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Old 12-18-2011, 07:59 AM   #1
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Keppra Rage after 3 years?

Hi - our 26 year old daughter (functions at age 4) is now having horrible rage and is so unhappy....she is at 3000 mg/daily and although keppra at one time kept her daily seizures shorter, it no longer does - her quality of life is suffering because of the rage. (To try and help her, she started on an anti depressant a few weeks ago) We are surprised we are only seeing the rage now....she was on tegretol with it - we removed that and she is on epival(has been on it for many years) with keppra....honestly, we think she should be on nothing - the seizures have a mind of their own. Any thoughts?

 
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Old 12-19-2011, 01:30 PM   #2
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Re: Keppra Rage after 3 years?

Maybe the removal of the Tegretol has something to do with it. Maybe the Tegretol was counteracting the imbalance that the Keppra brings.
But she probably should be on something. Just because the seizures have a mind of their own doesn't mean a medication won't work. It will probably be worse without anything. There are a lot of seizure meds to try. How long was she on the Tegretol and why was it removed? Maybe they should put her back on the Tegretol and take her off the Keppra and see how she is, and they might have to add another medication in. There are a lot of different kinds, and not all work the best for everyone. The first med I tried was Dilantin and it didn't help my seizures at all and gave me nightmares. They took me off that and put me on Tegretol. It helped but it wasn't enough so after a year or two of increasing the Tegretol, they added Keppra, which also helped a little more but not completely, and then eventually they added Lamictal, and now my seizures are under control. It might take a while to get her seizures under control, but you definitely have to try something else.

 
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Old 12-19-2011, 01:47 PM   #3
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Re: Keppra Rage after 3 years?

Thanks - thing is - she has been on everything there is in every combination.some we have tried twice...the longest she has ever gone without a large seizure was somewhere around 52 days and guess what - she was on nothing. Docs admit that nothing works. She was on the keppra without the tegretol before and no rage so strange that it is here now. It has been a very difficult day today with it and we feel so bad for her.

 
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Old 12-19-2011, 06:40 PM   #4
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Re: Keppra Rage after 3 years?

Yes have been on this med for a long time it's been awhile since i've been on itit has massave rage. I was terrible being on it, once I got off of it I was a lot better but the Tegertal I take does not help much either

 
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Old 12-19-2011, 08:58 PM   #5
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Re: Keppra Rage after 3 years?

Dear Mom to Rebecca,
I am so sorry for you and Rebecca and your struggle. Just very quickly, I just was found with epilepsy due to a stroke I had in 2010. I am on keppra and zonegran. I am new to this stuff since I just started getting seizures in June on this year and just started take keppra about a month ago. As far as your daughters rage - though it may seem weird coming out 3 years later, I don't think that is unusally from my very little knowledge that I know. I have been a very nice person my whole life and especially since my stroke, but since I started taking keppra I was ok. But one day my wife said I was mean, and I really did not even know it. I asked her if she was sure, because I am never like that and she said that I was. So, that has worried me. The thing that you say just take her off every thing (meds) does not sound like a bad idea to me. I am sorry to say that, but my whole life I have not take medicine, except natural and have done well. Now I am in this circle of hospitals, doctors and drugs that I can't seem to get out of now. So I understand you wanting to try stopping your daughter taking everything to let her own body heal itself. I am not telling you to do that. I am just telling you I understand your struggle and I wish we had an answer. My keppra makes me feel worse than my seizures, but my wife wants me to take the drugs. I said I would take for her sake so she doesn't have to see me in a grand mal again and call 911. But I wish you well. I am behind you whatever decesion you make. I am sorry for how hard this has been for you. I feel more sorry for my wife than myself for her worry for me, if that makes any sense. Maybe Rebecca feels the same way to you, so don't feel too hard on yourself. You love her and that is the best thing you can do.

God Bless,
Tim

 
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Old 12-20-2011, 05:05 AM   #6
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Re: Keppra Rage after 3 years?

Quote:
Originally Posted by Positive Cynic View Post
Dear Mom to Rebecca,
I am so sorry for you and Rebecca and your struggle. Just very quickly, I just was found with epilepsy due to a stroke I had in 2010. I am on keppra and zonegran. I am new to this stuff since I just started getting seizures in June on this year and just started take keppra about a month ago. As far as your daughters rage - though it may seem weird coming out 3 years later, I don't think that is unusally from my very little knowledge that I know. I have been a very nice person my whole life and especially since my stroke, but since I started taking keppra I was ok. But one day my wife said I was mean, and I really did not even know it. I asked her if she was sure, because I am never like that and she said that I was. So, that has worried me. The thing that you say just take her off every thing (meds) does not sound like a bad idea to me. I am sorry to say that, but my whole life I have not take medicine, except natural and have done well. Now I am in this circle of hospitals, doctors and drugs that I can't seem to get out of now. So I understand you wanting to try stopping your daughter taking everything to let her own body heal itself. I am not telling you to do that. I am just telling you I understand your struggle and I wish we had an answer. My keppra makes me feel worse than my seizures, but my wife wants me to take the drugs. I said I would take for her sake so she doesn't have to see me in a grand mal again and call 911. But I wish you well. I am behind you whatever decesion you make. I am sorry for how hard this has been for you. I feel more sorry for my wife than myself for her worry for me, if that makes any sense. Maybe Rebecca feels the same way to you, so don't feel too hard on yourself. You love her and that is the best thing you can do.

God Bless,
Tim

 
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Old 12-20-2011, 05:10 AM   #7
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Re: Keppra Rage after 3 years?

Hi Tim - thank you for all those kind words. We do feel that the best course is to remove her from the drugs as it does nothing for the seizures and almost feels abusive to put her through the side effects...she no longer has the quality of life that she had. We have had to come to terms with the downward turn of health for Rebecca. She just does not recover like she has in past years....26 years have taken their toll on her very fragile body. I am sorry to hear of your struggle. Your wife is so afraid of those nasty seizures which is understandable for sure. Never an easy fix with sezures that don't respond to meds. Somehow it is important to find some peace within it all....I wish you all the best. Thanks for responding Tim......Paula

 
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Old 12-20-2011, 10:59 AM   #8
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Re: Keppra Rage after 3 years?

If you haven't already, maybe you should work with her doctor to look into her diet for the cause of her seizures. I was just reading about Celiac Disease and Gluten Intolerance and the definite link between that and seizures. Maybe you should look into her diet and things she eats that she possibly has an intolerance for.

 
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Old 12-21-2011, 02:36 PM   #9
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Re: Keppra Rage after 3 years?

Yes - we took her off tegretol - did nothing...we tried it years ago and nothing then either....she is on 3500 mg/day and we start reducing today so will see how that works....the difficulty she has with the rages to us seems at times worse than the seizures. We really just use her neurologist as a phamacy and now feel better using her GP who looks at the whole picture and is very hands on and always available. For that we are sooooo thankfull. Thanks for your reply

 
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Old 12-21-2011, 02:39 PM   #10
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Re: Keppra Rage after 3 years?

Rebecca is very underweight - weighing just over 80lbs. We tried the keto diet and it is very difficult just getting her to eat anything so probably not something we would consider but thanks for the idea. Because she is developmentally challenged, she does not understand that she has to eat and putting in a feeding tube is not an option for her. Thanks again.

 
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Old 05-31-2012, 04:47 PM   #11
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Re: Keppra Rage after 3 years?

Quote:
Originally Posted by Krista2882 View Post
Maybe the removal of the Tegretol has something to do with it. Maybe the Tegretol was counteracting the imbalance that the Keppra brings.
I made the Tegretol/Keppra switch six years ago. While Tegretol does control moods in bipolar patients, Keppra is known to cause severe anger issues. If you take Keppra and Tegretol together - I only did that while making the switch - and you feel rage a lot, you can bet cutting out Tegretol is not the cause of your anger after that switch is complete.

Unfortunately I lost my job, ran out of Prozac, and switched from Tegretol to Keppra at the same time, so I did not get the benefit of figuring out if Keppra was the only cause of my emotional issues or stopping Tegretol also was part of it. The opposite switch - from Keppra to Tegretol - clarified it: Yes, part of it was stopping the Tegretol, but Keppra made it worse than if I only stopped Tegretol and switched to a nicer drug. Needless to say, I will always say very bad things about Keppra for the rest of my life.
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Last edited by Administrator; 10-05-2012 at 11:55 PM.

 
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