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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 ermeszter on Thu, 2004-06-17 - 20:51
Hi again,Thank you for the suggestions:1. Seizure dog - I did not check into this, but we have a little dog, and when my husband had a seizure, the dog alerted me. It was a few minutes before midnight, and I was in the computer room, next to the room where my husband was sleeping. The dog was on the couch, I heard him jumping down and run toward my husbands' bed and baking. I run into the room, and he was having a seizure. It was about 5 minutes long, I gave him the Diastat, and can tell you, this medication instantly stopped the seizure. ( You have to give this medication 5 minutes after onset of the seizure, in order to avoid going into status epilepticus. I don't know now, if the seizure would have stopped anyhow.2. I will tell his neurologist, that his seizures are mostly, a short itme after he wakes up, and I think, that he has a seizure then also, when he is overtired.I am sorry that Phenytek did not work for you, and yes you should have told your doctor, that you had a lot of seizures. Now you are on Dilantin again, and I suppose your seizures are now more controlled. You say, that you have a strange system, "no you have not," because you probably know, that in Generic Drugs, the chemicals are exactly the same as in the Brand Name Drugs, but they are absorbed differently in the body, because of the way they are prepared. It is very good, that you did not loose yur humor, and I see that you think positive. Not all the time, but it happends to the best of us! That is the reason, that nobody should "never say never" to anything. Better times will come you see, and the hope for a new medication should never leave our mind. You say, that epilepsy is not the end of the world, sure it is not, but it is sure tuff to deal with.Thank you again, and good luck to you.Katalin

RE: Depakote

Submitted by mexican_fire on Fri, 2004-06-18 - 11:03
Hi Katalin,I am new to this site--have been registered with it for more than a year, but failed to keep signing in, so I lost my password. But I am also not new to seizures. I have had them since I was something like 6 years old--they suspect--and then 3 1/2 years ago while I was still living in Ohio, they resurfaced agaain, and I started having seizures. My health insurance didn't cover the drugs for it, so I had to go on medicaid for RXs.Then when I moved to Phoenix 1 1/2 years ago, the seizure activity made it self real apparent, and I seemed to be having more than one kind, so they ran EEGs, to which, two of them came back with abrnormal activity in the temporal lobe--slow diffuse waves. The third one was normal, and then they added two more drugs to the one I was already taking, so then I was taking 800 mgs of Tegretol, 3600 mgs of Neurontin, and 100 mgs of Topamax. However, the Topamax wasn't helping, so they admitted me for a VEEG at one of the 3 hospitals in this ciity that has EMUs and took me off all my meds, only to watch me have 3 seizures, all different, in the 8 days I was there.They let me go home on the 9th day with just the Neurontin, and nothing else, and 2 weeks later put me on Depakote, and I only take a low dose of it--500 mgs per day--divided into 250 mg incriments.They came to the conclusion that I have a mixed seizure pattern with Grand Mal, Myoclonic, Simple, and Complex Partial.When I was a kid I had Gelastic and Absence seizures and was always getting in trouble for those in school.As for your dog thory, I agree. Why get one that you have to have everything else fail, EVEN surgery to get one. They are anywhere from 1500-3000 bucks, and can do the same thing your small dog can.When a person has a seizure or is about to, they give off a different scent, because their body chemistry changes, so they will smell different, than normal, and that is what gets the dog spastic like that. Their noses are really sensitive to changes in scents, and for one that ain't a normal one known to that person, they will get absolutely crazy. I was watching my good friend's Lhasa Apso for 3 weeks one time, and I had a seizure--grand mal--and she jumped off my bed and went to act like a nut in my mom's room. I was told this, I remember nothing.We will be having our own dog by this December, after our friends breed theirs in August.Your other comment about your husband having a seizure when he is coming out of his sleep in the morning. Well, there are two possibilities for that. One can be a Myoclonic seizure, I have those, but they can happen at other times of the day and night as well, but are more frequently seen inthe morning right as you are waking up, and the other one could be a form of grand mal that can happen in the morning as well. It could start as a myoclonic that goes right into grand mal, however that last part isn't too likely, although it has happened. As far as I know, from my classes at the college I got my degree in Allied Health at, you can't have one type of generalized seizure then generalize to another form of one. You can have the partial seizures generalize into grand mal, but then that would be referred as secondarily genralized. Myoclonic and grand mal are already generalized from the get-go, so they can't generalize off each other.The other important thing you left out about the diffreneces between generic and name brand drugs is that generics can save a person almost half, if not more, on their drugs.They are WAY cheaper.Nancy

RE: Depakote

Submitted by ermeszter on Mon, 2004-06-21 - 21:43
Hi Nancy,Thank you for your response. You are very knowledgeable, what I cannot say from myself. I am dealing with epilepsy only since October 2003. When I asked the doctor the question:"What is the difference between epilepsy and what my husband has? His answer was " one seizure is a seizure, multiple seizures is epilepsy." I was so mad at myself, that I did not think about it, but what can you do, sometimes you act like an idiot, and because I am not a medical doctor, it is understaandable that I did not know almost anything about epilepsy. After that visit I started reading books went to the library, and to different websites. I read a lot, and learned a lot, but still my knowledge is very limited. Epilepsy is a very complex illness, and it makes it even more difficult, that is different in everybody. You also went through a lot, and hope now with this new combiantion of medication, your seizures are controlled.My husbands' neurologist raised his medication again, now he is on Keppra 1500mg 2x a day, Depakote stayed the same 500mg 3x a day. The seizures are short now. He has partial seizures, the EEG was normal, did not show anything.We are very happy with our dog, and could not afford a seizure dog anyhow, if it is that expensive. Good luck with your new puppy.About the Generic Drugs I am sorry that I did not mention that is a lot cheaper, it is great if it works for someone, but sometimes for some odd reason only the Brand Name works. I know what it means, not to afford medication, beleave me we have been there.Good luck to youKatalin

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