Epilepsy and work.

[DownstairsMixUp]

Wonder if anyone could give a bit of advice really as feel a bit stuck with the whole situation.

I have had janz syndrome (type of epilepsy) since I was 13 but wasn't diagnosed till I was 20. At first I was put on Lamotrigine but it stopped working once I had my son so I have moved to Keppra, have been on it since 2009, had a few myclonic jerks in November 2009 and my last grand mal was in september 2009 (three days after i gave birth) Though if I am totally honest, I feel I could of easily had more grand mal's since but I know my body now, if you see what I mean? A handful of times since then if I have not had enough sleep I wake up and feel deja vu and tingly and I have these strange shakes in my hand. I know what this is so put myself back to bed to sleep more and then usually it's fine once I have a bit more sleep. Sometimes it's been a stress trigger to.

Anyway i currently work 16 hours a week, fine, as the latest i start is 10am and the hours are not long enough to make me tired anyway as if i'm wiped i can always have a quick nap when i get home before i collect ds from nursery.

But i am so sick of living on part time wages. People make out tax credits are great but a) they aren't b) they are such a hassle all the time, i would really love to work full time and support myself but i haven't worked full time since i had my diagnosis because quite frankly i am scared of how my body will react. :(

I was also a student nurse when i had my first grand mal and had to give it up as the nights/studying/hours were just making my seizures so bad it was horrible. I was jerking without fail every morning and having atonic seizures so i'd fall to the floor, then I had a grand mal at a bus stop.

What do people suggest? If i go full time and explain my condition, how will it effect me? Will people be supportive or will it just hinder my chances of getting full time work?? My current employer doesn't even know I have (i know that's not right) but i just hate telling people about it and don't know how people will respond to me. Maybe i just haven't accepted it properly yet. Thank you for any advice given to me!

I am a registered epileptic since 2008 although my seizures are few and far between. When moving to my present job which was initially full time I had to declare this on the occupational health form. I am not allowed to work alone after hours due to my condition and only a handful of people such as my manager, H&S rep and Head of Department were told but apart from that nobody can discriminate against you because of this condition and they must make the necessary adjustments to your job. I work as a HCP but not in a front-line role so lack of sleep or unfriendly working hours are not a problem for me.

I wouldn't mention it at interview stage but your employer does need to know. Bottom line is you do have a debilitating condition so don't force yourself to do full time if it's going to be detrimental to your overall health. Lack of sleep and emotional stress are my triggers so I know not to push myself too hard

Hi baking there's never any full time roles where I work, it's only part time, so i'd have to look elsewhere if i wanted more hours. I really want better things for my ds but part time isn't very much and at the same time, i'm worried if i do go full time it will effect my epilepsy. I'm often so don't want to take the pee, but feel like I am just stuck in a rut, feel like I will never earn a good income as i am limited to hours i can do. Night work would be amazing for me in a dream world but it just would not work for me.

My grandad has the same type of jme and had to work part time most of his life due to sleep depriviation being a huge trigger but i really don't want that and i don't have the qualifications for a good well paying part time job. Maybe I need to go back to college or something, it's so depressing!

Hello!

I have Juvenile Myoclonic (is that another name for Janz?) and take 1000mg of Keppra in the morning and 1000mg at night. I still have a couple of minor jerks (eyes, arms) every couple of weeks

So do you know how much sleep you need to avoid fits? I work 4 days a week - each day is different but on average 9-5pm. I go to bed with the kids (well, I fall asleep reading to them) at about 7.30pm twice a week. The rest of the time I go up at about 10.30 and sleep till 6pm.

As long as I don't drink, watch too much TV and make sure I have at least two long nights sleep a week, I seem to be ok to work.

How much sleep do you need and what level of Keppra are you on?

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Hey,

I don't know if sleep was a trigger here also, but my first ever boss was epileptic. He worked full time, and wore a medialert id tag.
He had a sinecure during my first week (and I should have asked him as soon as I clocked the tag, but didn't - I found out mid seizure what it was for) but it never stopped him doing anything other than having a driving licence.

Good luck with your job search. Is there anyway you could get a desk based job. Would that make things less tiring. Would screen time cause issues?

Could you top up your wages with a second PT job, which you could quit if it got to much, leaving you with the fall back of your current role?

Hi all thank you for both your replies. I have been getting a bit over emotional about it lately but desk job yes i would like. I live in a small seaside town though so there is just huggee amounts of care work which just wont suit me.

Im on 1000mg a day. I need a good 9 hours sleep tp feel ok but i have found keppra makes me take ages to get tl sleep and i wake a few times a night?? Maybe i need to up the dosage to stop these weird twitches i get every so often.i felt terrible on boxing day (ds got me up early and xmas day excitemwent) i had to call in sick to work and get his grandparents to watch him so i could rest!

Yeah janz is jme. I dont have much experience in office but i do think ideally this would be best locally!

Is there an office based admin role that is required for your current job?
You have care / nursing experience, I think, so could you be a Dr receptionist, or the person in the office answering the calls from people enquiring about care options? So something linked to what you know, but less physical?

Yeah like a receptionist at a dr surgery?? I have just looked on nhs jobs and theres an admin job going at a hospital not far from here so i have applied for that. My current job is a joke. They advertised internally for a cashadmin job (and cash admin was my last job!) I asked to apply to switch roles and they didnt even intervie me! Was so angry so given up with them and looking elsewhere. The nhs seems good to as it soundsdaft but i would feel more comfortable talking to them about this!

I am a first aider at work. I have never had responsibility for anyone with epilepsy, but do have 2 diabetics (one not very well managed) and a severe nut allergy sufferer.

There is a risk in your first aider not being aware of your problem as this could impact on your care if you do have a seizure.

Please consider discussing your condition with the first aider, it should be kept confidential by them.

Yep, exactly.
Great work finding something to apply for already! keep your eyes open. Stuff like that must come up all the time.
Good luck with your application.

Hiya mikki we actually dont even have a first aider at the mo (bad isnt it) our recent one left and no ones been trained to take her place so ill have to go to manager

Thanks addicted :-)

Have epilepsy work full time
I am open at interview and tell employers I have it and to be honest never had a problem in fact the reverse they have gone out of their way to be helpful.
You definitely need to let an employer know so they are aware if you are unwell at work.
There will be jobs you can't do for practical reasons because of epilepsy i.e working at height or with machinery probably isn't an ideal career choice.

Thanks englightened I think this is the first time since I was diagnosed I have ever really spoken about it properly, think I just buried my head in the sand a bit with it all really, which wasn't the right thing to do. I'd love to return to student nursing one day, it really knocked my confidence having that first ever grand mal before i was due on shift, maybe a few years working full time in an office or something a little more laid back will help me build my confidence. Nursing was really the only job in my life I have enjoyed going to.

I am lucky as I was diagnosed when I was eighteen and now I'm nearly forty so lived with it a long time and been able to come to terms with it, know what I can do and what my limits are. You will get there, it takes time to learn your triggers, find out what works for you and what you can and can't do. It does get easier! Sorry you had to sacrifice your nursing career though x