Epilepsy Foundation

I wanted to write a post about the affect epilepsy has on personality....

 

A week and a half a go I had a pretty large seizure in a public place and had to go to hospital. This is something that doesn't normally happen. I don't get grand mal seizures. Several exhausting day's led up to this.

 

I have realised in stages that my epilepsy has changed the way I feel and perceive myself and the world. I'm 29 and find myself isolating myself more and more, working on lone projects, yet I enjoy group activities and from time to time will meet with friends from other places and go to theatre, concerts. I'm not having relationships any more. I'm having lots of headaches, gelastic seizures, lots of stretching, exhaustion, tiredness, bouts of depression, troubling learning and retaining information.

 

I'm sure many other people here are in a similar position as the one I'm about to describe; the reality that going to work is going to be very difficult. I'm getting tired walking down the street. My epilepsy medication has significantly reduced my seizures alongside acupuncture.

 

I'm not on 3000mg of Keppra and will have to see how the new dose goes. I'm waiting for a 24hr video EEG. I have a diagnosis of frontal lobe epilepsy.

 

Would like to hear other peoples thoughts and experiences on this.

Views: 216

Reply to This

Replies to This Discussion

I'm 26, going through possible diagnosis, although we're pretty sure it's going to happen at this point. So I can't say "I have epilepsy" yet, but I do have seizures often and I've had a few in public. I was a working student (before I lost my job due to missed time because of having an episode at least once a week and missing a day every time I did), and had one at work and one at school.

I am so sorry you are going through all of this, and I am sorry to hear that you are having bouts of depression and wanting to isolate yourself. I may not fully understand, but I feel like I can understand where you're coming from.

Sometimes I just want to be a hermit and stay isolated, but when it comes down to it I know that will only make me unhappy. Still, I find myself avoiding certain social situations around people I don't know because they just don't get it. I don't know if I have myoclonic seizures or not, but I do twitch sometimes, especially if I'm under fluorescent lights for a while... so basically any public place. I had a girl in a shop say to her friend "Hey I think that girl has tourette's cause she can't stop moving." and some young ladies who giggled and were like "the harder you try not to laugh the harder it is..." which for whatever reason their giggling was perfectly timed with my twitching... all this from grown adults. It's like they think if you have something wrong with movement there must be something wrong with your intellegence or sanity. I'm kind of over that part by now, because other people's ignorance is totally not my problem.

Then there's that look in people's eyes after they know you have seizures. I mean, some people are kind and accepting but there's that occasional person who gets this look like you just told them you're an axe murderer.  I'm over that part too, I just laugh at it later when they're not around.

The thing I'm not over is the memory loss. I mean if I have an episode that day I might forget entire conversations I had with people, and you better believe I try to have them again! So now I know this other look... the "Yeah, you totally told me this yesterday" look. Some people let me just have the conversation again. Some people are kind enough to tell me. As far as remembering important things I've learned to write EVERYTHING down just in case.

I may not be the best person to give advice but what I'm trying to do is just make sure to keep in touch with the friends and family I do have, and make sure they understand what's going on as long as they're willing to learn. Some of mine act weird like they don't want to hear about it 'cause it's too negative and let's talk about something happy now.  It's hard if you don't work to not be isolated and it definitely takes effort to make sure you have lots of social contact.

As far as personality changes I actually find myself, once more reserved, becoming a little more outgoing to compensate for any discomfort others feel about it. Not that they should feel discomfort, but I want them to know that rather than draw their own conclusions about me... Then other times I find myself pulling away because it's all too frustrating... I try to do the first one more than the second.

Anyway I hope you feel better about it soon and that the new does goes better for you :)

Stephen,

Personality -- DEFINITELY epilepsy does have an impact and I often wish others would realize this (but then again it may be better it isn't so well known; just think of the added discrimination there would be).  My confusion is how much personality is changed by the neurological disorder and how much of it is affected by the drugs I take.

When I was in my teens mother and I asked numerous doctors if epilepsy had an impact upon my mood and anger but they all denied the possibility.  But even my sister (two years younger than I) noticed the change that preceded my seizures.  I remember my sister commenting more than once, "Mom, I just wish Mike would have another seizure!".  I was more obnoxious and irritable for a couple of days and then the seizures hit.  Sure they wore me out and I had to rest for several days.  But for several weeks on after the seizures I was better behaved and calm.  

I have always been more aggressive and short tempered.  School was the worst time with classmates who didn't care.  I went through plenty of counselling and other therapies.  The only way to keep out of trouble and graduate from school was to separate myself from others.  I was a lonely kid but I didn't mind.  

Medications always made me more irritable so when I was seizure-free for more than a year we talked to our doctor about discontinuing medication.  For a couple of weeks I was off pills and for several days life was so wonderful!  I enjoyed other people so much!  My mother said I was like a different person.  Then I woke up in critical condition in the hospital.  I had status epilepticus (non stop seizures).   Was the positive mood that preceded my seizures a reflection of my normal personality that I would enjoy without medication?  Or, was that positive mood an abnormal "high" caused by minor seizure activity?  I cannot afford to find out.

When I was doing drug trials for a surgery qualification I was up and down on different medications quite often.  During that time I had a revealing experience.  For years I was upset that others were so pushy and treated me like I was stupid.  Then I noticed this came on more when I was on higher Dilantin levels and this perception went away when I was on a lower dose of Dilantin.  My perception was screwed up by the medication!  Of course my negative perceptions along with my anger left me happier to be alone.

I have temporal lobe epilepsy.  Doctors in later years confirmed that amygdala is in the temporal lobe and has a major impact on emotion.  I don't want to just tell others, "epilepsy makes me this way and I can't help it", yet it hurts when others seem to expect more than I can offer.  

I wish I could help you,

Mike

 I have lots of depression because I feel I can't have everything I thought I would in life, also it takes so long to happen and sometimes. but that my life I take what I can't get and make the best of it. nothing more I can do.

Hi Stephen,

   I've had epilepsy for 42 yrs. and take my word depression is part of epilepsy not to mention the sz. meds a person takes. I have had times where I have pulled away from family and friends even though they have known for yrs. that I have absence and complex partial sz. but just like you there will be times when I want to be around others also.  I had brain surgery done and I found out that I had both temporal lobe and frontal lobe damage and according to my neurosurgeon it's the frontal lobe that controls a persons behavior and personality.  I found that after I had my surgery my outlook on life and having sz. in public whether at work or at the stores no longer bothers me and I'm a lot happier even though the surgery didn't stop all my sz.  I also found that keppra caused me to have a lot more sz. and I was exhausted and had wicked headaches while on the drug so I went off of that and started taking vimpat and I feel a lot better.  Try taking vitamin B12 1000 mcg. once a day this will also help reduce your sz. along with give you more energy. It's done wonders for me.  I wish you the best of luck and May God Bless You!

  Sue 

I too didn't respond well to keppra I have complex focal seizures or partial seizures with a lot of automatism's. I do thing like run my fingers threw my hair, or itch myself, rub my eyes, this is the beginning and my husband knows to head me to the car if I start them. In my first marriage I had a lot of depression with seizures he was offshore working jobs like in Alaska for 6 months at a time and hid mother and aunt would constantly call me a liar because I'd repeat the same conversations days later or get confused during their inquiry. Now I spent a lot of time alone until I found my 2nd husband john and he is truly compassionate and let's me know when I'm acting confused and always tells me it's better to rest and it will finish what or who I was talking to. He has been very protective of me and I don't feel so alone in this mess. I feel guilty got him always taking care of me when they do happen but I have much more brighter days now. I just started a new med change and for us this will be the 6th one since April 2013. So it's been a rocky road.

Hi Stephen

I was dx with temporal lobe epilepsy when I was 5 yrs. old.  It's been 43 years now.  I was on a variety of medication when I was little and had many sz back then so I don't have a lot of memories of my childhood.  Now I am on keppra and it works wonderfully for me.  I have had sz's in many different places, school, church, at work, while working, at home making a bed, the ones that are the most embarrassing were definitely in front of people.  When I would feel the sz coming on I would grab who ever was next to me with a death grip, people would try to remove my hand but to no avail, so I worried that I might hurt someone.  Most people have been understanding about it, but it doesn't stop the embarrassment.

I have had epilepsy sense I was born and I'm now 20 years old. I have epilepsy in the front left side of my brain due to a scare. Sense I got out of school, I have been fighting social security and trying to get help with getting income. I cannot drive. And some jobs in the small town that I live in don't want me due to the fact that I'm epileptic. They think my epilepsy will be to much of a health bill for them. Soon I will hear from social security to see if I get approved or denied. I have got some feedback and they told me that I just need to fill out a questioner about my epilepsy and have some other people explain their side of what my epilepsy is like. Witnesses to seeing me have seizures. But yeah, I just gotta hope I will get it or try to get vocational rehabilitation to help me. I have them working with me. Epilepsy sucks!!! Don't get to do what most of what the other people get to do.  

for the most part, the only personality trait of mine that I can confidently completely accredit to the seizure activity in my temporal lobe is how i'm a little off kilter, out of the box, etc. I actually like not being cookie cutter conformist. my neurologist told my bf that another trait that some epileptics have is a melancholicish personality, Here are a couple ebooks that i benefited from. 

Attachments:

I/m on 3500 Keppra XR (3500mg), Neurontiin 3000mh daily and am 52. I have been taking AEDs since I was in my late 20s . Since I have been divorced  for 17 yrs, I tried to pick up the pieces. I tried dating  up until 4 years ago and I decided to give up. It seems that every woman I had dated started out with my giving them disclosure about my condition. At first they were okay with it then they would suddenly vanish. I even dated one who was moving and asked me to go with her. then she told me that 'I was going to have to do something about the breakthrough seizures. That told me that at this age, I can survive just fine with what friends I do have and family. By most part I have become introverted and am okay with it. I live in the city and walk for exercise, and plug headphones into the pc, surf the web and am just fine with that as well. I enjoy watching TV, movies, and listening to music. I recently told my parents that I had been on a 2 week + stretch of not seeing a soul and the phone not ringing. They asked 'Don't you get lonely?', to which I replied not really.

Stephen,  Thank you for your wonderful description of life on medication and epilepsy and the personality issues so many of us have.  I found working two days a week now 6 hours at a time is most helpful.  I used to work full time.  As recently as one year ago.  I recently applied for disability and don't expect to get it but hopeful I will. 

I also isolate and have experienced depression for years even though I take antidepressants and found once I tried Depakote for seizures it helped my mood immensely.  I have a few friends and haven't had a date for awhile!!  I found out I have brain atrophy now due to the medication and epilepsy.  I had a video eeg and that really helped to find the seizures in the frontal lobe and found one of my meds caused smaller seizures.  The first thing I did was find an epileptologist who ordered all of these tests, including a neuropsychological and I found my ability to accept these issues has helped me to be less critical of myself.  I tried Keppra wow did that cause depression and feelings of anger.  I am in a better place now than I have been in years due to the medication change (Depakote now and Carbatrol) and living a life that is better for me not what was expected of me. 

You have to feel better somewhat first before moving forward.  I was in such a bad place I tried to commit suicide at one point.  Now, I wouldn't even consider it.  Good luck to you and thank you so much and if you ever want to talk let me know.  Jeanne   

Hi Lu,

 

Thanks for posting! I can relate to the problem of having seizures in public. Epilepsy is mostly understood to be a condition that causes people to drop to the floor, so when people with the condition have other types of seizures it creates confusion. When I had a seizure recently in public, the paramedic thought I'd had a panic attack. Others just see it as mental illness (thought I agree that epilepsy can lead to this an in some cases it might start here). It's not possible for us to educate every person we might come across!

 

Like yourself, I like to socialise but tend to stick to known people.
 
Lu Dnae said:

I'm 26, going through possible diagnosis, although we're pretty sure it's going to happen at this point. So I can't say "I have epilepsy" yet, but I do have seizures often and I've had a few in public. I was a working student (before I lost my job due to missed time because of having an episode at least once a week and missing a day every time I did), and had one at work and one at school.

I am so sorry you are going through all of this, and I am sorry to hear that you are having bouts of depression and wanting to isolate yourself. I may not fully understand, but I feel like I can understand where you're coming from.

Sometimes I just want to be a hermit and stay isolated, but when it comes down to it I know that will only make me unhappy. Still, I find myself avoiding certain social situations around people I don't know because they just don't get it. I don't know if I have myoclonic seizures or not, but I do twitch sometimes, especially if I'm under fluorescent lights for a while... so basically any public place. I had a girl in a shop say to her friend "Hey I think that girl has tourette's cause she can't stop moving." and some young ladies who giggled and were like "the harder you try not to laugh the harder it is..." which for whatever reason their giggling was perfectly timed with my twitching... all this from grown adults. It's like they think if you have something wrong with movement there must be something wrong with your intellegence or sanity. I'm kind of over that part by now, because other people's ignorance is totally not my problem.

Then there's that look in people's eyes after they know you have seizures. I mean, some people are kind and accepting but there's that occasional person who gets this look like you just told them you're an axe murderer.  I'm over that part too, I just laugh at it later when they're not around.

The thing I'm not over is the memory loss. I mean if I have an episode that day I might forget entire conversations I had with people, and you better believe I try to have them again! So now I know this other look... the "Yeah, you totally told me this yesterday" look. Some people let me just have the conversation again. Some people are kind enough to tell me. As far as remembering important things I've learned to write EVERYTHING down just in case.

I may not be the best person to give advice but what I'm trying to do is just make sure to keep in touch with the friends and family I do have, and make sure they understand what's going on as long as they're willing to learn. Some of mine act weird like they don't want to hear about it 'cause it's too negative and let's talk about something happy now.  It's hard if you don't work to not be isolated and it definitely takes effort to make sure you have lots of social contact.

As far as personality changes I actually find myself, once more reserved, becoming a little more outgoing to compensate for any discomfort others feel about it. Not that they should feel discomfort, but I want them to know that rather than draw their own conclusions about me... Then other times I find myself pulling away because it's all too frustrating... I try to do the first one more than the second.

Anyway I hope you feel better about it soon and that the new does goes better for you :)

This is a real problem. I've described this to people before "it takes me much longer to do stuff", this includes study. A lot of it is to do with breaks in attention caused by frequent seizures and fatigue caused by getting tired quickly. It's not possible to do a full time job and do regular stuff outside of that. In turn this causes me frustration and sometimes depression! 
 
sezuires and a daughter said:

 I have lots of depression because I feel I can't have everything I thought I would in life, also it takes so long to happen and sometimes. but that my life I take what I can't get and make the best of it. nothing more I can do.

Reply to Discussion

RSS

Terms of Service Update 6/4/2012

We have updated our Terms of Service for eCommunities Groups.

Events

October 2014
SMTWTFS
1234
567891011
12131415161718
19202122232425
262728293031
       

© 2014   Created by EF Admin.

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service