Help available whist off work

[Itr786]

Hi everyone,

I'll try keeping this as brief as I can, but could do with someone's opinion...

I've been off work on ssp (statutory sick pay) for almost a year now.

It all started when I had 2 seizures whist at work, after seeing the work doctor, he put in place a number of restriction on the type of roles I could do whilst at work.

According to human resources/management, there wasn't a role available to fit within those restrictions, so they told me to stay off work until something comes up.

Fast forward 11 months, I've still not returned to work, apparently there still isn't a role available, my ssp completely finish's after 12 month.

I'll be in a serious struggle with my finances to make ends meet after next month.

It's a very large well known manufacturing company, with thousands of employees at the site I work at, so I have no doubt IF they actually made the effort, they'd have found me a suitable job a long time ago, but I get the impression they want me to have all the relevant scans/examinations I'm going through, to have surgery done, and then be able to return to my job 100% fit and healthy... (from speaking to other employees that have had health issues, it's literally that black and white for hr/management)

As mentioned, In the meantime, I've been going through the endless scans/tests to establish if I am a candidate to go down the surgery route for my partial seizures, which are still ongoing.

Could anyone offer any advice on what steps I could/should take to help me through this next period of my life.

Thanks.

 

[masterjen]

What help someone can offer depends on where you live (US, Canada, etc.). If you share that, someone from your area may be able to offer relevant suggestions.

 

[resaebiunne]

I'm not sure if this is particularly helpful, but have you considered searching for alternative employment? It sounds like that is in order at this point, considering what you have been through. I am not sure what line of work you are in, but if I get the impression that you are in manufacturing, there should be plenty of other options where you could find employment (with HR departments that might be more understanding of your circumstances). The worst case is that you find nothing and stay in the position you are in with the circumstances you are in, so personally, I don't see how you have anything to loose by looking outside the box.

Best of luck to you.

 

[Itr786]

Hi,
Sorry, I'm from England/UK.

I've considered looking elsewhere, but considering my current health, I'd find it very difficult to get another job, I've been in my current job since I left college, but had I known I'd be in this position where I was off work for such a long time, I'd have looked into some sort of training course to for a change of career a long time ago, but even if I do now, it would take way to long to consider it now at this stage.
I'll get a better idea if I am a candidate for surgery when I next see my epileptologist, I've been through pretty much every scan/examination in the book, but I'm not even in a position to tell my employers where I am when I next see them on Wednesday for a review meeting.
It's more the financial side of things that I'd need a helping hand going forward, but being such a flawed benefit system, I'm almost expecting them to turn around and say there's no help available, whilst I watch these tv shows and there's soo many bending the laws of the land, and getting so much help.

I'll maybe make an appointment with either the job centre, or pop into the citizen advice bureau and see what help could potentially be available.

 

[Cint]

IMO, surgery should be the LAST option for seizure control, especially since you've only tried a few AEDs. Depending on where the seizures start determines which type of surgery they will do. And there are consequences to brain surgery= memory loss, depression, worsening of seizures. I had a Left Temporal Lobectomy and it only made problems worse for me. I could never get my airline job back.

Good luck!

 

[masterjen]

Hi, Itr786;
There are a few members here from the UK, so I expect they will join in soon and they be able to offer more specific suggestions to you. Good luck, and keep us posted!

 

[Itr786]

Hi Cint,

I have been toing and froing on the matter for some time now.
My meds have been tegretol carbamazepine, lamotrigine, and keppra, various dosages, various combinations of the 3.

I'm currently on lamotragine 200mg (x2), keppra 1000mg (x2).

I realise looking through this forum, and various others just how many different drugs people have tried, and I have put that same question to my epileptologist, to which he's said it's a choice I would need to make when it comes time for it, but that the more meds I try, and am unsuccessful, especially after the first 2, the changes of meds being successful considerably decrease.
Over the past 12 months with all the various tests/scans (mri/eeg/telemetry/neurophysiology test) are some I can remember from the top of my head) I've been having done as I'm aware of how long the process is with establishing whether I'm a candidate for the surgery. In the meantime, I've been going through meds/dosages in the hope I find the holy grail and find one that works, to which (to date) I've been unsuccessful.

I'll have a good idea when I next see my epileptologist as to what my options are going forward.

When your put in a situation where aswel as having to concentrate soo much on your health, you then have such a dark cloud looming over your head like I feel I have at the moment with my employers/finances, it really isn't ideal.
Hopefully I can get to speak to someone that is in a position to give me some valuable advice/information going forward.

 

[masterjen]

he's said it's a choice I would need to make when it comes time for it, but that the more meds I try, and am unsuccessful, especially after the first 2, the changes of meds being successful considerably decrease.

That can be true and everyone is different, but I tried 6 different medications alone and in various combinations before finally finding one that offered significant improvement in seizures. It might be worth asking your epileptologist about other medications you can try before going the surgical route.

 

[Cint]

Hi Cint,

I realise looking through this forum, and various others just how many different drugs people have tried, and I have put that same question to my epileptologist, to which he's said it's a choice I would need to make when it comes time for it, but that the more meds I try, and am unsuccessful, especially after the first 2, the changes of meds being successful considerably decrease.

But again, there is NO guarantee with brain surgery, No going back.

Read this:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/surgery-expectations

What should a person and their family expect from epilepsy surgery?
It is critical for the patient and family to have realistic expectations of the results of the surgery. Here are a few things to consider.
After surgery, some patients become completely seizure-free and some have no improvement at all.
Many people fall between these extremes, having fewer seizures or seizures that are less intense.
Some people may be able to lower or simplify their medicines if seizure control improves. People who become seizure free after surgery may be able to come off medications if they are seizure free for a number of years.

Over the past 12 months with all the various tests/scans (mri/eeg/telemetry/neurophysiology test) are some I can remember from the top of my head) I've been having done as I'm aware of how long the process is with establishing whether I'm a candidate for the surgery. In the meantime, I've been going through meds/dosages in the hope I find the holy grail and find one that works, to which (to date) I've been unsuccessful.

I've tried 12 drugs over the years along with brain surgery, all to no avail. At least with meds, they don't steal your memories forever and effect your speech. Check this out:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-surgeries

Mine was a Temporal Lobectomy (Left). I'm in the 10-15% of NO improvement.

When your put in a situation where aswel as having to concentrate soo much on your health, you then have such a dark cloud looming over your head like I feel I have at the moment with my employers/finances, it really isn't ideal.
Hopefully I can get to speak to someone that is in a position to give me some valuable advice/information going forward.

Well, all a dr. can do is give you their book knowledge, not personal advice. I was in a situation where I had to deal with a dark cloud looming over my head and two kids had to deal with seeing bad TC seizures while growing up because the surgery only made them worse.

 

[Itr786]

Thanks for your input Cint, appreciate it.

My partial seizures are from the right temporal lobe (or so they think).

How many different meds had you tried before you decided to have surgery done?

How clear was your Specialist on the risks/success rates etc... before you decided to have it done?

From speaking to my epileptologist, the outline of it is basically...

1) After 2 different drugs, there's a slim chances of any further meds working,

2) He's written in one of the reports that the chances of being 'seizure free' after surgery would be between 70-80%.
I'm not sure how accurate that is, whether it's a conservative/realistic/optimistic figure, It would obviously be from his experience over the years, but as I've learnt since being diagnosed, everyone's different, everyone reacts differently with different meds, so I can only presume the same would apply with surgery, so I was surprised when he even put a (reasonably high) percentage for success after surgery in the report.