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View Poll Results: Complex Partial Seizures / Complex Partial Epilepsy
Affects me occassionally 64 32.82%
Affects me frequently 83 42.56%
My Complex Partials are controlled 44 22.56%
My Complex Partials are uncontrolled / poorly controlled 78 40.00%
Complex Partials restricts me from doing things I would like to do 80 41.03%
I've been declared intractable / refractory 27 13.85%
I am undergoing alternative methods 18 9.23%
I am on too many / too little medication(s) 29 14.87%
I feel that Complex Partials isolates me 73 37.44%
I feel Complex Partials have ruined my life 43 22.05%
Multiple Choice Poll. Voters: 195. You may not vote on this poll

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  #21  
Old 01-09-2009, 02:42 PM
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I used to get strange feelings like people would be able to do whatever they wanted to do to me and I would be powerless to stop them. Other times I would play with things like my silverware on the table--bang it around or slide it back and forth. My husband would have to put his hand on top of mine to stop it. I've smelled the sulphur, too. What's with that? I went shopping with my friend and she said I pushed clothes back and forth on the clothes rack until she had to stop me. These things are enough to make a person swear sometimes.
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  #22  
Old 01-09-2009, 04:38 PM
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I agree. The strangest things can happen during a seizure and you have no idea what is going on. Sometimes I cry or flip out because I do not know my own family. I scared a friend that way. I had a seizure outside of a sandwich shop and she tried to get me to come back to work, but I flipped out and wouldn't let her touch me because I did not know her. Finally, someone else was able to lead me back to work after the seizure finally went through my body. Scared her to death though. As you can imagine. I did not have many lunches with her after that.
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  #23  
Old 01-10-2009, 02:36 AM
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Since i had my tonic-clonic lil more then a year ago and realized that I had complex partials as well, I've been cycling meds. Tegretol is the base, but i've been through like 6 or 7 different meds tryingn to control the partials.

Sometimes I remember, sometimes i don't. Usually just zone out, cant' talk or function, do the ol deja vu dream like thing. Good times

I'm having them more then I ever did before now, some weeks I'll have 2-3 almost every day, other times i'll go for a week or two with none. Use ot be i'd have a spat every 6 months for like 2 days.

I work at a distribution center so i'm out in a huge warehouse now, and I must admit that Travolta thing got me thinking and scared again. Who knows when / if i'll have another major one? Think it's time for me to find a safer work environment Having a seizure on a fork lift could be bad.
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  #24  
Old 01-10-2009, 02:50 PM
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Thanks Brain,
I clicked on the links and printed them out to read and hopefully learn more.

Belinda
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  #25  
Old 01-10-2009, 02:57 PM
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Cool


I have a question about seizures had in my neurologist's office.

I was sitting in a chair my right arm started shaking , and heard him say she 's
having a seizure. I could hear everything and little while later I fell to the floor
and I was shaking and starting kicking my arms were swinging.Hit my head few times, than I slowly started coming out of it.

Do you think I had 2 seizures not sure what kind?
my neurologist said he hadn't seen some of the movements in a seizure before.


He has a hard floor.

Belinda
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  #26  
Old 01-24-2009, 01:09 PM
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Originally Posted by greathoneybear View Post:
My aura is usually a wierd feeling in my stomach or loss of hearing, then I start speaking in garbled speach. I always say the same words, "I want to go home now." Then I am gone. My seizure lasts for about a minute to a minute in a half. My one friend told me I recently stared off and started folding the napkin over and over and when I "came back" I acted like nothing was wrong. I also have drop seizures, where I just drop wherever I am. I hate those. And I hate the ones where I can hear people, but my body won't let me talk or anything. I feel like I am in a coma. Personally these seizures have also ruined my life. Has anyone ever had the ones where you smell sulfur and you think something is burning? I hate those too. But I tell you, my soon to be ex-husband couldn't deal with it, so I met a wonderful man who could. So there are people out there who love you no matter what.
My complex partials usually starts out with the sound around me condensing into the middle of the room and a strong smell of burned bleach (??) which confuses me because I never smelled anything like that before- so i have no idea why that is the only way i can describe it. HEHE. Usually I have a long enough aura to let someone know i'm about to go to "The Land of E" as I call it. I have a poem about it in the creative writing room. Anyways, I have no idea how long I am away but I come back and am confused and slow and cannot talk for a little bit and so I will either sign or type something or just wait a minute till everything is back in order. Sometimes my auras are so short that i don't have time to say anything- it just comes to fast!
Have you ever had that?

The sulfur smell is probably happening as the neurons are misfiring near the part of your brain where your sense of smell is..
I am very happy for you that you have found someone that is kind to you and respects you despite your epilepsy. I have my twin sister who also has epilepsy and my best friend Rachel (pictured above) who has epilepsy and it really does make a difference.

Take care of yourself.
-CM
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  #27  
Old 01-26-2009, 12:29 AM
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CM,

I am also glad that you have such a great support system. It must be tough for both you and your sister to have seizures, but at least you can help each other through the tough times. I have lost many friends over this problem because they just couldn't see that seizures are not a big deal. I am still the same person inside. People who I thought were good friends, turned out to be very shallow. It is tough to find good people who can handle our condition. The sad part is, seizures do not last very long. We are still the same after the seizures are over and it would be nice if people remembered that and didn't freak out when the seizures happened. I once had a "friend" who I had lunch with every day at work and when she saw me have a seizure and I did not know who she was, bye bye lunch. She did not want to be seen with me anymore. So sad. It wasn't like I was going to have a seizure every day. Oh well, some people just cannot deal.

That is when I chill out and just watch a good movie that makes me laugh.
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  #28  
Old 02-14-2009, 11:39 PM
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I had auras a lot before I started my meds. ninety percent of the time I felt anything was that aura. Anytime I ever had a complex seizure I could feel it coming, not for long before it was full blown. I wake up and forget what I was doing. I fell like I walked into a room and forgot what I came in there for. I usually vomit also. Even sometimes during the aura. When they first started 7 years ago i would get an aura and as soon as I vomited it was over, then the more I had the longer they last.
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  #29  
Old 02-15-2009, 04:23 AM
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Hi wife and mother, I know how you feel. A lot of times I will go into a room and forget why I was going in there. The same thing happens when I want to go speak to someone. I do not remember what I was going to say.

I am glad you are here. Welcome!!
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  #30  
Old 02-19-2009, 12:49 AM
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Originally Posted by wife and mother View Post:
I had auras a lot before I started my meds. ninety percent of the time I felt anything was that aura. Anytime I ever had a complex seizure I could feel it coming, not for long before it was full blown. I wake up and forget what I was doing. I fell like I walked into a room and forgot what I came in there for.
You are not alone! Welcome to the Club!



As it's been said on the movies

"... done, did, dooed it..."

And as a poster from another forum has posted which
I would imply is the best post I could ever say:

EPILEPSY TAKES YOU ON FOR A VERY STRANGE RIDE!
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  #31  
Old 02-25-2009, 01:21 AM
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Hi Brain

I agree with you 100%.
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  #32  
Old 02-25-2009, 03:13 PM
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I've always walked into another room and forgot why I went there, but I thought that was normal. When I went back to where I was before, I could remember why I went into the room I had gone into. I thought everybody did that. My kids tell me they do that all the time and they don't have epilepsy. Sometimes I forget things I was supposed to do in another room and go back to where I thought of it and then I can go back to where I was supposed to do the "thing" and remember what it was that I was supposed to do. Everybody tells me it's because I'm over 30.
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  #33  
Old 03-15-2009, 09:40 PM
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I do think people without E do the same things. I think we start to think everything we do is seizure related. I recently had a neurologist/Psyc exam and a WADA. My memory is much better than I thought. A lot of the forgetfulness is normal human behavior. I see my kids do it all the time.
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  #34  
Old 03-15-2009, 11:07 PM
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Hi greathoneybear, I love your name.

I had friends in high school. I always told them I had epilepsy. I only had absence seizures.They seemed like genuine friends. When they quickly left me, I did not worry. They were not friends at all. Otherwise, they would have remained my friends. I only had one friend in high school. That was in 1957. A lot of people did not understand epilepsy.

When I was dating, my to be husband, I had a seizure. It scared him to death. Only because I had not told him I had epilepsy. He understood. We were married in 1963 and he has stuck by me through thick and thin. We are still married 46 years later. Some people even understood then.
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  #35  
Old 03-16-2009, 10:43 AM
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feast, I am so glad your husband has stuck by you. I am currently getting a divorce from my husband of almost 20 years. It just got to be too much for him to handle. I have had seizures (it will be 13 years this year) for awhile now. I guess he just became frustrated that he couldn't do anything to help. The hardest part for me was the doctor wanted me to quit work and he did not. He wanted the money (who wouldn't), but now that I am on disability, I am so much better. I have found a guy who is so much more understanding. Sure it scares him and he does try to find ways to help, but he is there for me and helps me through them. I couldn't have asked for a better man.
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  #36  
Old 03-23-2009, 11:50 AM
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Hi Sharon

This is the time that simple partial and complex partial seizures have been explained to me in great detail. I have them. I will repeat myself over and over again. I have been lost when I have been one block away from my house. I get confused. I say things and I do not know why I said it.

From the first quote from eMed, it says it can happen after "ictus." Does that mean status epilept"icus?" I have had 2 status epilepticus episodes. It was after those that I started having them.
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  #37  
Old 10-08-2009, 01:55 PM
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I experience many complex partial seizures per day and most leading into grand mals. It used to not be that way. I started off many years ago with simple partial seizures, then it progressed to complex partials and now into complex partials that lead into grand mals. Yesterday, I experienced a complex partial and many grand mals. I even have grand mals in my sleep, whereas that used to not happen at all.

Yesterday is a fine example, I had a complex partial and even though I don't remember much my husband told me I scared the crap out of him. He stated that I became very angry and aggressive and started to throw things around. I then grabbed my car keys and headed out the door, without saying a word. He said I got into my car and he tried to stop me but it was too late, I was already heading down the driveway. He told me that I came back and grabbed the newspaper out of the yard and came in the house and said "I wanted the newspaper so I went to the store." He said he asked me a series of questions but I replied the same sentence over and over. He then knew that a grand mal was going to hit. It did hit a few minutes later and then he told me that I had a grand mals that were 30 minutes apart from each other for about 4 hours. I could hardly believe it when my husband told me later on what I did. It is just scarey. Needless to say I handed him my car keys this morning. I haven't drove my car since I realized I am having seizures so that was a first.

I have not been officially diagnosed yet but will soon. My neurologist is on my case.

tam bam
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  #38  
Old 10-08-2009, 08:51 PM
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Hi tam bam,

Does your neurologist know that you are having many every day? You need to tell him everything you told us. Get diagnosed you need medicine or an alternative method that are explained in the forum. Neurofeedback, diet and other things that work. In the Social Groups, there are diets that you can check out!! I am on medicines.

I never drove a car. I started having absence seizures when I was 6 years old. That was 60 years ago. When I was of driving age, people with seizures could drive. I decided against it. I did not want to kill myself or others. I have never regretted that decision. I use public transportation, walking and Dial-A-Ride. Whenever we move, I will not buy a house unless it is close to a bus stop. Dial-A-Ride is when they come and pick you up, take you where you are going and you call them when you are ready to come home. It is not expensive. Call up public transportation at the transit center in your city.

Do not drive!! you are a danger to yourself and others. Get diagnosed. You say your doctor is on your case. Have you been going to your appointments?
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  #39  
Old 10-09-2009, 09:12 AM
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Thanks for the reply, Ruth. I have told my neurologist everything and I have meet with him only twice. You see I have had a time even getting to the point where I am at now. Ever since the seizures have been coming on I have been trying to seek help but was always misdiagnosed even by other neurologists. I was misdiagnosed for years as having either migraines, a movement disorder or just being plain crazy. Mayo thought I was crazy and told me so. I never felt so low in my life. I have hired and fired so many doctors it is not even funny. I didn't even have the slightest clue that it could be seizures until I met my current neurologist, (I hired him in August of this year), and he told me that I am having seizures but that he needed to perform an EEG, (Had the EEG performed just this past weekend). He will not diagnose me with it officially with it just yet but I am sure he will soon. He seems very intelligent.

As far as the medicine. I am now currently on Lyrica. It does not work and I have told my neurologist this as well. He told me to go back to my family doctor to get my medicine switched since he did not prescribe it and that he didn't want to put me on anything else until he has investigated my situation a little better and find out more about my seizures. I understand that but this is really bad so I did go to my family doctor and she put me on Topamax but I cannot afford the prescription, because my insurance will not pick up on it until I have the word seizure or migraine in my records. I know you are probably thinking well, you were diagnosed with migraines before but that was by another neurologist that has retired now so I can't call him or anything. My family doctor has seen the seizures and she told me they look like complex partials and she is a smart cookie as well. It has just been a slow and drawn out process to get me the right kind of care.

People think that all seizures look the same and even some doctors think this as well. I stumped the whole Mayo neurology team while I was there and that is why they called me crazy. They didn't directly call me that but they told me I needed a shrink. Yes, I do some pretty crazy stuff with my seizures but I am not crazy at all.

Anyway, I do not drive intentially, I did the driving incident the other day while in the midst of a seizure. I gave my keys to my husband and told him to hide his keys from me, which he does now.

I know my story sounds a little odd but it has been hell for me over the past 10 years not knowing what is wrong and how to help myself but somehow I have managed and in about three weeks I will see my neurolgist again and hopefully he will have a good EEG to read and get me diagnosed FINALLY!
I want that more than anything right now. I am on the right road finally, it is just getting to the finish line now.

Thanks again for your concern Ruth, but I am getting help, it has just been a slow process.

tam bam
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  #40  
Old 10-09-2009, 11:26 PM
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Originally Posted by tam bam View Post:
Mayo thought I was crazy and told me so. I never felt so low in my life.
People think that all seizures look the same and even some doctors think this as well. I stumped the whole Mayo neurology team while I was there and that is why they called me crazy. They didn't directly call me that but they told me I needed a shrink. Yes, I do some pretty crazy stuff with my seizures but I am not crazy at all.
Hi Tam bam, I disagree with the Mayo team. You are not crazy!!. Have you asked for a V EEG? That will show up exactly a correct diagnoses. I believe you. You have come to the right place for support. Think positive. You do not need to feel low. Your Friend, Ruth
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Last edited by Ruth; 10-09-2009 at 11:28 PM.
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