New to the forum and owning the diagnosis

[breezynosacek]

Hi all,

I'm finally working on owning the diagnosis. Still having a little difficulty with it because of all of the stigma that was associated with it when I was growing up.

Seriously, my first knowledge of epilepsy was my stepfather coming home talking about the 'demon possessed man' that they had to hold down.

My second exposure was my cousin who had diabetic seizures and that wasn't pretty either. I was with her by myself when it happened and it scared the tar out of me.

My third exposure to seizures/epilepsy was a man who was all banged up from grand mal seizures and he was talking about all of the problems he'd had with it and they took his drivers license away.

So, to make a long story short, I was in the midst of dealing with my alcholism and child abuse issues and my therapist sent my to a psychiatrist who told me that there was nothing wrong except that I was having 'mini seizures of the brain' and some associated anxiety.

This was the second doctor who diagnosed me that way and I told him that the first time was a nightmare and that the guy had given me tegritol and it had sent me to the emergency room all seized up like a pretzel. I had gotten to the point that I was having difficulty breathing by that time. They pumped me full of benedryl and sent me home.

So this doctor gave me the generic for it and the same thing happened again. I called him up and cussed him out. He said maybe I should find another doctor.

I believed that because the medication caused a visible seizure, something that I could actually percieve myself that these guys were both quacks and that I didn't have epilepsy.

I met a guy in an AA meeting the other night and he told me he had grand mal seizures and that tegritol at too high a dosage did the same thing to him. He sucks the pill for a little while and spit it out and he was okay.

So, I did some research all last night and it seems to me that for the past 20 years of being diagnosed, they may not have been completely wrong but it may be that they missed the mark a little bit.

There are other symptoms that I have been having that make sense now and I'm wondering if I should go to the doctor at all and risk having my drivers license pulled.

Steph

 

[Bernard]

Hi Steph, welcome to the forum. :hello:

Watching my wife (girlfriend at the time) have a grand mal seizure was my first exposure to seizures/epilepsy. It was disconcerting, but she had prepared me for it, so it didn't freak me out.

Finding the right mix and/or dosage of AEDs to control seizures can be a long road of trial and error for many. Are you having uncontrolled seizures without meds right now? If so, you are taking huge risks if you don't seek control. The seizure patterns can get worse.

 

[breezynosacek]

Thanks Bernard for the welcome.

Yes, I am pretty much unmedicated and uncontrolled right now. However a friend recently gave me an herbal Gaba-calm and I discovered last night that Gabatril is also a medication that is prescribed.

Most of my seizures, at least the ones that disturb the living daylights out of me are nocturnal.

I'll be drifting off to sleep and feel like something inside my head bangs against my skull or something and I'll jerk once or twice. It really bothers me when it occurs rapidly. I've explained that feeling to people before and they look at me like I'm weird, LOL.

I have some memory problems which really aggravate the tar out of my hubby. I'll ask him several times for the same information and he'll finally get exasperated and tell me "I've already answered that question 4 or 5 times today!" I don't remember.

Also, stating the beginning of a sentence several times and not finishing it.

The one that has scared me the most that I didn't realize could be epilepsy related was when I am driving. Now I've driven the same route over and over again and occassionally, I'll feel like I just suddenly come awake on the road and forget how to get where I am going. If I pull over, I'll remember eventually. Sometimes it is quickly, other times it can take up to half an hour depending upon how much anxiety the 'forgetting' is causing.

I've thought I've lost my balance for years. I've fallen over, fallen down short flights of steps. Dropped things. I've broken my toes so many times it isn't funny because the furniture seems to be further away than it actually is. And of course, at times, I seem to be staggering suddenly and then it clears up.

My sleep patterns have been messed up my entire life and while discussing this this afternoon, my hubby made a connection for me.

He said "the body has two types of electrical circuits. It's sort of like having two different types of alarm clocks. Mine is computerized and yours isn't. If the power goes off, mine had battery backup and keeps the proper time. If yours goes off, when it comes back on it's a couple of minutes short unless you reset it. You are the second type and you can't reset your clock but each time the power goes off, your getting behind."

He was an EMT when he was younger but it made perfect sense to me.

So in a way, there is a lot of relief but in another way, its like in my face now and I have to deal with it.

Steph

 

[Nancy]

Hi Steph - Sorry you're here :wink:
I hope you find some meds that work to control the seizures. The best way for that to happen is if you find a neuro who specializes in epilepsy.
Best wishes

 

[Bernard]

Most of my seizures, at least the ones that disturb the living daylights out of me are nocturnal.

I don't think so.

I have some memory problems which really aggravate the tar out of my hubby. I'll ask him several times for the same information and he'll finally get exasperated and tell me "I've already answered that question 4 or 5 times today!" I don't remember.

Also, stating the beginning of a sentence several times and not finishing it.

The one that has scared me the most that I didn't realize could be epilepsy related was when I am driving. Now I've driven the same route over and over again and occassionally, I'll feel like I just suddenly come awake on the road and forget how to get where I am going. If I pull over, I'll remember eventually. Sometimes it is quickly, other times it can take up to half an hour depending upon how much anxiety the 'forgetting' is causing.

What you are describing is (multiple) absense seizures during the daytime. Stacy used to have these as well. You should not be driving until these are controlled.

Stacy has not had any of these in over 8-10 years now (sorry, I just woke up and don't feel like doing the math to be precise) since she finished 5-6 months of EEG neurofeedback training.

You should get your husband to read up about absense seizures and he will be able to recognize them when they occur (once he knows what to look for).

 

[breezynosacek]

Most of my seizures, at least the ones that disturb the living daylights out of me are nocturnal.

I don't think so.

I have some memory problems which really aggravate the tar out of my hubby. I'll ask him several times for the same information and he'll finally get exasperated and tell me "I've already answered that question 4 or 5 times today!" I don't remember.

Also, stating the beginning of a sentence several times and not finishing it.

The one that has scared me the most that I didn't realize could be epilepsy related was when I am driving. Now I've driven the same route over and over again and occassionally, I'll feel like I just suddenly come awake on the road and forget how to get where I am going. If I pull over, I'll remember eventually. Sometimes it is quickly, other times it can take up to half an hour depending upon how much anxiety the 'forgetting' is causing.

What you are describing is (multiple) absense seizures during the daytime. Stacy used to have these as well. You should not be driving until these are controlled.

Stacy has not had any of these in over 8-10 years now (sorry, I just woke up and don't feel like doing the math to be precise) since she finished 5-6 months of EEG neurofeedback training.

You should get your husband to read up about absense seizures and he will be able to recognize them when they occur (once he knows what to look for).

Okay, what did you mean by I don't think so???

I haven't been driving in a long time.

Steph

 

[Bernard]

I meant that the absense seizures are disturbing you plenty (during the daytime).