The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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 Thu, 2004-06-10 - 23:33
Hi GKT, I had to laugh when I saw the beginning of your letter " I was trying to give you a short story" ... Yes, you were, but you did not know me, with my thousands of questions. My husband and my daughter used to tease me because of that. Now, that you told me your story, I am kind of speechless. I wish my English would be good enough, to express my sorrow, but you understand what I am trying to say. You will be always in my prayer, and I think about all of you very often, and wish I could help more then just writing to you. About your radiation therapy, I am confident, that the Lymphoma will not be there anymore in October, when they will go in and look "at the place "wehre it was!!!!!!!! Was it very hard to endure all that radiation? But now it is over, and all that counts, you will be OK again. You know sometimes it is OK to cry, it helps you vent off and calm your nerves. I do that too, when I don't know anymore what to do. Regarding your seizures, the last one was, I think absence epilepsy, I think they treat all te seizures the same way, only with different medication. Am I right? Good luck again on the 25th. I have to go now, it is getting late, and tomorrow arrives very fast. Good night. Katalin

RE: Depakote

Submitted by USMALE on Fri, 2004-06-11 - 11:52
Katalin,I know it's rough. Dealing with some of the so called Medical "professionals" out there only makes it harder. These are the ones who suffer from what I call "How Great I Art Complex". From the Paramedics & EMTs who insist on restraining seizure patients to Nurses who think that they're doctors to doctors who seem to think that the medical degree on their wall makes the a god, we're going to run into them from time to time. We just have to learn how to handle them. It's unfortunate because there are some truly excellent, caring and skilled professionals out there and a lot of times we don't get them first. That said, the medication issue is a complex one. I have been on so many different meds and combinations of meds over the years, I can't remember them all. Still, the longest I have been without a seizure was 2 years 2 months and a few days. I don't expect them to ever stop completely unless there is a new drug discovered. Believe me I'm willing to try anything new. It'll take a while and it'll probably seem like an eternity, but some sort of control is on the way. It sounds like it already is coming. It'll take work and consistency. Short of asking your husband to wake you up when he wakes up and always staying in the same room with him, I know of no alarm or any other type of device to alert you to a seizure. That would be very cozy, but you would start to get on each other's nerves pretty soon. If he is injuring himself and the seizures are still lasting so long, you might consider placing intercoms (the baby monitors) in the areas which are the most concern. The fact that you're there for your husband and supportive is more help to him than you know. A lot of the time those of us dealing with medical problems fail to let our loved ones know this. I guess we figure that you already know this and we don't have to remind you or something like that. But it does help. Sometimes I wonder what helps more, the support from my family or the medication....Don't ever stop asking questions. Asking questions is actually what woke me up to the pattern my seizures followed. Up untill that point I could never be sure that I would not have a seizure outside of the house. Although nothing is guaranteed, I know that I can leave the house without that fear as long as I follow the time restrictions I have set for myself. Questions are always a good thing. In my own opinion, the only stupid question is the question that nobody bothers to ask. I ask.Good luck to you and your whole family. I hope this gives a little bit of support, I understand what you're dealing with is scary and very stressful. Stay strong cry when you need to and laugh when you can. You're allowed to be human.

RE: Depakote

Submitted by GKT on Fri, 2004-06-11 - 14:20
USMALE: I can't say, "Thank you" enough. Your message was truly inspirational!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.