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Why have my seizures gotten worse?

I was diagnosed with epilepsy when I was almost 5 years old, in other words, early 1988. My epilepsy was kept under control for so many years. My epilepsy was kept under control until 2003. So that is what? That is fifteen years. I still don't know why my seizures have been gradually, yet steadily getting worse within the past 13 or 14 months. All I can say is that it is frustrating to not be able to work very much. I am unable to work enough to support myself. My situation right now is really difficult sometimes. There is a good possibility that I will loose my health insurance since I'm not able to work very much, and I get my insurance through where I work. Plus, the co-pays of my epilepsy medication is expensive. I also have anxiety attacks at night. There is a very good possibility that I will need surgery, but surprisingly, that is the least of my worries. My medications have been changed so much over the past 4-6 months, it gets to be pretty rediculous. If anyone could post something anything, I need all the support that I can get. I feel like I am fighting this battle alone even though my family, friends, and other loved ones have been absolutely wonderful. They have supported me thus far, and I know they always will. I just feel all alone despite the fact that I have a wonderful support system. I will leave it at that. Thank you for reading this.


I think it would help us relate if you could tell us what drug you were on and what happen, if then it was upped, and what happened and then what drugs were added and what taken away.... and then what happened, etc. I know that these drugs can cause lots of symptoms and changing, as you said, so many times over the last months has probably put your body and your brain in havoc. Doctors like to keep pushing the drugs to the max thinking you need more and more, when often the drug is just not right for you. You need to sit and figure out what happened with each med. You need to research the meds and see what the side effects are for each. Keep going with the surgery, the monitoring, etc. You need to really know what is going on. Hang in there.

So, you're 19 years old? Are you living at home (meaning: with mom & dad)? What kind of seizures are you having? When was your last EEG? Do you know what part of your brain the damage is in?Are you sure that you're having actual anxiety attacks? Has anyone seen you during one? I started having complex partial seizures when I was 20, and was misdiagnosed with panic disorder. So, while I thought that I was having a panic attack, I was actually having seizures. If you have a complex partial seizure disorder I would say that your anxiety attacks are probably seizures. If that's happening, that would explain why your seizures are getting worse (because they're un-controlled). If you're stressed out about having seizures, it's going to bring one on...a vicious cycle, I know, I've done it. You have to let your brain get used to a medication before you switch. Switching is very hard on you (which you know), so you need to switch gradually. After a couple of months, if seizure activity doesn't get better after adjusting the levels, gradually switch to something else. You are working with a neurologist, right? You aren't alone. ((HUGS))Heather

Well, first of all, my last EEG was done 2 weeks ago. I haven't gotten a call about any results yet. It was a video EEG that took 6 hours, and was done at a hospital. I am pretty sure that the anxiety attacks are actually anxiety attacks since I have a long history of having anxiety attacks. They are different than any anxiety attacks that I have ever had, so it could be something else, but I don't really know. I also have complex partial siezures, but from what I was told, when I have seizures. I can't see or hear anything. The one part of my brain that is affected is the right temporal lobe I think it is called. Yeah, I am fairly sure that it is called temporal lobe. I was born with a portion of my brain missing. How much, I don't know. And then some around that is deformed. Once again, I don't know how much is affected. Over the years as I would get older, the rest of my brain would take over a lot of the functions of the of the affected area of my brain. I don't know how much of my right temporal lobe is affected. I had significant problems with physical and mental developement. I was behind in those aspects for the first several years of my life. But as I got to be 9 or 10 years old maybe, I was catching up developementally. There are things that I don't understand and have to be explained more thoroughly to me because I also have very, very mild autism. My mom told me that I actually started to have seizures when I was almost four years old. She also told me that she took me to a number of doctors and neurologists over the next year, all through 1987 to the beginning of 1988. My mom said that the doctors said that I probably had a brain lesion, but didn't suggest any treatment at all. EEG's were done within that year, but of course I don't remember them. I was told that I was sedated for some of them. They had to, I was four years old and terrified. You can't do an EEG on a child that is screaming. My mom demanded answers because she wasn't getting any answers from the doctors that she went to then (I obviously don't blame her) So they sent her and me to The University of Iowa Hospitals and Clinics to a pediatric neurologist. My mom told me that I had an EEG there also. They also saw the seizure activity on the EEG, but it was in only one part of the brain. So they wanted to have an MRI done. It was put in as 911 status, in other words, I was automatically put at the top of the list to have a MRI done. I had one done a week later, and in 1988, that is fast. They at first thought that I had a brain tumor of some kind. That is why they wanted to have a MRI done. It showed that I didn't have a brain tumor, but the brain damage that I talked about earlier. They told the doctors where I still live to this day to get me on medication immediately. For a few years after that, I would go to U of I Hospitals and Clinics once a year. I don't remember if I went there more often than that during the first year or two after I was diagnosed with epilepsy. I was diagnosed with Epilepsy when I was almost five years old, at the beginning of 1988.I do know that my seizures are out of control. I was officially at that status since May of last year. I do know that being stressed about having another seizure is a very vicious cycle. I have to admit, I did that too. I did get past that though. It wasn't easy though. Ok, this is the situation with my medications. I guess I accidentally gave you the wrong impression about my medication changes. It must have been how I worded it. Oops, sorry about that. I was put on Carbamanzipine (generic of tegretol) when I was diagnosed. It was increased a few times over the period of 15 years. I don't know what I started out at in terms of dosage, but I ended at 1200mg. I think it was at the end of 2002 or the beginning of 2003 that I was put on Valproic Acid (Valproic Acid and Depakote are almost identical). The dosage of that was 1000mg. At the time, I was also taking 800mg of Carbamanzapine. Then in May of last year when I saw a neurologist for the first time in several years, he wanted me to gradually go off of Valproic gradually over a four week period. He also switched me over to Tegretol XR (extended release) instead of Carbamanzapine, and the dose was bumped up to 1200mg. I was fairly optimistic that my seizures would get better, and at that time, they weren't nearly as they are right now. I think it was September, no, I remember now, it was September when I went back to my neurologist for a checkup, and I told him that my seizures were gradually getting worse, and that I had two known seizures that week. He told me that he wanted to put me on Topamax. I had to start at 25mg and increase it by 25mg per week until I get up to 400mg, then decrease my Tegretol by 200mg every 3 days until I was off of it completely. So that would've been over a period of what, 2 and a half weeks. Well, I never got close to 400mg on the Topamax. I started having serious side affects almost immediately. I had severe irritability and moodswings. I was also physically weak, and lost my balance frequently. I also suffered memory loss. Unfortunately, some of the memory loss and inability to remember things sometimes is permanent. It ranges from suddenly forgetting what I was talking about to someone about when I am in the middle of talking to forgetting quite often the little things in life, and also, my short term memory was affected. And all of this happened at only 50mg. I can't remember how long I took Topamax before I called my neurolgist. I doubt it was any more that a couple of weeks. I could've been three weeks, but l don't remember. And as you might be able to see, there are things that have happened in the past that I don't remember that before all this happened, I would have remembered easily. I easily forget about things that happen just a few days ago, or even earlier in the day. I know that the Topamax didn't cause all of the memory loss that I am suffering from right now. I have noticed that as my seizures got worse, so has my memory loss. Well, back to calling my neurologist. I told him about the side affects. The memory loss was there at the time also, but not prominent enough for me to say anything when I told him about the other severe side affects that I was having with the Topamax. He told me to decrease it by 25mg per week until I was off of it. So it only took a couple of weeks for me to get off the Topamax. Then he told me to start taking Kepra. I was to start at 1000mg, then the second week, go up to 2000mg. I started having extreme side affects almost immediately. I had extremely severe irritability, and even more severe mood swings. The mood swings were so bad that I can't tell quite a few people that I know because it would scare them really bad. I also had thoughts of suicide. That was caused by the Kepra also. I wasn't even on Kepra for a week. I was afraid that I was gonna hurt myself, so I did something that I almost never do. I decrease the Kepra from 1000mg to 500mg. I felt better for maybe half a day, but then the irritability came back with avengience. So after being at 400mg for 3-5 days, I went off the Kepra without the concent of my neurologist. I didn't have the concent from my neurologist to decrease my Kepra from 1000mg to 500mg. When I told my personal physician about that, he told me that I had to go back on the Kepra otherwise I could have a real bad seizure. And I knew very well that that could happen. So a couple or a few days later, I called my neurologist and told him about the extremely severe side affects from the Kepra. Well, I told his nurse, and he called me back telling me to go off of the Kepra and to start taking Depakote ER. During all this time, I was still on Tegretol XR since I had never gotten to full dose on either the Topamax, or the Kepra.I was told to start at 500mg of the Depakote ER then the following week, go up to 1000mg. This was said over the phone. That was said at the beginning of Oct- ober I think. But there was a misunderstand or miscomunication on my part mostly. I was on my cell phone inside my house, and the reception was not real good, so I didn't hear him say to gradually go off of my Tegretol over a period of 5-6 weeks. So I was taking 1200 mg of Tegretol XR and 1000mg of Depakote ER. I don't remember when I made an appointment to go in and talk to him about my concerns with my medications. We got that matter straightened out. He told me to gradually go off of my Tegretol. That was sometime in October. That is also when he told me to set an appointment up for 6 months from then, which is April, to see how I am doing, as to whether I would need surgery or not. He and I both knew that it was very doubtful that the Depakote ER would work very well. I knew that he knew because he told me so. He also told me that if I was still having seizures like I was then, that he would send me to the U of I hospitals and Clinics to see if I am a candidate for surgery. I am fairly sure that he knew that my medication would have to be changed between October and April. My seizures really increase in frequency at the beginning of December. I called my neurologist again at the beginning of December I think it was, and told him that the frequency and the seriousness of my seizures was increasing. So he told me to start taking 1500mg of Depakote ER instead of 1000mg. I would say a couple of weeks later, my seizures increase in frequency and seriousness even more, so I made an appointment to see my neurologist on December 31st. A couple of my worst seizures happened on the 29th and the 30th. On the 29th, I had several seizures in a row I think. Well, I know that I blacked out several times. Then not long after that, I passed out. If someone hadn't of happened to be there to catch me and lower me to the floor, I would've hit something on the way down. It is hard telling what would have happened if no one had caught me and gently put me on the floor. I am sure they would've carried me to the break room if I hadn't of come to when I did. I know that someone had caught me because someone was right behind me. I don't know if they were about to pick me up or not. They probably were, otherwise I would have been in the way. He prevented me from getting hurt. Two people had to help me to the break room where I work because I was unable to walk for a few minutes. The next day, something happened that scared me so bad that I was backing up. If the same person had not of stopped me from backing up any more, I would've backed up into a hot grill, and I know that I would've burned myself for sure. So the same person prevented me from getting hurt twice. It is known to happen that if a person is walking towards a person having a seizure and/or just starting to come out of one, the person having the seizure will be terrified. I think it said out of fear of restraint. My neurologist the next day confirmed that that episode was a seizure. I will tell the rest of it later. I need to get some sleep. I'm sorry I couldn't say all of it at the same time.Thank you all for replying.Renee

I'm here waiting for the rest, when you are up to it. Then I want you to print this all out and keep it as your record. You have been on a rollar coaster and you need to get to a epileptologist at a good epilepsy center. If what you are saying is that you have a malformation in the temporal lobe, the good news is that you should have been looked at as a surgery candidate years ago, but that's okay cause the technology is much superior now.

It does appear that you should ask to be evaluated for possible surgery ASAP. People with structural abnormalities in their brain, as you describe, generally have the best results if surgery can be performed.The additional seizures, stress, and interrupted sleep all could be contributing to your current memory problems. Some of your medications may also be involved. Do make sure that your neurologist understands how much trouble you are experiencing.Can you enlist friends and family members to help you even more in this difficult time? It should help if they can describe to the doctor (in person, preferably, or at least in writing) what happens during episodes when you are "blacked out." They also can give another perspective on changes in your thinking ability and behavior. Good luck!

Ok, before I say anything else about my medications, there is a big mistake that I made about where the malformation is. My mother just told me. This is what she told me that the Pediatric Neurologist said to her back in 1988. Part of my right Occipital Lobe isn't there. It never formed before birth, and the area of my right next to it is malformed. I have to admit, it does feel really good to know that.

Um, I did miss one thing when I was telling you about the Depakote ER. A couple of weeks or maybe just a week before I made an appointment on December 30 for the 31st to see my neurologist. I had to call him because I was having more seizures. He told me to go up to 2000mg. I remember now. It was a week before, maybe slightly longer. A couple of days after I was put on 2000mg, I started retaining fluids really, really bad. I was retaining fluids in my feet and ankles when I was on 1500mg, and I had to be given Lasix because it was putting pressure on the the major tendon in my foot. I know what it is, I just don't know how to spell it. Where is a dictionary when you need one? Hehe. The pain in my feet was excruciating. I also had severe back pain because of that also. But when I was bumped up to 2000mg, it got a lot worse. I retained fluids everywhere. I gained 20 pound in a few days from fluids alone. I felt horrible because I was so bloated and swollen everywhere. It turns out that it was caused by a rare and serious side affect of the Depakote. It is a Kidney abnormality. And then comes the appointment with my neurologist on December 31st. I told him about the side affects that I had been having, and then about the seizures that I had the 29th and the 30th. He at first wanted to increase the Depakote to 2500mg. So I again told him about the severe side affects that I had been having. Mainly the severe retention of fluids. He then said that it was the Depakote that was causing that. He told me to start reducing the Depakote immediately. And he put me on the medication called Trileptol. I lost the 20 pounds that I gained from the excess fluids. I lost that within the past couple of weeks. I was started out at 150mg of Trileptal and was supposed to increase it by 150 mg per week until I was at full dose of 1200mg. But something happened on January 1st. I had a break through seizure my mom told me. She also told me that it lasted for 10 minutes. I was unable to walk under my own power for a half hour or so after the seizure. I called the neurologist on call that same night, and my mom told him about what had happened. He then talked to me to tell me what I should do. He at first told me to go back up to 2000mg of Depakote. I told him about the severe side affects, and that my own neurologist had told me to reduce it immediately. So the neurologist on call that night told me to go up to 300mg of Trileptal, and increase the Trileptal by 300mg each week instead of just 150mg per week. I got up to full dose and have been completely off of Depakote since January 21st. I feel a lot better in the respect that I am no longer extremely bloated. But all the other problems that I mentioned are still there. I can't go on living like this. Only being able to work at certain times, only being able to do certain things at work. The truth is, I can't do much of anything. I can't even take walks by myself, which is something that I absolutely love to do. That is what I did to have some time just for me. I wasn't ever evaluated to see if I would be a candidate for surgery years ago because my seizures were considered to be under control. But in early 1999 is when my seizures slowly started to increase in frequency. And this is where I am at now. I also know that the prognosis is good for the removal of a malformation in the Occipital Lobe. I looked it up on this sight. But if anyone has any more information on that, or can tell me where I can find out more information on that, please let me know. I would greatly appreciate it. Thanks again.

So, you have a malformation in your occipital lobe as well as a lesion on your right temporal lobe? I would imagine that you have a couple of different types of seizures then, in which case, a combo or multi-med therapy might be the only way to go. A lot of medications are most effective for one or two types of seizures. I, personally, don't know much about surgery and whether it is an option for you. But, I'd definitely recommend looking into it. You might also want to go on disability, until you do have better seizure control, so that you don't have to worry about workplace accidents. If you are still living at home (with mom & dad), even better. Then you don't have to worry so much about money, just focus on solving the problem/s and getting better.Best of luck to you...I hope you're feeling better soon!Heather

oh, no, I'm sorry, I made a mistake. There is no damage to my temporal lobe at all. It is just the malformation in my occipital lobe.I have applied for disability, but I still need to get the paperwork, and I don't know if I will actually get it or not. Sorry about the misunderstanding.Thanks, Renee

hi renee, some of the manifestations of seizures from the occipital lobe and the temporal lobe overlap. sometimes a seizure spreads from one lobe to another (it isn't as though there are seizure proof barriers between the lobes) so while a seizure might start in your occiptal lobe it could spread to involve the parietal and/or temporal lobe(s). sometimes a seizure propagates along functional pathways... but in any case - there are no lobe specific medications.... my concern with your medication situation has been how quickly you have changed meds... it seems very fast in my experience with med changes. i understand that sometimes people need to do a fast wean in emergency situations.... but when i have changed my meds it has been done slowly - glacially ;-))

I thought for many years that the brain damage that I was born with was a portion of my temporal lobe hadn't formed and the area around it is malformed. My mom told me that it is not my temporal lobe that has the malformation. My temporal lobe was normal back in 1988 when I was diagnosed with epilepsy after an EEG and MRI was done. I know that seizures do affect the entire brain, but the neurologists told my mom that I was having seizures in only on place in my brain. That is why I had the MRI done, so they would know why I was having seizures in only one part of my brain. The Occipital Lobe is the lobe where a portion of my brain never formed, and the area right next to it is malformed. And with the EEG's that I have had, I know that is still the only area that is affected, otherwise they would have definitely told my mom and I about it.

Well, we have so much in common. They are saying my son has a malformation of the right occipital lobe. So, we can stay in touch. We are going for monitoring sometime in February or March, I don't have a date yet. One question I have for you is if you think you may have a loss of a field of vision (left peripheral), the outer most corner of your left eye. Have you ever been to an opthamologist and have that checked? It is possible that you could have been missing that vision all along and just never realized it since you were born like that. Something else that interests me is that you are saying that some of the area is missing? One thing I would just question is if it is possible that you could have had a stroke or hemmorage in utero. That was the first thing that they had told me, but my son does not have any missing areas or 'holes', which would indicate such a thing. With hemmorage, usually the blood is reabsorbed and tissue remains missing in that area. They say it is more common in babies than we think. I have to go over your writings again and respond again, gtg right now.

I am so glad that you replied. You are just the person that I need to talk to. I don't know if I have a loss of left peripheral vision. I probably have though. I didn't have to start wearing glasses until August of 1997. I was 15 years old at the time. It is very possible that I just don't realize that I have a loss of left peripheral vision since it may have been that way all along. My mom did tell me that after I was daignosed with Epilepsy, doctors checked my vision. I don't know the specifics or anything of that. Oh, and no, I have never seen an opthamologist to have that checked. I don't know if I saw one right after I was diagnosed when I was four years old or not because I don't remember any of that. I am just going by what my mom told me. What my mom told me what happened was that part of my right occipital lobe never formed, and the area right next to it is malformed. That's all I know. I don't know if my mom knows more or not. I don't think so, otherwise I would think she would have told me. But I will ask her anyway. The possibility of my having to have surgery is pretty much an absolute certainty. That is really my only hope to possibly get back to a normal life. I go back to my neurologist in April, unless something happens and I have to go sooner.Thanks again for replying. I am sure that we can help each other. I have to go now, but I will tell you about what has been happening to me because of my Epilepsy. In fact, here is my e-mail address. It is If you want, you can email me. And thanks again for replying. I know that we can help each other greatly since we can relate to each other so well. Now I really feel better now that I know someone is going through what I am. I hope to hear from you soon. Thanks again.Renee

I tried to email you, but it was returned. Maybe your box is full? I'll try again later.

There is a possibility that I wrote down the wrong email address. I'll give it to you it will go through this time. Renee

I used to get free medication, last year when I needed help badly. I found this site online for "free" medicine and checked it out. I filled out the application online, got a package in the mail and it said I was eligable. They covered both my medications and there was no time limit. As long as I needed the help, they were there. I'm at work right now, so i'll post it tomorrow, after I find the info at home. I added you to my buddy list, so write me whenever you want. I'm 30, have hormonal seizures every month for about a week straight and have been through hell with -jobs, doctors, medications, a daughter, a divorce, a crappy and unsupportive family (most of them) and so many seizures.....i'm losing my mind.....:0) If you need a friend i'm here, one has to give in order to get. -Kelly

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