New to seizures, epilepsy and have some ?'s!! Please help with any info

[JennyPotter]

Hi all!
My name is Jenny and my son has been a diagnosed epileptic (grand mals) for almost 2 years (he's 9 yrs old). Just as he was about to be pulled off of depakote, I started having seizures, also grand mals (3/13/12). The first one was scary enough, but since we have been through it with JJ, my husband and teenage daughter kind of knew what was going on and what to do. After 4 days in the hospital and many test, finally they did the EEG and per the doc, it was "all out of whack" (her exact words). Well, about a week or so later, I was walking home from work for lunch (10 min walk if I am slow and there is a lot of traffic) and I felt what I can only describe as a "shock" to my brain. I felt a little light headed afterward but I didn't black out or fall to the ground...it was very mild. So I didn't really think anything about it other than "good, keppra is working to stop them" and "it would have been worse if I wasn't taking my meds". Well - this past weekend, I remember Saturday morning, then only flashes of "screen shots" until late Sunday! I have never blacked out like that. My family doesn't seem to think it was a seizure because I didn't act like I did with the first seizure or like JJ when he had any of his 4. I am so confused! I am not a drug user, but that is exactly what they think I did. According to everyone that witnessed the events, I was angry, packed a bag, left the house (walking), told my husband that i hated him (which I don't..I love him very much!). My daughter said that I was acting out of it Saturday morning, then my husband and i started arguing (which we never do), I left the house and when I came back hours later I was totally disoriented and my eyes were glazed over. My husband thought that somehow, someway (with NO money on me) I somehow located drugs and used them...I don't need money because I can't drive and I wouldn't even know where to begin to look for drugs, much less want to use them! I have never been like this before, especially with no reason for it. Is/Was this a (or many) seizures? If so, how can I explain this to my family that I hurt so deeply when I was so out of it? I would appreciate any kind of information! Not only for my own sanity, but to try to heal my family that I caused so much pain to with these crazy actions that I have no explanation for or memory of! I am absolutely begging someone to help me with any kind of information on this! This has caused a huge rip in our very loving family and my poor son thinks his mom is on some kind of crazy drugs and my mother in law, well - typical mother in law - there is no convincing her of anything other than I was on drugs...but I swear on everything I hold dear, that I was not on any drugs other than what has been prescribed and ok'd by all my docs that know exactly what is going on with me!

 

[Electra]

Omg! My heart goes out to you. It can put a strain on any relationship that's for sure. Sometimes I need to rest after work or all day with the kids because I feel exhausted and if I am tired or stay up too late and don't rest or am stressed I get those shocks in my head, double vision , then unplugged episodes. I forget where I am for a few minutes and can't speak, everything around me seems familiar but I am not sure. Then I snap out of it and feel tired. I wonder then will I have a grand mal later in the evening or when I am asleep as this is usually the process leading up to a seizure. But so far I have been doing good as I am paying attention to myself more and taking meds. But my husband and I have had run ins over it and I have threatened to leave because he was insensitive and I don't think he really understands the sensations I go through and it pisses me off . It's only when I end up in hospital that he realizes he needs to be understanding. I have got to the point where I don't care what anyone thinks. I am going to look after myself, try to stay healthy as possible and be there for my kids. Driving is always an argument though as my doctor says I can as long as it is controlled but my husband doesn't want me to drive. Some people are very ignorant including family members and their is nothing you can do about their negative thoughts. There are a few times I had seizures where I lost my memory for three weeks with friends coming up to me in the mall and I didn't have a clue who they were but I remember them now. I felt like I was losing it. But I am doing well so far...so good with regards to the seizures. Anyways, talk to your doctor and maybe your closest friends that's what I do. Sometimes family are a pain in the butt. Some people need to walk in your shoes before they understand. Hugs to you!

 

[epileric]

Welcome J.P.

I've had seizures all my life but I've been lucky enough to have a parent that worked in the medical community & was very familiar with what a seizure looked like, how someone might act after a seizure & the side-effects of anti-convulsants.

I had a harder time in school though. Before I'd ever tried drugs, because I had an awful memory people would assume I was stoned, even the teachers & principal thought so & they knew of my seizures & meds. Of course I often have trouble talking & thinking after a seizure so I actually lost a job because I had a seizure & the boss thought I was drunk & didn't want to hear any other explanations.

You may want to show your family the list of symptoms for a partial seizure since that sounds most like what suits you. You might also want to check the symptoms for all the other types of seizures. It might give some credence to your side of the story. I can only imagine how much it hurts not to have your own family believe you & accuse you of such things. You should sit them down & show them where it is documented what might happen with seizures & medicinal side-effects and get it through their heads that "drugs" are not part of the equation unless it's your medicine

If ever you feel it will help to vent we have a padded room that non-members can't access so that you can just vent away.

 

[Kaitybugsmom]

Hi Jenny,

I am so sorry that his has happened. A diagnosis of Epilepsy is hard enough as you know but then to have something happen that you can not explain. What a scary experience. I am sorry that I have nothing to offer except an open heart and a listening ear. I agree with epileric, from what I've read is sounds like partial seizures. Maybe a combo between partials and med side effects? Have you called your Dr/Neurologist to communicate to them what has happened? Please keep in touch and keep us posted on how things are working out.
(((hugs)))
Heather

 

[Nakamova]

Hi Jenny,

I'm sorry for what you are going through. It sounds like a complex partial seizure -- where you don't lose full consciousness, but instead, your awareness and responsiveness are impaired. It's a bit like sleepwalking in that sense. Definitely call your neurologist, let him/her know what happened, explain that your medication needs to be reviewed because of serious, long-lasting seizure episode that left you and your family confused and upset. Try and get a quick appointment, especially so that your family can start to understand what happened.

This site may be of help: http://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/complexpartial/index.cfm

It includes this info:

During a complex partial seizure, a person cannot interact normally with other people."
Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.

During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.

Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.
Often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.
A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

Hope this helps,
Best,
Nakamova

 

[JennyPotter]

Still more questions

Thank you so much to you that replied. It was wonderful information that is given in a way that you don't have to have a medical degree to understand! I still have more questions though. My first seizure was a full blown grand mal...the second was a "shock"...and now this last one, I am guessing, was a complex partial seizure. I was under the impression, because of going through this with my son, that you get 1 type of seizures and that it. But then again, why am I having 3 different types in such a short period of time. This is so shocking! I am 36 and according to the doc "too old to start having seizures for no reason". Nothing happened to me! No trauma, no head injuries....I feel like they have just labelled me an epileptic, threw some keppra at me, and walked away! I have called the doc about the last episode because I KNOW I didn't do any drugs...so it had to have been some kind of seizure or something to do with my brain! ... the chickie that answered the phone said that the doc was out till Monday but if I felt that it was that important, that I should go to the ER and let them run some test on me and that the doc would get the results on Monday. Really!?... You would think that with all of the money that I have to pay...I would get more info from my doc than here in a forum...but I am getting so much more useful information here than at any appt I have had with her! More info would be helpful...But I am going to take the advise of looking up complex partials to see how that matches up to what happened to me last weekend. Thank you again guys!

 

[Nakamova]

People can have more than one variety. The ones called simple and complex partials can "generalize" -- i.e. spread from a "partial" area of the brain to the the whole brain -- in which case they become grand mals. It's possible that you had some kind of partial seizure before your grand mal, and just don't remember it.

There's a chance that the Keppra is causing your latest symptoms -- for some folks it can make seizures worse. Another reason to meet with your neuro as soon as possible to discuss your options.

 

[epileric]

I know if I don't get my medication I'll most likely have a tonic/clonic (grand mal) seizure.

Usually though, I get both complex & simple partials. They do say variation is the spice of life.

 

[Starfish]

It sounds like you're having partial seizures. They do have a tendency to act like you're crazy afterwards. The day after I have a (partial) seizure people sometimes ask if I"m high (I'm in high school so, everyone assumes I am), but I DO NOT do drugs. It's all part of the post-ictal process.

 

[acpollard2010]

im sorry jenny but thats bullcrap they have on-call dr.s who u can talk to and family shouldn't be like that i would haqve a long talk with my spouse about that there is suppose to be understanding my wife has a hard time with it but we have no kids and my whole family butts in a lot of crazies where they been the last 14 yrs.but i really hope u find a good answer for you.

 

[JennyPotter]

First of all, let me start by saying thank you to everyone that has posted here for me! It's been wonderful information from people that have knowledge instead of guessing. I have fibromyalgia, diagnosed for 15+ years. My husband is not very understanding of my problems there either. He has never been one for much sympathy for things he doesn't understand of have happened to him. In all other areas of our marriage, he is normally a wonderful husband and father. Since he doesn't understand (and neither do I) how a seizure could copy the actions of a person that is "high", then he went with the more "logical" answer....even though it was the wrong one. Since that was his first response to what was occurring with me, he announced that (loudly and clearly) in front of our children, who now also cannot seem to grasp that there may be another reason for me behaving so strangely. I tried to see if it was in fact a complex partial seizure. I had my 14 yr old daughter read the article that covered the symptoms for such a seizure and she is convinced that my actions do not reflect all that should have happened (or not happened) according to the article. I, on the other hand, cannot say one way or the other because I have no recollection of what did actually happened. So I am hitting a big wall of not only confusion, but convincing everyone that I am not on drugs, and also trying to get my family to understand that even though I may not have one of the side effects of such a seizure, I did have other symptoms and side effects suggested in the article. Again, I can't stress enough, that since that is what my husband jumped to first, it is a loosing battle convincing everyone else that something medical happened. Now whether or not it was a complex partial seizure or even a stroke...it WAS something that happened that had nothing to do with drugs, neither prescribed or illegal! Now, is the doc going to be able to perform the EEG and know that I did have this particular type of seizure. I don't see how. It's not like I have a key drive that you can pull out of my brain - in order to see the history of my brain waves. But I do hope she can shed some light as to what did happen. This is so frustrating!! Thank you all for believing me! As sad as it is, that strangers are giving me the benefit of the doubt when my own family isn't.

 

[JennyPotter]

But that's the thing...even my HUSBAND thinks I was high...even though I had no money and I didn't drive to the bank to get money...he can look at my phone to see I didn't call anyone..heck I wouldn't even know who to call! But their version of "high" means marijuana high...i think (i hope...god it would be a lot worse if they think I am doing crack or heroine!) but again...my husband knows me and I am not (or ever been) a pot smoker. I don't like the smell...I don't like the aftereffects of cotton mouth or the "spins" that you sometimes can get...I don't like that "high" so I never did it. I can be around other people doing it (not in a small closed room) and it doesn't bother me that other people do it...but I have always just said "no thanks" and continued with my conversation or whatever. But I can't stress enough that my own husband of 14 years knows I don't do pot and knows what I have done in the past before I "grew up" and had kids and a steady job and a house...all the grown up responsibilities do not allow for drug use, occasional or otherwise....but anyway...before we did "grow up" we did party a little and he knows what we did and how I acted on what we where doing. At no time did I ever act like I did last weekend. I didn't recognize him, didn't acknowledge my kids, I even told him that i hated him (which I have never ever done before). It is just insane that the people that are closest to me would rather take the "your high" and be mad at me for being "high" excuse than to look to see if there is another reason / a valid medical condition type reason for my way out there behavior! I am hurt, confused and aggravated! It would be one thing if it was people that I didn't know...like the emergency responders that came and took me to a rehab facility instead of to the hospital...they were going by what my husband had said to them and figured he knew what was going on...they released me the next morning because I wasn't trying to hurt myself...but what if in that black out state, I did accidentally hurt myself? What would have happened then? My guess is that they would have done a drug test, that I would have passed, and then my doc would have been called in and I would have had a diagnosis instead of this dreadful guessing game. I am so confused on the simple/complex partial seizures! I get that one effects more of the brain than the others..but no one around me can see my brain and what the seizure is doing in there. I need to know the specific side effects from all of this. I blacked out for over 24 hours! Which I think is what has made my husband slowly start to believe me a little. Because at no time ever had either one of us had a 24 hour black out! He doesn't fully believe me, but I think in some small way, he may be trying. Just for me, it's not fast enough. I need my family to support and believe me right now...not later..now!
Back to the types of seizures...since I blacked out I may have had a grand mal too? Since I wasn't at home (don't know where I was) i guess I could have had a grand mal and not known. So the partial (simple/complex) may bring on a grand mal seizure?
I am so freaked out about this that earlier today I send my husband a text (he is upstairs doing his college course stuff) letting him know that I felt lightheaded, dizzy, and a little confused and that if I started acting like I did last weekend, to not even ask me what was wrong, just load me in the truck and take me to the er. I feel that I shouldn't have to ask him to do that, he should just do it. Oh well....EEG on monday...I will let ya'll know...however, doc said that she wouldn't have the results right away so I have a follow up on the next monday after that for the results....i hate this so much!
Thanks to all that have given me some hope that I am not crazy, I didn't do any drugs and that there is a reason as to what happened, I just have to find it. THANK YOU!!

 

[Abynorml]

The waiting is often he hardest part, sorry your going through this, your not alone, alot of us have had to go through all this BS and people not believing us treating us like we're on drugs or crazy, I hope you get answers and heal the wounds of mistrust in your family.

 

[Krista2882]

Back to the types of seizures...since I blacked out I may have had a grand mal too? Since I wasn't at home (don't know where I was) i guess I could have had a grand mal and not known. So the partial (simple/complex) may bring on a grand mal seizure?

When you say you "blacked out", are you referring to the whole episode where you were acting strangely to your family and then left the house for hours? It sounds more like you continued to have a partial seizure. Blacking out would literally mean losing all consciousness. I assume it is possible you had another gran mal that day while you were away from home, but it sounds like you're talking about that whole weird episode that day and that the problem is just that you don't remember it.
A simple partial seizure would be a seizure that happened while you were fully conscious, like maybe that "zap" you described could have been a simple partial seizure. But like others said, a complex partial just affects a certain part of your brain, and you remain conscious, but in an altered state of consciousness. You'll still be moving and speaking, but it won't make sense and you won't be yourself and do things that are uncharacteristic for you. Because you're in this altered state of consciousness, you don't remember any of it. I think that the lobe of the brain affected also has to do with the way you act in this state, and what kinds of things you were doing.