Hello and welcome to my first post on your forum!

[BRTN]

Hi,

Good to meet you :woot:

I am new to the forum, so here's a little bit about me and my epileptic journey (if you like).

I am 23 and have suffered from epilepsy since I was 17 years old. This made me struggle through my A-Levels but somehow managed to secure a place at university.

I was mostly fine throughout my university life, without any worry or problem with my epilepsy - looking back on this now seems to be a bit of a god send!

I was first diagnosed with nocturnal epilepsy and spent weeks and weeks in hospital due to the strange state of my condition. The nocturnal attacks could be controlled, however this somehow caused me to develop severe, consistent simple partial seizures (hundreds per day) with no apparent reason why.

When this was finally controllable I began to suffer from quite bad anxiety... I'm sure you all know that anxiety + epilepsy is a recipe for disaster. Even though I managed to get through my university years, ever since leaving and getting a job, developing a staple routine and healthy lifestyle I have struggled with anxiety and simple partial seizures a lot.

Biggest symptom seems to be the feeling of falling throughout my body - y'know, the toe curler that you can't control. I remain conscious, but i'm not sure that's a good thing...

I am in a bit of a downward spiral as I have to rely on quality sleep for these not to affect me, but my job doesn't require this - I'm not sure many jobs do. So without a great night sleep I begin to have simple partials at work - not ideal. This often leads to me being physically unable to work or sit in front of a screen, so I have to go home sick. I'm about to lose my job as this has happened too often and it is about to turn my life upside down!

I take Tegretol (400mg morning/600mg evening).

Does anyone have any advice on how I can control these kinds of seizures? 99% of the time, they do not result in to anything more, but they happen frequently enough to disrupt my everyday life to the point where I can't bare to stand it anymore.

I appreciate any advice you guys have.

It's a pleasure to meet you!

Edit: When I do suffer from an attack during my sleep, I ALWAYS bite my tongue which leaves it nice and swollen accompanied by a horrible taste in my mouth all day for the next 1 or 2 days. This taste is very bitter and feels like I have cotton wool in my mouth. The only way to get rid of it is to sleep it off for a good 10 hours or so, too!

 

[SlimBlue]

Hi BRTN, welcome

I've been under threat of losing my IT job. I was amazed I managed to get it in the first place, and I've been scared hitless at the thought of losing it, so I feel for you there.

It is very much a downward spiral sometimes- and the extra stress of probably losing your job just makes it even worse.

My only advice is if it's got to the stage where the stress is causing too many episodes, consider taking a break if it's possible instead of the boot.

Many places have a decent long-term sick leave plan. I've just been accepted by my company's insurance (after a 7 month wait during which I had to take out a loan to get by). It's not an easy route, and you'll need to have a bit behind you to do it.

You only get 75% of your salary (minus incapacity benefit which you can claim) but it certainly takes the stress off for 3 months at least (it comes into effect after 13 weeks off sick, but will no doubt take longer to set up).

It's worked wonders for me, and the multiple fits per week caused by financial stress and fear of being sacked have stopped. I know I can't afford to keep on it as 75% is pathetic, so I'm looking round for a better paid, less stressfull job.

I should have moved on ages ago, so see it as a chance to get a better job after a small convalescence

 

[Treu Rivers]

With my nocturnal seizures, I have found that stress is the leading culprit for any type of seizure I have.