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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


Wow...that's rough!! I really feel for you. Strokes can definitely cause seizure disorders, and that's like a double whammy! Depending upon where the scar tissue is located in your hubby's brain, different meds can help. I only have experience with a few of the meds your hubby has taken (dilantin, depakote, and now phenobarbital). Most meds do cause sleepiness, especially in higher dosages. It seems that his neuro always keeps him on the higher end of normal. Do they have him on the high end "just to be on the safe side"? Because, a med dosage has to be just right to work. Too low= seizures...but, too high can also equal seizures. If they have tried lower doses and they were too low to be therapeutic, then I guess you don't have much choice. You certainly can't risk him going into status epilepticus. Dilantin never worked for me, I still had seizures. Depakote was good for me (no seizures, and a lower dose improved my well-being), but I had to switch due to a rare side effect. Phenobarbital may be an option for your hubby. It has worked okay for me...but it does cause extreme tiredness and clumsiness, so you want to be on the lowest dosage possible. That is one thing I've learned, if I have a difficult time talking (forgetting what I'm talking about mid-sentence) and am stammering around falling into things, my dosage is too high. I wish that I had a magic answer for you, that would make your lives easier...but, I don't. I just hope that I've been able to help somewhat. Take care (of yourself too!), my prayers are with you both...Heather

I'm so sorry for all you are going through. Unfortunately with meds you just have to keep trying. But what I wanted to say is if he had been evaluated for surgery to remove the scar tissue. If your doc now won't consider it, please get more opinions.

Not being a doctor (and each case is different) ... I can only say "keep trying." (As hard as that is to hear!!)But I do want to agree with e_nuffofthis and say, "Get another opinion."

Hi, As you can see I am new to this site, and do not know, if I have to answer everyone or, I can answer only in one reply.In this year and half we had so many opinions, that is not even funny. I know --- one more could make the diference. We went to 8 different doctors, the one I really liked, and thought, she is the best doctor, and had my husband on the best combination of seizure medication (in my opinion), she has no office anymore, she is only in the hospital, but you are right, we have to keep trying, only this way he will get better.ThanksKatalin

Katalin: This site allows folks with epilepsy (or family members attempting to deal with their loved one's situation) to vent ... to ask questions of others who have been there (and/or are still there).Some may hesitate to respond because most of us have been switched around on medications, (personally, I'm not happy with what I'm on).Some of us (me included) have had what's happened to you with a favorite doctor no longer being available. If you felt that your husband did best on the medication prescribed by the doctor that's only in the hospital, why don't you mention it to his current neurologist? Believe me, I've learned the doctors need (and want) our input!I wish you the best.GKT

Hi GKT,I think this is a great site, it helps people, and it helps me vent off some fair and anger. I understand that people do not answer, because before I posted the first time, I hesitated a lot. Should I or should'nt I write about us. I was very ignorant, at the beginning of this ordeal, and think that most people are like I was. Did know a little bit about stroke and epilepsy, but now after a 1 1/2 year of research I learned a lot, from what I learned and saw I feel with all of you, and wish you the very best. I know very well my husband, and how he responds to medication. This neurologist whom we have now, was a referral from my favorite lady doctor. I told him right away, about the combination he had, but the doctor's answer was: they changed his medication now, lets wait an see.What kind of medication do you have? Can I help you with something? Thanks againBest wishesKatalin

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

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

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

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

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.

USMALE: I can't say, "Thank you" enough. Your message was truly inspirational!

GKT,You Just did, more than enough.USMale

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

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.

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

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

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

I am surprized you think I know something. But, I am pleased you do think so.Your neuro is correct that just because a person has a single seizuer in his or her life doesn't make it epilepsy.Everyone at some point in their lives will experience a seizuer at some point for whatever reason. THere are alot of them, so I won't go into them.Most people don't need medication adn they don't generally amke it a practice to give out meds after only one seizure. Usually they wait to see if there is a second and a third, before they start handing out medication. And then start with all the neuro stuff like EEGs and VEEGs and all that jazz.I know that generics and the name brands are exactly the same chemically and some people can, like you said, take one or the other. I take name brands of Neurontin and Depakote, only cause that is the only thing available.There has been an on-going debate for more than 50 years about generics and name brands, and they are still at war.Nancy

Hi,  I am really sorry about your husband's stroke.  While I have never had one, I have had epilepsy for about the last 25 years.  Presently I am on a cocktail of depakote, dilantin, and phenobarbitol.  My seizures are pretty much under control with my meds and my vnsfishfry 

Hi,Thank you for the input,  my husband's epilepsy started because of the stroke.  We tried several medications, not to many, (Dilantin alone, Keppra alone, Dilantin again, combination of Dilantin and Topomax, combination of Dilantin and Trileptal, combination of Trileptal and Keppra, I think this was the best combination; and finally Depakote and Keppra).  I said not to may, but writing it down I see it, it was plenty. Even if all this started at the end  of 2002, and doctors don't like to change medication, because it can cause more seizures.  And I was an idiot and did not realize it, that he had epilepsy until I dropped the question at the neoro's office in October 2003.Are you now on 3 different medications and the VNS?   You must have had a very rough time also.  I am happy to hear, that your seizures are pretty much controlled.  Are you tired also?  My husband is very tired and sleepy.  Is there anything what can be done about the tiredness?Thank youKatalin  

Hi Nancy,I told you, you were very noledgable, and I was right, seeing all your answers to everybody on the site, you know a lot and give good advise.  I would like to ask you a few questions if you don't mind.  Or if anybody else, has some suggestions. As you know, my husband went through a lot of ups and downs in 2003.  This year seems to be better then last year, at least riguarding  the seizures.  He still has them, but they are short (1.5 min or 2), and they leave him exhausted with no strenght at all.  There is no pattern, they can be 6, 10, 26 days apart,  only in the morning, a short time after he wakes up.  Until now he was progressing, very little, but he was progressing. The last week or so, it seems to me, he is declining.    He is not so talkative,  when he transferes from the wheelchair to, the bed, car or toilet,  etc. he does not remember how to turn, and even if I tell him to move his feet, he does not.  To come down the stairs, is a tragedy, I almost cannot hold him. Walking with the walker streight, is OK.  He is very sleepy and tired all the time, sleeps 12 hrs in the night and takes at least 2 naps during the day.  Can this be from the Depakote?  (1500mg a day or Keppra 3000mg a day.)  Or could it be stroke related? I read today, that you said that Depakote is kind of a bloodthinner, or did I misunderstood?  I am concerned because tonight, my husband was transferring from the toilet to the wheelchair, and as usual he was not moving his feet, I could not hold him, he slid to the floor, and he bumped  his head  very little on the door. Can you let me know?How are you doing?  Everithing OK?God blessKatalin   

Hi Kaitalin.That sounds more like stroke activity, and the risidual damage from the stroke that didn't appear right away.I took a class on Advanced Medical Life Support, actually it was a required class for those in the paramedic program, and we spent a considerable amount of time on strokes, diabetes, adn head injuries.I also saw alot of unfortunate peopple come through the hospital doors who had strokes, so I got to see it first hand, and treat it first before they went to a bay.  ALOT of them came through the doors via ambulance, and then I wouldn't get to do ore treatments and assesments.He may have also had a TIA or another small stroke that you are unaware of, becasue that can also happen.Unfortuanltely for people who have had any type of head injury or brain injury, or CVAs can have a period of time where they don't have the symptomology that one expects to find with it.  ALOT of times it shows up at a later date in time.I would schedule an appointment with his doc, and get him rechecked just to make sure he hasn't had a series of small strokes that you aren't aware of.  Better to be safe than sorry.Seizures can come in clusters, spurts, on a time schedule, only wuring certain stimuli, and with no reconizable patter to them.Mine are like that all the time, and have been for years.  They happen when they feel like, not when I want them to.  The longest I have gone with out one was 3 weeks.  They can happen several times ina night, then nothing for a few days, then some more, and then nothing for several weeks, and then boom, I get a huge one.No rhyme nor reason to it, just all over the map.As for me, I am okay.  I reinjured my foot that I had surgery on back in Feb, so now I am back in the cam boot and using crutches.My Depakote got increased to 1000 mgs after being at 500 for a long time.I was accausted and threatened by the cab driver that took me home yersterday.I have had a variety of my seizures.  I get those stinking Myoclonics all the time, and have had simple and copmplex partial seizures, along with absences.  No grand mal.  Haven't had one of those since the end of last year.The depakote increases bleeding time in people taking it, so any surgery to be had, has to be discussed with the doctor, and drugs containing aspirin should be avoided, so as not to have the double effect on the bleeding time.  Taking drugs like warfarin with any of the depakote drugs is not advisable.Nancy   

Hi Nancy,Thank you.I will definitly make an appointmet at the doctor's office, because I was thinking also, he could have had a small stroke, and I did not see it.  We were at the neuro's office 2 weeks ago, but then he was OK.  And now, guess what, he is on vacation!  After the surgery, he had a hemoragic stroke, does that matter?  I forgot, sometimes he thinks I am his sister.What is a TIA and a CVA, I could not find this words in the dictionary.  Sorry about your foot, how long do you have to have crutches? What happend to the cab driver, why was he treatening you?  Thanks for clearing th Depakote story.Yes the seizures are all over the place, and mostly they happen at times when they should not.Katalin

TIA is the medical abbreviation for Transient Ischemic Attack, sometimes referred to as a "mini stroke" because the symptoms are transient and are just passing through temporarily.  Symptoms are very similair to a real stroke, but they subside in 24 hours, and the person is back to doing whatever, with NO damage done.  Eventually if enough of those occur, it can lead to a major stroke.CVA is the medical abbreviation for Cerebral Vascular Accident, or stroke.It means that blood vessels whether small or large have either burst, broke, annurysmed(spelling), sheared off, or cracked leaving the blood to escape either slowly or abruptly.Yes, it matters if the stroke was hemorrhagic in nature.  That means that the blood vessel in his head popped wide open and the amount of blood in his head is what the problem is.  Hemorrhagic strokes are the worst kind there are.  They do the most damage, will cause clots, bleed out into the brain causing all kinds of havoc in there, they cause bleeding inbetween any one of the three membranes that cover the brain, between all of them as a whole and the brain, between the skull and the membranes, among other things, and they kill people.  If not on the fist one, stats show alarming numbers for people's lives being taken by this problem.  This is NOT meant to scare you, so don't think that I am.They mess with the bodily functions, coordination, speech, hearing, ability to follow commands and be talked to, it messes up how they think, and alot of times they revert back to being a small child and actually act like it repeating the words no, yes, yucky, mine, not hungry, and wetting and defecating themselves etc.  I am on crutches after just getting off of them 5 months ago when I was in the EMU.  I had surgery in Feb to repair a faulty fascia in my heel--known as heel spurs or plantar fascitis.  I was crippled from it for 11 months, before I finally got referred to the right doc.  He did all the necessary treatments like inserts, PT, cortizone shots etc, and none of them worked, so he did the surgery.Because of my epilepsy, I couldn't have general anesthesia, so I was given Versed, and another narcotic to knock me out, and they did a nerve block from my knee down, that actually didn't wear off for 4 days, but when it wasn't fun.I re-injured it stepping on a clear plastic hanger that was on the floor of my room under something, and I didn't see it.  I should have picked up the mess when my mother asked me to.I stepped right across the surgical site and inscision sites.  I know have a swelled up foot from front to back on the bottom, because that is the path of the fascia, and swelling on the lower top of my foot near my toes, and bad bruising as well, not to mention the pain all over again.Then 2 days ago, I jumped into our pool to try and land on my noodle, and got the noodle, but also got the bottom of the pool doing so.  I scraped the top of my toes on the bad foot all up, and hyper-flexed my foot straight back, and now I have a sprained ankle on top of all the other crap. Nothing has been done with the cab driver.  They probably won't, because as we were leaving the parking lot, he called his supervisor and made some asinine complaint about MY behavior and how out of line I was.He was acting like a fool before I ever came in the scene.  He was being nasty and bad to the receptionist at the office where I had an appointment with, and he was being argumentitive with her and got nasty with her when she told him that my time is not up yet, becaaue the counselor started late.He wouldn't allow me to schedule next week's appoinment, and was nasty when I asked him if I could, and I still haven't.  When we left and were in the main lobby of the building, some man approached him and told him that he couldn't park his car where it was, because his wife has a scooter and had to go the long way around.That made him more mad, and I apologized to him for it two times, and he said sorries aren't going to get me paid lady.  Then I told him while he was throwing things around in disgust in the front, that if he didn't want to take me, I would gladly call dial-a-ride, well then he was even uglier about that, because I was threatening him.  He told me that I was way out of line.He called the supervisor and told him half the truth, and then said that I have a crap attitude, and that I was listening, and he didn't care if I was listening, and said that I got testy with him making threats about getting a different service.I am not going to put up with that kind of abuse, when I can ride Dial-a-Ride and be respected all the way around both by the drivers and the passengers.I almost had a seizure from his performance.  I was already shaking.I tried, but I doubt anything will come of it.  He is just an ass.He is in it for the money, not for helping the people.  He gets or any other drivers only get a 5 dollar voucher when they take calls to pick up people who are state insured.  He just didn't like it.I need to go.TTYL:)Nancy

Hi Nancy,Thank you.  You did not scare me,  I kind of knew, but I wanted to know.  I am very afraid  for him and  hope something can be done.  What you are describing some of it is happening. I will let you know what the doc will say.Sorry to hear about your injury, and really hope it gets better soon.About the cab driver, I find that outrageous, how people act sometimes.  He must be a very unlucky man,  otherwise I cannot immagine being so rude and nasty to somebody.God bless, I pray for you.Thanks againKatalin

Hi Nanacy,I am back again, my husband is doing now a little better, he was 5 months in the hospital and in several skilled nursing facilities.  It was just a nightmare.I brought him to the hospital on the 6th of August 2004, and he came home on the 8th of January 2005.  To make the long story short in between he had several times aspiration pneumonia, w/respiratory distress, MRSA, heart surgery because he had 700cc liquid around his heart, his bloodpressure went down to 54 over 24 sometimes and his heart rate was 120, naturally he was in and out of the ICU.As you remember he was on Depakote, and I thank God and the lady doctor, she changed Depakote to Tileptal.  He is now on 1000 mg of Keppra 2x a day and 900mg of Trileptal in the morning and 600 mg in the evening. He is now alert, and talking a lot  more, he walks also a lot more then before (w/walker).  On Depakote he was a zombie.His seizures are now 2 to 3 minutes long and usualy about every 23 days.  Today he had two, one at 8:20 AM  3 minutes long and an other one at 11:45 AM 2 minutes.  The second one left him more week on the left side, his left cheek was not mooving for a long time either, he was confused a bit.  Is this usual how it happends? I have a question: I have Ativan 1 mg at home and the doctor said (it was in 2003) to give it to him at the onset of the seizure.  I never used it.  Is this in case only if the seizure is longer of 5 minutes?  For that I have Diastat at home also.  I used it once, it stopped the seizure instantly (here I do not know, if the seizure  would have stopped anyhow).I hope you are doing better now, and kind of everything is setteling down.  Please let me know.Katalin 

DOn't use the Ativan that is from 2003.  IT is no goo anymore.  Use the Diastat to rbing him around during a seizure that goes BEYOND 5 minutes.YEs, facial paralysis and leg or arm paralysis can be a normal part of the seizure after it is over for some people/  That is called Todd's paralysis.I am glad taht his drugs are no working and he is much better to be around, than he was before.THings have slid a litlle for me in the last 6 months.  I still have the same 6 types of seizures, and in the last 6 weeks the Grand Mals have made themselves known.  I used to take 750 mgs of Depakote and since january 6th, it has been bumped up twice to double that, and I now take 1500 mgs.  PLus the 3600 mgs of the Neurontin.I was diagnosed in Novemeber as having Juvenile Absence Epilepsy where Absence seizuers are the main type and then followed by PRimary Generalized TCs.I have TLE, as well, with all 4 of the partial seizures.So, it has been a real battle for me with that.Nancy

Katalin, I just found this page. It's the National Institute of Neurological Disorders and Stroke (NINDS) Epilepsy Information Page. don't know if it'll have any info you don't, and, for all I know, you've already checked it out, but I figured I should forward it to you just in case.USMale.

Hi USMAIL,Thank you for this page, I was never on this page, but I read in other places about this research and the VNS.Yesterday I answered your previous message, but at the time I was posting it my computer acted up, and lost everything.Thank you againKatalin

Hi,He has not been evaluated for surgery, but I think he does not have that many seizures, in order to be OK for surgery, and I am afraid from a new surgery. Remebering what happend at the first one.thanksKatalin

Thank you, for feeling with us. It is really a ruff time. MY husband's medication change occured in January this year, and I think they are keeping him on the high level, in order to not to have seizures. We checked his Depakote level last week, and it was 88, what is good, and he has not have any seizures since 26 days. As I said, he is now on Depakote 500mg 3x a day and 1250mg of Keppra 2x a day. I am praying, that he has no more seizures. (what a dream!) We have other problems also, he is terrified from falling, and can walk only with the walker and assistance. His balance is not good at all, leaning to the left. Is there anything it can be done? Some exercises? Thank you Katalin

I have known a couple of people to have a stroke and slowly overcome the physical challenge, and that alone can be tough! But, when you add the threat of seizures it really is complex.I'm sure you know that strokes typically affect one side of the body (which is why dh leans to the left), and you can see a physical therapist to work on the side that is weak. Re-building hubby's strength and confidence can take a long time..but it can be done. You just need to make sure that dh is on the safest low dosage of meds as possible so that he actually has the energy and persistance to work on re-building that strength. If he's all doped up he isn't going to be doing those exercises.If you ever have any questions or problems with dh being on a certain med (or dosage), don't hesitate to talk with his neuro. And, with some doctors, you have to really put your foot down. YOU know your husband. YOU know how he reacts, so stand up for him when you need to. (Some doctors think that you're just some yahoo who doesn't know what the heck you're talking about, and that's when you have to insist on being heard.) Don't ever doubt yourself.Best of luck to you and your hubby...I hope that he remains seizure-free! Take care...Heather :)

Well, so much for being seizure free, he had a seizure this morning, and I did not wake up. This time not even the dog heard him. This terrifies me, because if he has a seizure what is longer, and I could not hear him, what will happen. I was looking for a device, what could allert you, if he has a seizure? Does something like that exist? I asked around, but nobody nows anything.You are right, his situation is very complex, the stroke and later on epilepsy. He had several falls, a bleed in the inner brain, what was 3cm big, than an other fall, what caused a hydrocefalus, had burr holes, which did not work, and finally a shunt. July 2003 he started having the seizures, what lasted 30 to 50 minutes. Now his seizures are about 2 to 3 minutes. I agree with you, that doctors and nurses think, you are an idiot, during this time I beame a different person. I saw so many errors in the hospitals and rehab centers, that you cannot immagine. there were several places, where I had nothing but fight. About medication: wrong dose, wrong time, not checking his levels, and if they did they did not check how the level was. I am wondering does it happen to other people also, and they do not know it, and I am the only one catching it? I could write a book about it. Thanks God, his neuro does not think I am an idiot, and listens to me.The execises are going OK, but as soon as he has a seizure, his left side becomes very week, weeker as it already is and kind of we have to start from the beginning again. Soon therapy will stop, because BCBS pays only 60 a year. At home we are doing exercise also, and hope for the best.I wish you the best, and pray for you all.Thaks againKatalin

I take both Dilantin and Depakote ER to control my seizures. According to the doctor, my seizures are difficult to control. I take 300 mg of Dilantin and 3500 of Depakote ER. I used to take regular Depakote. The ER doesn't make me as sleepy. I have had seizures since I was a teenager. I'm 40, now. I've been on every medicine combination possible!!!

Hi,Thank you for letting me know, that Depakote ER does not make you so sleepy. I think my husband's zeisures are difficult to control also.  He is now on Depakote 1500mg total, 3x 500mg a day; and Keppra 3000mg total, 2x 1500mg a day.  He is very speepy and very tired.  He sleeps every night from 8:00 PM  to 9:00 AM, sometimes longer, and takes several naps during the day.  I wake him up at 10:00 PM to give him his Depakote, and at 7:00 AM Depakote again and at 8:00 AM  Keppra and all the other ones what he gets, after that he falls asleep again.  Now his seizures are a lot shorter, then before.  Last year before they changed his medication, he was on 350mg of Dilantin and 50mg of Topomax.  Then his seizures were 30, 40, 50 minutes long, we ended up all the time at the ER. He has a combination btw. stroke and epilepsy and they say that the scar tissue from the stroke is causing the seizures.   He cannot walk alone, not even with a walker, to transfer to the chair, sometims it takes all my strenght.  Is this from  epilepsy or from the stroke?  After a seizure he is so tired, that he cannot move at all.  Dilantin was not working for him at all, because the levels were very unstable. What makes me wonder, after the stroke, coma and paralisis on the left side, my husband recovered pretty well, and was walking alone with no help.  After about 6 months, the seizures started, and we got back to scratch again! What kind of a seizures do you have, how long do they last?  Do you remember anything?  Are you week after the seizures? How many times a month?  Escuse me if I am asking all this questions?  You do not have to answer. Thank you again and good luck to you, my prayers are with youKatalin

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?

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 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 Tany,I am your friend, and I am sorry, that I did not get back to you sooner, but my husband is in the hospital, and after work I go right away there, and when I get home is very late.As I understand from your letter, you are taking clonazepam 5mg (are you sure it is 5mg?).  I am not familiar with this medication.  I am happy to hear that you had no seizures for about 6 month, that is very good.  When did you have your last exam?  Was it when you were 19?  You know it is very important to go regularly to your neurologist, because you need the check ups, I repeat it it is very important!  You will go to your doctor on the 13th  or on the 30st of  August, let me know, what the neuro says.How is your mom doing? Is she OK now on the medication what she is taking?I  am from Michigan, it is far from Altanta.  My daughter was there this weekend, for  a meeting.  She liked the city very much.  One time we drove though Atlata,  and what I saw was very beautiful also.  The weather what you have is a lot better then here in Michigan.  Are you working or are you going to school?  Tell me something about you I would like to know more about you, and let me know if I can help.Tammy, let me know what your neuro says, and I am hoping, that you seizures are controlled now.God bless you, you are in my prayer.Katalin

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