What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.
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Excellent. THX.
My youngest son has has seizures started right after birth. scary yes thanks for sharing
I was 3 mos. old when my seizures started at a frequent 3 to 4 grand mal seizures a day. My doctor didn't believe my mother and until I had a very severe one that eliminated my reflexes for several hours! I was seven at the time and had no help until then. It was then I started going to Boston Children's quite often and put on chewable Dilantin and Phenobarbital. The drs. kept increasing my medicine till I could no longer stay alert and awake at school...it was awful. I'm 61 today and take no medication...still have seizures, but medication no longer helped. It's sad I didn't get the help I needed. I never could drive a car. Drs strongly suggested I not marry and definitely no children. I married when I was 19 and have 3 beautiful children and 5 grandchildren!!
It been good to hear that you've been able to get some enjoyment back in your life, epilepsy can be very isolating.
Hi, I'm 55yrs. old and I have had seizures since I was born , when I was young nobody would allow their children to play with me and when the Dilantin quit working they put me on keppra and depakote, I have lost my license well last time was over a year until I could get them back, I have grand mal and could die without my medicine, I was in nursing and now on disability due to my seizures
So glad surgery healed your epilepsy. Like you, I have had epilepsy since the age of eight, but it cannot be healed with surgery. However, 15 years ago I met a lady whose husband had been healed of his epilepsy through the power of prayer
I then got to know The Lord and in 2012 the Holy Spirit promised I would be healed of my epilepsy. It hasn't happened yet and the longest I have been seizure free is five weeks. I usually have seizures every 10 days, But try not to let my epilepsy rule my life.
My husband and sons cope very well with it and we all see it as a nuisance. However, I know The Lord keeps His promises and am patiently waiting to be healed.
Bye
Helen
I had epilepsy for 33 years. I say had because on June 11, 2005 exploratory surgery found a petite blood clot in a small vein within the right side of my brain. With the use of the then new tool Laser Beam the blood clot was removed. With its removal my problem was also removed. Since that time I have done many things to aid others who have not yet experienced the good feelings of cure to their problem.
My story is very similar to yours. I started having seizures at 22 & I'm now 31. This has and is a very rough journey for me. I see my epileptologist every 6 months and my seizures have yet to be controlled. I am up to 14 pills/day & unable to drive. I also cannot work and I've been denied SSI three times. I'm happy that you were able to get back on your feet. Hopefully I will be able to soon as well.
Did you recieve my post.
I was diagnoed 38 years ago with epilepsy. My seizures are not controlled but are mild now compared to the tonic/clonic seizures I had when I was younger. I had to change my major many times going through college and ended up with going for a major in psychobiology. I wanted to figure out how the brain and nervous system actually function. I know a lot about epilepsy now. I have taught doctors and specialists about my findings. I have found out things about epilepsy that you cannot even find out in a Phd level neuroscience book. I was explaining epilepsy to a young teenage girl that had epilepsy and knowing psychology I could understand the look on her face that I was finally someone that understood what she was going through. It was that day that I decided to stop being ashamed of my condition and to start teaching others about what epilepsy actually is and explain to them first aid for epilepsy the do's and dont's and to teach them as much as I can about epilepsy. I have been doing it now for over 7 years. My goal is to try to remove the stigma that is associated with the condition. Most people have no idea what it is and what to do if they see someone having a seizure or how many different types of seizures there are. I have had atleast six or seven different types myself. I'm sharing what I know to as many as possible. I just wish more people with epilepsy would so people can understand it. I'm trying to crush all the myths about epilepsy too. When people understand then their fear will be gone. As of this time I believe there are over 40 different types of seizures. People may disagree with me but I have facts to back it up.