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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 Mon, 2004-06-07 - 21:31
Hi, As you can see I am new to this site, and do not know, if I have to answer everyone or, I can answer only in one reply.In this year and half we had so many opinions, that is not even funny. I know --- one more could make the diference. We went to 8 different doctors, the one I really liked, and thought, she is the best doctor, and had my husband on the best combination of seizure medication (in my opinion), she has no office anymore, she is only in the hospital, but you are right, we have to keep trying, only this way he will get better.ThanksKatalin

RE: Depakote

Submitted by GKT on Tue, 2004-06-08 - 09:53
Katalin: This site allows folks with epilepsy (or family members attempting to deal with their loved one's situation) to vent ... to ask questions of others who have been there (and/or are still there).Some may hesitate to respond because most of us have been switched around on medications, (personally, I'm not happy with what I'm on).Some of us (me included) have had what's happened to you with a favorite doctor no longer being available. If you felt that your husband did best on the medication prescribed by the doctor that's only in the hospital, why don't you mention it to his current neurologist? Believe me, I've learned the doctors need (and want) our input!I wish you the best.GKT

RE: Depakote

Submitted by ermeszter on Tue, 2004-06-08 - 23:33
Hi GKT,I think this is a great site, it helps people, and it helps me vent off some fair and anger. I understand that people do not answer, because before I posted the first time, I hesitated a lot. Should I or should'nt I write about us. I was very ignorant, at the beginning of this ordeal, and think that most people are like I was. Did know a little bit about stroke and epilepsy, but now after a 1 1/2 year of research I learned a lot, from what I learned and saw I feel with all of you, and wish you the very best. I know very well my husband, and how he responds to medication. This neurologist whom we have now, was a referral from my favorite lady doctor. I told him right away, about the combination he had, but the doctor's answer was: they changed his medication now, lets wait an see.What kind of medication do you have? Can I help you with something? Thanks againBest wishesKatalin

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