"Feeling of being passed down by people".....Temporal Lobe Epilepsy?

[momof3boys]

Since I was alittle girl, before a seizure would start, I always felt like I was being passed down by people. It was a weird feeling. There would be times I would get that funny feeling that I didnt feel right, then Id get this vision stuck in my head of this long line of people, taking me, and passing me down, one by one.... thats all I recall prior to the seizure starting. Once I came to, my mom said I would either have a complex partial seizure or a grand mal seizure. I just wondered if this was something that was normal or common with people who are dx'd with Temporal Lobe Epilepsy?

I havnt had that feeling for years now. Gosh I was probably in my teens.....

But I was thinking back and remembering what it was I was feeling or doing prior to the seizure starting.

Now when I have a seizure, I have simple partial seizures. Im consious of whats going on prior, during and after a seizure. To be honest, Id rather not have to feel what is going on, and even be aware. The feeling of something "bad" thats going to happen... along with the heart racing, sudden sense of fear or sadness, the feeling in my stomach like i want to throw up, and the pins and needles attacking my body... then comes to stiffness and jerking movements. Just going through that, and being able to hear what others are telling you, and you cant do anything til the stupid seizure is over, is just something I hate. I literally hate it. Im so afraid my neuro is going to suggest trying to get off of the keppra xr next month when I see him. I dont want to go through those again. Thats the last thing I want. The Keppra xr has been holding me over good. I just pray he leaves me on this and doesnt want to try again to come off the medication.

 

[Silat]

As far as I understand, TLE can be quite a trip at times, depending on how it manifests. I don't think that's too unusual.

Alice in Wonderland was written by Lewis Carroll about his seizures...

 

[momof3boys]

Thanks Silat for the reply. I just have always wondered if what I was feeling all those years was something normal when it comes to Temporal Lobe Epilepsy. I remember other things when I was just really little, but Its not all there.... I'll have to ask my mom to see what she recalls me telling her.

 

[MuayThaiFighter]

You described my Aura's to a T. I hate the feeling before a bad cluster, my emotion goes haywire. The feeling of all the worst emotion being amplified. Heart races, you panic because you know what is about to happen. Things might blur out, things just get bizarre.


"and being able to hear what others are telling you, and you cant do anything til the stupid seizure is over, is just something I hate. I literally hate it." Exactly, I will never get used to that. No one should have to deal with it.

 

[momof3boys]

Yes, I agree MuayThaiFighter! 100%! Thats why Im not looking forward to my neuro appointment on 8/30. Last time I saw him was May 2011, and it was then that he agree'd to keep me on 3000mgs of Keppra XR, but he did say he wanted to see how I would do on the Keppra XR alone, and look into taking me off again next year. Just the thought of going through all those feelings, prior and during the seizure makes me sick to my stomach to think about. Like I told my mom, I know its worse to have complex partial or grand mal seizures, but at least you are not consious of whats going on during them, where as simple partial seizures you are aware of whats going on and can feel everything!

 

[MuayThaiFighter]

When I had the bad drug interaction when I first posted on this forum, I was terrified. Those moments when your seizure threshold is lowered, or whatever is controlling your emotion stops working. Nothing can describe how painful it is mentally. I recall just not wanting to be awake until I could get a grip on my thinking. No one around can understand, which makes it that much more frustrating. Being held hostage by your brain is what I sum it up as. No one else but the people on this forum no how scary it is, even to change a small level of medication. I would rather run a marathon on hot sand. Gah, the entire song and dance of this problem wears at me, and all you want to do is let your doctors/friends/family feel what you feel. Just so they can relate. Sorry for the rant.

 

[momof3boys]

I see it the same way. I remember during my VEEG my mom was with me, and it was after my first seizure. Now for years, prior to having simple partial seizures, i was having complex partial or grand mal seizures. I was no aware of what was going on during the seizures, so when I was admited for the VEEG, my mom and I expected to have those kind of seizures. Little did we both know that the seizures would be totally different. I was well controlled with keppra and carbatrol for over 12 years of my life. The only time I had a seizure was due to lack of sleep after each baby was born. But when that first seizure happened during the VEEG and I was aware of what was going on, it shocked my mom and I both. I could hear the nurses ask me questions, I can could hear my mom, and I could see what she was doing, how she was reacting, etc. It was so weird, but so scary at the same time. Not knowing what in the world was going on, what this stuff was? Then to find out the next day when my dr comes into the room to give us an update, that these are seizures that are not as bad as complex partial or grand mal seizures, it made my mom so darn happy! There was talk that he wanted me to get off the carbatrol and put me only back on the Keppra. That alone, after taking at least two medications at a time my whole life, scared the crap out of me! I thought, OMG... this guy wants to me back on one medication and Im going to keep having these seizures! What the hell am I going to do? I told my mom its the worst feeling ever to experience a seizure like this. To know whats going on, and the feelings you get, and you cant control the seizure at all. its like something is taking over your body and there is nothing you can do, but wait til its over. Its the most horriable feeling in the world. I was scared that I was going to be released and keep having the seizures. I was so scared. My mom though, kept telling me that maybe this dr is right and that all these years, with the control of my two seizure medications, my brain healed and i no longer needed the medications? I remember looking at her, thinking are you freaking nuts woman? LOL. Here I was having these seizures where Im freaking awake during every single second, and I was trying to prepare myself for the next one to come, and yet at the same time, i was scared to death of the feeling it would cause again. It was literally freaking me out! To this day, my mom still believes one day I will get off the medication. Which I hope she is right. But for now, Im taking things one day at a time.

I do agree, no one else but people here, or anyone who has seizures, really knows what we go through.