Hi this post is all over the place

[hotbread]

Hello ppls i've been reading threads from this forum for along time and decided today that i'll introduce myself. I live in perth, australia and am turning 27 i found out that i had epilepsy when i was 24 and i despite all the help from my doctors i still have seizures. i take 2200mg of eplium and 100mg of lamictal a day. i feel so alone and that noone understands i don't know anyone else with epilepsy. sometimes i get so tired of being scared all the time i mean i'm afraid to go out and i know i shouldn't try to handle it on my own but there is noone around that understands my dad used to yell at me everytime i had a seizure and blamed me for not taking my meds i dun blame him because he dosen't know about it and also he has to work alot i can't talk to my brothers because everytime i tried to they just get arkward and try to change the subject i had a girlfriend before and i thought she understood but she broke up with me because of my bad memory, depression and all the other things that come with it my friends are always busy but i don't know if they advoid me because of my epilepsy or not. it would be nice if they just asked me if i wanted to go out with them once in awhile of to even just say hello on msn i mean is it too much to ask? i was also wondering if anyone here suffered from hallucinations coz it seems i've been seeing things lately and i dunno y. i try to put on a smile and act like everything is okie but sometimes i get so upset and i'm so tired of fighting a loseing battle that i just want to sleep forever and the only reason y i haven't done it yet is because i have a little half brother and half sister that still need their big brother. i've recently started studying again i've quit twice before i find it so hard to concentrate and to remenber things that sometimes i don't know why i even bother. i'm also afraid that if i get to dependant on someone for support that they'd just leave me like my ex-girlfriend. I'm sorry this post is all over the place i'm just writing things as they come to mind i thought it might help if i found some ppl who have been through the same thing and understand what i'm goin through.

reguards Stephen

 

[dfwtexas]

Welcome!
I am newly diagnosed and have found a lot of comfort and information in coming here. I have shared my seizure disorder with only a few...and sadly because I don't get much understanding from others. This is a really great place to come learn and sometimes just vent...and everyone here really does understand your feelings.
Jennifer

 

[BuckeyeFan]

:cheers:

Hey HotBread, you have found a good place. I read your post and can relate to most of those feelings. Other members here will be able to relate as well. It is not a fun journey that you are on, but keep traveling, because it makes those good times that much better.

Educate yourself here at Epilepsy 101 and then you will be better equiped to educate your family. With education comes understanding.

Glad to see another member from Australia.

:cheers:

 

[TeeTees]

Hiya Hotbread,

I'll start of by saying a Huge Hello from the UK :tup:

You really are NOT alone over there my friend. This site has become my 'extended family' full of understanding, kind, generous people, and a few mad ones like me :rock:

As Buckeye put : have a good read up on here about others who have EXACTLY the same conditions and 'problems' (which are as much as you allow them to be), and how they have succeeded in life, and coped with the issues that come with it. The more you can become educated about Epilepsy, the stronger you will become.

I've had many a time where I've been full off self-pity and would be more than happy if I weren't to wake up the next day. But you know what ?....I share exactly the same non-selfish attitude as you, and would hate to think about the devastation and destruction I would leave behind within the family, and my close friends. It's just so horrible to think of the pain THEY will all have to go through - I'm sure they'd rather put up with me having sz's, than have to visit a hole in the ground every week or so.

So, heads up, shoulders back, and stay strong - you're worth more than alot of low-life thieving, granny-mugging, child-molesting, paedophiles, murderers....(the list goes on and on and on, but I take it your getting the picture by now).

Anyway, put yer feet up, grab a brew and type away - as for your post being 'all over the place'....that's one of the joys of being on this site ; you just get to understand where people are coming from, and heading to. :hi5:

 

[Bernard]

Hi Stephen, I'm glad you decided to join and say hi. :hello:

I take it the meds are not giving you enough seizure control? Or is the bad memory a side effect of the medication?

Have you talked to your doctor about your quality of life issues to see if there might be another treatment option that would work better for you?

 

[Ann T.]

hello!

Hotbread:
C'mon in! Oh, trust me, you will enjoy it here. We celebrate victories, we mourn passings, but most of all we help each other cope with epilepsy together. I have made friends at this site whom I now consider my second family. Most of all, you are not alone. So, I hope you can join us. Take care! ~Ann *PS: I like your sign in name. Very creative!

 

[Nancy]

Hi Stephen -- wow, do I know where you're coming from!! None of this epilepsy business is good but the wonderful people here can sure make it easier to deal with.
Why, we even have fun sometimes
It's hard it is to deal with some family members who just can't understand so I lean of the people here. I get the help I need. You will too.

WELCOME ABOARD.

 

[seizures4ever]

Hey Stephen,

Welcome to our forum! Glad you finally decided to join us.

This is a great place to make new friends and find support.

Many of us are a little crazy, and some of us have a wicked sense of humor :banana:

Just FYI: I suffer a great deal with memory loss too. Some of it is probably from the medications, but the Dr.'s agree that part of it is no doubt from the non-stop seizures. Just know that you're not alone!

Hang in there. -Julie :e:

 

[RobinN]

Hi Stephen - I don't have seizures, but my 16 yr old does. I know what you are talking about when you speak about Quality of Life. This is one thing that really worried me, when I first began researching the disorder.

We decided to stop trying meds after four of them did not work. So now we are learning to control her seizures, with nutrition, vitamin and minerals for brain support, and neurofeedback. She use to have 6 seizures a month and now she is down to one. I have been doing more research to help eliminate that last one.

I am glad that you joined us. I think you will find a lot of support here in the areas that have been difficult for you. We welcome you, and hope you drop in often.

 

[alivenwell]

Hopefully your home environment and social contacts will improve. We're all here to support each other when that crap happens. This can be your home away from home.

Focus on your little sister and brother. Little kids can be much friendlier than adults. This is an opportunity to educate them about epilepsy. After I had one seizure in front of somebody's kid, that kid was taken away from the scene because the parent didn't want them to see me. Ironically, that kid now has a disorder like epilepsy. And, we have a mutual understanding of frustrations, medications,...

Anyway, try to write a lot of stuff down, keep a pill counter, set alarms as reminders...whatever works for you. Maybe another appointment with your neurologist may be necessary.

Personally, I've been on a higher dosage of Lamictal than you, but I find it has made a tremendous difference without too many side effects. That's just how it works for me. Others have different opinions.

Stress management really helps. Meditation, doing your homework, and staying busy in general are all good for controlling epilepsy.

My active dog demands attention and playtime. She's also extremely sensitive if she senses I'm not feeling well. Besides people on this forum, I have my dog as a friend.

 

[Meetz1064]

Hi, hello,

and how do ya do?

Nice to meet ya Stephen!!!

I LOVE your screen name......ADORABLE!

This is a WONDERFUL place to be. All sorts of neat people, and nooks and cranies to explore in this AWESOME house that Mr B has built for us.

I DO understand the memory problems, and I DO understand the frustration, as do many of us here. It's not easy, but you've got a new family here to depend on. Have you tried making yourself flash cards to help with your studies?

I was on Lamictal, too........and yes my memory really sucked on it. Flash cards helped me then, too. I was on a slightly higher dose, but for a fairly long time. Seven years, actually.

The hallucinations you speak of may actually be another form of a seizure...you may want to start a journal, and keep track of it...and show your doc that journal. Note the times, dates, how long it occurs, what happeens during them, what you've eeaten that day, what you've done that day, etc. OK.......so it's a pain in the arse. But, it may help find the triggers for that as well as your other seizures.

Take care!

Meetz
:rock: