I am so scared about what is to come

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

cjole

New
Messages
57
Reaction score
0
Points
0
I am a 45 year old female. I had my first seizure 7 years ago, just before Christmas. All I remember was riding down the road with my friend driving. We were coming to stop sign, and so I looked to my right checking traffic. I remember this REALLY weird OMG moment and next thing I know, Im in the hospital with Doctors and Nurses poking and pulling I started crying pretty hard, and was sooo very confused. My friend was scared to death also, she was in the other room, and they quickly brought her to me. Anyway, I had a bunch of tests run, and everything came back normal, they found nothing on anything.

They put me on Tegretol, which I took religiously for six years. But, I work shiftwork in a power plant, and was having a very hard time staying awake at work or at home no matter how much sleep I had. I remembered my Doctor at the time telling me that sometimes people will have a seizure for no reason, be on meds and then after awhile, they decide they don't want them anymore. Soooo, I slowly weaned myself off of the Tegretol, it was probably a 3 or 4 month period. Shortly after that, I was with my friend again, (playing bingo! LOL). We were on the last game of the evening, and next thing I know, I wake up with some EMT trying to shove an oxygen mask in my face, almost knocked the poor guy out!

Needless to say, I am back on meds Keppra this time (won't try that again), however my job is in jeopardy. I work in a pretty dangerous environment, where my normal job as an Auxillary Operator, I spend alot of time on catwalks, climbing ladders etc. Plus there is a lot of dangerous equipment around. It hadn't been an issue after the first seizure. I came back to work after a couple months off, and was right back at it. This time, I came back to work in Dec. (seizure was in Nov.) had work restrictions that said no ladders etc, etc. But they made accommodations, and stuff so I didn't have to do that. Then someone somewhere got p.o'd because I worked an overtime shift or something, said something to management, who went to HR, who have put me in a position where I may not even have a job.

Right now, I work in the control room (which is a higher paying job anyway, but I hate it) I sit in front of computer screens all day, operating the equipment I used to have to check out. It's a union job, and the company will make accommodations where I can have an open job if it's available, and all that, but after talking with my union business manager last night, if they decide that there is a possibility that I may have a seizure here, and somehow blow the place up or fail to stop some piece of equipment that could harm someone else, I may be just out of a job. I don't think that will happen, but it is a possibility. Plus, I have lost out on tons of money the last 3 months. there has been overtime available, but because i am on restriction, I get none of it. And, Im talking like $600 a day! It's killing me financially, and emotionally I am just a wreck. I just don't understand why it's such a big deal now.

Obviously things were controlled while on meds, I had NO breakthroughs at all, I quit taking it and have another seizure, and now my whole life is screwed up. Makes no sense, my doctor will release me to drive my car down the road at sixty plus miles an hour where I could crash into a school bus full of kids, but I can't climb a ladder at work, cuz I might fall??

Sorry if I sound like a whiner, I am just so very angry and frustrated. All of a sudden my whole way of life is gone. And I wondered why people wouldn;'t go to the doctor after a seizure? I may never tell my doctor again! Anyway, thanks for letting me vent.
 
Last edited by a moderator:
Hi Cjole --

Welcome to the site. Vent away! that's one of the many things this site is good for.

I think a lot of workplace restrictions on people with epilepsy have to do with liability issues -- companies don't want to get sued if something goes wrong, even if the chances are very slight. Additionally, there's a lot of misinformation out there about epilepsy. People are afraid of what they don't understand.

I hope your job AND your health go in a postive direction.

best,
Nakamova
 
I understand about the liability issues. But aren't there just as big of liabilities with people who have diabetes, or heart problems?? There is probably as much, and in some cases more, of a chance that those people could fall and get hurt or hurt someone else. Why is it ok for them, but not for me?? The plant I work at is mostly men of the "baby boomer" age, and I am sure there are alot of them with heart problems/diabetes, etc. In fact just a few years back one of the guys on my crew had a massive heart attack at home, and died. What would have happened if he had been sitting where I am right now?? The likely-hood is that he would have been sitting in the chair I am in right now, and then what? Life is not predictable. There is no way you can convince me that it is anymore of a liability for them to have me doing this job than it was for him. He had known problems, had already had 2 or 3 heart attacks, and there were no restrictions on what he could or couldn't do.

Anyway, sometime next week I should learn more, I hope. I have a meeting with my union business manager, and we will discuss what he thinks will happen. Another frustrating point for me is that originally my doctor had me scheduled to be released from restriction on 7/17. Then the company wanted a reason why she had picked that date, and the letter she sent me after that was really different, so the company wanted another letter, which I signed a release for the Dr. to send to them, but I have yet to see or hear what exactly it even says. All I know is what the bossman told me a little of, and it sounds like she is saying I will be on these restrictions forever. Now, how can she change her tune so much in just a couple of months? ( I last saw her in late April) GRRRR!!!

Thanks again!!
CJ
 
Hi cjole, welcome to the forum. :hello:

Have you had any further follow up EEG testing since the first seizure?

... It hadn't been an issue after the first seizure. ...

Two unexplained seizures is generally classified as epilepsy and puts you at statistically at a significantly higher risk for having more.

... Obviously things were controlled while on meds, I had NO breakthroughs at all, I quit taking it and have another seizure, and now my whole life is screwed up. Makes no sense, my doctor will release me to drive my car down the road at sixty plus miles an hour where I could crash into a school bus full of kids, but I can't climb a ladder at work, cuz I might fall??

If your doctor is confident that you are well controlled on your medications, he might be willing to write a note for your employer to that effect.

That said, there are many, many people who were well controlled on their seizure medications for years and started having breakthrough seizures for no apparent reason. Nothing is guaranteed.
 
Hi cjole --

I agree that your risk isn't necessarily any higher than other people with certain health problems. It's the perception of epilepsy that is skewed, usually by fear and ignorance. I would definitely get in touch with your doctor to find out what was in the release -- you absolutely have a right to see that information, and she should have sent you a copy of what she provided to the company. It's also possible that your doctor is concerned about liability issues -- if something happened to you after she gave a specific release date, then she might be worried that she would get sued. So find out what she said and why -- the more information you have the better. And see if you can contact a lawyer, or legal aid services to get a sense of what your rights are here.

Best,
Nakamova
 
My medical history may help some of the participants. I was first diagnosed to have epilepsy in 1980 in Ireland (age 14). Diagnosis was Complex Partial Seizures originating in the left temporal lobe. Seizures could not be controlled. Neurosurgery in 1981. Portion of left hippocampus was removed. The seizures returned several years ago (I am now 43) and seizures could not be controlled adequately through medication. I had surgery at the Cleveland Clinic in January 2007. The seizures are now gone. Regarding Generic Medication, while I support the choice of Generic or Brand, I have Blood tests frequently and they show that there are significant, changing levels when I use Generics (Generic Lamictal and Keppra). My advice of those with uncontrolled epilepsy? Get the opinion from at least 2 other Neurologists, preferable those that specialize in epilepsy.
 
No, I have never had any further diagnostics since my first seizure in 2001. I couldn't even tell you for sure all the tests that were run. I was pretty out of it for quite awhile, I think I tried about 4 different meds before we settled on Tegretol. I know I had an EEG, and I think it was an MRI, plus they did some kind of thing where I was sleep deprived. Nothing showed, and they had no answers. I was sure they would do all of that again, also.

But from what I got from my neuro was that she was pretty sure the reason I had the last one was because I had quit taking my meds. My regular doc had written a letter to the state, and my DL was suspended, but my neuro wrote right back in the very first time I saw her and had that reinstated. So, IMO, that pretty much tells me that she really doesn't think it's a problem.

I do realize that having a second seizure pretty much guarantees that there is a problem some where in my brain ( believe my friends would agree with that!) And I realize the likely hood will ALWAYS be there that I will have more. Which is something that preys on my mind almost every waking moment of EVERY day. I just don't agree that it's anymore of a liablilty or a danger than anything else. Who's to say that maybe I wouldn't have a heart attack or something else?? Nothing is predictable, and there certainly are no guarantees for ANYONE.
 
P.S: Just wanted to thank you all for listening, and for this forum, and for the responses, I appreciate it, and know that everyone of you have problems also, and most are probably worse than mine. But thank you ALL for you contributions, and for listening. I try to talk to my friend about some of this, but she doesn't understand, really, how I feel. The constant wonder when something is going to happen again, the fear EVERYTIME my eyes cross or my head feels funny. She's been with me through all of this, and she sees and hears everything, and she holds me when I cry, but she can't REALLY understand what I feel. You guys are all walking the same pathway and have had alot of the same bumps along the way, Thank You!:clap:

CJ
 
Hi there

nothing to worry about, things are always a struggle sometimes and when you are down there is only one way you can go and that is up.

My medication is a combination of Topomax and Lamictal which works extremely well, ask you GP about that.

T
 
I do realize that having a second seizure pretty much guarantees that there is a problem some where in my brain ( believe my friends would agree with that!)

Not guaranteed that it begins in the brain. There is a lot of research done, that shows that your nutrition, the health of your GI tract, liver etc, plays an important role in the health of your noggin.
 
(((cjole)))

I'm sorry to hear you're having such a hard time at work. I couldn't imagine being stuck in a control room every day either. I'm a maintenance technician myself, so I'm doing all kinds of work on machinery as well. Also, I'm not the one with E, that's my wife.

I do know how your friend feels, and partially how you do too. That constant worry got me so down that I had a nervous breakdown with panic attacks and all the fun stuff that goes along with it. My wife had that worry too and it was hard on her as well. She's been seizure free for nearly 5 months now though, and things are improving for us quite a bit, thankfully.

I don't really have much advice, but wanted to share my story with you and give you my support. I hope you can work things out and be back to doing what you WANT to at work again soon. Don't give up the fight, keep pushing for your rigths and I'm sure you'll be able to hammer it out soon enough.
 
Thanks for the support Darcness!

Feels good to hear. I had my meeting with the union guy a few days ago. They had a big meeting with all the big wigs from Human Resources, a couple of the top union guys, my Unit manager, and have come to the conclusion that unless and until my Doc says different, I will be stuck in the control room. BELIEVE me, I will have a lengthy discussion on this with my neuro on my next visit! The plant I work in is pretty large, and there are three control rooms, controlling four turbines. I will be placed (by paragraph 65 of our contract) ahead of three other people, so I will be stuck where I am until they either accept or reject placement. Then the senority thing will be back to normal, and I will be allowed to bid for the higher paying jobs on the two larger units. However, as I said, I don't enjoy the job....have a hard time being stuck in one room for twelve hours at a time.....but I do have a job! And, I must admit, a pretty well paying one for this area (GO UNIONS!!!) Unfortunately until I speak with my neuro, there isn't anything I can really do but go along with all of this. If she will lift the restrictions, I will be at least allowed to work in the plant once in a while, if not, gee, it's only another 15 years until retirement......UGH.

CJ
 
Back
Top Bottom