3momark's Blog

Suffering Epilepsy

I was Diagonsed with Epilepsy in 2000, I've tried almost all the diffrent meds out there. I have a VNS implant ,yet still suffer seizures. I even had one Dr tell me I could Drive , But NOT shower alone. sometimes I feel alone in my world of muscle pain and limits. Anyone else out there who I can talk with?

KC from NV

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carrie022

I was diagnosed with absent seizures in 1994 ant the age of 19. I was driving home from work and blacked out and woke up in time to see the rear end of the car I couldn't stop from crashing into. ( weird way to find out that you have something I know) Luckly my primary doctor sent me to a wonderful nuerogolist who got me on the right meds and my seizures are controled. I can drive  but if I have to go places that are far from home ( which here everything is ) my mom or husband takes me. It's not that I mind being driven around like a VIP. Yeah right! But the indepence thing and lack of it sucks. I know what your going through so believe you are not alone and you will find on this site many who undertand your blight .

                                                     Lots of luck, Carrie

lgloeckner

I have had epilepsy since I was two, from a high fever, and continued to have partial complex seizures. I have been on all the meds, they finally found a mix that seems to help that I have been on for several years.  Just about a year ago had a VNS implanted, still slowly getting it turned up.  I still have activity about every other week or so. Once in a blue moon I still have granmal seizures.  I have had two periods where I was able to drive, and then started having activity again.  The hardest thing for me  is I have scar-tissue on both sides of my brain leading to short term memory.  I am in my second year of college and it has been challenging with exams etc. 

jiesi

my best friend started having really bad seizures about 2 years ago. they cause her pain, it feels like her body is ripping apart and on fire. she needs earplugs and noise reducing headphones and still the slightist noise sets her off. none of her docters know why and its in the tempral lobe. dispite all this she got married a few days ago. it was verry nice wedding and party dispire the few seizrures. its hard to see her like that expecally since doctors tell her weird answers like its just migrains becuse shes over weight and shes not, or i dont know why your likr this.

best of luck with everything and dont feel alone

mcain6

Epilepsy has been my life. I am 44 now and it started at 15 years old. No obvious reason for it starting and I have been at all levels with it. In an out of jobs, not being able to have a driver's license, and trying to get help from SSI disability. In 1999 after months of testing, it was decided that I was a good candidate brain surgery. (Left front temporal lobe) After the surgery I was seizure free for three or four months and then they started returning. However, at a far less number than pre surgery. At the time I was married and had a young daughter and life was good. A year or two after the seizures started happening more often my life started falling apart. First the job, because I was required to drive. Next my then wife, I guess gave up on me because she had to drive me around and support us then. She surprised me one day telling me her attorney will be calling me about a divorce she had been planning for a while and I had no clue of. It took about seven years to rebuild everything... believe it or not I'm glad it happened this way now because I found the love of my life and my seizures are under control with the right meds. The only problem is that the SSI decided all of the sudden that because I was able to work some here and there that I was not eligible for the disability checks I was able to get for four years and are requiring me to repay three and a half years of the disability checks that I got from them which comes to the sum of over $40,000 dollars. So much for me every having any money! Caution to all trying to get help from the SSI disability, they will stab you in the back some day!! Good luck to all fighting epilepsy. My advice to you is ONE DAY AT A TIME. Respect those who stay with you and want to help you. Don't let pride cause you more problems... got enough problems already.

Best of luck to all of you in these shoes,  Mike

nano sadek

i have a child who is 7 years old was diagnosed with epilepsy from 2 months all my life changed,the medicine was good for him to stop seizers but in the other side he changed alot in school due to medicine side effects, he was an excellent student he is now less than good, in addition to mood change and being nervious, he is not the same person:( all of this affecting me

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