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Newly Diagnosed and Feeling Alone/Discouraged
Mon, 11/16/2015 - 14:08Hi, I am a 19 year old girl. I just started college and was diagnosed with JME in February. Since then I have had 3 tonic-clonic seizures. My last one was on October 24th, and since I live in Utah I have to be seizure free for three months until I can drive again. I am living at home during my first year of college. Since I was diagnosed I have struggled to talk to my family about it. It is really hard having to rely on my family for everything because I have been extremely independent my whole life. My mom has now put a baby monitor in my room so that she can listen to me if I have a seizure (she works from home), because of this I feel like I have no privacy anymore. Along with that my family will not let me study in my room at my desk anymore. I have to study upstairs. Usually I like to watch shows on netflix when I am getting ready in the morning or when I go to bed as background noise - it helps me sleep sometimes. I can't do this anymore because it is disruptive to my mom and sister who have the baby monitor receivers in their rooms. I have to rely on them to drive me to work and any other place I need to go. Often times though they are unavailable to take me places so that I cannot get the things that I need. I'm really struggling with adjusting to all of this and I'm feeling guilty for making my family drive me places. I don't know what to do. I don't feel like myself anymore.
I'm sorry but I believe your
Submitted by morrigan067@gmail.com on Fri, 2017-06-30 - 18:34
I'm sorry but I believe your Neurologist misdiagnosed you. Although you may have a history of JME ( Juvenile Myoclonic Epilepsy ) in your family or genetically.. because you were diagnosed at the age of 19 it's actually called "Adult Onset Epilepsy". Essentially it's the same disorder but diagnosis at a different age ( possibly for different reasons ). I myself have had JME since I was 14 and was diagnosed with Grand Mal's when I was 18. I completely understand what your going through.