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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 USMALE on Mon, 2004-06-14 - 11:45
GKT,You Just did, more than enough.USMale

RE: Depakote

Submitted by ermeszter on Sat, 2004-06-12 - 23:27
Hi USMAIL, Thank you for answering and giving me support. Everything is easier if you can talk about it, and in this comunity, you all have experience and knowledge, at least about your own medications. The device what I am looking for, should be only for the night, because during the day the caregiver is there; and in the evening, and night - holydays and weekends I am home. We don't let him alone for no time, only if he is in the recliner, he cannot get up, and cannot walk. (In short words, he cannot do anything alone.) So he is safe from falling. He fell one time from the toilet, during a seizure, and busted his head open, ended up in the ER with a 50 minute seizure, and 5" of stiches. Since that time, we don't leave him alone in the toiet either. He had several other seizures on the toilet, always in the morning. I am terrified that he has a seizure during the night, and I don't hear him. He had one time a seizure at 3:00 AM, I woke up, who knows how, called 911, and he ended up in the ER and ICU again. If the seizure would be small, it is OK, but what if he goes into status epilepticus?He is always very sleepy, and extremley tired. I think this comes from his medication. The last longer seizure was on December 12, 2003, after the medication change his seizures lasted only 2 minutes or less. I know the seizures never will go away, but I hope now, that they last only for a few minutes. Are you now on Depakote? and how frequent are your seizures? What kind do you have?I read a few postings, and felt terrible about that young boy who has 100 seizures a day. I am so sad, we cannot do much for him, the only thing I think we can do is pray.Thanks againKatalin

RE: Depakote

Submitted by USMALE on Mon, 2004-06-14 - 11:42
Katalin,The device that comes to mind isn't a device at all. I haven't done any research into this yet, I probably should before suggesting it, but, I've seen it mentioned on this site. Have you looked into the possibility of a seizure dog? Like I said, I I haven't done any research into it myself, but you can find some info about them here on epilepsyDotcom. If anyone else has suggested this and I've missed it, my apologies. If I think of anything else, I'll let you know.To the best of my memory, I haven't been on depakote. But, that's to the best of my memory. I've been on so many different meds over the years it's kind of hard to keep track at this point. When I was initially diagnosed, my parents were "in charge" of that area even though I was 14, they were afraid that I might skip a dose or two and didn't want to take any chances. I used to have What were called at the time both petit-mal (now Absence) and grand mal (tonic clonic). It seems that I have outgrown the "little ones" though or, at least nobody has noticed one for years, including me. I still use the old names, so I had to stop and look up the current ones. Right now, I hope that I'm back under control. My most recent seizure was on May 2. We'll see what happens though. One day at a time right? I've been lucky I guess. I don't remember having more than one in a day. I think the most frequent that I've had to deal with was once in 2000 when I had a bad couple of months and had one on 2 consecutive days, but that was the closest together. During the rest of that time, they were from a couple of days apart to a week apart. It was a depressing time. I was starting to get worried as well, because I was living alone, something which had never bothered me before. Finally, the pharmacy listened to reason and I was back on the brand name. Then the seizures started getting further apart. Even with that experience, I'm determined to come off of the dilantin if possible. My doc (she's the greatest!), basically says probably not, but let's see what we can find. So, at the beginning of the year she suggested a minor change. Phenytek. I said let's do it. Well, it's now 24 days that I'm back on the dilantin. I must have a really strange system. It seems that the only Phenytoin that will help control my seizures is the Brand name Dilantin. After the first breakthrough seizure, she wanted me to go back to the Dilantin. I told her that we knew that this was a possibility and that I wanted to give it a chance. Even though we agreed that if there was another one, I would call her and immediately switch back, You might say that I broke the deal. When she saw the sheepish look on my face, at my next appointment, she simply asked me "How Many?" I guess some would say that I'm crazy, that I should leave well enough alone. But I'm looking forward to the next possibility. I feel that if I've been on this medication for over 30 years something more effective is overdue to come along. Maybe it will be that next drug. If I'm just hoping for something that will never happen, well, as I always say, hope is free, right? Anyway, there I go again, running off at the keyboard. Now, I have to read you the riot act... You really don't know that the seizures won't stop. That's a defeatist attitude. I have to let the cat out of the bag now about my age. I'm 45. If I felt that way at 14. I never would have made it to this "old" age. I intend to be around A LOT longer. You never know what's going to come along, or what will happen. Today my doc says I'm not a candidate for surgery. Tomorrow, she might say there's been a new development in surgery and we might be able to do something here. I might be kidding myself, but guess what, I've always enjoyed a good joke. All we have is the hope that tomorrow will bring us something new. Think POSITIVE. Tell hubby I said that too. Always think positive. I know it's hard. Especially with what he's gone through only to wind up with this cross to bear as well. First, Just because somebody has a disability (from what they tell me, epilepsy is a disability), it doesn't mean that they have to be disabled. Although a couple of doctors I have run across recently would disagree with that statement, that's how I've lived my life. Will the seizures ever end? Hopefully. Until then, we all just do what we have to do to deal with them in a mature and intelligent manner. Believe me, I do understand how you feel. Because of my recent breakthrough seizures, I can't ask my mom anything about my early treatment. If I do, the first words I hear are a worried "Why? What's wrong? Is everything okay?" And the look on her face is one of almost panic. I don't want to put her through that. If something were to happen, she knows what to do and acts appropriately. But I can see that a seizure bothers her more than it bothers me. I understand why this is. I'm still her child no matter how grown I am. So I can surely understand how seeing your husband go through HIS tears you up. I know that you feel helpless because there's really not much that you can do for him. But you're there for him. If he has a seizure at night or even during the day and you don't hear it because you're in another room and/or asleep guess what? It's not your fault. It's not his fault. There's no blame to be had. There's no guilt, so don't feel any. I know it's easy for me to say. I used to tell my ex-wife the same thing all the time. You're going to worry. That's a fact of life. When the seizures start getting more and more distant, the worry will fade. Probably not completely, but enough for you to be able to breathe easier. You'll make it through this. Epilepsy isn't the end of the world. All that I can offer is hope. Positive thinking is good medicine. I'm probably starting to sound like a broken record, but until that "wonder drug" comes along, it's one of our best defenses. Sometimes it works wonders. Sometimes the body will overrule it, but what can it hurt? Something just hit me about your letter, like a ton of bricks. You said that "He had several other seizures on the toilet, always in the morning." and "He had one time a seizure at 3:00 AM..." This reminds me of my seizures. I'm going to go out on a limb and say that when he had the one at 3:00AM he had been asleep and had just woke up to use the bathroom or something (probably not much of a stretch considering the time of morning)?I'm going to ask you to look for a pattern. Do they all have something in common as far as when they occurred? You see, every one of my seizures has followed a specific timing pattern. Every one has been, If not in my sleep, within a certain amount of time after I wake up. It hasn't mattered if it was from sleeping all night, or a few minutes. It has always been within that time period. I used to think that I was unique in that area, but the more that I've read, I see that I'm definately not alone. If you do see a pattern, inform your husband's neurologist. He could be one of those who consider it helpful information.Good luck and best of Wishes to you and your family.

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