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  #1  
Old 10-15-2009, 08:56 PM
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looking for help please


Hi dont no where to start ,, my Daughter was knocked down when she was 7 years old ..she is now 30 years old ...she had two blood clots in the brain ...,once she gave birth to her son she started taking seizuers 8years ago ..she is on Tegratol and Keppra ..at the moment she is in hospital with them ..now when she is taking them he is so confused ,her total character changes ,says people are talking about her ,hears things ,its just a total nightmare iam worried about her in case she is going to be left like this ...nothing makes sense ..she allways had bad memory after them but its like all differnt now after these last two ones she has took ...i have said to nurses i would like her to get a scan as she hasnt had one done since her accident when young girl..bt all they seem to do is just up tablets till the next time ...next time might be to late iam worried and broken hearted about my lovely daughter dont no what iam going to do ..
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Old 10-15-2009, 09:00 PM
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Hi whisper! Welcome to CWE. You mentioned a change in her personality since the meds. This is NOT uncommon in people who take KEppra. The slang term for it is "kepprage". Some people find that a vitamin B6 supplement helps immensely. You say that the seizures started after giving birth. Has she told her neurologist that? Hormone shifts can trigger seizures, and they can also be treated with the use of hormone creams.

Memory issues are unfortunately common in people with seizures. It's partially due to the meds..as well as the seizures themselves. My suggestion, because it helped my memory improve, would be fish oil capsules.

Hope this helps. Feel free to ask questions, chime in, or just vent when needed. We're here for you.
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  #3  
Old 10-15-2009, 09:41 PM
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Welcome whisper


There's a lot of parents here whom I'm sure can share how you feel.

Me, I've had seizures all my life & yes.... all the medications seem to effect personality. I've actually wondered how much of my personality is really mine & how much of it is imposed by my meds (Tegretol right now).
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Old 10-15-2009, 11:17 PM
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Hey whisper --

Is there any way you and your daughter can talk your daughter's neurologist/doctor to get some advice and information about what's going on? It sounds like her meds aren't working or might need to be changed. If you can, write down everything you've noticed about how your daughter's behavior has changed, when she's having a seizure and also when she isn't. Write down any questions you have too, and try and schedule a consultation if at all possible.

I hope you and your daughter get some answers soon.

Best,
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Old 10-16-2009, 03:58 AM
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I agree... each of the meds that my daughter was on changed her personality. She never tried keppra though. It is also recognized that a change in blood sugar levels can also change mood and personality.
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Old 10-16-2009, 10:52 AM
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Originally Posted by whisper View Post:
Hi dont no where to start ,, my Daughter was knocked down when she was 7 years old ..she is now 30 years old ...she had two blood clots in the brain ...,once she gave birth to her son she started taking seizuers 8years ago ..she is on Tegratol and Keppra ..at the moment she is in hospital with them ..now when she is taking them he is so confused ,her total character changes ,says people are talking about her ,hears things ,its just a total nightmare iam worried about her in case she is going to be left like this ...nothing makes sense ..she allways had bad memory after them but its like all differnt now after these last two ones she has took ...i have said to nurses i would like her to get a scan as she hasnt had one done since her accident when young girl..bt all they seem to do is just up tablets till the next time ...next time might be to late iam worried and broken hearted about my lovely daughter dont no what iam going to do ..
Hi whisper,

Do you happen to know the dosage of the meds your daughter is taking? If the doc continues to up the dosage of the Tegretol or Keppra, they may become toxic, therefore causing her to "hear things", behave abnormally, become very depressed, etc. Has the dr. checked her Tegretol level lately?

I'm currently taking Keppra, 3000 mgs. and have my struggle with depression off and on, but I also take an anti-depressant along with it.

I hope your daughter and you find some answers soon.
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Old 10-20-2009, 04:17 AM
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They are now taking my Daughter of Keppra reducing it gradually she has only been on it couple of months 1,500 two times a day ...they think maybe they could be causing her to hear voices in her head .while her stay in hospital she was saying to nurses they were reading her mind could hear her dog barking in corridor ..it only has started since he was on keppra after a seizuer....she is also on Tegratol 1,500 three times a day

i also have noticed she is depressed very down ..she is uaslly a bubbly girl

Last edited by whisper; 10-20-2009 at 04:22 AM.
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Old 10-20-2009, 08:36 AM
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I would take control of my daughter's care. If she is not getting better something is not right. I have tried a lot of meds but the most they did was put me on my back with dizziness and nausea. You need to know what and how much they give her and why. Mom if you know something is wrong, then its probably wrong.
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Old 10-20-2009, 01:36 PM
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You must know what is "normal" for your daughter and what is drug related. Problem is she is 30 yrs old. I guess you would need to get in writing what she wants and find a doctor that understands her wishes.
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Old 10-21-2009, 01:59 PM
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Hi Whisper,

welcome to CWE. Bernard started it out of love for his wife, Stacy.

I am on Keppra. I take 2500 mg a day. My neurologist is talking about me taking one less a day. My neurologist told me to take Vitamin B Complex once a day. Try that.
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Old 10-21-2009, 04:11 PM
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Old 10-21-2009, 08:06 PM
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I did not ask my neurologist that question. Keppra must deplete Vitamin B from your system when you are on Keppra. Ask your neurologist. A lot of people here, who are on Keppra, take Vitamin B.

I was on a topic about Keppra and everyone agreed.
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Old 10-22-2009, 11:25 AM
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What happened to the segment on 60 minutes Sunday night? I did not see it.
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Old 10-22-2009, 11:37 AM
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I think I may be on to something. I am on Lisinopril for high blood pressure and have been since February. I have noticed I am very sensitive to the sun. I got very hot the day before I had by event. One of the side effects of this med. is seizures. I have told every doctor I have been to and they think nothing of it. They see no relation of the two incidents. I even called the FDA and spoke to someone. I received my info from webmd off the internet. I thought my feeling of dizziness in the sun was my epilepsy meds. It may be the Lisinopril. I would love to hear what any of you would say.
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Old 10-22-2009, 06:19 PM
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Originally Posted by epileric View Post:
There's a lot of parents here whom I'm sure can share how you feel.

Me, I've had seizures all my life & yes.... all the medications seem to effect personality. I've actually wondered how much of my personality is really mine & how much of it is imposed by my meds (Tegretol right now).
I have sat up at night thinking about the same thing for hours. I am on the same med
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Old 10-24-2009, 08:29 AM
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When Jennifer was on 1,000 mg keppra daily, it was the scariest time Ive had so far. She had 2 incidents that made me almost lose it! Once she started screaming, when I got to her she told me she just saw herself at her window shooting herself in the head.. ok.. not good... 2nd time shes screaming in the shower, tells me she sees herself wrapping her head in saran wrap.. ok...not good. We lowered her to 750 mg keppra and those "thoughts" did stop.

This "strange E trip" we're on, doesn't come with a one size fits all fix. Any improvements we've had came from us figuring things out and kinda "forcing" Dr's to take action. It is so important to let these Dr's know what is going on as otherwise they will just think "you are fine".

She is on 500 mg keppra now and does well with it. I hope things get better for you*

joan*
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Old 10-24-2009, 08:37 AM
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Originally Posted by Jackie Watson View Post:
What happened to the segment on 60 minutes Sunday night? I did not see it.
I do not know Jackie, I did not see it either.
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Old 10-24-2009, 10:40 AM
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Originally Posted by Jackie Watson View Post:
What happened to the segment on 60 minutes Sunday night? I did not see it.
I thought it was on tomorrows (Oct.25) 60 minutes
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Old 10-24-2009, 11:29 AM
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Yup, it's on tomorrow's 60 Minutes. I'm planning to watch.
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Old 10-30-2009, 05:22 AM
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My daughter is on 725mg keppra twice a day as there are with drawing her from her one tab every two weeks ..next week she will go down to 5oomg ..i made a mistake on earlier post she about her Tegratol she is on 500mg three times a day ...and they put her on 10mg Temazapam every night ..but she says she has been having nightmares ..dont no ifit is them or other meds ...she still hasnt been right since last seizure ..still paranoid ...and what she talks about at times doesnt makes sense...it is very sad and she knows it doesent make sense it frustrates her ..i will have to say to her doctor about vitiam b every one is mentioning ..thankyou ...i feel she couldnt cope on her own yet with grandson ..i have her with me ..sometimes it is like she is child like ...when she was at home before this episode i have to get on to her about house work ..i feel she cant even cope with that ..nightmare


she got put on Keppra on june and took a seizure in july and september it has been the last two seizures that she has been hearing things , Paranoid change and of character this is why they are taking her of keppra ..

Last edited by whisper; 10-30-2009 at 05:31 AM.
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