So I'm in disagreement with my Mum about what I should do. I am in my 40s lol. Anyway, my seizures are under better control than they have been in 2 years. All during this time I have had very frequent seizures and it was very difficult to identify specific triggers because they were so frequent. Now the main trigger seems to be the one day a week that I volunteer. I want to keep working this one day since I see it as a test for how well the added medicine is working. My Mum disagrees and says I should get seizures under control first. But I feel how can I even remotely get a life back if my test for seizure control is doing nothing? My intention is to get back to a paid job so I feel what I'm doing is a pretty good way of getting medication levels where they need to be to allow me to do this. First, what is everyone's opinion on this. Second, why would a day of volunteering (busy but I like doing it) even cause seizures?
Disagreement with what I should do
- Thread starter masterjen
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A day of volunteering is busy you say so it probably stress full as well and thus seizure. In this case I agree with your mother, you need to step back a second and think straight. First what is going to let you go back to work full time, volunteering one day a week or better seizure control. Which effects you more the stress of not working or the stress of lack of seizure control.
BrandiBrat
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Is there a way that you can reduce the full day of volunteer work to a half-day? I try not to cut out anything that brings me enjoyment because mental health is so important to our quality of life, hence fewer seizures. BUT, if the full day of volunteer work is going to make you have seizures, I have to agree with mum on this one. Congratulations on the management of your E over the last 2 years!
Thanks for the congratulations on seizure control, Brandi. While everyone is different, for me I owe it to first finally getting in to an epileptologist a year ago, and then 6 months ago having Vimpat added to the ones I had been on for two years.
BrandiBrat
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Wonderful, you!! 
I've heard great things about Vimpat as an Add-on. I wish my crummy insurance would pay for it but it got denied. I wish you all the luck on deciding what to do with your volunteer job as well as getting back to work.
I've heard great things about Vimpat as an Add-on. I wish my crummy insurance would pay for it but it got denied. I wish you all the luck on deciding what to do with your volunteer job as well as getting back to work.
Sparkles
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What kind of volunteer work? I was thinking the same thing that maybe you could do 1/2 day of volunteering and see how that goes? I am also in my 40s and also have disagreements here and there with my parents about things related to how I'm dealing with my seizures. My parents are a little overprotective I guess! Maybe there is something you can do at the volunteer place that is a little less busy or less stressful? Best of luck, I hope it all works out.
Hi Brandi - for me good seizure control is a couple of minor partial and only one strong complex partial a week, with no clusters Before I was getting at least one cluster every two weeks and 3-4 partial of varying types and strengths per week. Not fun! But so much improved now
And $sparkles- I'm glad I'm not the only 40 something with overprotective parents lol
And $sparkles- I'm glad I'm not the only 40 something with overprotective parents lol
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Hi masterjen,
I don't agree with your mum and others here on CWE. If the one day of volunteer work is what you enjoy, then go for it. How do you know that is what is causing the seizures and not the stress from your mother? C'mon, you're 40 years old!! I've had CP's and TC's for over 30 years now and have 2 now grown children, one is 30 years old. At one time in my life, I was having 3-5 CP's a day and had surgery. But after the surgery, I started having more intense TC's and still had 3-4 CP's a month. I was also doing volunteer work at the schools, so one can work around the seizures if they choose. Plus we lived 1500 miles from family and my husband was a pilot, so I basically had to fend for myself with friends to help me out with the driving.
Now I am separated from my husband, so I live alone and I still have a few seizures. Two weeks ago today had a VNS replacement surgery. I am not driving, so still have to rely on friends for help. But.............
I choose not to let epilepsy control me!
I don't agree with your mum and others here on CWE. If the one day of volunteer work is what you enjoy, then go for it. How do you know that is what is causing the seizures and not the stress from your mother? C'mon, you're 40 years old!! I've had CP's and TC's for over 30 years now and have 2 now grown children, one is 30 years old. At one time in my life, I was having 3-5 CP's a day and had surgery. But after the surgery, I started having more intense TC's and still had 3-4 CP's a month. I was also doing volunteer work at the schools, so one can work around the seizures if they choose. Plus we lived 1500 miles from family and my husband was a pilot, so I basically had to fend for myself with friends to help me out with the driving.
Now I am separated from my husband, so I live alone and I still have a few seizures. Two weeks ago today had a VNS replacement surgery. I am not driving, so still have to rely on friends for help. But.............
I choose not to let epilepsy control me!
I appreciate your input cint but I think you hit the nail on the head there when you said you have had seizures for 30 years. I've had them for less than 3 so it's still a little scary whether you're 4 or 40. I'm also still learning the ropes about what is safe to do and what is not safe to do. I hope that if I'm unfortunate enough as you are to be affected by seizures long term that I learn some of your tough approach to life along the way
Jen I wouldn't necessarily interpret Cint's post as telling you to "grow up" but perhaps more as saying you can choose, to a degree, how much you let epilepsy dominate your life. Obviously this depends to an extent how much seizure control you have but I do think that when there is a question of necessity (eg Cint had no option to get on with bringing up her family) it is amazing how people manage to cope.
I don't have E myself but I do suffer from mental health issues and in a way I'm glad that circumstances force me to keep going no matter what.
We have always taken a stance of encouraging my daughter to live as normal a life as possible. No doubt this is made easier by the fact her seizure activity can be intermittent but we have actively resisted any kind of "cotton wool" approach. On top of her being at school full-time, she works eight hours in a department store at the weekend. Apart from the fact my family struggles financially, I judge this to be good for her self-esteem, even though she is tired a lot of the time, especially as she was badly treated in her previous part-time job due to her E.
Would it be possible for you to take a brief break from your volunteering, perhaps even for something like a month? That might help identify whether it is that that is causing you to have continuing seizures or something else.
I don't have E myself but I do suffer from mental health issues and in a way I'm glad that circumstances force me to keep going no matter what.
We have always taken a stance of encouraging my daughter to live as normal a life as possible. No doubt this is made easier by the fact her seizure activity can be intermittent but we have actively resisted any kind of "cotton wool" approach. On top of her being at school full-time, she works eight hours in a department store at the weekend. Apart from the fact my family struggles financially, I judge this to be good for her self-esteem, even though she is tired a lot of the time, especially as she was badly treated in her previous part-time job due to her E.
Would it be possible for you to take a brief break from your volunteering, perhaps even for something like a month? That might help identify whether it is that that is causing you to have continuing seizures or something else.
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:agree: This is what I was trying to say. Thanks for interpreting this correctly as I often have trouble finding words (aphasia).
CQ:)
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Hi Masterjen,
If you enjoy doing the voluntary work I'd say to keep doing it.
If you find that the 1 day you do voluntary work is really busy/stressful then maybe you may be able to look at reducing the amount of hours you volunteer eg -
look at doing 1 or 2 1/2 days voluntary work instead of a full day.
I am currently unemployed but looking for paid work. I hate sitting at home doing nothing so to keep myself busy & to help improve my work skills I have been doing voluntary work on & off for years (in between paid work). At the moment I volunteer with a charity organisation who helps the needy, I help out in their charity shop mainly doing the office work but I will also help out on the counter & other duties if needed. I have been volunteering at this charity place since 2004, at the moment my seizures are well controlled & I volunteer 3 -4 days a week. But I have had times where my seizures weren't controlled & I found if I could only volunteer 2 -3 days a week because if I was out many days I would get over tired which would trigger my seizures.
I am lucky because at the charity shop where I volunteer i have a really good boss who is understanding about my epilepsy, he has seen me have a quite few simple/complex partial seizures over the last 9 years. I don't have any set days as to when I go in to volunteer as it usually depends on if I have other things going on or how I feel. I usually work out with my boss on a week to week basis as to what days I will be in.
If you enjoy doing the voluntary work I'd say to keep doing it.
If you find that the 1 day you do voluntary work is really busy/stressful then maybe you may be able to look at reducing the amount of hours you volunteer eg -
look at doing 1 or 2 1/2 days voluntary work instead of a full day.
I am currently unemployed but looking for paid work. I hate sitting at home doing nothing so to keep myself busy & to help improve my work skills I have been doing voluntary work on & off for years (in between paid work). At the moment I volunteer with a charity organisation who helps the needy, I help out in their charity shop mainly doing the office work but I will also help out on the counter & other duties if needed. I have been volunteering at this charity place since 2004, at the moment my seizures are well controlled & I volunteer 3 -4 days a week. But I have had times where my seizures weren't controlled & I found if I could only volunteer 2 -3 days a week because if I was out many days I would get over tired which would trigger my seizures.
I am lucky because at the charity shop where I volunteer i have a really good boss who is understanding about my epilepsy, he has seen me have a quite few simple/complex partial seizures over the last 9 years. I don't have any set days as to when I go in to volunteer as it usually depends on if I have other things going on or how I feel. I usually work out with my boss on a week to week basis as to what days I will be in.
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