I was diagnosed with epilepsy at age 3. When I was 5 years old, the doctors weened me off of meds and I lived a seizure free life until age 23. I had a tonic-clonic seizure after being awake for 72 hours during AIT in the Army in 1991. I  was prescribed Dilantin 300 mg, which seemed to control the seizures for a decent period of time. When I was assigned my permanent duty station, my neurologist decided to change me to Tegratol because he did not like the cosmetic effects of Dilantin. My seizures were minimally controlled; however, after giving birth to my daughter, my blood levels were all over the map and I continued having tonic-clonic seizures. The doctors tried me on Depakote, but I gained a lot of weight and ached from stiff joints. I don't remember what else I was put on until the doctor put me back on Dilantin. My seizures were controlled for several years, but the side effects posed several problems. My memory began deteriorating, and I was confused a lot. I was also tired all the time. I got out of Army in 1996. I started having seizures again, so the doctor increased my Dilantin to 400 mg. That seemed to help a little. In 2004, I experienced an out of body episode. I was so afraid of having a tonic-clonic seizure. I went to a neurologist and found out my Dilantin level was 0 even though I was taking the medicine without fail. I was diagnosed with partial seizures. I was put on Keppra, which did not work, so the doctor tried Lamictal.
In 2010, my seizures returned again. I was tried on Topomax, which did not work. Lamictal was increased to 400mg/day and Dilantin was added. I had an MRI that showed scarring in the left temporal lobe that wasn't seen before. I was admitted into an EMU and monitored for four days. I was told that I was suffering from psychogenic seizures and to seek psychiatric treatment. I was told that I had conversion disorder.  I definitely have epilepsy, but the episodes I had in the hospital looked to be nonepileptic psychogenic seizures. So, I don't know anymore. 

Over a span of 20+ years, I have lost several jobs, my home, and most recently my kids because my seizures aren't controlled. I am now living with my parents, can't drive, have no social life, and am receiving social security disability. I suffer from severe exhaustion, joint pain, weight gain, depression, memory problems, poor concentration, and I am having partial seizures almost daily. I finally have an appointment with the VA Neurology department, but it took forever to get it.

My quality of life sucks right now. To keep from going off the deep end, I focus on counting my blessings. I try to find one thing I am grateful for each day and wake up with a thankful spirit. I am grateful for this forum where I can share my story and know that I am not the only one suffering with epilepsy issues.

Feeling shitty today. I hate being dependent on others because I can't drive.

nobody enjoys it at least I haven't met one . grrrrr . If they say they do they are lying :( Enough said there lol

I have just been diagnosed but with what they don't know.  They have it down to partial onset but don't know the focal.  I quit my topomax which I was maxed out and the only medicaiton I have not been allergic to because my seizures were getting out of hand.  When I quit I didnt' have one for 2 weeks. miracle for me.  Until the other day and yesterday one during the day with the aura and prepared myself on the floor before I went into the seizure.  After going to bed I guess I went into another while I was asleep.  They are sending me to a epilelogist I guess.  I am scared.  I lost my job because of this, ADA would have a hay day with it but at the same time. I am a accountant and after a seizure, I am dumb for a couple of hours to a day or two.  Sometimes affecting my walk.  I also have cluster migraines that up until Last year were out of control and now this.  I hate this life.  I feel completely inadequate and everything has been taken from me.  I have people assuming that I am using drugs, ( I did at one time 10 years ago dabble some and now because of it).  It is  the only reason.  I have done everything and it is tearing my marriage apart and seperating me and what family I am speaking to.  I have no outreach and found this site and I feel so not alone.  If you have felt this way or know more about this site that could help me.  That would be great. 

Thannks for sharing.  You took the words out of my mouth...

I know, all to well, how each of you feel! I was diagnosed 9 years ago, at age 37. The diagnosis came after a gran  mal siezure in my bathroom in which I broke the bathtub with my head. I had a successful temporal lobectomy 6 years ago. Last year my insurance changed and I had to switch to generic meds because I couldn't afford the $4000 copay for 3 months. (This year it changed again, and my doctor fought the insurance company and my now copay is only $700 for brand- HA). I have been trying to find an assistance program to help with the cost, but no one will help because I have insurance.  Not only are the generics no longer effective, the side effects are horrible. The problem here is, after 6 years seizure free, I started having seizures again from the generics.  I now have someone driving me back and forth to work, 100 miles a day, and I have a child I'm raising alone this time through it. The first time, I had my husband to help, but he passed away 5 years ago. So, I am COMPLETELY at the mercy of someone else for everything, and I feel like I cannot  properly provide for my son.  I have actually considered leaving my job, and filing for disability. I have worked enough that the disability pay would be a little more than my current net pay, and my meds would be paid for. The down side? They would be generics, I would continue to have seizures, and I would never drive again.  Which is the lesser of 2 evils???  So, I hate my life also!!!

I understand where you are coming from... 

 When I child in grade school I was diagnosited with petite mal seizures....it is kind of a funny story my teachers all thought I was spacy and stupid but I was having seizures.  The way my family found this out is I always had to share food with my sister when we were younger which is hard for a kid.  We loved Mac and Cheese with hot dogs which we would count and make sure we had the same number of hot dogs and count the spoonfuls of mac....well my sister being my big sister saw me "space out" midspoonful and she ate the mac and cheese of the spoon.  Well I can back to a few seconds later and didn't realize what had happened so started scoping.  My mother stopped me and asked if I new what happened which of course I didn't...the next day I went to the doctor.  They did all these test which were really long and annoying.  I was put on depicote (don't know if I am spelling that right)  this made my tummy hurt.  So of course they checked my blood every six months which I hated but I was a good girl because my mom bribed me with candy.  I eventually grew out of them.

When I was a sophomore in college I can home to visit my mom and she needed help with a garage sell in the morning.  I went to bed and was fine.  I woke up in the morning to help my mom...I started giving someone change and I had a grand mal siezure.  My mother had never seen one and it was hard to see her baby turn blue because she wasn't breathing.  The ambulance came and the paramedics kept trying to wake me so I would go in and out of consciousness.  I use to work at a resturant they frequented so kept talking to me about it.  I woke up hours late confused and my mom wasn't there.  I guess since I was over 18 they wouldn't allow her in the room without my consent which is stupid.  I ended up losing my license which is hard on a young person.

I went to a neurologist named DR. Lucas...he is an amazing doctor if you live in the charleston, SC area I would give him a try.  So I was diagnosed with generalized seizures which is horrible because I can't have surgery to fix my brain.  I was put on Lamictal and Topamax which I had bad side effects that would wake me up at night because of the Topamax.  I was seizure free for 6 months and had my driver liscence reinstated which was wonderful....I was college student I liked to drink, stay up late, and stressed about school.  I missed a couple doses here and there and didn't have a problem.  Until one day I was driving back from a friends and I had a seizure which made my lock up on the gas pedal and I swerved and hit another vehicle.  I was going so fast that after I hit them and then a tree.  I was very lucky I only walked away with a scar on my foot.  But again my license was taken away, and new medicine was introduced.  I was now on lamictal and keppra which the side effects made me miss class so I came home a semster and went to a tech college.

Let me tell you something....losing your license at my age was hard because you feel like your loosing your freedom which you basically are.  It took me an extra year to finish college but I did it.  I went through depression still do...its in waves and you'll be depressed which you know is stupid.  I would get an answer wrong and cry it was ridiculous! 

I am now on Lamitical XR and Keppra XR which I have little to no side effects and I have been seizure free for 3.5 years.  I have a great support system...and because I'm "disable" it helped find a job.  I have heard people say that epilepsy doesn't define you...I don't believe that because your life will always revolve around it.  Think about it...every day do you think "did I take my pills" or "I really want to go out but I know it might cause lack of sleep which is a trigger".

I am not saying my life is wonderful I hate this disease and think it is not fair that I have it...

I have been having to deal with epilepsy since I was 16. I had a grand mal seizure in the shower of all places.

I have been on all kind of medications, in and out of work. I even had to get my license taken away by my

doctor for a year to have them mess around with different medications/dosages. I cannot explain the feeling of

having seizures Most of them I am either asleep or I just black out before I have them. I have not had any

though for some time. You cannot let seizures run your life. You have take the time to find the right doctors

that are willing to work with you to find what works. This takes some time so dont give up. I to was having

mini seizures back to back every day (this is when they took my license away.) I am now 37 and have not had

a seizure for about 8 years. I finally ended up with Depakote (1400) 750 when I wake up 750 when I go to

sleep. What I am getting at is that you can have a normal life. By the way I am now engaged also. Dont get

me wrong sometimes I do get depressed easily (side effects meds) but Now I have found out working out on a

regular basis helps balance out my moods. Remember you can have a life Dont Give Up! Hope this helps.

I'm been wondering how people feel lately.

Im having to have my brother type this for me bc I cant but I too suffer from epilepsy and unlike most people, have back to back mini seizures EVERY day of my life, that started sometime in the mid 90's and became an every day occurance in 2000 after having my only biological child.  Taking the time just to make a password for this website was an incredible task and I have to have 24 hour help.  I am considered extremely young to have these problems and suffered for YEARS trying to figure it out on my own before literally BEGGING to go to UCLA, where they finally were able to tell me what was wrong and that it is in NO WAY fixable, and medication BARELY helps and I feel like a TOTAL burden to my family.  BUT, I have accepted that Im NEVER going to be normal and have tried my best to learn to live with my problems.  Im sure that the majority of people on here understand what your head feels like when you have a seizure but think about having them every single day, then when you get a BAD one it lasts for up to three days.  Thats like PURE TORTURE! I am VERY lucky though...my husband, brother and 2 kids have tried to totally support me and come up with lots of ideas for help systems and quite frankly the UCLA Drs were AMAZED that I had this kind of support because not many are lucky like me.  The BEST thing you can do is depend on LOYAL friends and family and not be embaressed or ashamed of whats going on. Let people HELP if they want to for it also lets them LEARN about your epilepsy (believe me, some of my CLOSEST friends thought I was full of complete bs for YEARS and some even thought I was on drugs until they saw the videos from the hospital, as I had never allowed them to see it in person, and when I finally got my diagnosis, I felt confident) I am LIVING proof (well for today at least) that you can get by with even the WORST type of epilespy..please dont let it RUN you..YOU RUN THE EPILESPY as BEST as YOU CAN!!

I understand what you go through. You get really upset when people say, "I know exactly what you're going through." And all you're thinking is, how could you possibly understand what I'M going through. NO one understands what I'm going through. Even my Epilepsy makes me hate my life, it makes me depressed. I see people who get to live "Normal" happy lives and I'm stuck with all these rules. You think that no one understands but the truth is, MILLIONS understand everyday of their lives what you go through. You are not alone. I hate my life at times to, and I have Epilepsy.

Understood by many....never alone even when you think you are....my friend.

i used to hate my life too. until i found that, if it hadn't been for my epilepsy, i most likely wouldn't have had the experiences that i've had throughout the years since i'd been diagnosed or met the people that i now know today. it used to be all doom and gloom for me, back in the first few years after i was diagnosed with it. i was put on multiple meds, that affected my academic life and also just pretty much life in general. it sucked alot. but then i became friends with a lady who owns some horses, and through the horses, i found i was happy again. able to forget about my epilepsy and be truly happy. i write stories and poems, i draw, i paint some. those all give me release. they let me forget about having to deal with this sh*t in my life. now i can be so happy, and then sometimes i can be so catastrophically doom and gloom all over again. epilepsy has affected my academic life--high school and junior high. i graduated from high school 2 years later than i should have, because i fell into depression the first time, and the second time, i wasn't able to pass some mandatory tests that i had to take to graduate. but i did. now i'm in college and doing well. everything's clicking. mostly. i found, that you just have to find your passion in life (painting, drawing, writing, or in my case, horses), and throw yourself into it. there is light at the end of the tunnel. there was for me, and there will be for you too.