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free or under control

Sat, 01/26/2019 - 12:33
Yesterday I went to the doctor for a 3 month checkup and as usual I got the thumbs up from the doctor. Nothing new with the medication I am taking and I am doing well as far as my seizures are concerned. You would think coming home I would be happy with all this. The thing is, I had a thought on the way home, that I have had many time in the 20+ yrs since I have been intertwined with this disorder. That thought was this. I take a pill everyday, twice a day and it controls my seizures well. I have not had a Grand-Mal seizure since being on this medication and it is the first medication to control the sensory seizures I have in my hands and face. They still happen under extreme stress situations, but nothing can be done about that, the brain is what it is. I very much enjoy having my seizures under control, but when I have people talk to me and say that I am seizure "free" it is laughable. It is a control situation. People with other brain based disorders, disorders such as schizophrenia or Delusional disorders. These are also kept under control with medication, no one with these disorders are ever cured or free from their afflictions. They either go through life on medication, or they don't. Those are the choices. For some people with seizures they can have surgery to stop the seizures. That is not an options for me. The cause of my seizures happens on both sides of my brain so surgery is not an option. Medication is all there is to stop them. So I sit in the that same lonely life boat with the all those other people whose brain has become, not so much an enemy but more like a ghost figure that haunts then. Someone that disappears for length of time just to reappear with no notice and mess up everything. The choice isn't hard, take the medication, everyday and have everything under control or go a couple of days and be in the floor and probably in the hospital. Not much of a choice. So to to have people tell me I am "free" no I am tied to small brown bottle filled with even smaller yellow pills. These things control everything. You know it is bad when it has become part of my husband's routine when we go to bed every night and one of the last things he asks is "did you take your meds." I have a reminder on my phone, and everything, but that is not enough, he still has to ask. Sometimes I want so much to scream/cry/run away it just gets to be too much. I know I have to take the pills but sometimes the weight of those pills seems so overwhelming. So am I free of my seizures, no they are "under control."


Thank you for sharing this.

Submitted by epihelp on Sat, 2019-01-26 - 16:38
Thank you for sharing this. So many of us feel this.. The words 'seizure free' and "under control' mean so much more .... 

Yes!  Seizure-free vs under

Submitted by birdman on Sat, 2019-01-26 - 20:20
Yes!  Seizure-free vs under control;  that's a great way of putting it.  Even though my seizures are not "under control" I have learned to live with them and I recover from them much more quickly than I did when I was a child.  I was so confused then about how it was possible for me to be awake yet not aware.  Now with seizures that are less obvious to others I too feel hurt that others have an "impaired awareness" of how much epilepsy can impact a person beyond the seizures.  I will be have surgery for my epilepsy in the upcoming months.  Although I have some fears and reservations I almost look forward to this as it will raise the awareness among others that they don't know what all we have to deal with.  I'm hoping that my surgery will open the door to speak to others who are willing to listen to what we go through with epilepsy.  It's good you have this site to share with others about your predicament.   

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