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  • new on topamax, side affects, will they go away?

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    Old 08-14-2004, 11:48 AM   #1
    elicia
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    new on topamax, side affects, will they go away?

    Right now I am taking the beginning dosage of 25mg a day of topamax. My head feels yucky, I have a headache most of the day and really just feel lousy. In a week my doctor wants to up my medication to 50mg. a day. I have however been seizure free and would like to stay at the 25mg a day if I can since I don't want to take any more than I have to of this medication.($$$$$) My question is, is the feeling I have of yucky,headaching feeling something that will come to pass when I get used to this medication or will my medicine have to be increased for it to go away? if it will come to pass on the 25 mg dosage, how long does that usually take? if there is anyone that has any thoughts on just starting this medicine and how it makes them feel or felt, please let me know. I know a lot of people take this drug and do well on it. I still think it's a better alternative to the tegretol that I did take. It's just getting used to it in my body I guess. Least I hope that's all it is. thanks!

     
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    Old 08-14-2004, 01:43 PM   #2
    Karla
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    Re: new on topamax, side affects, will they go away?

    It makes you real stupid around 200mg and you cant rmeember a thing and you forget all about everything. It doesn't go away. I would run from this medice. I don't know of one person that has taken it and had good luck with it side effect wise.

     
    Old 08-14-2004, 02:24 PM   #3
    elicia
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    Re: new on topamax, side affects, will they go away?

    Do you make any recommendations on what I should ask him to try instead. I know they all have side affects and I'm ready to deal with that issue. Weight gain was a big side affect with tegretol for me, I liked that issue about the topamax but I tell you, this headache everyday really stinks. I need something else for sure. Thanks.

     
    Old 08-14-2004, 04:18 PM   #4
    tkdmom96
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    Re: new on topamax, side affects, will they go away?

    Hi,

    What typw of seizures do you have? That has a great deal to do with the medication that is chosen.

    Our daughter (16 years old) has Complex Partial and Simple Partial. Over the years she has taken Tegretol, Tegretol XR, Carbatrol, Depakote, Neurontin, Keppra and Lamictal. She recently (June 7, 2004) had surgery to remove the area of seizure focus and has been seizure free since the night before surgery.

    Katie had no trouble with Tegretol as far as weight gain. She was on it for 13 years. It just stopped working. She lost A LOT of weight and all body hair on Depakote. She went from 110 pounds down to 88 in 4 months. That's a lot of weight for a 12 year old to lose. Her pony tail went from larger than a quarter in thickness to less than a dime around. It was very rough.

    Neurontin, Keppra and Lamictal have been affect free for her, as far as we can tell. We noticed no difference in behavior or weight issues.

    Our Epi does not care for Topomax. When it came to deciding a second med for Katie she added Lamictal to her Keppra. She did mention cognitive and headache issues with Topomax. The Lamictal has worked well, with the Keppra. Lamictal was added October of 2003.

    Good luck,
    Vicki
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    Old 08-14-2004, 04:40 PM   #5
    elicia
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    Re: new on topamax, side affects, will they go away?

    I have partial complex seizures but they are very mild. I can go weeks and not have any and then have one. Sometimes they are stronger than others, sometimes it's just auras and that's it. They are so far and few between that it makes me not want to medicate with a heavy dose of medicine unless i have to. With tegretol I still had break through seizures and I dealt with them. I also had the weight gain, memory loss, concentration problems etc. I understand topamax at a high dosage is worse that's why I'm reluctant to take any more than I have to. It's been a toss up as to what to try now. I was hopeful the topamax would work but my neck aches, my head aches and just feel like I have a "empty head" affect, like i haven't taken medicine. Makes it really hard to function through a day even though I have to say all that aside i still prefer it over tegretol just because I know with me and the weight gain on tegretol, it depressed me more than the drug. But I don't think topamax is going to work for me in the long run as I do not think I can stand the head aches daily. Has anyone heard much about Zonegran? How does it compare? any thoughts?

     
    Old 08-14-2004, 07:21 PM   #6
    Moonrunner72
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    Re: new on topamax, side affects, will they go away?

    Elicia,
    I,too, had a bad reaction to Topomax. I had slowly increased my dosage to 100 mg daily. Then it just got to me. I was having problems balancing and had to hold on to things to keep from falling. I was dizzy with the "little sparklies". Kind of like tiny flashbulbs going off while I was trying to stand. I, on my own, stopped taking it and my clinic nurse told me I should go back to 50 mg daily to titrate me off Topomax. So I took the 50 mg and within 30 minutes I had fallen to my knees. It was just too much
    dizziness for me to deal with. I'm now taking 500 mg Lamictal plus 2000 mg Keppra plus 300 mg Dilantin daily. I also take some non-AED's but I'm rather sure they aren't causing any problems in the overall cocktail. There must be 20 different AED's so don't be shy about suggesting or asking to try something different than Topomax. I know you'll never see me taking any now. I've been trying different kinds of AED's since I had my first GM at the age of 30. I'm now 57. This is the closest I've come to being "cured". However, I'm not under the same stress I had when my seizures were at their worst. I had a GM in my sleep last month but it was involved with a 50 lb weight loss. I had become toxic in my Dilantin level and the reduction of Dilantin didn't agree with me at first. I guess I'm OK now. Good luck to you.

     
    Old 08-16-2004, 01:58 PM   #7
    Lisa T
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    Angry Re: new on topamax, side affects, will they go away?

    Hey wait a second!!!!!!!!! NOT everyone has a bad time with Topamax!!! Give it a chance!! It has been my wonder drug. Yes the side effects can be quite difficult at times, but the longer you are on the med, then you will get over them. The T headache can be awful, my neuro told me to take magnesium to help with that. The magnesuim also helped with the numbness I was experiencing. Everyone has a different reaction to meds, listen to YOUR body. Talk to your doc about the magnesium and see what he says it really did help me!!

    I'm just really sorry I didn't check the board over the weekend!!! Hope I helped!!

    Lisa T

    Karla... I'm on a 200mg dose and don't consider myself stupid!!
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    Last edited by Lisa T; 08-16-2004 at 02:44 PM.

     
    Old 08-16-2004, 03:04 PM   #8
    Wondering25
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    Re: new on topamax, side affects, will they go away?

    Hi all, I am going to start Topamax soon (still working up the courage), but it is for my anxiety. The doc said that I would lose a lot of weight on it, and that I wouldn't like sugar anymore. Have yall experienced the not liking sugar thing anymore?

     
    Old 08-16-2004, 03:15 PM   #9
    Lisa T
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    Wink Re: new on topamax, side affects, will they go away?

    I do not drink pop anymore, because it tastes flat! but thats about it!! I just now started losing weight (200mg). Make sure your doc increases you slowly!!! Good luck!

    Lisa T
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    Last edited by Lisa T; 08-16-2004 at 03:17 PM.

     
    Old 08-17-2004, 02:42 PM   #10
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    Re: new on topamax, side affects, will they go away?

    I have been on Topomax and Depakote for about 9 months now. They built me up to 100 mg Topomax and 2000 mg Depakote per day at the beginning. After I got to that level, I started feeling like I had the flu. I was nauseas, I had diarrhea, I was extremely tired, my head hurt, I was very depressed, my stomach hurt to touch it, I was very cold and I was off balance. I also had the complaint of losing my memory but I didn't put them together. They realized I was overdosing so they cut my dose in half. I have been on this dose ever since and been seizure free! My main complaint is the memory loss and feeling dumb as a doorknob but having my life back after so many seizures is much better. I take selenium, zinc, and magnesium to help with hair loss and also cranberry for urinary tract infection...the suplements have helped. Just hang in there. I was on just about every drug out there in just one year. That year was a blur...between seizures and drug side effects but I am driving now and doing great. There is hope! Just keep talking to your doctor. I am sorry I didn't get to see this sooner, I was away. GOOD LUCK!
    Kathy

     
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