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Depakote

Tue, 08/10/2004 - 21:50
Hi, I am new to this comunity, and I need some support.In December 2002 my husband had a scheduled aneuryzm surgery. 3 days later he had a stroke, was in coma for 15 days, and paralized on his left side. Doctors put him on Dilantin 300mg a day. This medication worked pretty well at the beginning, and he did not have seizures, but later on his Dilantin level was very unstable, and every time it was out of the therapeutical level he had seizures. As you know the free level is therapeutical btw 1-2, and the total level is btw: 10-20. These seizures lasted sometimes 30, 40, and 50 minutes, so we ended up at the ER, and in the ICU with status epilepticus. Every time they knocked him out, because they were not able to stop the seizures otherwise. What was stange in this seizures, he was always conscieus, you talked to him, and he aswered your questions. In 2003 he was more at the hospital, and rehab centers than at home. They changed his medication several times. First Dilantin, than Keppra, than Dilantin again, than they added Topomax to his Dilantin. This last combination was on for a long time, but because he was still having this long seizures, some doctor called it grand mal, some other partial tonic clonic seizure, doctors changed again medication. Left him on Dilantin and added Trileptal. This combination was no good either, then they eased him off of Dilantin and added Keppra. I think the best combination for him was Trileptal and Keppra, because he acted like as he was before the surgery. But doctors changed again (in my opinion for some mistake,because they thought he had a seizure, and he did not) and we ended up with Depakote and Keppra. Now he is taking 1250mg of Kepra 2x a day and 500mg of Depakote 3x a day. He is very sleepy, sleeps from 8PM to 8AM every day, sometimes longer, and takes other naps during the day, and now lately he has difficulty walking with the cane, or walker and has difficulty transferring to the wheelchair or bed or toilet. The last time we checked, his Depakote level was 100.33, still acceptable, because the therapeutical level is btw. 50-100. I kind of don't like Depakote, but I am afraid of a change, because he still has some seizures, about every 2 weeks, but they are now 2 min or less. He was disabled after the stroke, but rehabilitation get him back, almost as he was before. Then the seizures started, and he was not able to walk again, he is very week. Doctors say, that the scar tissue in the brain causes these seizures. He cannot be left alone, I have a lady who is watching him during the day, when I work. He stilll has therapy, but if it is after a seizure it seems that he made 1 step forward and two steps back. His Neuroligst gave us Diastat, what is a great medication: it is a rectal gel (valium), it has to be given only if the seizure is longer then 5 min. Wherever we go, I take it with me. I had to use it one time, and have to tell, it stopped the seizure instantly.Sorry to bore you, but perhaps sombody has some suggestions, and support for me.ThanksK

Comments

RE: Depakote

Submitted by ermeszter on Tue, 2004-06-08 - 23:35
Well, so much for being seizure free, he had a seizure this morning, and I did not wake up. This time not even the dog heard him. This terrifies me, because if he has a seizure what is longer, and I could not hear him, what will happen. I was looking for a device, what could allert you, if he has a seizure? Does something like that exist? I asked around, but nobody nows anything.You are right, his situation is very complex, the stroke and later on epilepsy. He had several falls, a bleed in the inner brain, what was 3cm big, than an other fall, what caused a hydrocefalus, had burr holes, which did not work, and finally a shunt. July 2003 he started having the seizures, what lasted 30 to 50 minutes. Now his seizures are about 2 to 3 minutes. I agree with you, that doctors and nurses think, you are an idiot, during this time I beame a different person. I saw so many errors in the hospitals and rehab centers, that you cannot immagine. there were several places, where I had nothing but fight. About medication: wrong dose, wrong time, not checking his levels, and if they did they did not check how the level was. I am wondering does it happen to other people also, and they do not know it, and I am the only one catching it? I could write a book about it. Thanks God, his neuro does not think I am an idiot, and listens to me.The execises are going OK, but as soon as he has a seizure, his left side becomes very week, weeker as it already is and kind of we have to start from the beginning again. Soon therapy will stop, because BCBS pays only 60 a year. At home we are doing exercise also, and hope for the best.I wish you the best, and pray for you all.Thaks againKatalin

RE: Depakote

Submitted by jdrummond on Sat, 2004-07-31 - 07:48
I take both Dilantin and Depakote ER to control my seizures. According to the doctor, my seizures are difficult to control. I take 300 mg of Dilantin and 3500 of Depakote ER. I used to take regular Depakote. The ER doesn't make me as sleepy. I have had seizures since I was a teenager. I'm 40, now. I've been on every medicine combination possible!!!

RE: RE: Depakote

Submitted by ermeszter on Sat, 2004-07-31 - 20:45

Hi,

Thank you for letting me know, that Depakote ER does not make you so sleepy. I think my husband's zeisures are difficult to control also.  He is now on Depakote 1500mg total, 3x 500mg a day; and Keppra 3000mg total, 2x 1500mg a day.  He is very speepy and very tired.  He sleeps every night from 8:00 PM  to 9:00 AM, sometimes longer, and takes several naps during the day.  I wake him up at 10:00 PM to give him his Depakote, and at 7:00 AM Depakote again and at 8:00 AM  Keppra and all the other ones what he gets, after that he falls asleep again.  Now his seizures are a lot shorter, then before.  Last year before they changed his medication, he was on 350mg of Dilantin and 50mg of Topomax.  Then his seizures were 30, 40, 50 minutes long, we ended up all the time at the ER. He has a combination btw. stroke and epilepsy and they say that the scar tissue from the stroke is causing the seizures.   He cannot walk alone, not even with a walker, to transfer to the chair, sometims it takes all my strenght.  Is this from  epilepsy or from the stroke?  After a seizure he is so tired, that he cannot move at all.  Dilantin was not working for him at all, because the levels were very unstable. 

What makes me wonder, after the stroke, coma and paralisis on the left side, my husband recovered pretty well, and was walking alone with no help.  After about 6 months, the seizures started, and we got back to scratch again! 

What kind of a seizures do you have, how long do they last?  Do you remember anything?  Are you week after the seizures? How many times a month?  Escuse me if I am asking all this questions?  You do not have to answer.

 Thank you again and good luck to you, my prayers are with you

Katalin

Hi,

Thank you for letting me know, that Depakote ER does not make you so sleepy. I think my husband's zeisures are difficult to control also.  He is now on Depakote 1500mg total, 3x 500mg a day; and Keppra 3000mg total, 2x 1500mg a day.  He is very speepy and very tired.  He sleeps every night from 8:00 PM  to 9:00 AM, sometimes longer, and takes several naps during the day.  I wake him up at 10:00 PM to give him his Depakote, and at 7:00 AM Depakote again and at 8:00 AM  Keppra and all the other ones what he gets, after that he falls asleep again.  Now his seizures are a lot shorter, then before.  Last year before they changed his medication, he was on 350mg of Dilantin and 50mg of Topomax.  Then his seizures were 30, 40, 50 minutes long, we ended up all the time at the ER. He has a combination btw. stroke and epilepsy and they say that the scar tissue from the stroke is causing the seizures.   He cannot walk alone, not even with a walker, to transfer to the chair, sometims it takes all my strenght.  Is this from  epilepsy or from the stroke?  After a seizure he is so tired, that he cannot move at all.  Dilantin was not working for him at all, because the levels were very unstable. 

What makes me wonder, after the stroke, coma and paralisis on the left side, my husband recovered pretty well, and was walking alone with no help.  After about 6 months, the seizures started, and we got back to scratch again! 

What kind of a seizures do you have, how long do they last?  Do you remember anything?  Are you week after the seizures? How many times a month?  Escuse me if I am asking all this questions?  You do not have to answer.

 Thank you again and good luck to you, my prayers are with you

Katalin

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