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Peaches78
personality change
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I was just wondering if anyone who started having seizures later felt that they weren't the same person anymore. I started having seizures almost two years ago, right after I turned 27. Inside I feel like a different person. As if I have had a personality change. I feel so irritated most of the time. I try to keep acting like the same person on the outside, but inside I don't know who I am. My short term memory is shot and I feel like I can't do the things I used to do. My seizures are well controlled with medicine and I've been fortunate to never have had "bad" seizures. I just mainly have simple partial or complex partial. Never lost consciousness or had convulsions. All I want to do is be alone. I feel like I've got this great ball of anger inside of me and I stay frustrated with everything in my life. My neuro said I may be depressed so he started me on Lexapro. Its only been three weeks so there hasn't been much of a change. I'm just so sick of everything. I want my old self back. Especially my memory. I used to have an almost photographic memory. Now I can't remember hardly anything. All my friends who know I had a good memory get mad when I say I can't remember something. No one seems to understand. My parents pretend like my seizures don't exist. Like there is nothing wrong with me. Has anyone else experienced this? Is there a way to improve my memory and my mood?
Recent Comments on this Discussion
Peaches, I have been on about a dozen different meds at least over the years, and every time I am on a new med I get a different personality along with it. Perhaps you should try a new med if you don't like who you have become. You would be surprised at how quickly your personality changes on a new med. Just make sure you can control those seizures. It takes a lot of courage to try a new med, because you always take the risk of seizures and side effects. Make sure it is worth it. If your current med isn't working effectively anyway, than it would probably be worth it in your case to try something else. If you aren't used to changing meds, please realize that many of these medications can CAUSE increased seizure activity. That's something the doctors don't tell you for some reason. You just have to experience it the hard way. I had this problem with Lamictol and Klonopin.
SusieQ
Thanks for the advice. I got off of Keppra and had my Lamictal increased. I also started taking Lexapro. I have been feeling a lot better these past few months, better than I felt before the seizures actually! Hopefully this will continue.
I had a grand mal when I was 8 years old then a cmoplex petit mal when I was 23 years old. That was a quite a long lapse of time. You wouldn't think anymore would occur. They didn't know why when I was 8, but thenat 23 I was diagnosed with mesial temporal sclerosis. Just scar tissue on my left temporal lobe. I had sugery to remove it when I was 25, right after my daughter turned 18 months old. I got pregnant whil trying to increase dosage of my med. The surgery worked for two years, but they were awful. I was a different person. I thought everyone was against me. I barely remember my daughter growing up during that time. I can't tell you what month she talked,walked,ect. I went to another sergeon and found out that everything was not removed. I refused to have surgery again. I did not want to be like that agian. I am on 4 different meds now. Also a "happy pill", I call them that. I don't drive and I'm 35. Keppra causes me to get mad easy, but I try to control it. Thank God everyday that my memory has returned like it was after those few years. I'm new here. I feel for everyone, and be thinking about you.
HI PEACHES, WHILE I REALIZE THIS WAS WRITTEN A WHILE AGO, I FIND THAT IT ALWAYS HELPS TO KNOW THAT YOU ARE NOT ALONE. IN 1992 I HAD A TRAUMATIC BRAIN INJURY WHEN THE DOCTORS SCREWED UP ONE OF THE BRAIN SURGERIES I HAD. I HAD TO RELEARN HOW TO DO MANY THINGS, AND STILL NOW, IF I DO NOT DO SOMETHING REPETITIVELY, I DO NOT KNOW HOW TO DO IT. I HAVE SHORT AND LONG TERM MEMORY LOSS, LOST VISION IN ONE EYE, AND HAVE LOW VISION IN THE OTHER. I TRULY BELIEVE THAT THE ONLY REASON I CAN USE THIS SITE IS BECAUSE GOD IS GUIDING ME, AS NORMALLY I CANN'T SEE TO READ ANYTHING, EXCEPT A FONT SIZE 18, WITH SPECIAL GLASSES, AND EVEN THAT IS A CHORE TRYING TO SEE AND UNDERSTAND.
I DIDN'T KNOW WHO I WAS FOR MANY MANY YEARS, AND UP UNTIL THE PRESENT, HAD A GREAT DEAL OF DIFFICULTY KNOWING WHO I WAS. I HAD NOT HAD NEW GLASSES IN ABOUT 5 OR 6 YEARS. I KEPT WONDERING WHY PEOPLE WERE TELLING ME WHY I WAS OLD, AND I ALWAYS WONDERED WHY I DIDN'T LOOK 45. I WAS 45 WHEN I HAD THE BRAIN INJURY. LAST SUMMER I GOT NEW GLASSES, AND WAS SHOCKED AT WHAT I SAW. AND I KNEW WHY PEOPLE WERE TELLING ME I WAS 'OLD'AND WHY I DIDN'T LOOK 45.
IT WAS A VERY DIFFICULT TIME FOR ME, FOR EVEN THOUGH THE YEARS WERE PASSING, AND I HAD BIRTHDAYS, NONE OF THIS WAS CONNECTING WITH MY BRAIN. SO, I STARTED TO WONDER AND THINK ALOT ABOUT HOW I WOULD ACT AND HOW I WOULD DRESS, AND JUST EXACTLY WHAT KIND OF PERSON I SHOULD BE, SINCE BY THEN I WAS ALMOST 59. SAYING IT WAS A DIFFICULT TIME REALLY IS PUTTING IT MILDLY. I WAS TOTALLY LOST, AND READJUSTING TO THE AGE I ACTUALLY WAS TO THE AGE I THOUGHT I WAS, WELL, IT WAS INCREDIBLY HARD.
I ALSO HAD NO MEMORY OF EVER SEEING ANY KIND OF NEUROLOGIST SINCE THE 3 SURGERIES, AND I COULD NOT UNDERSTAND THAT. SOMETIME AFTER 2000, I CAN'T REMEMBER WHEN, I WAS A S. SPECIALIST. WHILE I HAD NO MEMORY OF SEEING HIM, HE HAD DEFINITELY SEEN ME BEFORE, BUT I NEVER THOUGHT TO ASK WHEN I SAW HIM, OR WHAT KIND OF S. I HAD BEEN HAVING. IN FACT, I HAVE BEEN HAVING S. SINCE 1992, AND DID NOT REALIZE IT. I NOW THINK THAT PART, MAYBE A MUCH LARGER PART THAN I KNEW, WAS S. ACTIVITY PROHIBITING ME FROM REMEMBERING, BUT I WILL NEVER KNOW.
NOW, I HAVE HAD ANOTHER BIRTHDAY, THE NUMBER THAT COMES AFTER 59, AND I AM STILL SEARCHING FOR MYSELF. I HAVE BECOME VERY DISABLED PHYSICALLY, WHICH DOESN'T HELP MY SITUATION. I HAVE BEEN TOLD THAT I HAVE NEVER BEEN THE SAME. AT SOME POINT I REMEMBER THAT I USED TO SING ALL THE TIME AND DANCE, NO MATTER WHAT I WAS DOING. IT WAS WONDERFUL TO REMEMBER THAT, EVEN THOUGH I CAN NO LONGER DO THAT.
I THINK, TO ANSWER YOUR QUESTION ABOUT YOUR MEMORY, UNFORTUNATELY, SINCE S., YOU DO LOOSE MEMORY. BUT I LISTEN TO BOOKS ALL THE TIME, I WRITE POETRY, I USED TO DO CROSSWORD PUZZLES, WORD SEARCH, READ ENCYCLOPEDIAS, BEFORE I HAD A COMPUTER, ANYTHING I COULD DO TO HELP ME REMEMBER. I AM STILL PRACTICING MATH, SIMPLE MATH, AS THAT AND SPELLING ARE STILL VERY DIFFICULT FOR ME, BUT WRITING ON WORD, AND KEEPING MERRIAM WEBSTER ONLINE, KEEPING DICTIONARIES AND THESAROUS.......SORRY CAN'T REMEMBER HOW TO SPELL THAT ONE......ARE ESSENTIAL. LOOK WORDS UP, WRITE AND LET GOD COME THRU YOU, AND FIND OUT THE WONDERS OF DOING SOMETHING YOU NEVER DREAMED YOU COULD DO, DO CRAFTS,ETC. ANYTHING THAT KEEPS YOUR MIND BUSY, AND DOESN'T CAUSE YOU TO HAVE S., IS GOING TO BENEFIT YOU.
AND ABOVE ALL, ASK TO BE HEALED, MEDITATION IS RECOMMENDED HERE, FOR PEOPLE WITH E., SELF-HELP BOOKS, BIOFEEDBACK.....THE RANGE OF WHAT IS AVAILABLE TO YOU DEPENDS ON WHAT YOU LIKE TO DO. AND IN EVERYTHING YOU DO, I HAVE ALWAYS FOUND, ALL MY LIFE, THAT HEALING COMES QUICKEST TO THOSE WHO HAVE GOD AS THEIR CENTER, THEIR FOCUS. LET GOD BRING IT THRU YOU, AND YOU WILL BE AMAZED WITH YOURSELF!!!! HOPE THAT HELPS. I REALIZE YOU DON'T HAVE A TBI, OR DO YOU, BUT S. AFFECT YOUR MEMORY, SO WITH EVERYTHING THAT ANYONE TELLS YOU, TAKE WHAT APPEALS TO YOU, AND THROW THE REST AWAY!!! GOD BLESS, AND I HOPE BY NOW YOU HAVE FOUND SOME THINGS THAT ARE UNIQUE FOR YOU AND HELP YOU! JAN
AS YOU MIGHT NOTICE, I JUST NOTICED I HAD REPLIED SEVERAL TIMES IN THIS 'CONVERSATION' BUT DID NOT EVEN KNOW I HAD UNTIL I WROTE THIS, AND COULDN'T FIND IT ANYPLACE. SO NOW YOU KNOW WHAT A TBI AND S. DO TO YOU. SORRY IF I REPEATED MYSELF. I DON'T TRUST MY VISOIN TO GO BACK AND SEE EVERYTHING I WROTE. I ALWAYS KNOW WHICH IS MINE, BECAUSE I HAVE NOTICED THAT I AM THE ONLY ONE WHO USES ALL CAPS. IN ORDER TO SEE BETTER. NOT THAT IT REALLY HELPS, AS I HAVE SAID......I BELIEVE GOD GUIDES ME WHEN I AM DOING THIS. AND ALL THOSE YEARS OF PIANO AND ACCORIDIAN LESSONS HAVE PAID OFF, AS LONG AS MY BRAIN IS WORKING AND I AM NOT JUMBLING THE WORDS SO THEY MAKE NO SENSE AT ALL!! GOD BLESS, MAYBE SOME DAY I WILL COPY ALL THE THINGS ON THIS DISCUSSION, PUT IN ON WORD AND FIGHT MY WAY THRU READING IT!!! OH BOTHER!!!!! I CERTAINLY IS AN INTERESTING AND LONG LIVED DISCUSSION!! DON'T KNOW IF IT IS IN COMMUNITY FORUM OR YOUR OWN BLOG. I JUST KNOW I HAD SAVED IN ONE DAY FOR SOME REASON!!!!! JAN
Lol. Don't worry I didn't remember your first reply anyway. :) I am constantly repeating myself to people. I feel like I'm not as bad as I was though. My memory comes and goes. I just take it one day at a time.
IT'S AMAZING, ISN'T IT, THAT SOMETHING CALLED E., CAN TURN VERY INTELLIGENT PEOPLE INTO COMPLETE LALA'S IN JUST THE BLINK OF THE EYE, IN SOME CASES!!!!!!!! AND THE BEAT GOES ON...............JAN
A few thoughts to those that are attempting to get into college. It can be done. I'm 30 something and have a little less than six months to go until I finish my MBA. :) Yes, anything that you want can be accomplished it just takes a little bit of time.
Since my classes are accelerated and in some cases double acceleration it has been to my benefit to take them online and not in the class room. What it comes down to is, there are certain persons who are aware of what needs to be known when it takes place. :) Keeping others in the loop is very important.
Something I discovered within the first term, the Masters program is nothing like the undergraduate program as it requires more attention to detail and there is a higher level of expectance out of a person. Each classroom is different for each university however I would guess that the program is fairly close to expectation.
Best of luck to you in your studies!
Sue
Personality and life change for has been HUGE just as I'm trying to gain control of my seizures. My first seizure, I lived out west in the sunny desert and knew one of the main reasons was not eating right. Then, I spent too much time at work and never took breaks to eat. While taking meds and trying to eat right, for family reasons, I moved to NE PA. From there, my epilepsy exploded. The cold, wet, climate here has decreased my appetite (and you know what happens if we don't eat right) and taken my seizures from being able to count on one hand, to being able to set your watch by. Biggest mistake I ever made in my life, and the life of my epilepsy. I'm cold even as I type this near the end of 'summer,' and when I lived out there, it was shorts and t-shirts for everything including work. Now, I don't have the clothes or the means to replace the clothes I got rid of when I left here in the first place. Damn I miss the desert!
I'm familiar with the unhealthy eating habits, been there done that. I learned my lesson and how I've forced myself to eat something when I get up every day with my meds. If I don't eat I get nailed with a really bad headache that lasts the entire day and I just cannot get rid of it. I used to think that breakfast was a big joke and I didn't need it but now I know better because I can actually function throughout the day. When my husband comes home, I'm ready to sit and eat dinner with him. Since I actually have breakfast now, I don't eat during the day.
I am a native of PA (southern Chester County) and now living in the midwest (IA) where our weather is very different. For example, in November it is not odd for us to see low freezing temperatures or possibly snow fall. :-) I've been in this area since '95 and it took me awhile to get accustomed to it. I still have my moments of when I feel like a hug to the heater will not keep me warm enough (it gets quite frigid in these parts) but I do okay (or try to) most of the time. LOL!
SERUZIES, YOU LEFT OUR GORGEOUS DESERT FOR BEAUTIFUL PENN.???????? YES, I HAVE BEEN IN PENNSYLVANIA, AND IT IS BEAUTIFUL, BUT ONCE THAT DESERT GETS IN YOUR BLOOD, YOU JUST NEVER CAN GET IT OUT!!! I KNOW, I HAVE LIVED HERE SINCE 1975. I SPENT A YEAR IN ILLINOIS, WENT IN 2003, AND THOUGTH MY LIFE HAD ENDED! I SAW NO POINT IN WAITING FOR IT TO RAIN SO THEY COULD MOW THE GRASS, THEN WAITING FOR IT TO RAIN SO THEY COULD MOVE THE GRASS, WAITNG FOR IT TO RAIN SO THEY COULD MOW THE GRASS.......ARE THEY ALL CRAZY???????? GROWING ALL THOSE FLOWERS, ON AND ON.........I REALLY THOUGHT THEY WERE CRAZY, AND I GREW UP THERE!!!
I SAID JUST GIVE ME SOME ROCKS AND CACTUS, AND MY MOUNTAINS....WE DO BECOME SO VERY POSSESSIVE ABOUT THOSE MOUNTAINS, DON'T WE????? IF YOU LIVED WHERE I DO ANYWAY!!!
AS FOR YOUR S., AND HEALTH.........I CAN'T TOLERATE THE HUMIDITY OR COLD. I NOTICED THAT DURING THE COLD MONTHS AND THE MONSOONS, I HAD A LOT MORE S. ACTIVITY. THE COLD ESPECIALLY. BUT I DID NOTICE, WHEN THE MONSOONS STARTED, AND I WENT OUT FOR ANY LENGTH OF TIME, I HAD MORE S. NOW THAT THEY HAVE SUBSIDED, FOR THE MOST PART, I AM DOING MUCH BETTER. YOU NEED TO GET YOURSELF BACK TO THE DESERT, SOUNDS LIKE!! I HOPE THAT IS A POSSIBILITY FOR YOU, AS YOU SEEM TO BE MUCH BETTER THEN.
This is a comment for peaches I started having grand mal or tonic clonic seizures when I was 14. I had lots of trouble with all of what you are saying I was on depakote for a while and I turned into a totally different person. I have had the most success with zonogran it is actually for partial seizures but it worked for me. Maybe talk to your doctor about some of your symptoms. At one point as I was getting my college degree I went to the extreme of taking myself off medications to make myself feel better. I had two wrecks as a result. That was the only time my doctor took notice and listened to me but hopefully you have a better doctor than I had at the time. I still have trouble with jobs sometimes. I teach special education so remembering all of the things I have to for my job is hard. Eventually you learn coping skills and different ways to remember things. It does get better do not lose all hope and faith in happiness for your future. Hope some of this helps.
Thanks for the reply. I find that my memory comes and goes. Right now it feels good. Hopefully it will stay that way since I will be starting grad school in a month. I can't take zonogran because of my history of kidney stones. I find Lamictal works good for me. Also the Lexapro is a God send. I feel like a whole new person. I don't think I've been this happy in years. My doctor is great. I just moved to another state, but am going to continue to use him as my neuro. I think things are going to work out for me after all. As long as I take my meds I'm ok.
When I took Depakote it sort of flattened my feelings. I sort of called it a quiet depression. I was on it for about 30 years. When I came off it ... they transferred me to Lamictal which for many, including me, is sort of feel good med. Boy, did it feel good. I began to laugh more, cry a tear jerker movies... and just feel more of life. What you said about college was interesting. I am really old and was originally on some pretty hard meds when I was young. That stuff used to have me take a 40 minute hot shower every morning just to wake up. You have no idea how bad the really early meds were. Then when I hit college, my neuro felt that the new med dilantin was a now safe to take so he prescribed that. What a difference. Suddenly, I became a genius. The entire world changed. I changesd. Wow... the fog lifted. Suddenly I was this bright young guyagain. The only one of the old meds I kept was a little bit of Phenolbarditol ,,,but no longer in the huge doses I had been taking. It was like night and day... and then I even dropped that. I became vibrant, intelligent... life of the party. Hey... the world opened. And one job after another led to some really big advancements and great money and recognition. I would be sweeping floors had I stayed on those old drugs. The right meds make a differeence... not just in keeping down theseizures. but in letting you feel your own way and enjoy life. The wrong meds can be worse than the seizures. WALT
Yeah, I victim to this same feeling. All my life I knew I was different but could never put my finger on what it was that set me apart. Saying "I forgot" is something extremely depressing for me to say. I've got that almost photographic memory as well. I'm wondering if that memory is something that epileptic people develop as a trait, you know, to avoid those "strange feelings". As if we could remember things so well we can avoid it later...or at least accommodate for it.
I'm so glad to hear that someone else out there suffers that same depression that I can never explain.
Kandy Cech
My husband has had seizures since 9 months old. He has been on many different medications within the past 12 years I have been with him. There is times you couldn't talk to him. He would get very angry at anything you ask him. I have 2 kids that have to see him go through the changes over the past 10 years.
I have had epilepsy since the age of 3, and am now almost 33!
What I will say is despite my epilepsy being relatively well controlled, having a grand mal seizure every 2 - 3 months, and absence seizures more often, the effect of the medication ( Carbamazepine Retard - 600mg am ; 800mg pm) has also obliterated my memory, thoughts, feelings and emotions.
My parents brushed it under the carpet, and denied I had it. So they werent much help. The depression / anxiety and low self esteem I still have are all down to the bullying from school and the lack of friends, and family supporting me through the hard times.
Combined with the way the grand mal fits are now having lasting post-ictal effects. With me feeling far less connected, more confused, hyper sensitive generally and ready to explode inside unless anyone has felt this same way - it seems like an alien concept.
The combined exhaustion, worsened memory and thinking processes as well as being more lucid when speaking, despite feeling less connected with people seems weird - and makes me feel like a freak!
It's such a new thing for me, to feel so bad for up to a week or longer after a Grand Mal fit. This never used to happen!!!
I also have little or no short term memory - with me speaking to a friend of my sister earlier today, and not having a clue who she was till she mentioned my sister, and I remembered she was her friend.
All too often I meet and speak to people out of context and don't even know who they are - and it's all too embarrassing to ask their name! Being so forgettful is very lonely , and isolating.
It makes me feel like I'm living my life one day at a time, as within a few days / a week I've practically forgotten everything and everyone that I met, unless I check my diary again.
If I didn't write so much down, keep lists and find memory aids to back up my terrible memory I'd be far worse than I am today!
Setting reminders on my mobile phone also makes a big difference.
It's just about realising the limitations we have, and not doing too much that might trigger a seizure. But recognising the triggers isn't easy either. We just need to remember - the old expression:
"If Your Happy - Dont Forget To Tell Your Face!" ( corny I know!)
Do you think the depression and anxiety were seizures.. or a result of seizures. Because I am having what I thought were panic attacks, but the neurologist says they are actually seizures.
Melissa my earliest seizures as a small child were fear seizures. They were active when I was five and six. But never diagnosed. They really ruptured my life. At 13 I was diagnosed with absense seizures and then later with grand mal and others. But... it took a long time before anyone related those fear seizures with epilepsy. Thank goodness.. I had one when I was in my twenties.. and I felt the post ictal symptoms and knew right away what it was. You have to get to the point where you do not let it control or affect your feelings. It took me a long time to do that. But I did. Seizures that occur in the Temporal Lobe area can affect all types of emotions. Fear and anxiety are just one set. They can affect anger, depression, hunger, sex drive, even religious feelings. Some of this sounds pretty odd, but it happens. This world of seizures is indeed fascinating. WALT
Oh and Peaches... Im in the same boat with you. I was just diagnosed with simple partial seizures. I am also trying to get into grad school. I was diagnosed like two months ago. Im depressed, I'm scared, I'm wondering why me? Life just isn't fair sometimes. I am on Lamictal and its helping somewhat. But this is such a big life style change. Its been extremely hard for me to handle. The anxiety is the worst part. A lot of times, I just want to be alone too. After seizures, I really zone out.... I get in a really depressed state for hours, where I don't want to talk, I don't want to be around anyone, I just want to lay in bed and cry... because life doesn't seem worth it. This goes away once the seizure is gone. I guess I need to stop feeling sorry for myself and buck up. But i just feel like this changes everything. I am now going to be on meds for the rest of my life, I have problems with my memory, when I have seizures I can't work up to my full potential in the work environment or at school. Its just a lot to deal with.
I've had seizures possibly since birth and even though I know it's very painful to feel like such an outsider, it's nice to know that I'm not alone. It's so hard to explain to someone how you can be aware of what's going on and be coherent, but not be sure of who you are or how you're supposed to be. I've never trusted my own judgement. All my life I've been very dependent on people, especially financially. It's hard for me to hold a job because of the disconnectedness and spaciness I have everyday.
I used to have a very good memory too. I used to remember everyone's phone numbers before cell phones and I could recall conversations almost verbatim. Now I can't even remember how I feel about things. I just feel utterly confused all the time. Feeling this way and raising two small children keeps me overwhelmed most of the time. My husband is so frustrated with me. He says that he knows that I can't help it, but that I need to get some help and deal with it. I should be able to take care of the basics in life. I causes a lot of arguments and a lot of times during our arguments I forget what we were talking about :)
I am very touchy and emotional and my anger does seem to come out of nowhere. Some days I feel really confident and cocky and some days I feel like I don't deserve to live. I isolate myself a lot because it's exhausting for me to spend time with people. I have to watch what I say and do and I don't feel genuine.
We have a constant struggle, but I try to remember that I have a lot to offer and I am learning to not hide so much and let people see me. Whoever I happen to be that day :)
I realize this is a March comment, and it is already June, but I will go ahead and add to the fun just in case you need more reading material!
I will hit the big 50 this August, and have had this disorder since age 11. I always thought I was different even as a small child. I do not doubt that there is pronounced personality changes, or just general moodiness in people with seizure disorders, as there are with anyone with a brain injury, or medical condition associated with the brain. Granted I am not a MD. My own personal experience tells me that I have always had mood swings to small or large degrees. I come from a family of educated people, and I could never manage college when I was young. I am a legal assistant now, and took one course for my job, aced it and then proceeded to have a big fat seizure.
I have a kind heart and produced some grown kids that I am extremely proud of, having said that, I always found it hard to suppress my weird side (moodiness).
Lexapro is a good drug, I have been on it for several years, and my anxiety is almost non existent, which is monumental since I have always been queen anxiety. Give it some time, it will work! As far as improving your moods. Try to stay positive, surround yourself with positive people, read motivation stuff. Stay off the pity pot! Accept your limitations, and yes the memory thing aint goin' away. Compensating for your memory problems is a way of life. Finally, acceptance goes a long way!
Gwen
Thanks for the advice. Its nice to know people keep reading these posts even if it has been a few months. I'm doing much better than I was when I made this post. The Lexapro works great. I've always had a lot of anxiety problems and found it hard to talk to people when I first met them. Now that I'm on Lexapro my shyness is not so bad anymore. Its a lot easier to talk with people. Which is a good thing since I will be starting grad school in the fall. I've only had this problem for two years and I was already out of college by that time. So I don't know how it will affect me academically. I'm not giving up though. No matter what I'm going to finish grad school even if it will be harder for me because of my seizures. Does anyone else know how to work school around having seizures so you still do well in school?
I've enjoyed reading these posts. It feels so good to know that many other people have the same struggles and frustrations as me. You asked about school. My advice is get plenty of rest. Establish a good rhythm to your day and really good nutrition and limit or avoid caffeine. I am a single mom with no real family support. I work full time as a teacher and I am working on another credential so I go to classes twice a week for 3 hours each time. I shouldn't be surprised that my seizures (simples) are getting worse. I am so busy it is ridiculous. I try to get to bed every night by 9:00. If I don't, my day is pretty rough. When I have assignments that are due, I get up early and work on them. My brain is too slow at night and I work harder at trying to stay awake than at learning or finishing a project.
I hope this helps. Congratulations on grad school!
-Annalise
Thanks for the advice. I find it hard to study at night to. I fall asleep too easily and don't even remember what I read. I guess I'll have to try getting up early to study when school starts. Does caffeine affect seizures? I am sensitive to caffeine so I stopped drinking it a few years ago. But since I started having seizures two years ago I find myself wanting it, even if it does make me feel bad. I don't know what is going on. I use to do so well with my caffeine free diet. I haven't had any today so now my head is pounding. I'm determined to go off caffeine again, but I feel so tired during the day if I don't have it. I think this has a lot to do with the seizures. I just don't get good sleep anymore. Is there any way to get good sleep?
Almost every medication that used in preventing seizures also has the affect on personality. Why not, more than half are used in controlling bipolar disorders. Some people are extremely affected by certain meds... the problem is that each drug will affect each individual slightly different. Topomax for example turned my exwife into a paranoid aggressive person. When the dust settled, we were divorced. We both have seizures, mine are a bit more extensine. But just having seizures can affect your own opinion of yourselr, and as a result your moods. Some studies have also shown that about 40 percent of all people with seizures suffer some form of chronic depression. Also, the seizrues we see are not necessarily all of the seizures we have. I have seizure activity on a constant basis even though you cannot see it. And that three minute grand mal may have been lingering in your brain for hours before it exploded. How do you think eppie dogs spot it coming on? While this activity is there it can in some people affect their personality... and it certainly can upset memory. As sleep disorder tests also show, minor epileptic activity might also be disturbing your sleep, which it does for me on occasion. I have sleep apnea, as many eppies do, but I also have eppie activity that also affects my level of sleep. Loss of sleep changes per4sonality. So what do you do? What I do is live as healthy a life as I can. Eat well, sleep well. exercise. But also I am aware that I am in a war with epilepsy and the idiot meds I have to take. I will NOT allow these meds to make me unhappy. I just do not allow it. When things go bad, I just decide, okay where do we go now. And I constantly go out of my way to MAKE myself happy... and the others around me happy. I enjoy love and being loved. I pursue happiness... I do not sit and wait for it. And I do not get angry when boatloads are not delivered to my dooe.. I just pursue some more. As far as my memory goes. I pursue that.. I push my brain. I push my thoughts. I push my curiosity. I will not let these disorders steal one second more from me than it possibly can. I am now 73 with a lifetime of seizures and meds. But I look and act years younger. And I have had unusually successful career in advertising. If you watch that new TV show "Madman" you will see what my early career was like. desptie the seizures. They would just dust me off and get me writing again. I have ran marathons, climbed mountains, and surfed, despite the active seizures. I did these with controls. That old song... "Be Happy".. holds a message. As I said. I am at war with this disorder. Not stopping it... but keeping it from ruining my quality of life. I am not going to say I know how you feel, no one knows how you feel but you. And I am not going to tell you how to feel. But I will tell you how I feel... I feel good about myself. I feel happy. I feel hopeful about the future. I feel that way because that is the best wzy to feel. You can try to emulate me if you wish. I works for me, despite hundreds of thousands of small seizures a year.. several dozen medium size ones... and anywhere from three to fivw really spectacular grand mals a year. Hey...I smile.. I go on..and I go out and enjoy life. By the way, this attitude helped me get to and stay in the top five percent income wise most of my life WALT
Deb ... Topomax can and often does make your personlaity very different. My ex is NOT the only person I have seen this happen to. Of the people I personally know who have taken Topomax, over half have stopped it all or in part because of severe personality changes. This is about about seven out of twelve people. These are not overwhelming figures, but the changes in these people were very very noticable. Your doctor needs to talk to some other experoemced neuros and not listen solely to drug reps. Even the pharmaceutical company trials will tell you that aggressiveness amd anxiety can be a problem. I had one friend, a very delightful educated woman, who actually was kicked off her favorite eppie chat room because of her aggressiveness which bordered on abusive... which started right after she started taking topo . The doc told you it is the bump on the head.. well stop the topo.. see if the change stops. if it is doesn;t you can always start it up again. Remember it is your life... and you are paying the doctor. insist that he treat you. And read the technical stuff and studies abont the meds you take. If the doc knows that you are aware, he will treat you differently. It is all there to be Googled up. WALT
Its been really helpful reading this post, and hearing everyones experiences. I did go to the doctors yesterday and he did say he could give me some 'happy pills' is this what the Leaxpro would be?
Its probably best if I speak to the neuro when I see her at the beginning of August. If I could feel less of the anxiety and more of the positiveness from this page I would definitely be in a better place. As for sleeping its a continuous struggle, I feel knackered but when I go to sleep I struggle.
Oh and GOODLUCK Deb!!!!!
Lexapro is an antidepressant and an anti-anxiety med. So yes it would be a "happy pill." Hopefully it will have good effects on you as it has me. Good luck!
Thanks Peaches, its good to hear others experiences before deciding whats best to do. Am glad its working so well for you.
We don't really talk about it. My parents are from the old school where you don't mention you have seizures or people will treat you different. My mother actually told me not to mention it to anyone at work or they would fire me if they found out. I told her I wish they would so I could sue the hell out of them. I sure could use the money. :) I try talking to them about it sometimes, but my mom always starts acting funny so I just quit. It doesn't really bother me anymore. I just deal with it on my own.
I know the feeling about caffeine. I gave it up when I had the flu this past winter. I figured I went through the withdrawal and headache when I was sick and unable to eat much. I was so proud of myself and was trying to grow to appreciate tea. I found I just overdosed on sugar instead. I finally caved one day and had a cup. It's all over now. I only have one cup (2 if I'm feeling naughty!) in the morning. I have always been kind of sleepy during the day so I feel like I want the pick me up in the morning. As far as a good night's sleep... I've heard that it is not a good idea to eat protein after about 6pm. I don't know if this is true. Supposedly your liver becomes active and then it triggers your body to stay awake, or something like that. I just got back from a trip and think my matress might be one of the reasons that I don't sleep well. I am noticing that I wake up with a sore back throughout the night. You might want to think about your matress.
Good luck with the studying. I react like Pavlov's dog when I read or study. I start to relax and then I am out like a light. It is frustrating. I even fight to stay awake if I read while riding the bike at the gym! It's a struggle.
-Annalise
I am now 56 years old. I contacted E about 4 years ago. I understand exactly what you are saying about short term memory. I have no short term memory left. Others just do not understand this problem. All I get is "Don't you remember. I just told you." And I'm just drawing a complete blank. Any suggestions besides taking notes and pinning them to my clothes?
I HAVE A TRUAMATIC BRAIN INJURY, WHICH CAUSED BRAIN DAMAGE, INCLUDING SHORT AND LONG TERM MEMORY LOSS. IT ALSO CAUSED THE COMPLEX/PARTIALS, AND SOMETHING IS GOING ON WITH THE TEMPORAL LOBE, BUT MY DOC IS NOT SURE WHAT.
SO, YOU THINK YOU HAVE PROBLEMS!!!!!!!!!!! TRY DEALING WITH BOTH!!!!!!!!!!I HAVE NEVER SAID I DON'T REMEMBER, I FORGET OR HOW DO YOU KNOW SO MUCH ABOUT ME, SINCE WE ARE TOTAL STRANGERS.......AND AM TOLD THAT I TOLD THEM THE LAST TIME I SAW THEM........WHO ARE THEY?????????????? WELL, REALLY, THINGS HAVE GOTTEN A LOT BETTER IN THE PAST 15 YEARS, I AM TOLD THE BRAIN CAN REGENERATE. I AM JUST KIDDING, NOT ABOUT WHAT HAPPENED TO ME, BUT YOUR HAVING PROBLEMS........AND LET ME SAY.......I KNOW WHAT YOU ARE TALKING ABOUT.
I HAVE TRIED EVERYTHING POSSIBLE TO HELP ME REMEMBER, AND I FIND THAT NO MATTER WHAT I HAVE TRIED, NOTHING WORKS FOR ME. THAT IS NOT TO SAY IT WILL NOT WORK FOR YOU THOUGH.
THE ONE THING THAT I DECIDED TO DO, WAS USE MY E. AS A PLACE FOR ME TO WRITE DOWN EVERYDAY WHAT WAS GOING ON WITH ME, KNOWING THAT IF I JUST PUT IT ON WORD, I WOULD FORGET IT. SO THAT IS WHAT I WAS DOING. THEN I FORGOT MY REASON FOR WRITING THE BLOGS, GOT TIRED OF DOING IT, AND UNTIL JUST NOW, WHILE WRITING THIS, I REMEEMBERED WHY I WAS WRITING BLOGS ON MY E. YOU MIGHT TRY THAT. ANOTHER THING I DO, SINCE I CANNOT FIGURE OUT HOW TO BALANCE A CHECKBOOK AT ALL, AND AM TRYING HARD TO RELEARN SIMPLE MATH, I KEEP ALL THE INFO. ABOUT CHECKS WRITTEN, AND MONTHLY BILLS ON WORD. THAT HELPS ME A LOT. I MADE IT A HABIT TO PUT EVERY BILL, EVERY DEBIT, EVERY CREDIT ON MY KEYBOARD, SO I WOULD REMEMBER TO PUT THEM ON WORD. I FORGET OF COURSE, BUT I CAN ALWAYS CALL MY BANK TO FIND OUT WHY THIS AMOUNT OF $ IS MISSING.
ANOTHER THING I HAVE FOUND VERY HELPFUL, IT TO TELL PEOPLE I MEET THAT I HAVE BRAIN DAMAGE, AND E., SO IF I FORGET SOMETHING OR REPEAT MYSELF, REMIND ME, AND KEEP REMINDING ME UNTIL SOMETHING ANY PARTICULAR PERSON SAYS, MIGHT SPIKE SOME RECOGNITION......LIKE THEIR ATTITUDE, THEIR CLOTHES, BEING RUDE, LAUGHING, A CERTAIN WORD THAT MIGHT SEEM HURTFUL, THOSE SORT OF THINGS STICK WITH ME.
I ALSO USE MY ALARM CLOCK.......I HAVE ONE THAT HAS TWO ALARMS, AND EACH TIME THE ALARM GOES OFF, I TAKE MY MEDS. I KNOW WHICH MEDS TO TAKE WHEN BECAUSE I SET IT OUT, WHEN I RESET THE ALARM EACH TIME. THAT HAS BEEN WORKING GREAT FOR ME, EXCEPT FOR THE LAST THREE DAYS, WHEN FOR SOME STUPID REASON I ACTUALLY THOUGHT I WOULD REMEMBER!!! LALA
THERE ARE ALSO WATCHES WITH ALARMS.
LET'S SEE......I USE EYECATCHING COLORED PAPER, WRITE VERY LARGE NOTES, NEVER TAPE THEM IN THE SAME PLACE OR I WON'T NOTICE THEM. I TACK THEM ON MY DOOR SO I WILL SEE IT WHEN I GO OUT. I FIND DIFFERENT PLACES TO TAPE THEM EVERYDAY, SO I DON'T OVERLOOK IT. I PUT NOTES ON FOOD I EAT ALL THE TIME, THAT SORT OF THING. WHILE IT MAY SEEM TIME CONSUMING, IT ISN'T, AND TAKES LESS TIME TO REMEMBER OR NOT REMEMBERING AT ALL.
A COUNSELOR TOLD ME TO TAPE EVERYTHING. I DID. IT SEEMED TOO TEDIOUS, GOING BACK AND FORTH, TRYING TO FIND WHAT I MIGHT NEED, OR LOOK FOR. AND I DIDN'T ALWAYS MAKE A LOT OF SENSE.
THE OTHER THING I DO...........I PRAY. I PRAY AND I PRAY, AND I MEDITATE WHEN THE MOOD STRIKES ME. POST ICTALS..........GOOD LUCK!! IF ANYONE HAS EVER FIGURED OUT HOW TO KNOW WHAT WE ARE DOING WITH POST ICTALS, I WOULD CERTAINLY LIKE TO KNOW THAT ONE!!
HOPE SOMETHING I HAVE SAID HELPS! JAN
To itsmyeviltwin; I'm glad I went onto this site today and saw your post. I had a very negative write-up from the Neurophsychologist also. She said I was "intentionally holding back answers" implying I was faking it to get attention or something. I wanted to punch her in her fat face right there. But then they would have hauled me away in a straight jacket. Are you on medication right now? I'm not so this makes me think E is destroying brain cells.
I just write stuff down as soon as it happens, like if I have an appointment or something. That way I don't forge it. Or whenever something pops into my head that I need to do that I've forgotten I'll do it right then while I'm thinking about it. My life has become one big post it note. :) I was thinking of getting an appointment book so I won't forget important stuff.
Peaches, I would have to agree I have lists, a diary and use post its for everything. If it isn't wrote down it doesn't happen. You just have to accept this is the way life is now I think. I even write on my hand sometimes! So sad I know.
Do you suffer musch with anxiety now your on the Leaxpro? I have been super anxious and emotional so as I see neuro in a month considering all options. Are there any other side affects? I'm glad things are going better for you.
My anxiety is almost nonexistant. I have always been a shy, nervous person, but now I find it easier to open up to people. I haven't noticed any side effects from Lexapro, but I know it affects everyone differently so you may need to try a different drug to get better results.
Thanks for all of your posts, i have had epilepsy for the better part of 34 years. I have been on Dilantin for the past 34 years, but now am on Keppra. As it turns out the dilantin worked well at controlling seizures, but also worked at destroying your bones by blocking calcium absortion into the bones. So now i am facing a new battle of shoulder surgery after a grand mal last june that caused a significant injury to the bones in my shoulder and socket.They put me on the Keppra and man it has turned me into a different person. the littlest things set me off and i have no patients anymore. Any help anyone has would be helpful. i really do not want this to come between my wife and i or my business partners. this Lexipro, what is it?
Kevin
Lexapro is an anti-depressant and an anti-anxiety med. It works great on me. I was on Keppra for a while but couldn't handle the irritation anymore. I switched to Lamictal and it works good. Lexapro is a God send. Nothing bothers me anymore. The whole world could fall apart and I would probably just laugh. Maybe you should ask your neuro if you would benefit from Lexapro. My neuro said a lot of people with seizures also suffer from depression. Makes sense I guess. It is depressing to have a chronic illness that affects so much of you and you can't always control it, not to mention there is still a somewhat of a stigma attached to it.
I've never heard of a brain being too irritable before. Of course I'm not a doctor. I know a lot of people on Lexapro and it has benefited them greatly. Maybe the psychiatrist will try it on you or maybe another drug that works just as well.
hey peaches,
i know what your going through.i'm always moody and frustrated over the simplest of things. i get angry because now i have problems with my speech. i have problem remembering the simplest of words or even just getting the simplest sentence out of my mouth. i get frustrated easily and snap at people because of it and i was never like that before.
i just take a deep breath and start over. its the easiest way that i deal with it.
hope this helps some. :)
I have the same problem with speech and remembering words here lately. It's very frustrating. I feel so stupid sometimes. It's like my brain is working faster than my mouth can get the words out. I'm dealing with it the best I can. Whenever I forget something or do something stupid I just laugh it off. I think the Lexapro helps me not get mad over it. I feel really good on the Lexapro, like my whole life could fall apart and I was probably just laugh and say "oh well." I'm starting grad school in the fall. I'm hoping things will get better before then. Right now I just tell people my mind is in hibernation and will be back in the fall. :)
Peaches,
I thought I'd join in as I can really relate to what you say. I started to have partial seizures about 2 years ago although not diagnosed initially. Previously I'd suffered with grandmal seizures. I have had people say to me that I am not the same person anymore, which sometimes can make you feel quite sad. And sometimes I feel that I have to try and be the same person and it takes so much energy, as everything now I do so much slower. I do get frustrated at times with myself but am more prone to burst into tears than get angry. I used to suffer with bursts of anger related to my TLE but these are now controlled with the tablets or appear to be at the moment. Although I have found myself panicking lately more than I ever would have before, and comments that I;m hyper at times?
The memory mine problems are a pain and became really bad for a while to the point I was signed of work for almost 4 months am back on a rehab now. Its nothing like it used to be as I used to be really on the ball and I also have poor concentration so I'm trying omega3 which I think is helping. Sometimes people question whether I'd be better off the drugs, but then I'd be having more seizures and more damage to the brain which not everyone seems to understand - so surely we are better off with the pills?
As for pills to improve your mood, I haven't taken anything for that...yet! Best wishes to all Bex
It's nice to know I'm not alone in the memory department. The Lexapro works great on my mood. I no longer feel irritable anymore. I got off Keppra which also helps my mood. I had to get my Lamictal upped because it wasn't strong enough by itself. I'm about to start grad school in the fall and I just hope my memory will do better. I have problems with concentration a lot here lately. My long term memory is okay its just my short term that seems affected. My life has become one big post it note. :)
rocknroll,
I can sort of relate to what you are going through...Six months ago I had a gm/tc seizure while I was driving and the neurologist increased my medicine...Truthfully the gm was my fault because i wasnt taking my medicine like i was supposed to and staying up late studying for tests in school, but there was no real need for the increase in medicine and ever since they increased it things have gone downhill for me. I was seizure free for nine years on topamax and now i cant get controlled on combination therapy...its very frustrating to have seizure after seizure it seems. I Hope things start getting better for you!
~rach~
I was really bad about taking my medicine there for a while. Didn't want to accept that I had a seizure disorder since no one else in my family does and I hadn't had a head injury. I had really bad seizure in my sleep one night and almost bit a hole in my tongue. After that I got better at taking it, but I still skipped it alot. Then I got on Lexapro which really improved my mood and now I never skip a dose. I guess I was too depressed to care if I had seizures. I feel so much better on Lexapro. I always knew I was depressed I just thought I could handle it without medicine. Guess I was wrong.
Hi my name Is Rena. I just want to say that reading everyones comments really touched me. I know exactly how you feel & what you go Thru. I've had This since 2000, I'm 26 now. I haven't felt The same since Then. After I have a seizure, I lock myself up In my room & I just sit in bed waiting To feel normal again. Most of The time It takes a very long time To feel normal again. Having partial complex seizures Is very frustrating. I have them very often & I don't remember what goes on while I'm having them. I lose my memory & I don't get It back for a while. That scares me. I'm afraid to be alone & have a seizure because of that. I try to explain to others how this feels but It Is difficult. I don't feel like the same person I use be. I have my good days & my bad days. My personality does change a lot because of this. I haven't found a medication that has controlled my seizures yet. I've tried 8 different pills already. Going thru this does make me depressed & does change my mood & personality. It does make me feel better knowing that I'm not the only one feeling this way. Aloha!
Dear Peaches
I also find it hard to remember anything-like if someone asks me something about something two years ago eg,i dont remember-its like its just not there.Now im finding that my short term memory is also being affected-like thinking of something i want to buy etc then forgetting it 2 seconds later but this doesn't bother me so much.I'm also very easy to anger at people etc which i dont like doing.I have no friend because this thing makes me change as a person and i dont want to be mean to people etc.I'm not even sure if what i have is a type of seizure-no one raelly knows because my symptomsare so unusual.Can you tell me what your symptoms are or what type of seizures they are.
Thanks
I have simple partial and complex partial seizures. It starts off as a weird deja vu feeling, followed by a chemical smell. Then I would feel weak. My whole body would get a prickly pins and needles feeling. Things would start flashing through my head, like a memory or a flashback. I don't know what it was, but it was something familiar, but when the seizure was over I couldn't remember what I saw. Sometimes I taste blood in my mouth and I start drooling or spitting. My hand keeps going up to my mouth trying to see if I have blood in my mouth. The whole time the episode is happening I feel strong feelings of panic, depression, fear like nothing matters anymore. Sometimes the feelings are so strong they bring tears to my eyes. I am usually aware this is happening, but sometimes its an altered awareness. I usually stare off into space when this happens. I've never tried talking so I don't know if I can or not. Sometimes words will run through my mind over and over again. I've never had convulsions or lost consciousness, at least not while I'm awake. I hope this helps. What kind of symptoms do you have?