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    Old 12-06-2005, 12:49 PM   #1
    tweetygirl
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    Any Zonegran users?

    I'm new to the healthboards, but have been having grand mal seizures since I was 14 (I'm 26 now). I've been on numerous meds but nothing seemed to truly work. Dilantin stopped my seizures but made me so sedated and depressed I couldn't function. Lamictal worked for moods and seizures, but only for less than a year. Kepra once again brought me no seizures but the depression and sedation became unbearable. I'm now starting Zonegran but am getting to feel a bit frustrated, if not hopeless. Any ideas, words of wisdom, or anything that has worked for anyone out there. Thanks Guys.
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    Old 12-07-2005, 06:32 PM   #2
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    Re: Any Zonegran users?

    My son started taking Zonegran about 4 weeks ago. Started at 50 mg each week until he reached 200mg. He takes it as 100 mg at 8am and 100 mg 8pm. He also takes 400mg Tegretol xr at 8am,2pm and 8pm.
    He is doing fine on it so far. Our problem was with the Topamax so he is going on it at the same time as going on the Zonegran.

    Hope this helps

     
    Old 12-08-2005, 06:25 AM   #3
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    Re: Any Zonegran users?

    I have had 2 teens take Zonegran, my son for the second time, and each had a different reaction. My son has done fairly well with taking it. His side effects are fairly small unless he goes really high in dosing. When that occurs he cannot think straight, seizures increase and he is agitated and frustrated. When he is at a good dose for him he is ok! Apetite is a bit low, but not too much.

    My daughter seemed to tolerate it ok at first but when she got to 300mg she was increasingly fighting Anxiety. This got very extreme and was controlling her life. She also had big memory and learning problems on it, failing a class in school and dropping grades in others. Once she was weaned off she did much better.


    Seems to be a love it or hate it med from our experiences and from all I have read. SOmetimes it does take a few weeks to see if side effects will level off or not. I hope you can do ok with it. Have you told your doc how you are feeling>?
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    Old 12-08-2005, 11:03 AM   #4
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    Re: Any Zonegran users?

    I've only been on it a short time (about a week or so) so I've yet to complain again to my doc about it. The reason I'm on it is because of complaining about Kepra. Kayakmom, I'm sorry to hear both your kids had seizures, are they doing better now? What, if any thing, worked for them? I'm also curious if I should give up looking for that one medication that will work, and start polytherapy. Did either work better for your children? I don't mean to be so nosy, I'm just curious. No one else in my family, or even that I'm close to has epilepsy. Thanks so much for all the help.
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    Old 12-08-2005, 12:40 PM   #5
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    Re: Any Zonegran users?

    Hey T Bird, Zonegran worked pretty well for my son for 1.5 years, then he had meds pulled. He got pretty bad in his time off medications. Right now he has been back on for about 4 months and we see improvements, but no control yet. Seizures are somewhat milder, other things are better, but he still has seizures. We do plan to try poly therapy when we have tried all the potential doses for this one. He has not ever been on poly. My dd stopped having seizures last December and slowly weaned off meds last summer. Hers were mild and just stopped. Hoping they do not ever return. It was possible it was a neurolyme case and just transient. She was only on Zonegran and no other AED.

    They have a great uncle who had epilepsy but the neuros are not sure there is a genetic link between them. His was supposed to be from a birth injury and was severe his whole life. We do not know why my son has his.

    I wish you well. Give it some time with the med. I know meds stink and the side effects can drive you batty. Seizures do as well.
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    Old 12-16-2005, 07:34 AM   #6
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    Re: Any Zonegran users?

    Quote:
    Originally Posted by kayakmom
    Hey T Bird, Zonegran worked pretty well for my son for 1.5 years, then he had meds pulled. He got pretty bad in his time off medications. Right now he has been back on for about 4 months and we see improvements, but no control yet. Seizures are somewhat milder, other things are better, but he still has seizures. We do plan to try poly therapy when we have tried all the potential doses for this one. He has not ever been on poly. My dd stopped having seizures last December and slowly weaned off meds last summer. Hers were mild and just stopped. Hoping they do not ever return. It was possible it was a neurolyme case and just transient. She was only on Zonegran and no other AED.

    They have a great uncle who had epilepsy but the neuros are not sure there is a genetic link between them. His was supposed to be from a birth injury and was severe his whole life. We do not know why my son has his.

    I wish you well. Give it some time with the med. I know meds stink and the side effects can drive you batty. Seizures do as well.

     
    Old 12-16-2005, 07:44 AM   #7
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    Re: Any Zonegran users?

    Hello its been a long time since i've been in here. My daughter grown with 3 children has had seizures since 16, she then had a few seizure free years, got the drivers licence job and 3 children then started having them worse than ever. We live in arkansas and she then because of poor physician response, went to california to seek better medical care. She then was sent to a clinic in San Fransisco and they said she does not have epilepsey. I remember talking to you when I first came to this board. My question to you is do the dr.s often pull the meds? The dr. seeing her now wants to see the un medicated girl. But she is so depressed, she tried to overdose the other day, her and her husband are splitting and things couldnt get much worse for her. She is diagnosed bi polar and wont go anywhere, dosent like to even go to the store. Her dr wants to do this but she just goes haywire when they do this. Seizing for hours and hours. When she was here the hospitle emergency room would literally pick her up and put her in my car and say take her home. There is nothing they could do. The tests show no epilepsy but what would cause her to have these siezures everyday for hours ?? I think they have missed something. She is still on seizure meds. And refused to get off them. For the medication.I ask for prayers for her if nothing else. Thanks for reading this I need to reach out to someone. Dont know where to go.

     
    Old 12-16-2005, 07:55 AM   #8
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    Re: Any Zonegran users?

    Oh Rocket, I am so very sorry your sister is going through so much!! Doctors do frequently pull seizure meds when the tests do not show epilepsy. USUALLY, if they do an EEG during a seizure they should be able to see a change in the brainwaves unless the focus is too deep.

    is her MRI normal? Have they tried a PET scan? Sometimes these can see things that are not right in the brain stucture or how it works that could indicate seizures are possible.

    Bipolar as well as depression is not uncommon along with epilepsy. The combo of seizures and medications can often make this worse. Is she getting any treatment for these conditions?

    Having her marraige break up makes it all so much harder.

    Maybe she can request that they take her off meds in the hospital and monitor for seizures to see if they pick up what the other doctors have missed?

    So sorry the answers are not there for her. It is so hard to get them to see that help is needed when their tests do not show what is going on. I hope she can get answers and help soon.
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    Old 12-16-2005, 08:39 AM   #9
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    Re: Any Zonegran users?

    I'm also sorry your daughter's having such a rough time. As for pulling my meds, that's defeinitely not good in my case. I have been declared epileptic, have grand mal seizures, and have EEGs (last one was about a month or so ago) that still show seizure activity. I am very dependent upon my medication and missing even a dose can cause me to have a seizure, that's why this constant changing of medication is just making me nuts. Sarah
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    Old 04-01-2006, 08:52 PM   #10
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    Re: Any Zonegran users?

    hi-

    My name is Heather, and I'm 19. I've taken a LOT of seizure medicines in the past. Lamictal, Depakote, Keppra, and now Zonegran. The Lamictal I didnt tolerate at all. The Depakote made me gain excessive weight and i felt hopeless, depressed, and like a nobody, and now im currently taking 3000 MG of Keppra with 400 MG of Zonegran a day for my Seizure control. Ive been taking the Zonegran for about a year and a half. I began taking 400 Mg at nighttime for about 6 months but them i lost so much weight on it (I'm only 5 foot tall) that my Neuro reduced it down to 200 MG a day but i began having seizures again, so he raised it again, and just simply told me i had to make myself eat. (keppra and zonegran are appetite suppressents i sometimes would go 5 days without food and not be hungry. He then added the Keppra to it at 3000 MG a day which made me extremely tired all the time and like a zombie. I never had ANY side effects from the Zonegran which I can honestly say is a first out of my collection of AED drugs I've tried in my lifetime.

     
    Old 04-04-2006, 06:58 PM   #11
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    Re: Any Zonegran users?

    Hi my name is Kelly and I have been epileptic for 2 years now. I am 17 years old. I have been on numerous meds, mmy grades are in the toilet, and now they are thinking about VNS for me. At the moment, I am on Zonegran. Does anyone else sleep all the time with this med? I got so sleep and found myself sleeping all day because of it. I don't feel right on this med. Anyone else have this side effect?
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    Old 04-19-2006, 01:06 PM   #12
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    Re: Any Zonegran users?

    Do you find any depression side-effects from zonegran? I find slight. I am at 200mg per day. Good luck.
    Chris

     
    Old 04-21-2006, 04:20 PM   #13
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    Re: Any Zonegran users?

    I am currently on Zonegran but I don't like it. I think I've been on 9 meds in 30 years. Depakote worked great on seizure control but I gained 90 pounds and lost a lot of hair. I didn't have much to start with! That extra 90 pounds caused other health problems. Depakote also gave me tremors but I was still the best at Jenga! Zonegran is my 5th medication in a little over 3 years but it is causing my migraines to become quite frequent and I am having breakthrough absence seizures at 400 mg. Had a grand mal at 300 mg. See the neurologist Tuesday. Not sure how many more meds there are to try.

     
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