New to epilepsy

[Supra]

Hi folks.
I was recently diagnosed after having had multiple strokes in November '09.
I've lost my girlfriend, most of my friends. Those who remain treat me quite differently. People can be pretty ignorant, eh?

I'm going for my first epileptologist appointment on August 6th.

Anyway, nice to find a place to talk with people who understand.

[epileric]

It's always good to have one more person to share experiences here.

Someone else who just joined was saying that they lost 2 jobs because of seizures. I think most people here have gone through similar things when people have found out about their seizures. I know I have. It can be hard to deal with the more ignorant people but even with people who try to be supportive you might notice a change in the relationship.... their role is more maternal or paternal, you're no longer an equal really.

That can be hard to deal with because most people don't realize they're doing it & they're trying to be supportive so you can't really get angry at them. At least that's been my experience.

Good luck with your appointment on the 6th. Keep us updated as to how it goes. Have you been diagnosed with any particular type of seizure yet (partial, tonic/clonic etc) and are you on any type of medication yet?

Well make yourself at home & see what we got.

[RobinN]

Welcome Supra -
This forum is a great place to receive support and understanding. It is my daughter who has seizures, but I needed somewhere people would understand and help me to cope with what she was experiencing.

Good luck with your doctors appt. There can be a lot of anticipation involved prior, and occasionally lack of understanding after. I hope you have a positive experience.

Glad you joined us.

[Supra]

I feel more like they are afraid of me. Two people already plotted to Baker Act me!
They felt I was a danger to myself.
I may have been as I had five seizures where I had no idea what I was doing.
But I didn't even live here then. They don't know about that.
Needless to say I have written them off.

The 6th will be my first diagnosis apart from my GP's insistence to see a specialist. I'm currently on 100mg Dilantin but I feel it only helps a little.

Thanks for being here.
And thanks Robin.
JD

[RobinN]

JD-
My daughter's seizure activity began prior to High School. It made everyone on campus very nervous. She was trying out medications and most people just viewed her as a mixed up kid. A difficult time for all of us.

After four years I have learned so much from doing my own research and not viewing those in white coats as God. Many are just guessing and the more knowledge you have about your situation, the better off you will be.

[Nakamova]

Hi Supra, welcome!

I hope the specialist can help. I recommend you write down any questions you have, as well as many details that you can about the seizures you've had. It will help in getting the most out of your appointment. It can also help if you have someone go with you to take notes.

The Dilantin dose seems low for a seizure disorder (most folks are at 200 and up), so it's possible the specialist will recommend an increase in the dose. If you've noticed any side effects so far, make sure you let the specialist know about them as well.

And keep us posted! This is a great place for feedback and support, and if you feel like venting about the bad stuff, the Padded Room is perfect for letting it all out.

Best,
Nakamova

[Ann T.]

Greetings, Supra!

You have found a most superb support system here at CWE (Coping With Epilepsy). Feel free to ask questions & check out the rooms Bernard has built for us in his mansion. What are your interests? And, I hope your appointment is successful. Like Nakamova recommends, write down any questions you may have before your appointment & what your seizures are like, and definitely keep us posted. Take care, Supra & keep in touch! :-)

[ddr1166]

Hello, Supra - hang in there! My husband is in his 40's and he's had three seizures (first time ever) since January. He's on Keppra XR @ 2000 mg/day. I know what you mean about not understanding. In our case, we seem to have two extremes: people that care too much and people who don't get it. Unfortunately, unless they see it happen, they just really don't seem to understand (in my experience). Let us know what the doc says - sounds like you're in good hands. Cheers, D

[Chris515]

Hi folks.
I was recently diagnosed after having had multiple strokes in November '09.
I've lost my girlfriend, most of my friends. Those who remain treat me quite differently. People can be pretty ignorant, eh?

I'm going for my first epileptologist appointment on August 6th.

Anyway, nice to find a place to talk with people who understand.

Welcome Supra!

CWE is a great place, it has helped me so so much. Plenty of caring understanding people and a lot of advice and information. There is always someone to help when you have a problem or just to listen when you feel like ranting.

Good luck with your appointment, keep us posted on how it goes!

And you're right, people can be ignorant. I've had people stop talking to me when they find out I have epilepsy as it 'weirds them out'.

Chris

[Bernard]

Hi JD, welcome to the forum.

Make yourself at home here.

[huskymom]

Hi Supra!

Sounds like you have been able to lose some dead wait out of your life!! Anyone who calls themselves "friend" and then leaves you high and dry when you need them, I say adios! You will find much better people who will stand by you no matter what.

Please let us know how your appointment goes.

[gigi]

Hello Supra -

Welcome to your online social circle. This is a hard disorder for people to get a grasp on. Having had this for a little over 40 years, I think that is why I still am somewhat of a loner, even though everyone has problems. This particular disorder just still seems to put us in the burn ya at the stake category. I still have a hard time "sharing" myself. My avatar picture is me, but ya can't recognize me. I did grow up in a family that was hell bent on the image thing, as though my seizures were a character weakness. I do get tremendous support from my immediate family. Close friends are among the very few. Hope you like it here at CWE.

[Supra]

Thanks Gigi. Yes it can be quite lonely.

[mel239]

Hi Had a stroke June 2008,Am a single mom--lost my job,retirement,house,cant pay credit cards,etc... You name it,its happened to me-things do suddenly get better-after 2 years of hell-things looking up-please keep me informed--im right there with you on what a sudden diagnosis can do to your life-I still teeter on the edge - I cant believe all my misery should be for one person--but Im still here and I will be here for you if you want-sincerely,Melody

[Supra]

Thanks Melody. I know how it feels to lose everything. The only thing that comes to mind is that it sucks.I've been updating here- First Epileptologist Visit.
In the Kitchen.