Epilepsy and your work / education situation

If you have epilepsy do you…..

  • Work FULL time

    Votes: 102 47.0%
  • Work PART time

    Votes: 34 15.7%
  • At present off sick due to E. but aim to return to NORMAL hours

    Votes: 20 9.2%
  • At present off sick due to E. but aim to return to REDUCED hours

    Votes: 7 3.2%
  • In education i.e. school, college, university etc.

    Votes: 42 19.4%
  • I am a full time Mother / Father / Carer

    Votes: 10 4.6%
  • I am not in education nor work due to epilepsy

    Votes: 27 12.4%
  • Other

    Votes: 18 8.3%

  • Total voters
    217

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Hello,

About 4-5 years ago, I was diagnosed with having Temporal Lobe Epilepsy, and at that time was having multiple seizures at a time, at multiple times throughout the week. At that time, I was pretty much a mess. I was unable to go to school, due to the volume of seizures that I was having, that the amount of time it would take for me to recover from the event (days), and wasn't even in a position to try and work again as I had done years before. I was definitely a candidate for surgery, however, in order for them to get enough information to decide if the surgery would be effective, an Invasive EEG would have to be done. This was obviously very concerning to them due to the fact that I become very hostile when in a postictal state; the first time I was hospitalized, I was nearly arrested, and put on a 72-hour hold (I've never been arrested in my life, nor am I hostile person), I've even left the hospital out of anger. Due to this, they chose not to perform surgery, and pursue treatment with medication, which took about two years to reach a combination of seizure medications to work, which have kept me seizure free for nearly two years. But, this has come with quite a cost. I started going back to school with online courses, and it has become even more clear than ever before that the side-effects from my medications have extremely reduced my ability to perform academically. I am unable to read more than a page without getting blurred vision, or a headache. It is nearly impossible for me to sit down and focus, and I can lost my train of thought in the blink of an eye. I am heavily medicated, taking three different medications adding up to nearly 1500mg. daily, along with other medications for other conditions. I know this large amount of seizure medication plays a big role in my inability to complete tasks, but, having gone through a two year period where it seemed as no medication was going to help, my doctors are understandably resistant to lowering my meds, since doing so has had very bad consequences in the past. I am curious if there is anyone who has experienced, or learned how to deal with this problem, or any problems that mount from the side-effects of their seizure medications? Is there some type of therapy that can help? Is there a medication that can help counter these side-effects?
 
I think most of us here have had similar experiences with school and work. I had experienced the same thing with high school and my early college era. I had to home school the 2nd half of high school because the medications I was taking just made it unable for me to attend class because the side effects were so bad. But they were a lesser evil to my seizures so I just had to deal with it for the time. Anyway, about 8 years later I found a good balance that gave me a relatively stable life with side effects and seizures.
About two years ago I decided to go with a VNS. I know some people have had mixed/bad experiences with it but it helped me tremendously. For me it pretty much did exactly as my doctor originally said. My seizure frequency dropped by 50% and the severity of them has also decreased drastically. I was having petite mals about 5-10 times a week at around 10-15 seconds. About a year into my VNS they dropped to around 2 seconds and once every two weeks or so. It also improved my moods overall enough that I was able to get off the anti-depressants I was on. I think I am one of the lucky ones that has found a huge benefit with it though.
During some pre-surgery work ups I was also told that my memory has been severely affected by my seizures and seizure meds though. So I am in a similar boat with learning. They were able to give me quite a few tips to help though and it has seemed to help.


Good luck, friend!


Brody :rock:
 
I work about 30 hours a week but it fluctuates depending on the week. I'm a server and it's the perfect environment for me because the lights are dimmed making typical lighting not an issue! I was in college but had so many problems with being IN the building that I had to stop and sometimes have a note taker for me (there was a special department in the school that allowed me to do it)
I prefer to work in resturaunts/bars because the environment is much better for my situation and although it still has risks, its nothing compared to working in an office with lighting and computer issues
 
I just quit my full-time job. It was so stressful--outrageous deadlines and hours, angry executives, and the stress and deadlines never ever let up. 8 months of unrelenting stress and I started having myoclonic seizures every night, and some throughout the day--getting no deep sleep at all, and having to go to this stressful job so tired I could barely function. My boss wouldn't let me hire anyone even while admitting the job was more than one person could typically handle. So I had to quit. No idea what the future will hold, and wondering if I will stabilize enough after a month or two off for a normal job to work for me again or if I'm ruined. I had a disability accommodation in place and they knew I had E--I'm considering legal action.
 
I'm in the process of quitting one job and moving into another one. My current employer has been very unhelpful since he found out that I have seizures and decided to cut my working hours right down without consulting me then blaming the reason on everything else.

If I pass the medical test for my new job I am being put through at the moment, I may be able to write a resignation letter this week!
 
I don't remember how I voted, however since January I've been unemployed (or underemployed depending how you look at it). I got laid off 7 months ago and have been looking for jobs since. With all the craziness going on, especially having lost my drivers license, I've felt a bit restricted. If I could move to California or Texas, I would have found a job by now. Unfortunately I require the support of family and friends to get around. I suppose I could just sell my car and use the extra money for Uber, but it would still be a huge hassle trying to find good doctors who are competent. I'm going to stay here in Orlando if I can so I can be near family. Family matters more than a high paying job anyway.

Lastly, with all that is going for me healthwise, I'm not sure I would want to work a 40 hour week. Most engineering jobs are fulltime jobs, so finding something part time AND in Orlando is going to be impossible. Most engineering companies in FL are defense and aerospace jobs and I refuse to work in that industry again. Unless you like getting laid off, never work in that industry.
 
I don't remember how I voted, however since January I've been unemployed (or underemployed depending how you look at it). I got laid off 7 months ago and have been looking for jobs since. With all the craziness going on, especially having lost my drivers license, I've felt a bit restricted. If I could move to California or Texas, I would have found a job by now. Unfortunately I require the support of family and friends to get around. I suppose I could just sell my car and use the extra money for Uber, but it would still be a huge hassle trying to find good doctors who are competent. I'm going to stay here in Orlando if I can so I can be near family. Family matters more than a high paying job anyway.

Lastly, with all that is going for me healthwise, I'm not sure I would want to work a 40 hour week. Most engineering jobs are fulltime jobs, so finding something part time AND in Orlando is going to be impossible. Most engineering companies in FL are defense and aerospace jobs and I refuse to work in that industry again. Unless you like getting laid off, never work in that industry.
Thinking about it, I'm almost in the same boat. I've been wanting to move from Sydney to Townsville in North Queensland, Australia but I won't be able to until my Neurologist retires, my Neurologist has been excellent for me so I don't want anyone new until I must change
 
I currently work 40 or more hours a week. I had my first seizure on my first day at my current job. The owners were wonderful and allowed me to take extended (unpaid but hey I didn't get fired) medical leave for as long as I needed, which ended up being almost a month. The owners know everything they need to about my seizures so they put me on night shift due to my being unable to drive. I work in a community residence for adults with disabilities and as of now my neuro knows exactly what i do and has cleared me to do this.

But within the last month my condition has been getting worse so I don't know if I will be able to stay with my company which sucks as I LOVE my job. Has anyone else delt with this? Had to quit a job due to being a hazard?

And it wouldn't break any workers rights laws if they did fire me (if my neuro deemed me unfit to work) as I am the only staff in the home on my shift and there isn't a shift that doesn't require driving except night shift. So it's not like the could find me another position if it ever came to that.
 
I'm currently working full-time at a Real Estate / Foreclosure firm as a Foreclosure Assistant. When I was hired, I didn't mention that I have seizures or that I am a person with epilepsy. At that time, I chose to not be medicated as I was hopeful that I could control them by controlling the triggers. I did have myoclonic and an occasional drop attack but nothing serious - I didn't explain to anyone what the incidents were about, but I would receive strange stares. I had a bad Drop Attack at work recently, in which paramedics were called. After this incident, I took a couple days off in order to follow up with my neurologist. The manager and HR manager have been extremely accommodating in letting me figure out the situation. While on medication, I've had myoclonic seizures - sometimes three in a row - in which, under the watchful eye of the manager, he has let me go home so as to not risk having a drop attack at work.

I am currently working on getting back to school in order to pursue a career as a paralegal.

I want to make sure that I have my seizures controlled under medications, but I also don't want my seizures to control life decisions.
 
I'm now a part-time PhD student, meaning I'm not teaching just trying to get through my general exams. I love teaching, but it was too taxing on my body to try to teach and work on my own stuff (including course work) which often meant breakthrough tonic clonic seizures plus partial complex seizures. As a result, my students' work suffered. I am going to try and tutor next semester, but I've never had controlled seizures so we will see.
 
I am married, & have 2 sons. I had completed a B.S. Degree w/a double major in Economics and Information Decision Sciences. My Associates degree is in Accounting. Unfortunately, I began having Complex Partials about a year after completing the B.S., making them useless for me in many ways. I had CPs that put/left me in dangerous situations.
 
Hello,

About 4-5 years ago, I was diagnosed with having Temporal Lobe Epilepsy, and at that time was having multiple seizures at a time, at multiple times throughout the week. At that time, I was pretty much a mess. I was unable to go to school, due to the volume of seizures that I was having, that the amount of time it would take for me to recover from the event (days), and wasn't even in a position to try and work again as I had done years before. I was definitely a candidate for surgery, however, in order for them to get enough information to decide if the surgery would be effective, an Invasive EEG would have to be done. This was obviously very concerning to them due to the fact that I become very hostile when in a postictal state; the first time I was hospitalized, I was nearly arrested, and put on a 72-hour hold (I've never been arrested in my life, nor am I hostile person), I've even left the hospital out of anger. Due to this, they chose not to perform surgery, and pursue treatment with medication, which took about two years to reach a combination of seizure medications to work, which have kept me seizure free for nearly two years. But, this has come with quite a cost. I started going back to school with online courses, and it has become even more clear than ever before that the side-effects from my medications have extremely reduced my ability to perform academically. I am unable to read more than a page without getting blurred vision, or a headache. It is nearly impossible for me to sit down and focus, and I can lost my train of thought in the blink of an eye. I am heavily medicated, taking three different medications adding up to nearly 1500mg. daily, along with other medications for other conditions. I know this large amount of seizure medication plays a big role in my inability to complete tasks, but, having gone through a two year period where it seemed as no medication was going to help, my doctors are understandably resistant to lowering my meds, since doing so has had very bad consequences in the past. I am curious if there is anyone who has experienced, or learned how to deal with this problem, or any problems that mount from the side-effects of their seizure medications? Is there some type of therapy that can help? Is there a medication that can help counter these side-effects?
Does anyone have any answers for Notorious? I am in the same situation where I had to take time off from work (I had a seizure there and which I am no longer at now) to get my medication sorted out and controlled. I eventually had to leave the job when going back. One of the side effects of the medications I'm on is slower thinking, so what can I do now for employement? My condition isn't enough to collect disability but I'm slower than normal. I had my first seizure at age 25 and was fortunate to get a B.S. degree before it "showed itself". Can I use it? I'm currently 34.

I am current employed, but I really hate the company I'm at right now and do not want to be there long.

It seems this is such a popular question with employment, I just can't get any answers for it anywhere.
 
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Christian,

Each case is individual and I don't know about your situation. But, some of us do have to settle for less. I have a Master's degree and I attended a highly ranked university for undergrad. I was in advanced classes growing up and was always a high achiever. But, I've never even used my degrees. My meds have always slowed down my cognitive functioning, but now I have even more issues--memory problems b/c of brain damage from all the seizures over the years and now effects from surgery last year, as well. I haven't worked in 6 years and now I've been trying to figure out what can I do that I will also enjoy. I have had to reach acceptance to come up with this answer and I'm not even sure if it's the right answer, yet.

I love your picture. I grew up on the beach and miss it very much. I do go on beach vacations, though.
 
Music36
I totally agree with you about every situation is different.
I was forced into early retirement after 29.5 yrs with the same employer, after long term use of the meds (28yrs) I was losing my short term memory among slower response time (as the same in your case) and my employer felt that it was affecting my job.

As like you, I wasn't able to use my skills and qualifications and had to settle for a lessor job with the Federal Gov't.
My employer and my union agreed on an early retirement pkg. Which included 85% of my pension and disability insurance for the rest of my life.
Not everybody is that lucky though.

BTW, I've been out of work for 13 yrs now as a result of long term use of meds.

Randy
 
My Complex Partials began so soon after the completion of my undergrad degree that I often joke/feel like it was a waste of time.
After high school, I went to a university for 1 year, but commuting was too much--so I went to the community college near my home for a couple years. (I lived on campus when I returned to the university). Sometimes I think I should have just left it at the completion of my Associates Degree.
 
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