Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
Hey everyone. (Sorry in advance that this is so long)
I just want to say that over the many years that I have been coming on this group, just reading about other people's experiences and asking for advise when im not sure... This group is a great help. & Thank you
On to my questions though......
I am curious how others living with Epilepsy feel.
Do you constantly think about it?
Do you feel like people just don't get it? Like no matter how many times you explain things to people or tell them what kinds of symptoms it gives you. All the tests... that they just don't grasp the seriousness of it all?
I do.
I don't have a reason for my epilepsy and all my tests always come back showing nothing. EEG's have shown some activity but not epileptic discharges. Yet they keep doing test after test.
If you are kinda in the same boat as me, in not having an answer to the cause of your epilepsy. Or doctors never really having any answers for you (for example I went to the hospital the other night because I couldn't wait for the doctors office and I've been having light headed spells for a week.... finally saw the doctor and he said hmm I don't know.) .
I feel like I can't not wonder if there is something more serious (not that it isn't serious, since I have Grand-mals in my sleep), but that there is something more serious that they just haven't found yet.
I feel like I am always waiting for the other shoe to drop.
After almost 10 years of having epilepsy.... it still scared the living crap out of me.
Please tell me I am not alone in thinking this way.
Do you always have it on your mind to?
I just want to say that over the many years that I have been coming on this group, just reading about other people's experiences and asking for advise when im not sure... This group is a great help. & Thank you
On to my questions though......
I am curious how others living with Epilepsy feel.
Do you constantly think about it?
Do you feel like people just don't get it? Like no matter how many times you explain things to people or tell them what kinds of symptoms it gives you. All the tests... that they just don't grasp the seriousness of it all?
I do.
I don't have a reason for my epilepsy and all my tests always come back showing nothing. EEG's have shown some activity but not epileptic discharges. Yet they keep doing test after test.
If you are kinda in the same boat as me, in not having an answer to the cause of your epilepsy. Or doctors never really having any answers for you (for example I went to the hospital the other night because I couldn't wait for the doctors office and I've been having light headed spells for a week.... finally saw the doctor and he said hmm I don't know.) .
I feel like I can't not wonder if there is something more serious (not that it isn't serious, since I have Grand-mals in my sleep), but that there is something more serious that they just haven't found yet.
I feel like I am always waiting for the other shoe to drop.
After almost 10 years of having epilepsy.... it still scared the living crap out of me.
Please tell me I am not alone in thinking this way.
Do you always have it on your mind to?
I think most people I've told "get it" as much as they can, but doctors sure don't! There's no reason for mine and they can't tell me what the triggers are. All my tests came back normal except for the EEG which showed a shadow of activity. I've started acupuncture, essential oils, eating like a hippie, little to no alcohol, and now on a search for a therapist.
Will I have a stroke? Will this cause brain damage? I feel like I'm one seizure away from losing my life completely. If I can't drive, I can't work, and if I can't work, I can't pay my bills or continue to live with my wonderful boyfriend who I love dearly. I'll be alone and homeless. Being just one moment away from the worst case scenario isn't a good way to live. And I don't want to live like this.
No, AOKBC, you are not alone. And I know I'm not either, but it's still scary as hell living on the edge like this.
I guess we just need to know that we have all of these people here that are going through the same stuff.
It's a battle though for sure.