I'm new and having problems with postictal aggression.

[spiralarms1177]

I'm so glad to find this forum. I've been looking for ways to deal with the aggression after seizures. My seizures turned more severe and the higher state of confusion seems to be the reason. I have story after story of bad incidents after seizure when out in public. I read some from other people earlier. Mine are similar. Being accused of assaulting a police officer and spending 2 days & 2 nights in jail with four broken ribs. Had one in a car and they mistook it for a psychotic episode and I was a psych ward for 10 days. One was on a Metrolink platform here in the city and I ended up with a broken collar bone, concussion and was thrown on the railroad tracks. Like most of you, I have no recollection of anything happening.

Epilepsy is my biggest challenge to starting a new arts program. I need to pay someone to drive me to places like art studios on locations, meetings and presentations. I also need to pay someone to be with me in case I have a seizure so they can tell people to leave me alone and not try to help. I created website for the art program, it's a good idea. I want to do it and not stick the idea in a drawer. If I have to I'll try and find someone to give it to who doesn't have these kind of limitations.

I wanted to introduce myself and hi. I know we can learn from each other. I found out today that there is a tablet available one can take after a seizure to diminish the amount of aggression. My doctor hasn't gotten back to me on that yet. Maybe one of you knows more about such tablets.

 

[Alicealice]

Hi there

I don't know anything about these tablets as I am very new to all of this having just been diagnosed a week ago. But I just wanted to say hello and wish you well because I understand how impossible the emotional side of things is. I'm a kind loving person but post-seizure emotions have seriously damaged my family and personal relationships recently so i really empathise. Stay with the forum, it's really supportive and heart-warming. lots of love

 

[Belinda5000]

hi spiralarms

Yes epilepsy can be a challenge.But it's not the end of the world.I've broken both my collar bones and my nose, but that's life and I've busted my head open dozens of times.Not everytone remembers there sz's I don't.

I've never driven and I've taken public transit for the past 25 yrs I refuse stay at home and wait for my next sz if I seize in public so be it.

I've had my share of postictal aggression and ppl that think I can and should control it.
I've had E since I was 2 years old and my sz's never been controlled enough for me to drive.

I have a website on epilepsy myself I created years ago. You can't let epilepsy control you fight back.

 

[Googman]

Dear spriral,

My experience told me that i was prescribed too much medication to reach the (Therapetic level) for my weight. That level turned me into a jerk over the yrs and one day i just cut it back some.

If you basically follow the (ketogenic diet routine) and eat more naturally, you may be seizure-free with a smaller dose or with none at all...

Regards,
Googman

 

[spiralarms1177]

Big thank you

Is it true, that many people's first reaction after first joining CWE is, "...and I thought I had it bad". I don't take comfort in that. Your words of encouragement come proven and tested. It makes me think of helping others as well as myself. Thank you. I consider myself fortunate to be an artist. If I figure out how to put some images in my profile I'll do that soon. I do caricatures and portraits. My background is in design and illustration. We say in our art program that the imagination has no limits. You don't have to go anywhere and can go as far as you want to.

I assume we all here as a result of Epilepsy, have an abundance of time. There's things that inspire me. Such as a passage from a book, a favorite quotation, poem, song lyric, something from a movie. I enjoy visualizing them, typesetting them and making wall hangings for the apartment. Science and space are a big theme for me. Art and music are immediate medicine. I try not to let time just pass by. Art and music lets me collect it. It's there when I want it instead of too much of nothing.

If you know any good songs, let me know, or favorite quotes. I've rambled on long enough. So I'll give you examples of mine later but here's a couple:
"I'm Alive" by Celine Dion, "Keeping the Faith" by Mark Chapin Carpenter, "The Way" by Dana Glover, and a thing from his book by Joseph Campbell "The Power of Myth" called "The Hero's Adventure".

Thanks again.

 

[spiralarms1177]

Thanks Goodman

I have some trust / some distrust of doctors. It's become too much of a business not to wonder sometimes. Don't know if I'm ready to make big changes on my own though. My problem with the medicine is my hands shake too much now for me to draw. I can do work on the computer and iPad.

 

[spiralarms1177]

I just find what has happened to you amazing in terms of injuries and having this condition from 2 yrs old. Thanks for the encouragement. When one says fight back, you have to immediately think of how instead of doing something else. I guess the first step is have that attitude and go from there. Thanks. What good things I find ahead I'll let you know.

 

[valeriedl]

I'm sorry that you get violent after a seizure. I usually just get very confused about everything that is going on.

How well are your seizures controlled? Do you take any sort of medicine for epilepsy/seizures? You may need some changes done to help with your seizures. Finding the right dr means a lot too. I was seeing the nurse practitioner every other visit. She didn't listen to anything I had to say and was no help. I blew up in the office on my last visit with her and have only seen my actual neuro since.

It took a few years to get my seizures some what under control. I went from at least 20 or more a month to on average 7. They don't last as long and they aren't as bad. I very rarely have TC mine are usually partials.

I've had epilepsy for about 11 years now and haven't been able to drive since then. I know how hard it is to get places. There's no public transportation where I live but luckily I have family near by. I just have to be able to work my schedule around their schedule which isn't easy at times.

Do you wear any type of medic alert bracelet or necklace? After a seizure this could help who ever it is that comes, police or medic, understand what's going on with you. If you get one then you may not need to keep someone with you all the time or end up in the hospital.

I've had several seizures in public and really I don't care where I have one. I know I have epilepsy and I'm going to have seizures so I'm not going to sit at home locked up in the house and wait for the next one to come. If people I don't know see me have a seizure I don't care. I know your situation is a little different than this however because you said you are violent after your seizures but try and feel the same way.

I'm glad you are doing the arts program. This could get your mind thinking about things other than epilepsy and seizures which might calm things in your brain down. Concentrate more on painting (or I'm not exactly sure what you will be doing) than seizing.

Good luck and it's nice to meet you!

 

[spiralarms1177]

Valerie

You said you experience a high state of confusion afterward but not necessarily any aggression. Do you remember all or part of what happens? I don't remember anything. I just go back to drinking coffee or something like that and someone needs to say oh by the way, how was that seizure, was it good for you. That's the weird part. How all that stuff can happen and I'm just blank.

I have about 2 - 3 seizures a month, the meds don't fully control them. 20 seizures a month must be incredibly hard to deal with. I take 3 kinds of medicine. I have a good doctor, a neurologist that specializes in Epilepsy. I went into video monitoring for a week but they didn't do well at locating the origin of the seizures. They want me to start a series of surgeries and monitoring. Where they drill a hole in each side of the head and put electrodes in. The first one would only tell them what side of the brain it's on. Other attempts would locate it further. I don't know if I'll do this. I want to start this program and I think their starting point is too much of a guessing game.

You should stay with your doctor. A nurse is for other things. I'm going to use a person from a home care service for driving me and being with me with the extra money I just made. It's on a private pay basis at $20 an hour. I wear a medical alert necklace but I don't think it helps much. Situations happen too fast to prevent a scene.

What you and experience is different but what we face is the face. I know what you're going through in general though I don't know the details of your days.
I'm grateful for the opportunity to meet you and the others here at CWE.

I haven't had solutions to the limitations about going out until recently. I've made some extra money and can afford hiring someone for awhile. I'm enthused about this arts program and intend to make good use of my time. I wish I could give you our website address. I think you'd like the idea behind the program. I now have a chance to make some presentations. Money is not important to me. I love doing art. Any kind of art.

Thank you for your kind words and good luck to you too.

 

[valeriedl]

During a complex partial I'll black out completely and won't remember a thing that went on during it. I usually don't even know that I've had it. Like you said someone will ask me "How was that seizure you just had?"

Sometimes I'll just sit and stare off into space the whole time. During others I'll pick up things and do stuff with them. My husband told me that one thing I like to mess around with is my cell phone. He'll try to take it off of me but I just don't want to give it up. After trying for awhile he just lets me go and figures if I call someone then I call someone.

When I'm coming out of a seizure I may be very confused and don't know the answers to questions that I'm being asked. My neuro said to ask simple questions like "What is my name", "What is the person's name who's asking me the questions", "Where am I", "What's the pet's name", "When's my birthday, and things like that. When I know the answers and can answer them quickly and easily that's how we know that I'm out of the seizure.

After a recent seizure I had I kept insisting that I was next door, at my grandparents house, and that I needed to go home. I had been at my grandparents about an hour before I had the seizure. My husband told me that I was home and asked me who he was. I kept telling him that he was my grandfather and that I needed to go home. I think I may have been a little aggressive with him during that one because I wanted him to get away from me so I could get home. When I came out of the seizure I didn't remember a thing that I did during it. I knew I was home and that I had been at my grandparents and what I did there.

My very first seizure, in 2003, was a major TC. I had to be put in a medically induced coma because the couldn't get the seizures to stop. I think I was in that coma for at least two weeks before they felt it was safe to take me out of it.

They have no idea what caused that seizure. I don't do drugs (which can sometimes cause seizures) and didn't fall. They found out soon after I was diagnosed with epilepsy that I had damage to both sides of my brain. Don't know what sort of testing they did though but I know it wasn't any type of surgery like you are describing. Because of that I'm unable to have brain surgery. Many other people on here can give you better advice on what sort of testing can be done.

Since I'm unable to have brain surgery my neuro suggested getting a VNS. It has helped a good bit with my seizures. I'm still having them but not as many and they aren't as bad. I am still taking medicine along with it too.

Here's a great thread to read telling you more about it if you may want to ask your neuro about it : http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/
I'm not sure if I did the link right. The thread is called 'my vns experience' and arnie is the one who started it.

After that first seizure I lost almost 10 years of memory. Almost everything from my sophomore year of high school to that seizure was gone. I had been dating a guy for a year before that seizure and I had no clue who he was. I had to ask someone who the guy was that kept coming to the hospital telling me he loved me and giving me kisses.

The next few years after I'd have a seizure I'd loose hours to days before that seizure. It isn't like that now unless the seizure is very bad or I have several close together. My memory still isn't that great in general. After around 3 years I'll start to forget things.

I hope this helped you out some.

 

[spiralarms1177]

Thanks

I forgot you were in a coma after that first seizure. Sounds scary.

Like most people here, it's a mix of reactions from friends and family to my confused behavior after a seizure. Most people take it in stride and we smile or laugh about it. Between all of us here in CWE the stories must be endless. If I was a Hollywood producer I'd consider creating a prime time sitcom based just on true stories we share.

I have severe memory loss from exposure over time to the seizures. Mostly long term memory. I've upset a few friends, some former girlfriends, who come up to say hello after not seeing them for a long time and I don't remember them. Your memory loss is more severe. It must have made for some hard times along the way and be hard to deal with along with a sense of loss that you can't do anything about.

Hang in there. You have a great attitude. You are helping others.

 

[Nakamova]

Hi spiralalarms177 -- I wanted to add my welcome to the others. I hope you can get the seizures under control. Post-ictal aggression can be tough for onlookers to recognize and deal with properly. If you think it will be an ongoing problem, wear some kind of medical information tag, and make friends with your local EMTs and police, so there's a chance they will treat you better if you cross their paths while post-ictal.

My problem with the medicine is my hands shake too much now for me to draw. I can do work on the computer and iPad.

My cousin was an editorial cartoonist for many years, until he developed Parkinsons and was unable to draw. Like you he turned to the computer/iPad. At first he was frustrated that he couldn't draw in exactly the same way as before, but then he embraced the technology and has flourished, illustrating books and doing animation. I wish you well as you start your art program, and hope you can find ways to minimize the ways epilepsy and e-meds affect your studies.

Best,
Nakamova

 

[spiralarms1177]

Wow, thank you for your thoughts. I've only recently tried to reverse a mindset of retreating to doing. It hasn't occurred to me to enlist the support of the local first responders. I guess my new mindset set needs to catch up with current plans. People and places "out there" haven't been regarded as friendly in awhile. What you suggest is great advice. Since trying to do something, I'm relearning that each step gives back something for taking the effort to move forward. That's how I found CWE, people like you who take the time to help. That's no small thing. Everyone is so crazily busy. Which has been one of my biggest complaints while sitting on the sidelines. My days are busier now with the arts program but I've made a promise that I will never be too busy to take the time to help someone.

My memory loss from the seizures keeps me from getting too sophisticated with software on the computer or with apps. Which is OK. Your friend or relative who switched gears must really enjoy his work. I think our arts program goes to what is central to the arts and the potential it has to fill a larger need.

Thanks again.

 

[spiralarms1177]

Hi,
Thanks for your thoughts. It was a few days ago. I mentioned tablets. My doctor got back to me and said he didn't think they would work for me. I was the hospital for video monitoring where they take your meds away and you hope to have as many seizures as possible. The cords on the head are supposed to help locate the origin of the seizures. They didn't get much info about mine. I wondered how they dealt with the post-seizure aggression. They said they gave me some kind of tablet. It supposedly worked in the hospital at least.

It's unusual to talk to someone who has just been diagnosed only a week or two ago. When you meet someone, most people have had a lifetime of experience with it. Not that it makes any difference. Every event is new. Things must have changed noticeably for you. How are you doing? Is a lot unknown right now and are you able to know what changes to make?

Thanks again.

 

[QueenieKP]

I would 2nd making friends with your local police and paramedics. When I was in my teens my local paramdics would, how shall we put this delicately, dawdle, until they got a call back saying to cancel. Generally a well meaning member of the public would have called an ambulance and it was only after the seziure finished that the top to tail would find my medic alert ID and they'd cancel the alert after ringing Mr Q. Even once had an ambulance drop me off (they had attended as I had got stuck on a bus) it was en route and was quicker than waiting around for Mr Q to pick me up.

I also work with the police a lot in my job and in recent years have seen a vast improvement in their awareness of Epilepsy, ASD and mental health, it's not perfect, but if you have had a few difficulties with the police it might be that they have some serious training needs, perhaps you can log with them, if you choose your condition and give them the details of the national epilespy association.

Generally I am just teary post ictal but I can freak out, esecially if I have a male first aider attending me. So its written into my personal care plan, where possible to be attended by a female first aider. Would that be an idea for you to write something up to share with your personal assistant and any clients that you work with? I get Access to Work, which pays for taxi's so I also gave a presentation and info to the drivers in case I ever had a seizure in the taxi.

Best of luck finding the methods to overcome the barriers your facing.

Q

 

[Cint]

I went into video monitoring for a week but they didn't do well at locating the origin of the seizures. They want me to start a series of surgeries and monitoring. Where they drill a hole in each side of the head and put electrodes in. The first one would only tell them what side of the brain it's on. Other attempts would locate it further. I don't know if I'll do this. I want to start this program and I think their starting point is too much of a guessing game.

Hi spiralarms and welcome to CWE,

I've suffered with E for well over 30 years now and been thru many different meds. I had a left temporal lobectomy and went thru this video monitoring that you speak of. I also had to go thru the monitoring where they had to drill holes in my head to place electrodes on my brain for more effective monitoring, so the could tell precisely where the seizure were starting. I was in the hospital for 10 days for it. I went home and recovered from that and a month later I had the lobectomy.
But for me, the surgery wasn't successful, but that was just me. I was seizure free for 14 months. Plus I cam back with severe depression and the seizures were worse. They said I was post seizure aggressive, but I do not remember. They say I tried hitting my father once. Another time, a friend said I hit her. Then I attempted to attack a police after 911 was called. This all happened after the seizures and I don't remember any of this. So it does happen, depending on where in the brain they stem from and the type of seizures.
Check out this website:
http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-101/aggression

 

[spiralarms1177]

Hi,
Those are horrible results from your surgery. The list goes on!!! Sounds like it made things much worse. They want me to do the drill holes in the head with electrodes thing like you next. I found out in the first meeting with the surgeon that it will be a series. The initial one would only help them decide which "side" of the brain the origin is on. They're guessing too much for brain surgery.

Thanks for the info and your encouragement. Take care.

 

[spiralarms1177]

Thanks for your suggestions and encouragement. I don't have all the solutions yet but I think I know the way forward - proceed forward. I will be contacting local police and medics. I'm certain additional training is needed here, at least with me. Heck, if the government can track bulk data on the entire population, maybe they could keep me accessible easy enough in some local file.

I appreciate very much the help I've found within the community here at CWE. Hope to return it where I can and will use the ideas it's given me so far.

 

[tiggy'smom]

Pos-ictil in public

While in nursing school I worked as an EMT for a private ambulance co and we provided EMS for some towns during the day. Occasionally we would respond to "man-down" calls and after talking to people at the scene we would figure it out that the patient had a seizure. Many people icluding myself come out of seizures differently, me, my ears ring and I can barely hear the "nice" officer ask me who the President is. I barely know who the f$#% I am and he throws a pop-quiz. But for you a couple of suggestions. A medic-alert tag/bracelet. They now make them to look like dog tags. And on your cell phone add the initials ICE (in case of emergency). All EMS personel, police, firefighters are trained to look for this in the phones of persons that are found unresponsive. It's a way of not only notifying your emergency contact but also to learn of any allergies and other things pertinent to treat you other than your seizure history. Hope that helps or I've just babbled on, I do have a habit of that.

 

[spiralarms1177]

Good ideas

If your babbling I need to check my dictionary. I'd like to see what you mean by articulate. I have an alert necklace. But your suggestion regarding ICE is a great one. I have a question though. I understand ICE is an app you can put on your phone. I don't have a smart phone or one that uses data. Would it work for first responders if I just put the letters in my contact list, found by using those letters? It would give them my emergency contact's number who could then tell them what to do or not do given my post-seizure aggression problems.

I forgot about those pop quizzes. It's been awhile since I've had a seizure mild enough so that total chaos didn't follow. I just got back from the emergency room. Had a seizure this morning and busted some ribs but waited until a doctor's appointment at 3pm was over to go there. Incredibly painful but not much they can do. They could only give me written script for pain medicine and not call it in. Will have to pay a delivery service to drop off and later pick it up tomorrow.

Thanks so much for your suggestions. Good luck. Has Epilepsy interfered much with your career in nursing?