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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 mommy2kyra on Fri, 2004-05-28 - 16:11
Wow...that's rough!! I really feel for you. Strokes can definitely cause seizure disorders, and that's like a double whammy! Depending upon where the scar tissue is located in your hubby's brain, different meds can help. I only have experience with a few of the meds your hubby has taken (dilantin, depakote, and now phenobarbital). Most meds do cause sleepiness, especially in higher dosages. It seems that his neuro always keeps him on the higher end of normal. Do they have him on the high end "just to be on the safe side"? Because, a med dosage has to be just right to work. Too low= seizures...but, too high can also equal seizures. If they have tried lower doses and they were too low to be therapeutic, then I guess you don't have much choice. You certainly can't risk him going into status epilepticus. Dilantin never worked for me, I still had seizures. Depakote was good for me (no seizures, and a lower dose improved my well-being), but I had to switch due to a rare side effect. Phenobarbital may be an option for your hubby. It has worked okay for me...but it does cause extreme tiredness and clumsiness, so you want to be on the lowest dosage possible. That is one thing I've learned, if I have a difficult time talking (forgetting what I'm talking about mid-sentence) and am stammering around falling into things, my dosage is too high. I wish that I had a magic answer for you, that would make your lives easier...but, I don't. I just hope that I've been able to help somewhat. Take care (of yourself too!), my prayers are with you both...Heather

RE: Depakote

Submitted by e_nuffofthis on Tue, 2004-06-01 - 08:47
I'm so sorry for all you are going through. Unfortunately with meds you just have to keep trying. But what I wanted to say is if he had been evaluated for surgery to remove the scar tissue. If your doc now won't consider it, please get more opinions.

RE: Depakote

Submitted by GKT on Tue, 2004-06-01 - 14:17
Not being a doctor (and each case is different) ... I can only say "keep trying." (As hard as that is to hear!!)But I do want to agree with e_nuffofthis and say, "Get another opinion."

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