Back again

[cjole]

Hi everyone. I have been lurking about again for quite a while, and have decided to come back. I have been having problems for quite awhile, and just am seeking some answers to questions I don't even know where to begin to ask. I had my last seizure in Feb. I haven't had any since then that I have lost consiousness. But, I began realizing that some very strange things were going on. Things that I have experienced all of my life, and just took as normal. However, after my diagnosis, and then the following years, I began to look at things differently. I tried to explain to my friend what was happening, and she kept trying to tell me that I was just noticing every little thing, and freaking myself out. Which, actually, was true. Everything different that I felt, I was sure was some kind of seizure. Well, finally, these particular feelings that I have had for as long back as I can remember, began to bother me. I said something to my neuro, and they also thought that it could be that I was kinda "imagining" them. It's a feeling I can't even begin to put into words, but to me it was just a "normal" part of life. Anyway, after my continuing complaints, my neuro decided to do a 3 day EEG. Just to see. I was worried cuz sometimes it happens everyday, then I may go for weeks or months with out noticing. Well, I had two of the "episodes" during the 3 days. And, as it turns out, these "feelings" ARE some kind of seizure activity. I haven't as yet had a followup with my neuro, have one scheduled in a couple of days. But I am getting pretty scared. Every little "feeling" that I have, I wonder if it's that. My eyes kinda "jiggle" in my head, I get twitches in my arms and legs. All sorts of things, and it makes me wonder if now I am just making something out of nothing or if these feelings too could be some kind of seizure activity. Anyway, as it turns out, I probably have had some sort of seizures all of my life, and never really ever knew. It was just normal to me. I guess I am just confused, scared, everything at once. My neuro did say something to the effect that all of these seem to be localized in the same part of my brain, and that surgery may be an option. Any opinions, suggestions, thoughts about this?? As I said, I will be seeing her in just a couple days, but I am so very confused and scared and just don't know which way to turn. If the surgery could stop my seizures, then maybe that wouldnt be such a bad idea. My neuro has me on work restrictions, which thankfully I have a union job, and my employer reached an agreement with me and the union where I have been placed in a job that we all mutally agree will be safe for me and my co-workers. But I hate being told what I can or can not do. Plus the fact (and I know this sounds greedy) I am missing out on tons of overtime, which is costing me thousands of dollars. I try not to get frustrated, but it's very hard. I know I should just be thankful for my union, and the fact that I have a good job, but I get so angry when I am told I can't do something.

Thanks for letting me ramble, hope I don't sound too crazy or whiney.
CJ

 

[Nakamova]

Hi CJ, No you don't sound crazy or whiny! You've got a lot on your plate. I'm sorry it's so scary. Is there a friend or family member you can talk to, anyone who can provide counseling and help you get perspective?

Your neurologist should be able to give some guidance too on what may or may not be seizure activity. Twitches and eye "jiggling" can be seizures, but they can also be medication side effects -- let him know what's going on.

As for surgery -- it has helped some folks, but it doesn't come with a guarantee. Make sure you take your time making your decision, and get enough information to make the right decision.

 

[cjole]

Yeah, I've got people to talk to. My vbf, who I spend almost all of my time with. I've got a brother around who's my hero, plus, I have a counselor I see about once a month (in fact tomorrow is my next appt.) So, I have back up. which is great. And, I have been "reading" about the surgery. My neuro said it had like a 70% success rate. But, as I said, I haven't really talked things over with her yet, so don't even know how much of an option that is. Besides, my luck, I'd end up with a lobotomy! That does scare me, however, we are talking about my brain, not an arm or leg! Believe me, it is something that I won't take lightly. Thanks for the support! I DO appreciate it!

 

[epileric]

I have been "reading" about the surgery. My neuro said it had like a 70% success rate.

There was a news show I watched that talked about how successful the operations for seizures were but they only measured up to 6 months after the operation.

Many peoples seizures return longer than 6 months later so question that statistic & ask how long after the operation the people were monitored that they got that statistic and if (they know if) it dropped afterwards.

 

[alivenwell]

It's a huge mystery how seizures can return if all damaged tissue is taken out. I suppose a few abnormal brain cells can misfire after some surgery. How does a surgeon distinguish those neurons that fire abnormally six months into the future? Do we all have some sort of abnormal activity...with or without epilepsy? Do they go back in to see which cells look abnormal again and remove them?

If they were able to replace abnormal cells with healthy cells, where ALL of the normal healthy cells functioned normally after surgery, then that could open up doors to a better memory, better treatments, and improved quality of life. Can we eat a healthy diet that encourages/improves brain health?

They are creating machines that read our brain waves. Why not come up with some new invention that stops seizures without medication? Again, how does that device distinguish a hearty laugh from an actual seizure? Given the number of medications available, and their side effects, I would say the genius who finds a flawless non-invasive technique to stop epilepsy will become as filthy rich as our drug manufacturers.

Personally, I take medications because they work well. It seems like many seizures are induced by an illness or stress. We need to do stress busting techniques, ward off illness with sanitary habits and give current medications a chance to work. Neurofeedback, meditation and a change in a diet would be my serious considerations in addition to medications.

If you can come up with that device, you'd not have to worry about overtime ever. Personally, I'd get a 2nd opinion. It does sound like you get 'auras' /warnings before the seizures that allow you to go to a safe place. If it is really localized, then it sounds like there is an exact set of cells they can remove. What vital and/or functional areas of the brain are near that damaged brain tissue?

 

[Cint]

It's a huge mystery how seizures can return if all damaged tissue is taken out. I suppose a few abnormal brain cells can misfire after some surgery. How does a surgeon distinguish those neurons that fire abnormally six months into the future? Do we all have some sort of abnormal activity...with or without epilepsy? Do they go back in to see which cells look abnormal again and remove them?

I had a left temporal lobectomy 20 years ago and was seizure free for only 14 months. They said my seizures returned because they couldn't get all the damaged tissue. It was deep in my brain and if they did operate, I would end up like an extreme Alzheimer patient, not remembering anything. My memory is effected by the surgery as is my speech (aphasia).

If you can come up with that device, you'd not have to worry about overtime ever. Personally, I'd get a 2nd opinion. It does sound like you get 'auras' /warnings before the seizures that allow you to go to a safe place. If it is really localized, then it sounds like there is an exact set of cells they can remove. What vital and/or functional areas of the brain are near that damaged brain tissue?

I would get a 2nd opinion, also. Be well informed before going under the knife.

 

[Endless]

You aren't crazy - I do the same. Sometimes I think I'm having a simple partial seizure or a complex partial, and it turns out that there is a reasonable explanation for it (hey - the neighbor kid picked skunk cabbage!) We are so conditioned by seizures that everything seems like one until we can figure it out. Some are, some aren't.

Your doc is doing the right thing by doing another eeg. You'll know soon. And Nakamova is right - it could be side effects from the meds.

In the realm of what's ahead for us but not here yet: I saw an article on research being done for head injuries, where they've injected mice's brains with stem cells and it repaired their brains. It hasn't been done in higher primates or humans yet. I'm wondering if someday there might be something like this for seizures.