Can seizures just go away? Or am I too optimistic?

[BrandiBrat]

After suffering a head trauma last year and being diagnosed with E, my seizures have never given me a break of longer than 3-4 days. All of my EEG's have been positive, and my last ambulatory EEG in April showed clusters nocturnally, with a focus being in my mesial posterior right temporal lobe. Multiple different meds have been tried with very little relief. My neurologist transferred my case to a surgeon to explore the options of surgery and last week I did a 6 day Video EEG.

I was so relaxed and stress-free in the hospital that even though my EEG showed abnormal activity, I didn't have any complex partials. I felt great in there! lol It was like a mini-vacation, away from work, kids, and the hustle and bustle of everyday life. My epileptologist noted a couple small seizures in my sleep, but not enough to give him the info he needed. I was taken off Topamax and Depakote. Coming home, I still feel great and haven't had a seizure yet. This is a record for me.

My question is: Is it possible that this now 9 days of being seizure-free is the beginning of something awesome? I turned my epileptologist down when he wanted to put me on Zonagran upon discharge. I mean, if it's going this well, why take meds? I've never gone this long and it feels great to be clear-headed again. BUT....am I just being too optimistic?

Is it possible to have E after a head injury and have seizures for a year and then the brain "fix" itself? Or, am I being overly optimistic and I'm going to end up on the road to disaster, after all of my meds are completely out of my system? I've been med-free for 6 days and I'd like to think I'm cured, or something.

What do you think? Am I fixed or being overly optimistic?

 

[Chaz1]

I sure cant answer this but this girl wishes u 'fixed' SURE DO....

 

[Oreocookie3]

I really don't know. I've been diagnosed with complex partial epilepsy...I have seizures where I'm not able to speak and I stare off into space. I've had them while driving and I would suddenly get lost and not know where I am.. I'd have something like global amnesia. I will not know how to make a transaction with a debit card at the machine when I have one of these seizures... I don't know the date or even the year sometimes when asked.. the doc said that it is all caused by this epilepsy.

 

[Nakamova]

It would be pretty unusual for the brain to fix itself. Once those horses have bolted the barn, it's tough to round them up and get them back inside... But never say never; epilepsy is weird and unpredictable.

Maybe your meds were making things worse -- in some people they can actually cause seizures -- so being off them is helping? Whatever the cause, I hope your med-free, seizure-free "grace period" lasts forever.

 

[sassi]

If they do disappear then that's wonderful! I don't know that they would because I myself am too scared to cross that bridge but that would be so incredible. I really hope it stays that way. 6 days is a long time... I hope it keeps up and you go forever.

 

[BrandiBrat]

Thanks, I guess I'll just play it by ear and see how it goes. It feels like my threshold is a lot higher being off the meds, which is strange. Nak, I'll look into that possibility. Before I was put on meds, I would have a seizure once a week or so and then after being medicated I would have them every couple of days. I asked my doctor about that and he says no but he's a doctor, it's what he's supposed to say lol. I can say one thing for sure...the detox off the meds is horrible.

 

[Sparkles]

Brandi, I sure hope that you remain seizure free while also med free! Fingers crossed.

 

[BrandiBrat]

Me too, it would be great! I'm just nervous, is all. I tend to be overly optimistic a lot of the time but I really want to stay on this pink cloud as long as I can! If it doesn't work, I can say I tried it. I like the idea of my brain fixing itself, but I guess that's just a fantasy. One that we all share, I am certain.

 

[Sparkles]

I share that for sure. My seizures are not as frequent as most here and so when I go weeks and even months without I think this is it, either, "I knew it, they were wrong and I don't have epilepsy!" Or, "This is it, some kind or spontaneous remission or cure!" I am also the queen of denial and lived that way for quite a while with this thing! It served its purpose for awhile... Who knows? Stranger things have happened. Optimism is not a bad thing!

 

[Cint]

Me too, it would be great! I'm just nervous, is all. I tend to be overly optimistic a lot of the time but I really want to stay on this pink cloud as long as I can! If it doesn't work, I can say I tried it. I like the idea of my brain fixing itself, but I guess that's just a fantasy. One that we all share, I am certain.

Don't we all! But actually, Brandi, there is a book out there about a brain that fixes itself, kinda like what you're talking about. It's title is, "The Brain That Changes Itself" by Norman Doidge. It's about the power of positive thinking and what we can do for ourselves.

You can do it!

 

[sassi]

I share that for sure. My seizures are not as frequent as most here and so when I go weeks and even months without I think this is it, either, "I knew it, they were wrong and I don't have epilepsy!" Or, "This is it, some kind or spontaneous remission or cure!" I am also the queen of denial and lived that way for quite a while with this thing! It served its purpose for awhile... Who knows? Stranger things have happened. Optimism is not a bad thing!

I feel like this describes me to a T right now! Although it didn't take me very long to get to the point where I was thinking to myself "I'm sure they were wrong, I haven't had anything happen" even after I woke up confused from a nap, I just ignored it. I'll never do that again.

Honestly, I love your optimism and I think it's infectious so I'll just keep being optimistic today. How's the detox coming for you? I've never detoxed off of one of these medications so I can only imagine what it feels like, just the word makes me want to cringe a little; is it bad or is it nothing really at all?

 

[BrandiBrat]

Thanks, Cint! I'll look for it on Amazon and get a copy. I like the idea, even if it is somewhat naive on my part. You are right, positive thinking can go a long way! I'm on day 10 without any complex partials...a record!

Sparkles, you and me both!! Even though my eeg's have always been positive there's always been a part of me that thinks this is all a hoax or a case of bad diagnosing, or like now, temporary. lol
Denial is great, isn't it?? haha

 

[BrandiBrat]

Sassi That's my biggest fear is that I'll be so optimistic I'll ignore things and then end up worse off or with a threshold as low as when I was first diagnosed. But, I'm going for it... like Nak said, epilepsy is weird and one never knows!! Here's to positive thinking!!

The detox is horrible because it was done cold turkey in the hospital and I was almost maxed on the dosage for Topamax. My Depakote level was fairly low so I don't think that was hard to come off of, but the Topamax suuuuuuucks! I was sick to my stomach for a few days, very nauseous. Also, my skin felt like it was on fire. My arms itch really bad and tingle. I still feel like I'm really nervous, like my fight or flight response is in hyper-mode. But, at the same time I'm really sleepy like I could sleep all day. The headaches are still strong and I have hot/cold flashes. I've been off for a week now (the Dr tapered my dose for 2 days before cold turkey) and I still feel like my body is missing it. Cognitively, I feel out of the haze. I failed several of the neurological tests upon entry into the hospital (the finger to nose to Dr's finger, back to nose - I can never understand that one. And, I couldn't remember what month it was. I said April, then Sept and then remembered it was August, or understand how to do the heel/toe walk), but I would pass them now I believe. I understand now why Topamax has the nickname of "Dopamax" because I think my IQ has gone up in the last week lol!