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I feel like I'm drowning and there's just no help.
Thu, 01/01/2015 - 13:40I was born with epilepsy. It's generalized, so my whole brain decided to get in on the party I guess. I can't drive so I rarely leave the house. My seizures come with no warning, I just wake up bumped, bruised, nauseous.... I have petite-mal seizures on a constant basis, like every few minutes my mind blanks for a second, sometimes a few seconds. I have been on every Medication available for me and the side effects have been awful. If I didn't end up in the hospital, I end up just like I am now- a zombie. There is not enough caffine in the world. I am grateful for all the good things I have in life, husband and kids, but every single day is an awful struggle! I feel like there is just no help! I would love to just take a walk, do you know how much it hurts to have a seizure on a concrete sidewalk? I do. There is so much I want to do, I have even tried to do things but many things don't work because of transportation. Everyday I feel like I run into a brick wall. I would do anything to throw out the meds! I would love to ride my bike, by myself, not wait for someone else to go with me. I can't take a bath without someone checking on me and sitting outside the door. My life is epilepsy and I am sick of it. I don't want to be tired any more.....I dream of energy! I would also love to have a memory of my life, that is completely gone though.
I know exactly how you feel
Submitted by Anonymous on Thu, 2015-01-01 - 14:59
I know exactly how you feel BUT i'm not speaking it for myself anymore. I felt as if i lived in a bubble for the past 14 years. Just here. No life of my own. I rarely leave the house. I know what concrete feels like. I want to take baths too. I one day woke up (long time ago when grand-mals had control) with my brother (do you hear me) my brother had to clean me up after a grand mal in which i did the number 2 in the shower all over myself. I want to throw out meds but if GOD allows them to help me then so be it. There was no med i have not taken to stop my seizures until the past 6 months. It always seemed as if i would get close to a six months (maybe 4 or so and it would start all over again). After a seizure, at of all places (that same brother's wedding this past June) my neurologist wiped the slate clean and we started again. I am now on Vimpat, Aptiom and Trokendi xr (related to topamax) and like i said i have not had a seizure for 6 months. The info was faxed to dept of motor vehicles from my neurologist and another center (The Shepard Center which gave me excellent driving skills but got some cognitive issues) but haven't heard anything back yet. Just like you, I have so much i want to do. I continue to ask GOD to open this door for me. Talk to your neuro md about those three meds. You never know how or when GOD opens doors for you too. grace and peace.