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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 - 21:34
Hi,He has not been evaluated for surgery, but I think he does not have that many seizures, in order to be OK for surgery, and I am afraid from a new surgery. Remebering what happend at the first one.thanksKatalin

RE: Depakote

Submitted by ermeszter on Mon, 2004-06-07 - 21:09
Thank you, for feeling with us. It is really a ruff time. MY husband's medication change occured in January this year, and I think they are keeping him on the high level, in order to not to have seizures. We checked his Depakote level last week, and it was 88, what is good, and he has not have any seizures since 26 days. As I said, he is now on Depakote 500mg 3x a day and 1250mg of Keppra 2x a day. I am praying, that he has no more seizures. (what a dream!) We have other problems also, he is terrified from falling, and can walk only with the walker and assistance. His balance is not good at all, leaning to the left. Is there anything it can be done? Some exercises? Thank you Katalin

RE: Depakote

Submitted by mommy2kyra on Tue, 2004-06-08 - 16:52
I have known a couple of people to have a stroke and slowly overcome the physical challenge, and that alone can be tough! But, when you add the threat of seizures it really is complex.I'm sure you know that strokes typically affect one side of the body (which is why dh leans to the left), and you can see a physical therapist to work on the side that is weak. Re-building hubby's strength and confidence can take a long time..but it can be done. You just need to make sure that dh is on the safest low dosage of meds as possible so that he actually has the energy and persistance to work on re-building that strength. If he's all doped up he isn't going to be doing those exercises.If you ever have any questions or problems with dh being on a certain med (or dosage), don't hesitate to talk with his neuro. And, with some doctors, you have to really put your foot down. YOU know your husband. YOU know how he reacts, so stand up for him when you need to. (Some doctors think that you're just some yahoo who doesn't know what the heck you're talking about, and that's when you have to insist on being heard.) Don't ever doubt yourself.Best of luck to you and your hubby...I hope that he remains seizure-free! Take care...Heather :)

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