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 WashkuhnR on Wed, 2004-08-04 - 19:22
I've had a lot of experience with different drugs. One thing I have told my doctor is what good does it do to not have a seizure if you can't live a reasonable life. I've told her I wouldn't take stronger medication and I insist on changing medication if one makes me feel to uncomfortable. Watch that dilantin doesn't cause problems with his teeth and gums because it probably will. Write to the drug companies and tell them you can't afford the drugs and sometimes the cut the costs. Be careful with generic drugs because what a drug store does is get its generic drugs from the cheapest provider, and a certain size drug from one company does not have the same strenght as the same size from a different company so I always take name brand drugs. Even though there real expensive, why go through all that testing if you are just going to take something of any strenght?

RE: RE: Depakote

Submitted by ermeszter on Wed, 2004-08-04 - 22:15

Hi Robert,

You are almost right, that being to drugged is not  good, but in my husband's case I am afraid of everything.

I watched him having this seizures, lasting 30, 40 or 50 minutes,  his heartrate at 150 sometimes ( I was thinking he could have a heart attack every second), could not bread and asked for oxigen, going into status epilepticus being avare of every thing, talking to me during this time.  After the paramedics gave him valium and ativan, the seizures still did not stop, and he was still conscious, until they knocked him out at the ER, in order to stop his seizures.  After that they had to intubate him, because his breading slowed down to much, then he went to the ICU, was there for 3 or 4 days, got MRSA, then antibiotics, and this every time.  So every time he has a seizure, I freak out, hoping it will not be to long.  It is terrible frightening and a heart acking situation to watch somebody have a seizure like that.

Last year we were more at the hospitals and rehab centers then at home. So I became a fighter, and beleave me I had to fight, in every hospital and rehab center.  Some place less some place more,  in one place a doctor told me: "I wish my wife would fight for me like you fight for you husband."

So I am afraid of any medication change, and live with the being drugged a little.  For now he is getting Depakote and Keppra, and thanks God there is no generic available for this 2 drugs. For now with the company I work, we have prescription coverage, and my husband is covered with me, that for now, what will be later, who knows, but thank you for the suggestion to call the drug companies, for a better price. I don't even know, how much this drugs cost, do you? 

Katalin

Hi Robert,

You are almost right, that being to drugged is not  good, but in my husband's case I am afraid of everything.

I watched him having this seizures, lasting 30, 40 or 50 minutes,  his heartrate at 150 sometimes ( I was thinking he could have a heart attack every second), could not bread and asked for oxigen, going into status epilepticus being avare of every thing, talking to me during this time.  After the paramedics gave him valium and ativan, the seizures still did not stop, and he was still conscious, until they knocked him out at the ER, in order to stop his seizures.  After that they had to intubate him, because his breading slowed down to much, then he went to the ICU, was there for 3 or 4 days, got MRSA, then antibiotics, and this every time.  So every time he has a seizure, I freak out, hoping it will not be to long.  It is terrible frightening and a heart acking situation to watch somebody have a seizure like that.

Last year we were more at the hospitals and rehab centers then at home. So I became a fighter, and beleave me I had to fight, in every hospital and rehab center.  Some place less some place more,  in one place a doctor told me: "I wish my wife would fight for me like you fight for you husband."

So I am afraid of any medication change, and live with the being drugged a little.  For now he is getting Depakote and Keppra, and thanks God there is no generic available for this 2 drugs. For now with the company I work, we have prescription coverage, and my husband is covered with me, that for now, what will be later, who knows, but thank you for the suggestion to call the drug companies, for a better price. I don't even know, how much this drugs cost, do you? 

Katalin

RE: Depakote

Submitted by Tany on Sun, 2004-08-08 - 23:45

Hi

katalin cristofaro  This is Tany From Atlanta and I have Grandmals i used to take the pills that your husband took the daltin that you said it was not that to good they change in to tekital and it was not good and again they change in to daltin but it did not work and and now i take clonazpam 0.5mg is contorling my seizurs but i had 3 seziures in the same days but 6 months ago after the 3 seziures in the same day i did not have no more seizures i started having seziures when i was 11 years old from now that i am 21 years old but with the meds i am getting controled by it and my mom also has seizures  me and my mom have seizure only my mom has complex and grandmal but my mom takes the same meds but it did not work on her until because she did not feel like taking her meds no more she wanted to slow her med down but a new doc that she meet had seizures just like her in atlanta and said to her she has to take them if she does not she will not stop having seziure in or life or future so she is taking her meds and not having no more seizures this is a good sign that in the future my mom is not going to have to more seizure  thats good now but what abouth me i mighjt have appoinment this august 13 with my new doc or august 30 if they did not have my mom first but i guess they will pick me first because i was 19 years old when i did my egg i have not had my egg for so long and i thing i have to take my egg and check my blood pressure too nice talking to you where are you from  please relpy back to me as soon as posiblle i love to be your friend

Hi

katalin cristofaro  This is Tany From Atlanta and I have Grandmals i used to take the pills that your husband took the daltin that you said it was not that to good they change in to tekital and it was not good and again they change in to daltin but it did not work and and now i take clonazpam 0.5mg is contorling my seizurs but i had 3 seziures in the same days but 6 months ago after the 3 seziures in the same day i did not have no more seizures i started having seziures when i was 11 years old from now that i am 21 years old but with the meds i am getting controled by it and my mom also has seizures  me and my mom have seizure only my mom has complex and grandmal but my mom takes the same meds but it did not work on her until because she did not feel like taking her meds no more she wanted to slow her med down but a new doc that she meet had seizures just like her in atlanta and said to her she has to take them if she does not she will not stop having seziure in or life or future so she is taking her meds and not having no more seizures this is a good sign that in the future my mom is not going to have to more seizure  thats good now but what abouth me i mighjt have appoinment this august 13 with my new doc or august 30 if they did not have my mom first but i guess they will pick me first because i was 19 years old when i did my egg i have not had my egg for so long and i thing i have to take my egg and check my blood pressure too nice talking to you where are you from  please relpy back to me as soon as posiblle i love to be your friend

Sign Up for Emails

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