Hello Everyone, this is my 1st time here!

[Missy]

Hi everyone I am extremely happy to have found a place where I can share my thoughts and feelings with others who have similar issues and concerns. I have a history of simple partial, complex partial, and rarely, tonic clonic seizures (these have occurred during periods of transition when I tried different anti-seizure medications). My seizures began after I had brain surgery in May of 1998 when I was a junior in college. Since then, I have been on Topamax and tried several other medications. I have had the best results so far with a combination of Topamax and Lamictal, which I am currently on.

I am still in a process of coming to accept the new me and the challenges, the frustrations that come and go, and all of the lifestyle changes that are involved. I was an account manager in telecommunications, I felt so esteemed to be working for such a large corporation, and the harder I worked, the higher my commissions. It gave me a secure identity and sense of purpose.

I'm still trying to accept the most difficult of all circumstances- that I gave up this job because I could not handle it. My complex partials became so frequent and severe that I couldn't carry on a conversation during a sales presentation, much less on the phone. I forgot where I had last put customers' files, forgot to stop and take lunch breaks during the middle of the day, and I struggled for words (anomia). I tried to compensate by working overtime, while trying to hide this chaos in every possible way I could.

That was Feb, 2007. I have been on social security benefits ever since. I have thought about what other types of jobs might interest me, which would involve a lower amount of stress. I thought, perhaps counseling? In some way, talking to others and helping others? I have taken some graduate level classes in mental health counseling, (perhaps they are more related to helping myself, as opposed to serving the purpose of career preparation, not really sure). The real issue for me is, when my seizures are not under control, I cannot work (no question about it!) However, I do not know how much limitation (job-wise) I have now that my seizures are well-controlled, and what type of job would be best given the fact that (as you all know) I have a seizure threshold that is sensitive to stress and fatigue.

I am also extremely afraid of discontinuing my social security benefits and beginning a job with a salary because I fear, what if the seizures worsen and I become habituated to the Lamictal as I did with the Topamax? But without a job, I feel like I am barely even living at all!!

Can anyone share with me the types of jobs you have or have had that tend to work well with having seizures (Or having seizures well-controlled with medications)?

Does anyone have any advice that you can share with me? I would so much appreciate it!!

[Nakamova]

Hi Missy, welcome to CWE!

I think Lamictal has a lower risk for developing a tolerance than some of the other anti-epileptic drugs, so that may help point you one way or another. As you know it is tricky to predict how any given individual will respond to medication, but perhaps your neurologist may be able to give you a sense of how things might go.

You could start exploring new career paths by taking classes, doing informational interviewing, and/or volunteering -- during that time you can see how you are feeling on the meds, while making contacts and gathering information about the kinds of work stresses you might encounter. I think counseling is an excellent direction to consider, possibly in some larger setting like a community center where there's some flexibility, group support, and (ideally) health insurance benefits.

I work as a graphic designer at home, which has worked out well for me. It gives me a fair amount of flexibility to schedule work, and I don't have to worry about driving. (There is definitely stress, but my seizures are well-controlled right now, so its hard for me to tell if the stress is excessive). One downside is that I'm in front of a monitor a lot. If you are at all sensitive to computer screens or eyestrain, you might want to keep that in mind while considering what kind of work you can do.

Friends of mine have found work by volunteering (in a museum and at an aquarium), eventually resulting in landing paying jobs. They work behind-the-scenes, so the stress isn't quite the same as you might have in a job where you are dealing with the public.

I'm sure other CWE folks will chime in with suggestions. I hope you feel free to explore all the different forums here, and chat and/or vent as needed.

Best,
Nakamova

[Endless]

Hi, Missy,

Employment is a huge issue for people with seizures. Before I was diagnosed I was having several a day. I have temporal lobe epilepsy which meant my seizures were really kooky, from not recognizing my coworkers, to not remembering whole conversations, to being unconcious and saying bizarre stuff, to intense feelings of fear or euphoria. Needless to say it affected my job and I was not able to do it. Straight out on medical leave.

Now even though my seizures aren't completely under control, I'm considering going back to work. I know I need a job that is behind a desk, relatively low stress, and close to my home. I have a friend that is an occupational therapist and he helped me with a list of accomodations that will help me when I'm back at work, just in case I have a seizure there.

Social security (and most disability insurance) has a period of time when they let you try to go back to work. If it doesn't work out, you are right back on social security. Or, if it's a part time or low-paying job (like making and selling crafts) you can earn up to a certain amount before it is deducted from your payments.

An occupational therapist can help you determine what you can and can't do, and some ways to support you so you can do the work anyway. That helps in determining which jobs you might be able to do. A rehabilitative center can also help with that. If you see some jobs you might like, ask someone if you can shadow them for a day. Most people/companies will happily help out with that.

Contract/temp work is a good way to get a look at different companies and jobs, too. And since it's temporary you can quit any temp assignment any time. You can't quit on them too many times, though, or the temp agency will quit sending you jobs.

About going back to work. I'm really scared I'll have a complex partial seizure at work, do something horrible, and not know it until HR drags me into their office to fire me. (Like take my cloths off in the hall, call someone a mean name, hit someone, steal something, etc... all things that can happen during a complex partial. Most of the time I just walk like a zombie or sit there and stare, but there have been several instances of some crazy stuff.)

I'm also scared of some kinds of simple partials, like memory issues, not recongizing people, garbled speech, etc.

I'm going to try to go back, though. Hopefully my seizures will be under control soon. Hope yours are, too.