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I Have Epilepsy

Enough said.

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Hi 1Never,

I'd like to know more, if you're willing to share. Sounds like we've all been there at one point or another. It's kinda overwhelming to go through this alone. Can I ask you a few questions? How long have you had epilepsy? What types of seizures do you have? Can I ask you your age? Glad you came here, hope you post back.

Sam

It is overwhelming, especially if you are alone. I am a 19 year old college student, studying music. I work two jobs as well as go to school (summer classes have come to a wrap for now, but I install carpet and teach guitar classes at the local arts school in matthews, va) I live with my little brother and single mother on an 11 acre horse farm and I pull the weight around here.  I have grand mal seizures I believe. I completly black out for a while. I had my first seizure two years ago while I was mowing my grass, strange I know. My second one was when I was picking my little brother up from school. This was around Christmas time. I was driving my truck but recognized some of the symptoms from the first one and pulled over. I hallucinate right before I have a seizure. I am generally under alot of stress as well. I do not get stressed out over everyday things such as school or work, but generally irrational events that seem to find me, i.e. stalkers and family problems.

Right before my most recent seizure, I smelled the perfume that my ex-girlfriend wore. I then heard a computer glitch sound that grew higher in Hz as my head got closer to the ground. After I came out of that, I immediately had my first stroke. I don't remember the week that followed after that. About a week later I posted that blog about hating my life. I love what I do and realize that most kids my age don't have nearly as much as I have, and if they do, most didn't work for it like I have, but if your 19 years old like me, and you've already had a stroke, on top of epilepsy, you start to question life in general.

  I am not a depressed individual, nor suicidal (although Keppra and Lamictal had some pretty nasty side effects on me, so I discontinued use altogether, I have not taken anti-epilepsy meds in over 6 months.) After all of this though, on-top of my girlfriend leaving me for one of my best friends, and losing most of my friends (I know it sounds like I'm playing pity me now, I actually handled it pretty well, it just sucked, and it happened right before the stroke) and on-top of school and work and trying to help out around the house, i realized, "Man, this sucks. I hate this. I'm 19 years old with epilepsy and now heart problems on-top of all the other Sh** that I'm trying to do."

I pull through everyday, get to my lessons, get to work, get my school done, practice my instrument, help out around the house, and even go to the gym, so don't think just because of my post I'm curled up in a ball somewhere letting epilepsy control my life. I've found, that if I feel a seizure coming on (remember I'm off the meds) I get some water or try to get cold some how, or I just breathe very, very deep and I don't have one (but it's not always a guarantee). My main problem now is this horse kicking my chest into left field sensation that I have. There is no other way to put it. It hurts. Life goes on, but these aspects suck, and I would be alot happier without them! :)

   Thanks for letting me share that, it felt pretty good actually! What about you?

               Cheers,

                 Tom

TOM,

YOU SAY YOU WOULD BE A LOT HAPPIER WITH OUT THE SEIZURES. WELL THERE IS A SIMPLE SOLUTION, JUST TAKE YOUR MEDS. YOU ARE PUTTING EXTRA STRESS ON YOUR BODY EVERY TIME YOU HAVE A SEIZURE. SINCE YOU HAVE ALREADY HAD A STROKE, I AM SURE YOUR NEURO HAS TOLD YOU THE IMPORTANCE OF TAKING GOOD CARE OF YOUR SELF.  AS FOR FRIENDS, I LOST A LOT OF THEM TOO WHEN MY SEIZURES BECAME UNCONTROLED, IF YOUR FRIENDS DONT STICK BY YOU THEN THEY WERENT REALLY YOUR FRIENDS AFTER ALL. AS FOR YOUR GIRLFRIEND, ITS BETTER TO KNOW SHE WOULDNT STICK BY YOU THRU SICKNESS AND IN HEALTH BEFORE YOU GOT REALLY SERIOUS.

LIFE CAN STILL BE GOOD, JUST TAKE YOUR MEDS TO STOP YOUR SEIZURES. YOU CAN START DRIVING AGAIN AND LIVE YOUR LIFE WITHOUT WAITING FOR THE NEXT SEIZURE TO HAPPEN.

I TYPE IN CAPS FOR VISUALY IMPAIRED

GOD BLESS,

BANFFGIRL

LIFE IS FRAGILE, HANDLE WITH CARE.

  Ive had epilepsy since 1985 it just came on no reason im 57 now in 98 the meds stopped working so the driving was a no,no and that was the end of my jod i was a 2nd shift mgr. of a big groc chain in charge of a lot of people and a big store some people dont understand epilepsy they see us as normal and can do the same things we can at most times till we have a seizure !!! Myself i can go days without one then out of the blue bang im on the ground somtimes i have warnings somtimes i dont  i lost my job because i cant drive and i have looked for others near home but no one will hire me if i tell them i have epilepsy and my age is a factor im sure !So i do yard work and sit around alot i dont hate my life but some of my extended family think i should be working but they are and dont have this thing hanging in there way of life they just figure you take a pill and its a ok get on with it im lucky i have a wife that understands some what shes my life !!! and best friend !!!Just know your not alone out there theres lots of us at all ages and most feel the same at one time or other but its not the end theres is hope for us if we want it we just have to wait and look for it when it comes !!!!!

i hate myself too...whenever is look into the mirror, i would stare at myself and ask why am i like this why is every1 different.....i guess im not the only 1..

sometimes i hate my life too. when i do it might be the meds talking ( i take topamax) or even the type of seizures i get which seem to affect the way i feel and think to a degree that makes my life suck. when i feel that way i know if i wait around long enough, things get better, whether its the meds cycling out of my system over the course of the day, or just the after seized going away, i eventually feel like i sorta like my life. I really love potato chips. MSG makes potato chips taste really good. gratitude is the MSG of life. when i am phamicalogically and neurologically able i try with all my being to be grateful for something, and occasionally i succeed. on those days life is good. i hope that helps.

i don't hate my life as much as i hate this bitch ass doctor who yanked me off klonopin and caused a grand mal seizure which rendered me partially paralyzed and with generalized epilepsy and the fact that i can't get another doctor to put on paper, that him discontinuing me from a mountain of benzos started this shit in the first place.

so i want to kneecap this punk ass but i can't flee the scene fast enough because of my paralysis, any suggestions????

I have to agree. This curse cost me a great career and landed me with a dead end job that has no future and half the pay.

I was Born with EPILEPSY and am now 51yrs old!! YES, of course I HATE my LIFE., But I have grown to KNOW that Just because I have "Grand-Mal" Seizures , that I AM NOT A STUPID PERSON!! YES, I had my Fair Share of being CALLED "STUPID" and other 4 letter words when I was in School and Married. But one day I came to and heard my EX calling me down because of a Seizure I had., and said to myself..., "ENOUGH IS ENOUGH" and got rid of her. My Son ALWAYS STOOD by my Side., Talked to me, and would NEVER let ANYBODY come near me , as did my Dog!! My Son and I Talk EVER NIGHT on the Phone., my Dog has died of Brain Cancer., and my EX is someplace in Canada., where I don't Know and Don't CARE!! so YES., I live ALONE

I have Lost both my Drivers and Pilots License. FUNNY THING IS., when I was in my Pre-Teens , I was wanted my CLASS1's so I could haul logs., Then when I got them in my late 30's to Haul Equipment around..., I was SACRED TO DEATH !!

Was able to Keep them up until 1994 when I drove a SEMI thru a "DINING ROOM" and Shortly before that I backed OVER a Car with a Dozer. LUCKILY I didn't HURT or KILL anybody but MYSELF!! I am now PERMEANT-RETIRED and live off a Disability fUND., BUT YA KNOW WHAT...,,"I WOULD'NT WISH "EPILEPSY" on my Worst Enemy!!

PS;

WHO Would've Ever THOUGHT that I'd LIVE this LONG??LOL

Tom, Your ex-girlfriend did you a favor, better your ex- girlfriend than your ex-wife taking all your money. I've often thought the best wife to understand me would have to be an epileptic too. I hope you don't drive while off the meds, good luck.

Hi there.  I hope you post again and share more about your situation.  People here are very understanding, and helpful...  Val 

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 

God has created many fantastic things, but he should have gotten a degree in electrical engineering first....

hi there, 

 i hope your having better days, please dont hate your life and dont hate yourself due to epilepsy.life is so much more than what you may feel at this time. i hope you come back to this site as there are some pretty nice people here that can understand yyou and how you feel. hate is too strong a word..try loving yourself and you may be able to accept what god gave you .. sorry if it sounds kinda wishy washy but its true stay well and be strong  bb

 

I think we've all been there, and go back and forth from time to time. You are NOT alone, there are many people (on this site and off) that feel just like you do. If anything, you are lucky because you do not take things for granted, like many people, who are not yet sick, do. You are made stronger by this.

I hope that you find some comfort here. And if today sucks, there's always tomorrow.

Luv, M

I had also scraped bottom -for about 3 yrs, until I had a child that turned 5 & then the surgery. I would have my seizures at night when sleeping, no other time. I was angry that it could happen to me, exhausted, and felt helpless. I got a pet &  I believe he is what saved my life. No matter what, I would have to get out of bed and take care of him.  Irregardless, he was always there for me know matter what was, had, or about to happen. I know how scary it is & i am sorry for what you are going through. You are in my thoughts.

 "good or bad - things will never stay the same"

 

Hi 1never,

I am so sorry that you are going through a difficult time right now. I know how frustating it can be to have seizures that are not controlled.  However, my recommendation is when you start to feel upset, try to think of the last few positve things that have happened to you. Always remember the seizures are just one problem in your life and that while they may never go away, with the help of your doctor you can fight back.  Don't let the epilepsy beat you, you beat the epilepsy!         

Abby  

I'll drag my naked butt over a half mile of broken beer bottles before I give up.

HI JDERRY, JUST WANTED TO SAY I AGREE.

TLBY&KY

ADZ

HI 1NEVER,

THE THING WE HAVE TO REMEMBER IS THAT WE HAVE A CHOICE, AND WE CAN CHOOSE TO GIVE UP OR GO ON.  YES THE INCONVENIENCE, THE PAIN, THE TOTAL UNFATHOMABLE, ERATIC, PAIN IN THE NECK OF IT ALL CAN GET TO US.  BUT WE NEED TO STRIVE TO BEAT THIS THING.

WHEN IT GETS TOO MUCH TALK TO US, WE CAN UNDERSTAND BETTER THAN ANYONE, ITS WHAT YOUR BLOG IS FOR.  I ALSO HAVE TO AGREE WITH JDERRY'S COMMENT.

THERE ARE PEOPLE HERE WILLING TO LISTEN, PLEASE USE THEM.

TLBY&KY

ADZ

glad to hear you say .....we do have choices I prefer to suck it up and show my kids so what if I have a seizure every year...I'm lucky to have them in the comfort of my own bed ha ha we joke about it 'cause a couple of years ago I needed to get off Diatlin can't spell sorry anyway it was causing neuropathy in my feet so I flipped my car 4 times on a busy road and walked away....you call that lucky I loved that song 'Jeaus take the wheel' yeah he did keep your chin up it worth being a live for just a few inconveniences.......lets be strong women and men take care

I got started when I read the post because the poster goes by Adz... which is my bf who is epileptics nickname, but the date doesnt match his diagnosis... so there are 2 epileptic Adz floating about the net. I wanted to say that regardless, I'm so proud of all of you and I'm going to encourage my Adam to join the network b/c you all hold each other up, even if you'r complete strangers. It's beautiful. We met in London and when he would have a seizure, I'd just put him on his side and hold his hand and tell him he was going to be okay. He usualy couldnt hear me/respond, but I feel terrible now that he doesnt have me to hold him. He calls up frightened sometimes and it breaks my heart. You guys gotta continue to be awesome to one another. I can only imagine how hard it is.

Well ur great too. I know that your friend can not hear you, but from experience, I know that when someone is with me holding and talking to me it'slike what they describe with coma victims, I have a funny memory of it, not of the seizure but of the pressence. I don't really know how to express that but you should know how great you are. It is so rare to be able to find people who are brave enough and who love you enough to stay after witnessing a seizure, including family I can count them on one hand.

I agree, sort of. But I actually love my life. What I hate, more than anything, is when these stupid &*^&^&^ electrical impulses get in the way of me living it. Its complete bull shift. There's no getting around it. It just sucks sometimes.

 

 

Yes, it's frustrating to the point where having Epilepsy can feel like it's overwhelming...but you have to remember that Epilepsy is NOT your whole life. The condition is NOT your whole essence..your whole being. It does not define who you are as a person, nor does it entirely control your future and present life. You are more than "an epileptic"...you are a Person. A real person, who  is  just as good, just as capable, and just as competant as any one else. Having Epilepsy only limits your innate, and learned, abilities to whatever degree You let it. Sure, there are struggles, but if you try...if you believe in yourself...then you will get through it, and while you may not be able to live what some define as a "normal life", you will learn that there is as much happiness and fulfillment available to you as you want. Your only boundries are in how much you believe in yourself.

Or, you can go the opposite path and feel sorry for yourself for the rest of your life. It's your choice.

I speak as someone who has lived and dealt with Epilepsy for 45 years. It hasn't always been easy, that's for damned sure, and I've run the gamet of every negative emotion in the book. But I've still struggled to make my way, to live and enjoy life ( often against the advice of professionals...), and even though I've had to live with the seizure condition almost my whole life I have Never let it overwhelm me or control who I am, and neither should you.

Good luck, my friend...I sincerely hope you find a path that's right for you, and learn to be happy in spite of your condition.

 

Archer

 

Archer,

I am someone who has struggled with epilepsy as long as you have, and I have lived my life with the same exact convictions that you have. You phrased it far better than I was ever able to. When you're young and newly diagnosed though, I'm not sure how much of an impact these words have. I remember the fear and isolation I felt when my seizures first began, and this poster is probably looking for a support group. Maybe we should direct that poster to the chat. I've never used that feature here on the board, but I bet that would be a great place for him/her.

Sam

Happy Daze  my name is ducky and that wus a great way to describe livin with ep. good for u and i hope more people realize that.

I have been an epileptic since age 2, I am now 44, but I Do Not Hate My Life. No, having epilepsy is no bed of roses. In my teens I had to quit my ninth grade year due to a quack doctor. He had me on to many meds, I had to find a new doctor who put me on two meds, then I finished high school. When out of school I admit I thought of suicide, BUT I told myself, "You are not taking the easy way out." I then started thinking about my half brother who became a paraplegic at age 19. I started thinking of children who had cancer. I started thinkng of people with no limbs. You see, I began looking at my epilepsy as others problems who made fun of me behind my back or did not understand it. I played football in high school, had girlfriends who had no problem with me having a seizure or seizures. I did not like having epilepsy and still don't, but I am not going to let epilepsy win. I learned to go around the limits epilepsy tried to put on me. The funny thing is my epilepsy/seizures have taken a different path. Now, they occur while asleep. Sometimes I wake up in a bad mood. I have learned when I feel grumpy to play with the dogs or go swimming with them, this changes my mood, so I win.

If you are in your teens hang tough, study epilepsy, and DO NOT let those who might be calling you names get you down. I always told people I was doing the, "Shake and Bake". I did that so others were not scared or thought they had to watch what they said when asking me about epileptic seizures. The two things I corrected people on were when they called the seizure a FIT or felt sorry for me. I always thought , look to my left, look to my right, their will always be someone in worse condition than me. Good Luck, E_Loner

I was diagnosed with brain tumor at age of 16 and was in coma for few days after first attack of my brain tumor. And when I was just 10, my right hand and leg had stopped working, they are fine now but they are still not as good as my left hand and leg is. After 2 years of my brain tumor I was diagnosed with epilepsy and still struggling with that I am 26 now and lot of other illnesses as side effect like allergy, panic disorder. According to doctors I can't lead a normal life because of series brain problems. Sometime I just feel sad but never felt like to commit suicide or hatred for my life. There has been millions of time when I can't either go to take exams or enjoy my life like others. I still love it and I am doing fine though I have to take medicine everyday and don't know how long I will be taking it (may be all my life). I am a graduate student and doing PhD. in chemical and I am not gonna let any illness or any problem win over me or stop doing the things that I have to do.

I HAVE HAD EPILEPSY ALL MY LIFE. I AM 50 AND IT BECAME UNCONTROLABLE ABOUT 6 YRS AGO. I NEVER HATED MY LIFE BUT I HAD TROUBLE EXCEPTING MY NEW LIFE STYLE SINCE I COULD NO LONGER WORK. I STILL HAVE BAD DAYS WHEN IT IRRATES ME CUZ I WANT TO GO SOME WHERE AND CANT SINCE I DONT HAVE TRANSPORATION. OR I HAVE MORE SEIZURES THAN USUAL. THERE IS A GREAT GROUP OF PEOPLE HERE TO CHAT WITH IN THE CHAT ROOM WHEN YOU NEED TO. THE BLOGS ARE GREAT TO PUT YOUR THOUGHTS DOWN AND JUST LET ALL YOUR FRUSTRATIONS OUT. WE ARE ALL HERE FOR EACH OTHER. WE ARE HERE FOR YOU.

I TYPE IN CAPS FOR VISUALY IMPAIRED

GOD BLESS,

BANFFGIRL

LIFE IS FRAGILE, HANDLE WITH CARE.

Sometimes I hate my life.  I don't drive and it's so hard to get around.  I hate relying on other people all of the time.  I also am on Social Security Disability but it's not enough to live on so I am looking for a part time job.  I'm hoping I can handle a few hours a week.  I sometimes don't go places because I am afraid I might have an episode while I am out.  I call them episodes because I am just recently diagnosed with TLE and I've called them "episodes" my entire life.  At least I don't have to hear from doctors, emergency rooms, anymore "you must be having panic attacks".  That was frustrating. 

 I don't lose concscienceness during my seizures.  I think, from the reading and researching I have done, that they are similiar to myoclonic seizures.  I don't have any control over my limbs, they jerk and spaz all over.  My speech also becomes very slurred and my vision is sometimes double.  But my neurologist says that my EEG shows seizure activity in the temporal lobe section of my brain.  Does anyone else have similiar symptoms?

in d am age and a stroke as an infant. my left hand is weak i can only do so much but my seizures are on the right.. The dr. says that's not suppse to happen. c                                                                                                                                                                                                                  I usually have  my seizures at night and they wake me up i jerk for a couple of hours. I'm a mother so it's  little more nerve racking b/c she has to ride thebus. You never knew when or how long it was going to happen. I do still have a part time job though and they understand my condition.

I am 54 years old.  About 5 years ago I was diagnoised with have complex partial seizures.  I have changed medications many times and I have a vagus nerve stimulator, that is turned off because it did not seem to stop the seizures.  I take keppra and trileptal now.  Last week I had a about 4-5 seizures all in one evening.  There are parts of the evening that I can not recall.  I am getting more frustrated because things seem to be getting worse with my memory.  Does anyone else have this situation?  What are you doing about it? 

Oh, Banffgirl, my heart breaks for  you when I read this.  I feel the same way sometimes.  Then, sometimes, I'll see a beautiful sunset, or feel a cool breeze, or hear a bird in the woods, and say "It was worth it just to do that."  I hope you'll have more beautiful moments really really soon.  Hang in there, girl.  I have days exactly like that, but thanks to the miracle of 40mg of Lexapro a day, things have gotten better.

Grey

hello, i have to admit sometimes i hate mine to...i have had 3 miscarraiges, but i have 2 healthy children..however i had to endure alot of pain through those pregnancies....

my seizures are the result of head injuries when i was 11, i am 37 now...i just happened to be somewhat of a tomboy and played rough..i had a hematoma also removed from the top of my head when i was younger...i was told that i would grow out of them, well 26years later i am still having them..high school was very difficult because sometimes i would have seizures in the morning and then go to school with blackeyes from falling into my dresser or my bed posts..i couldn't finish college because every morning afetr i took a shower to go to class i would have one and would wake up having found out someone had to drag my naked body out of the girls shower to put me in my bed....that was embarrassing

i haven't been able to hold a job, i have been on tegratol, dilantin, lexapro, depakote and currently on lamictal, i have experienced severe depression, anxiety and stress....so beleive me i know where you are coming from....i do not feel sorry for myself though...it's irritating to be like this and try to deal with it..i also have myoclonic jerks which feel like seizures to me...

i do however feel like i have had some of my life taken away..i wanted to join the military to give my daughter a better life but of course i couldn't.....so if you hate your life read this...i should continually hate mine..

 

 

im 22 years old and I totally understand It is a hard thing to deal with, I am the only one I know that has it and it can be very frusterating to me at times.. I thought I finaly had it under control I hadn't had a sezure in a few years I had gotten my licence back, finished college and had just bought a brand new car... then this morning it all changed .. I had another one.. when will it ever end? the hardest part is people not understanding... that is why i came on here today, i needed to know that there are others feeling the same as I do... I talk to my friends about it but they just don't understand sometimes I feel retarded. I couldn't imagin not taking pills when I wake up and go to bed.. and never knowing when something bad is going to happen, some people just don't know how luckey they got it!

BRITT,

OH SWEETIE, YOU ARE NO LESS INTELLEGENT JUST BECAUSE YOU HAVE SEIZURES. YOUR FRIENDS MAY NOT UNDERSTAND BUT I AM SURE THEY STILL CARE FOR YOU JUST BECAUSE YOU ARE YOU. WE ARE HERE FOR YOU ANY TIME YOU NEED US. IF YOU JUST NEED TO TALK, GO TO CHAT. THERE IS USUALLY SOME GREAT PEOPLE THERE AT ANYTIME TO TALK TO ABOUT THINGS. WRITE A BLOG TO BLOW OFF STEAM. WE  READ THEM AND THERE ARE PEOPLE THAT WILL GIVE YOU ADVISE IF YOU WANT OR GIVE YOU WORDS OF INCOURAGEMENT.

JUST BECAUSE YOU HAVE HAD A SEIZURE AGAIN, DOESNT MEAN YOUR DOCTOR WONT GET THEM UNDER CONTROL AGAIN. HAVE YOU ALREADY GONE TO YOUR NEUROLOGIST TO HAVE YOUR MEDS ADJUSTED? HAVE YOU TALKED TO YOUR DOCTOR ABOUT HOW YOU FEEL WHEN IT COMES TO YOUR FEAR OF HAVING ANOTHER SEIZURE? HE IS THE ONE WHO CAN PUT YOUR MIND AT EASE ON THIS NOTE. 

I KNOW IT DOESNT SEEM LIKE IT RIGHT NOW, BUT WE ARE ACTUALLY PRETTY LUCKY. WE CAN WALK, WE CAN ENJOY LOOKING AT THE BEAUTY THE WORLD HAS TO OFFER, WE CAN ENJOY A GREAT MEAL WITH OUR FAMILY AND FRIENDS, WE HAVE A EDUCATION, WE HAVE ROOFS OVER OUR HEADS, FOOD IN OUR STOMACHES AND CLEAN WATER TO DRINK. AND BELIEVE IT OR NOT, WE DO HAVE OUR HEALTH, WE ARENT SICK, WE JUST HAPPEN TO HAVE EPILEPSY. GOOD LUCK HUN, THINGS WILL START LOOKING UP FOR YOU.

I TYPE IN CAPS FOR VISUALY IMPAIRED

GOD BLESS,

BANFFGIRL

LIFE IS FRAGILE, HANDLE WITH CARE.

I completely understand where you're coming from. I have had seizures since I was 6 months old (I am now 22). One main thing I'm sure you've already heard so many times is "NEVER GIVE UP." I actually had to defy my parents since they were so ready to give up when my neurologist that I had been under the care of for 13 years had been unsuccessful in getting my seizures under control. I wound up ignoring them telling me, "there is no way to get the seizures under control or it would have already happened." I can say, parents can be the biggest helpers or the biggest hurt as well.  I see it happen both ways all the time in the hospital I work at in the neurology department. I actually wound up going through three more neurologists until one finally looked at my medical records one time and immediately reffered me to a university-based hospital that he knew could handle my seizures.  They have actually been so successful and have brought my seizures down from an average of anywhere from 20-100 per month to an average of 1 every six months. They were actually even able to find the fibrous tissue on my left temporal lobe that is causing my seizures. I had had 5 EEG's and at least 4 MRI's and CT scans performed on me that were unsuccessful in finding the fibrous tissue. The main things I tell my patients with epilepsy is "never give up" and "if you ever feel like you are being ignored in any way by a neurologist, find a new one." If it comes down to it, try and find a university-based hospital that has a neurology unit since some research we did while I was in College getting my Bachelor's degree in Nursing figured out that they are usually the best prepared for specialty areas like neurology. If you have any questions about the seizures or treatment, just e-mail me at shawn@tcvfd.org and I'll help you any way I can. Just never give up.  

Hi 1never,

Epilepsy is not the end of the world, it's just the start of a new one. Yeah it sucks at times, but like one of the other posters mentioned, sometimes a sunset can remind you of how wonderful life can be.

Cran

I was diagnosed with epilepsy at age 20. It was the worst thing in the world at the time because my family and friends could not understand what I was going through; I felt completely alone. It wasn't until I started learning about epilepsy and how I can still live life the same way as I always had, I just have to be careful. I'm still able to scuba dive, play sports, among other things, but I know what my limitations are. Don't close yourself off because you have epilepsy. Good luck!

I am 29 years old and was just recently diagnosed with Epilepsy in Jan. of this year (2008)(First Grand mal on Jan 26 and 2 more following that one, but have not had a grand mal in a little over 5 mos., just the auras.), and right now I do hate it because they can't seem to get my meds straight.  I have been through almost all of the possible ones available right now.  I have all the major side effects of each one.  If they were tolerable I would try really hard to manage, but I can't live like this.  I have two children ages 7 and 9.  I do work full time.  It takes everything I have just to get out of bed every morning and when I get home I get right back in it.  Thank God for my husband and his understanding and patience, but I don't know how much longer any of them will be able to take this either.  I feel like I am becoming a hermit.  I don't go anywhere but work and my daughters soccer games.  I was never the type of person to lay around.  I was always on the go. The doctor has recently began talking about surgery but they are not exactly sure where the seizures are coming from.  They just said they have a pretty good idea.  They said I have slowing of brain activity in the right hemisphere of my brain and my eeg also read abnormal in my temporal lobes, I believe in my left side.  This is all so confusing. Has anyone else had so many problems with meds???

Jen, I live in fear everyday,and anger too because my mother never told me about the epilepsy in her family until she was on her death bed. I would have never had a kid if I had known. My whole life I never felt right, but, my first diagnosed seizure wasn't 'til I was 47.  Only other people with seizures and the fear of seizures will ever understand our plight. I want to find a doctor who has seizures, he or she would be the best doctor to have. It seems all meds make you feel like crap, my best days from side affects are with plenty of sleep, exercise and  learn bio-feedback.

yes yes YES!!!!!! i am 41 was born with epilepsy then when i was five the seziures stopped but about 4 years ago my spouse, me and our two daughters were in a car accident.  The seziures started again.  You sound like me the only difference is they have NO idea where my seizures come from.  But the medications are awful.....i have been on 8,9 10 ??? different meds.  a year and a half ago they decided to implant me with the vns device (www.vns.com)  My life has totally changed!! i do not need the high doses of meds anymore (i am on depacote)  18 months ago the dose was 1500 mg i am now down to 250mg a day.  I do still have seziures but with the device they are stoppable.  (exuce my spelling i am a little tired today so my brain is slower than my fingers)  ask your dr's about this to see if it would help you..........along with all the med changes i had lots of depression (which is a side effect of almost all the seziure meds!)  so please take care of yourself and realize that there is hope and may God bless you in whatever decison you make!

Just in case someone in this forum has missed it somehow, the diet sweeteners sucralose (Splenda) and aspartame (Equal, Nutrasweet, etc.) are well-known for initiating seizures.  See SplendaSickness.blogspot.com and AspartameSickness.blogspot.com for details. 

Mark

Hi all,

you have the greatest reason to love your life...a wife who loves, cares and understands you. Nuts to what everyone else thinks! Count your blessings. As long as you're not in the back of an ambulance or a police car, life can always get worse.

peace,

marko

I can relate. I've been rescued all over Manhattan, since 1996.

I encourage you to read my article and take my last paragraph to heart (:Life is hard..."):

 

I ran across your article while doing a Google search on:

"I've had a stroke and have epilepsy. Why do I have strange sensations in my head after having had a stroke and now being epieptic.?"

I was writing my neurologist about the seizure that I had earlier today. It's difficult to describe briefly the feelings that I have in my head. I generally, I say, "My brain feels like..." to which the reply is "You can't feel your brain".

Just in case you wonder here's the email I just sent my neurologist (Dr. Luciano - associate professor of NYU epilepsy center in Manhattan):

Hi Dr. Luciano,

I would say yes, no or I don't know. Since short emails are best for you that's my simplified answer. I could discuss it fully, but you're much too busy for that. I'm sure the answer is discussed fully somewhere in a medical textbook

Obviously my seizures and the weakness are directly caused by the stroke-damaged area of my brain or the damaged nerves that I've felt and complained about, and or mentioned and discussed with Dr. Rutkovsky for the last nine years. (1999-2008). I'm sure I've mentioned it before to you. The simplest way to pinpoint it is to say"the problem area is the top-center of my head over and into the area of my left temple."

 

As I'm typing and thinking about this, I realize that my thoughts are in the exact place or area that I'm referring to when I say "the top of my head where I feel...". That's obviously something I would have noticed in the past. I don't know if I've ever said, "that's the same area where I feel my thoughts.There is obviously a blood vessel, capillaries or whever there, because I can feel a pulse right there at "the top-center of my head. It's pulsing at the same speed of my heart. Sit up straight and breathe regularly. You should be able to feel your heartbeat. It's the same rate. Do you feel the pulsing in your head? I do.

 

I think that the seizure that I had on the subway car earlier this year was caused by some form of stress. I was standing by the doors on the left side of the train. I looked over into the eyes of of a girl and that triggered an awareness that focused on the area of my left temple. It stimulated that area of my brain so strongly that I put my hand (rt., of course) against my temple and said "uh oh". Then I began having a grand mal seizure seizure that lasted about 45 min. That's the time from the start on the train, through the passengers taking me out of the train and laying me on the platform, then the stretcher to the ambulance, into the ambulance up until the time the dr. injected me with muscle relaxers. (?) I was only aware of the start of the seizure.

 

That seizure was caused by the stress of looking someone in the eyes, so that would be a yes as far as stress goes, I guess.

 

I, of course can give you several examples of what I would consider a seizure caused by what I would consider a stressless environment.

_______________________________________________

 

I read your email this afternoon. Everything above the line is the reply that I started. It's now 12:12 a.m. Everything below the line is where I'm picking up to tell you what happened up to and after "take". The center part of my head, which I described above, really began to bother me in a way that is typical. As I began and continued to focus on that part of my brain, or head or whatever you want to call it, and to focus on my thoughts and the pressure or the feeling of the density of that area and the feeling of blood pulsing through it This feeling and the pressure that I felt increased and got so strong that I thought that I should lay down, which I did. Debbie and I were going to a play at 8 p,m.Wed. evening. I started the upper portion of this email Wed. afternoon. Debbie came home around 6 p.m. I got up and went into the living room to talk to her. While talking to her, I went over to look out the window.

 

Fortunately I put my hand on the frame of the window which goes across the middle of the window. The one that has the lock on it and houses the lower glass panel. I say fortunately, because I started to have a mild seizure. I was shaking, was aware of it, but was able to hold myself up enough, so that I could turn and lean backward and to the right so I could land and sit in my recliner, which is right there in front of the window.

 

I should have stayed home, because my head was really bothering me, but I didn't want Debbie to go alone. I knew she wanted to go, so I said I was okay and went in spite of the fact that she didn't want me to go and my I was thinking that I shouldn't go, because my head was bothering me. I probably shouldn't have. Well... fortuately we made it there and back. She told me that I had a mild (compared to my dramatic grand mals) seizure while we were watching the play . She was sitting next to me. I wasn't aware of that one.

 

I didn't really want to tell you this, but I can see that I need something along with the Lamictal. Please make it cheap!

 

Well, so much for writing a short email :-)

 

I'll see you soon,

 

Gary

 

(edited by epi_help - please don't post other people's emails or information. refer to terms of use for the site)

 

I was diagnosed with gran mal epilepsy (juvenile myoclonic) at age 13 and I know what it is to resent something you have no control over.

You may have epilepsy but epilepsy does not have to own you. It take at least a year to become stabilized on the right medication for seizure control but that does not eliminate that you won't randomly have a seizure in the future.

Before I was diagnosed with this neurological disorder, I knew exactly what field (career) I wanted to go after but with epilepsy ruled that out - but it opened me up to a new exciting possibility now that I'm in my mid-twenties. I now have a Bachelor's in Forensic Psychology and am pursuing the Master's program.

Epilepsy may be a part of my routine in taking pills but I've learned to accept it. There are times when I myself get angry for being afflicted with this disorder but I realize that there are others who have worse diseases and afflictions than me. 

There are even times that I forget I have it - like maybe it went away. That was until last year. The day after my college graduation, I had a gran mal seizure and didn't even know it had occured. I had what my nuerologist called as retrograde amnesia which followed with what I was told was a 'violent seizure'.

Seizures are scary because I use to be conscious during them and now I'm not.

Please know that you can still have a full life with friends and family who care deeply about you and know what you have. As long as you have a good outlook on epilepsy and are comfortable with the topic, so will everyone else be. 

 

 

 

good post.  what you over look is you are one of the few who are controlled by meds.  many are never controlled by meds.  those people never have a life that has no promis, future or fulfillment in. your just very lucky.  i am glad for you.

I have been there. However I was faced with something worse (was set up to be raped by girls I thought were friends at age 14 or 15, was raped), I was a zombie at first but I read a book (I know why the cadged bird sings), I realized that what i was doing to myself was worse than anthing, I had been victimized, but then I chose to be a victim, when I realized that I was in control, it gave me feeling of power. It was not easy, but I refused to let those people who victimized me win, nor did I let epilepsy win, I am now a survior, I know now that nothing can stop meI do still have seizures sometimes, I have lsot scary people, but I'm here, have 2 degrees and working on the third, I will never stop, as I have discoved a gift (to be a counselor) I find fulfillment in empowring people, as I learned to empower myself, don't count yourself out yet, you may be stronger than you know. Take it from someone who attempted to end her life and found purpose when it went wrong.

I didn't go thru all of the comments,but you should get on the chat site here,there are plenty of people there that will chat with you and help as much as they can.

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