember me---she had one seizure at home and an abnormal EEG in the ER that day. A repeat EEG (sleep deprived) a week later was normal, but the neuro told me she thinks my daughter is at high risk (75%) for more seizures. So reluctantly we put her on the Topamax. It has been a week and a half, and she is only taking half of her full dose because we are titrating her up. But I notice such a big change in her. She is sleepy, seems depressed, normally she is a bright cheery ray of sunshine, but not now. She cries at the drop of a hat. And I got a note from her teacher that she is not following oral directions well, seems tired, and is having trouble gettting her assignments in on time (before she was a straight A student and no trouble at all).The info on Topamax from my MD says these side effects are only temporarywith the inituatuib if treatment and usually go away. But I want the truth from you all. Is it true? Is it just temporary? Every fiber of me wants to stop the meds and get my little girl back. She just had one seizure. Maybe she will never have another one. I know a lot of kids have problems in school before being medicated, but what about after? This is just what I was afraid of, my little girl becoming someone else, someone unhappy, someone having problems in school.Please tell me your experiences. Right now, I would risk her having another seizure rather than see her like this. I can't take it. Let me know if it gets better please!Thank youRachel
Comments
RE: Topamax, please help!!
Submitted by Elena on Wed, 2005-02-09 - 04:31
Dear Rachel!I've been taking 100mg of Topamax per day for 6 months, from March to September 2004. It was the worst medication for me. And that were the worth months in my life. I was very depressed and tired all the time. I was crying a lot, without some true reasons. In that time I didn't believe in life. I also didn't want to live and sometimes I get wish to kill myself. I became suicidal in the last three month (Jul, Avg. and Sept.). I was in fear of life, fear of people, also of my house and my city. Fear was everywhere. I lost a lot of my hair. And even my neurologist didn't know that is because of Topamax. I get to know that information here, on this site. I noticed also a dramatic decrease in weight. I lost my appetite and lost about 6 kilos. I was also taking B vitamins, so that gave me a little more appetite. I was often dehydrated, so I drink about 3 litters of water for a day. My concentration and memory were also very bad. I am writing my last project in my studies now. And, when I was taking Topamax I couldn't write it. I didn't write almost anything in that time. Now I am taking Keppra and it is much better medication for me. I had problem in the first month (sleeplessness), but now it is all OK. I am very happy with that medication and I am a positive person again. Now I can work normally and I can live normally again. I can keep company with my friends again; I can love my husband... I am living again! I have normal appetite now, I have my hair again, drink normallyÂ…But people are very different. Topamax is very good medication for someone. Like Keppra is also bad for someone. I hope that your daughter will be better. And that you will find the right medication for her - to be happy girl again :)With love...Elena
RE: Topamax, please help!!
Submitted by AmyQ on Wed, 2005-02-09 - 21:43
Rachel,It's a tough one... our little boy (three years old) was on Topomax for three days, and we took him off. His whole personality changed so quickly that we couldn't take it. It was awful. Even his eyes looked crazy. I don't know what to tell you other than to go with your instinct. There are other options out there. You should research Keppra and Zonegran. Zonegran has worked for generalized seizures on my son. Also, you can always get a second opinion... it just takes time to get appointments sometimes. Keep us posted,AmyQ
RE: RE: RE: Topamax, please help!!
Submitted by rhosgirl on Wed, 2005-03-02 - 13:50
I'm on zonegran right now and with a combo of three other drugs as well. I don't really see the harm in the drug but if that's what your neuro said I'd take her word on it. Good luck to you as well