new member still in denial..

[skipperchick]

Hi all,
My first ever post to a forum, apologies if it is long winded... I started having nocturnal seizures (grand mal) 10 years ago when my youngest daughter was born - I am 41. It was a scary time, not knowing what was happening, and living in a small town (Australia) I had to wait 9 months to see a neurologist. He literally gave me 2 minutes of his time and said 'you have had more than 2 seizures so you have epilepsy'. I just couldn't accept it. I went through years of trying different meds, stopping meds because I hated taking them, having seizures, depression, and on top of that having to accept the career I worked so hard for was no longer feasible (boat skipper - have to be seizure free and off meds for a year to work in that role again). I have never seen a neurologist again and have maybe seen my GP twice in that time after a seizure. I do read these posts and see how close everyone is with their doctors/neurologists and worry, and other comments about calling an ambulance if a seizure goes longer than 5 minutes - many of mine have and we never have called an ambulance...
I'm on 1000mg Epilim a day and haven't had a seizure for a year. I know I really am lucky compared to many, many others, with what they have to live through each day, but starting something like this later in life was a real shock, and a bitter pill to swallow.
Just wanted to put it out there, and I'd be happy for any comments or advice

 

[Belinda5000]

skipperchick

I can tell you know one likes having seizures and I was diagnosed when I was 2 50 years ago and some peoplelonger ago than that.I've never been controlled and I'm refractory and the meds can depression and so can the seizures.

If I have a seizures that's life and I've sent my share of ambulances away.
I tried 23 didderent meds and I tried the MAD diet(modifiedatkins diet) because of my irregularheartbeat I ended having a mini stroke.

You need to listen to your neuro and what he says, I'm lucky I have a neuro who doesn'tleave the room till he answers all my questions. You need to go to someone other than your GPlike a neuro I've had bad luck with epileptologist.
Have you you tried going to a univ/hospital see a doctor?

 

[RanMan]

Skipperchick:

You're not alone. First thing you gotta do is find a new Neurologist.

Like you I had my dream occupation stolen from me due to my epilepsy 35 yrs. ago.(Music Teacher and front man for a local rock band) (the Meds actually caused the problems)

Just because you've had more than two seizures, it doesn't necessarily mean that you have Epilepsy, you have a "seizure condition".

I also had my drivers licence revoked due to my very poor coordination, balance and gait.
The way I look at it, it could be a lot worse.

Good Luck ~ Hope you find a good neurologist.

 

[skipperchick]

Thanks for your replies . Unfortunately due to where I live, the neurologist I previously saw is the only one within at least a 500km radius. I did speak to an epileptologist many years ago, but due to my financial circumstances my workmates at the time did a fund raiser to get me there, as I had to fly interstate. He wrote me off too, saying he thought it was just something caused by child birth and nothing really to worry about....
I totally agree that it could be way worse, and really (in a strange way) am thankful that I have nocturnal seizures so that my kids don't have to witness it.
It is a pity that I can't access a neurologist as easily as I could if I lived in a big city, and I'm pretty sure my dealing with the whole thing would have been a lot different if I was able to access medical advice and support at the beginning. I'm learning to live with it, and taming my stubborn side that refuses to accept into submission!