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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 GKT on Wed, 2004-06-09 - 14:31
Katalin: Something occurred to me about the stroke your husband had. In September 2001, I was teaching a class in the evening (so I knew exactly when it began), I felt very strange and was having difficulty speaking. After making the determination that if it was a stroke, I better waste no time, I asked my husband to take me to the hospital. Between the hours of 7 PM and about 10:30 PM I had difficulty speaking, they performed a CAT scan and sent me home, told me to see my doctor the next day. He said, "These things happen and may never happen again."In August 2003, I had a seizure and was taken to the hospital. They again ran a CAT scan and admitted me immediately. They had found something on the brain. That same day I had two more seizures and ended up spending four days in the hospital. They ran lots of tests and the evening I went home I was told it looked like I had a brain tumor (glioma).Long and short of it ... I learned how to be an aggressive patient (not at all like me), but no one was doing anything! When a second MRI was done, there was nothing found. Then it was explained that the "spot" on my brain during the seizure activity could have been caused by an old stroke. (I hadn't thought about the September 2001 visit to the hospital until considering your husband's condition.)I'm now on different medication, and it is believed I had a seizure on April 20, 2004. But the Depakote (1,000/day) makes me have tremors! I feel like I'm becoming a whiner, but I just want to be "normal" or "semi-normal" again.When I told the neurologist that I'm shaking like a leaf he said, "Would you rather have seizures or tremors?" But at my June 25 appointment, I'm going to insist we try something else.I must have needed to vent. Thanks for listening.GKT

RE: Depakote

Submitted by ermeszter on Wed, 2004-06-09 - 23:03
Hi GKT,Sorry to hear about your ordeal, I know exactly what does it mean, if you feel nobody is doing anything for me. The same thing happend to me, I was a very shy person, now I am a LION. Yes you are right, you must have had a stroke in 2001, only they did not see it. And the scar tissue from the stroke is causng your seizures. There is a possiblity, that you can get a copy of all the X-rays, MRIs, and CT cans you had, and bring them all to your neurologist, and he could take a look at them and determine if it was a stroke or not. It is worth, because it is an other opinion. You have time until June 25th to get them all. It is enough if you call the hospital, and order them, they tell you when they will be ready for pick up. Do you still have difficulty speaking? or this was only at the beginning? Did you receive any speach rehabilitation? This is very important, if you did not, you can still have some. Stroke patients can improve for years. There are neoro-psychologist around, perhaps they can help you. I am not to sure about the tremors, how often do you have them, and how long do they last? Before the Depakote and Keppra my husband had always full blown seizures, with jerking to the left side,( being conscious all the time,) wich went into status epilepticus. Your seizure on the 20 April, how was it, how long did it last? Have you had only Depakote as medication? I think for my husband Trileptal + Keppra worked very well, but every person is different. His stroke was on the right side.As you can see I have always 1000 questions, and I do this with the doctors also. SorryI wish you good luck, and definitely try to change the medication, because Depakote, does not let you feel well. Tere are now so many medications around, I don't understand why your neuro is sticking to this one.Good night, my prayer is with you.Katalin

RE: Depakote

Submitted by GKT on Thu, 2004-06-10 - 09:56
Hi, Katalin. Well, I was trying to give you the "short story." The FACTS are ... I had epilepsy as a child (3rd grade on). When I was about 18, they thought there was a chance I had outgrown it. When I was about 25 (after I had had my two children, thankfully), I began to have seizures again and have been on Dilantin since then (25 years!).When I had the "stroke" (or whatever) in 2001, the doctor had me start taking an aspirin a day. We watch the Dilantin level and monitor the dosage.Each time I've had difficulty with speaking, it's been during and for about 20 minutes following the seizures (no long-lasting circumstances).In 2002 it was discovered that I have MALT Lymphoma in my lower stomach. This is a whole new, seperate issue ... they treated that by antibiotics to get rid of the h.pylori bacteria, but in a small percentage of cases, that does not get rid of the Lymphoma. Guess what ... I was in that percentage, so this past March I underwent radiation therapy the whole month (Mon-Fri). We have to wait until October for the stomach to be healed from the radiation therapy so they can go back in to take a look to see if it's gone. It's not awfully threatening, because if it's still there (which I doubt), then they can treat it with chemo.So (back to the seizures), in April the type of seizure I had was very different than the others. I got totally confused and didn't know where I was or where I was going. Fortunately my husband was with me and he led me back to the car and we saw the neurologist that day. When the neurologist said, "You've had another seizure." I broke down and cried (enough of this!!).Anyway, as to your suggestions about taking all of the records to the neurologist to see, I did that on my first visit. (That was when I switched from a different neurologist that was completely ignoring me.)So, there's my story to date (I think) ... I'm waiting for my June 25 appointment to see if he'll agree to change the prescriptions.Thanks so much for your concerns.GKT

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