When does it feel "real"?

[RockerMama]

Did it take a while to sink in that you/someone you love has epilepsy? Like to even refer to it as epilepsy feels weird.

We were bounced around so much in a short time, and heard a lot of "Nope, she is lying" a lot. Now my daughter has been on the 3 pills daily for a month, and is symptom free, short of the one time when we missed a dose a couple days in a row and she saw sparkles again. Once we started back up, they stopped, and she has had nothing.

I know it isn't a coincidence. The medicine is working, and it is working because these were obviously seizures. It is now starting to sink in, and it sucks. But it still feels weird. I think maybe since her seizures weren't visible to anyone else, if that makes it a little harder to feel real. Plus, it was a relatively short time before she dropped the bomb shell of these things she experiences(which she thought were all typical things) and diagnosis. It felt like forever, but it was only a few months.

 

[acpollard2010]

im glad things are working for her not always easy but here for you guys it is that is such a relief for you.

 

[chop456]

I completely understand where you are coming from. We went from a visit to the ER on a Wednesday afternoon to hearing "your daughter has epilepsy" on Friday afternoon. Sometimes I think "thank goodness" we were able to get a diagnosis so quickly and other times I think - wow that was so fast I did not have time to even have the thought sink it. 41 days into diagnosis I am able to say the words seizure and epilepsy and know I am referring to my daughter, but it still seems foreign. With no family history, we did not have anything to go on - just doctor visits, this forum and 2 very kind teachers in my School District who were willing to share their experience with me.

I am happy the medications are working for your daughter. We are still upping to dose, so there has not been much of a change ... yet. We are hopeful.

 

[qtowngirl]

Did it take a while to sink in that you/someone you love has epilepsy? Like to even refer to it as epilepsy feels weird.

To be honest it took years. And years. Kept saying to myself over and over, "I have epilepsy I have epilepsy I have epilepsy." And it still wouldn't sink in - sounded so foreign. And so scary. But, after long enough (and a seizure/car accident), it finally started to hit home. Everyone accepts it in their own time and it becomes a part of who you are, though it can be hell, it really does become a regular life thing.
The worst for me was hearing the word or thinking to myself 'epileptic.'
I will never accept that, but to say I have epilepsy has sunk in. I've read a few members say they can't stand that word either, so maybe avoid it in your situation too if it helps a bit. Nasty word.
Best of luck with your daughter...

 

[Crash]

To be honest it took years. And years. Kept saying to myself over and over, "I have epilepsy I have epilepsy I have epilepsy." And it still wouldn't sink in - sounded so foreign. And so scary. But, after long enough (and a seizure/car accident), it finally started to hit home. Everyone accepts it in their own time and it becomes a part of who you are, though it can be hell, it really does become a regular life thing.
The worst for me was hearing the word or thinking to myself 'epileptic.'
I will never accept that, but to say I have epilepsy has sunk in. I've read a few members say they can't stand that word either, so maybe avoid it in your situation too if it helps a bit. Nasty word.
Best of luck with your daughter...

I rekon personally it took a good decade to sink in and get a handle on it,qtowngirl sums it up perfectly,the saying "i have epilepsy,i have epilepsy,i have epilepsy"But ive had it for twenty odd years now i think.So perhaps that effing voice is getting harder to hear.

 

[donnajane]

For us we would love for anyone to be able to let us know what is happening with our little man. I am at the stage where we would love to be told he has Epilepsy instead of it appears he is having epileptic events. But I am also now wondering if he has something else which is causing his seizures and other conditions. He may have Epilepsy as well who knows. I know it is such a long process and his age makes it harder to work out whats going on. I am just worried that they may be missing something, which I know both his Nureo and Paed have also said they are worried about that is why he is having an MRI and booked in to see a metabolic specialist. Words re his diagnosis being put forward as to what it may end up being are Cerebal Palsy, Migraine, Epilepsy and Metabolic disorder. So I can't wait until the day I have a diagnosis to accept as I can't change what my sons condition is and they are unable to offer him any treatment until they have an idea of what is happening.