Hello Everyone, new to the forum.

[jmac]

Hello,
My name is John, hope I am on the right forum here as I suffer from Myoclonic Jerks pretty bad, started with a restless leg one night and by the time I visited my GP next morning my whole body was jerking and I had lost my speech, cutting long story short been managing for past 5 years taking gabapentin and when bad just upping dose, well 3 months ago at work it kicked off bad and I am now on keppra 1250grms clonazipan 500grms, gabapentin300grms all twice daily but to be honest it is not getting any better but I need to go back to work this week and am dreading it as I know my boss will not be happy if he see's me jerking again (he is a great boss just cares about me). I am 60yrs old but need to work as still have mortgage etc, I live in England. Any info would be great.
cheers John.

 

[Crash]

Hi jmac,welcome to CWE.Yes your on the right forum,"We cater for all types off seizure disorders!".But seriously,everybody is friendly around here and im sure someone will come on shortly and give you some info.
I wouldn't imagine the stress will be doing you any good,it's a major trigger for many people,myself included.But i suffer from different seizures and am on different drugs,but im sure there are plenty old threads on the subject for you to look at.

Welcoe again John,hope you stick around.

 

[Janus]

Hi, Welcome. And ditto what Crash said. I have keppra 750 mg 2Xday. And others for blood pressure and depression etc. It sounds like a hard place to be in now for you. I hope the meds settle in (how long you been on this dose?). You will see lots on here about finding the right dose/right med to help you and not too much side effects. It is great that you came on board and it is good to keep in touch with us all about what works for you. Hope you come back.

 

[jmac]

Thanks for quick replies, to be honest I have talked my GP into letting me go back to work but it will depend on occupational health doctor from work I am seeing on Tuesday. I take blood pressure tablets, statins, etc 7 in all, My biggest worry is if it doesn't stop I would have to give up work or work would finish me, I have it everyday as soon as I relax, legs, torso, neck, so it gets pretty tiring, I have sleep apnoea and wear mask for this at nights and had a mini stroke about 6 yrs ago, I am ok if I keep busy. I tend to make grunting noises when I get thrown forward but doctors have explained to me its my diaphragm pushing air out and I cannot stop it. I have just been for some electronic tests last week, as far as I know they were to measure the length of time messages from my brain take to get to different parts of my body and to try to narrow down where the fault in my nervous system is. Not sure how this will help me. Had lumber puncture and scans when it first started. Does anyone know if I would be entitled to any benefits if worse comes to worst and I end up out of work, I would most likely end up having to sell the house, which obviously I would hate having to do as the wife's mother lives with us (83yrs old) and I feel I am responsible for it all. Besides this I feel fine and still manage to enjoy myself with grandchildren, if the jerks stopped I would be a fairly fit 60yr old. Hope I am not rambling on to much as know there is many worse than me. Its just nice to be able to get it of my chest. cheers everyone.

 

[qtowngirl]

welcome jmac
first and foremost, don't feel bad. 'i feel i am responsible for it all'... you're not. we didn't ask for epilepsy and can only do our best to control it. the guilt is solely a negative and the stress it brings can cause a seizure at any time. i have found for myself, and read for many other sufferers on here, that the best feeling to give yourself is 'i do what i can.' the strength E requires from us is so massive that not only is having it not a fault, but shows how vigilant we can be, to make our life and the lives of our loved ones better. sounds like you got a good handle on that

also... have you given any thought to working for yourself? something home-based so that you deal with the seizures in much more of a comfortable environment. some of us on here are self-employed and trust us that it's been a huge positive. just food for thought.

 

[jmac]

Thanks, everyone for your replies and your thoughts, I will definitely try and take all your advice and put it to use.
cheers everyone.

 

[jmac]

Thanks, everyone for your replies and your thoughts, I will definitely try and take all your advice and put it to use.
cheers everyone.

 

[dbrim]

Jmac that sounds pretty hard, I'm living in the uk too and I'm not really sure about provisions as far as disability or inability to work goes, I think there is a basic level of support which isn't much and then after that it goes on a case by case basis.

As qtown said above, if you really aren't fit to go back to work then there are many options for working from home, even doing PA work and taking calls, or proof reading and copy editing. If you are struggling with the thought of going back to work then this will only serve to make you worse, stress is a big trigger for myself and I know a great deal of others on this site and I can't imagine how tiring this must be for you.

Maybe get hold of someone at jobcentre plus and see what their opinion is on options for benefits and if they have any suggestions as to any other work possibilities. Does your job allow any kind of working from home? Maybe spending some time at home and some in office would take away some of the stress?