Finally Saying Hello

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Addie

Addie

New
Messages
12
Reaction score
0
Points
0
Hi,

I registered a few months ago, and never got round to saying Hi.

I'm Addie. I'm rubbish with things like forums and I never know what to say so I may just keep typing and typing.

A bit about me: Well, I'm 19. I dance, not very well but I try. I'm a receptionist at the local leisure centre. I was training to be a Mental Health nurse but have put that on hold for a while. I'm a Scout Leader for a local group and that's about it really. I have dyslexia and dyspraxia and I'm known to be a serious perfectionist because of this.

A bit about my epilepsy: This is where I might not be very clear. I'm fairly new to Epilepsy. I've always known about it, but never experienced it until April 2008. I started having what we now know to be seizures whilst I was doing a show at the local theatre. Paramedics were called one night because whatever was happening to me at the time could not be controlled, and wouldn't stop. When the paramedics turned up the said that I was stable and didn't need any hospital treatment, so I was taken home. So when the same thing happened the next day my friends took me straight to A&E where I was admitted straight away and monitered over night. In the morning I was told I would be referred to the Neurologist and also be sent for tests as soon as possible.

These seizures continued to happen so I kept going back to my doctor who said I had to wait to hear from the Neurologist. I had ECG's, EEG's, MRI's, Blood Tests, Urine Tests, and god knows what else, but never found out any of the results.

I finally got to see the Neurologist in October 08, who after less than 5mins talking to me said I had epilepsy and was sending me for further tests, and that was it. I've had more MRI's and ECG's and EEG's and blood tests and I'm now waiting to go back and see the Neurologist, which has been scheduled for January.

With regards to my seizures: I have absolutly no idea when they are going to happen, what causes them or anything. I've tried making a diary but there is no pattern and to be honest it happens so often I just forget now. I have had many Grand Mal (what are they called now?) Seizures as well as mini, almost like fainting, type seizures.

So basically, I don't really know what's going on with me right now, and all of this is really scaring me.


But now I've said hello I feel a bit better :hello:


Addie
 
Welcome Addie. You've come to a great place for support and information. Hope you get it all figured out soon!
 
Id'like it will be not necessary to say ''STAY WITH US'' :D , but you are with us aniway I think, so, stay with us ;)
 
Hiya * and welcome *

A journal a great tool. You will do fine here and are in good company*

joan*
 
Wow cup of coffee aswel, that's great :)

Eric, I did just have a look at that page and I found it really amazing! It was so helpful so Thank You Very Much!

Also, Wanted to wish everyone a Merry Christmas :xmas:


Addie
 
HI Addie!

Welcome & a Merry Christmas to you too!

I hope things get sorted for you soon! Take great care & hope to hear from you again soon!

Dispatch-:)
 
Welcome!!!!!!

Some of us find humor and smart remarks a good way to copy with this disorder. Actually, education of others is a better method if we find open minded people...a challenge with limited mobility such as a lack of transportation.

I hope your treatment of epilepsy straightens out your seizure control. The side effects of medications sometimes can be nasty at first until you adjust to medication(s). Try to be patient. But it sounds like your physical exercise in the form of dancing may be a great stress buster. That really helps. My border collie takes me for a pretty brisk walk/run every day. That's my exercise and stress buster. She is my physical trainer. And to think some people pay for them.

Actually, I am also a perfectionist as well. It may help you count out medications and take them on time. I set alarms on my cell phone, watch or computer to take all medication exactly as directed. I write down how I'm feeling - whether I'm stressed or feeling sick. Both are factors with epilepsy in general.

Frankly, I'm better off when I'm busy. So far, my employer has accommodated this. Some people are not as fortunate.
 
Last edited:
Hi & Welcome Aboard, Addie,

Sorry to hear of your unfortunate circumstances. :( But you have found the right place to come to and "pour your heart out" when you need to. I hope the doctors find the right answers for you.

Cindy
 
Hi Addie, welcome to the forum. :hello:

I'm glad you introduced yourself. :)

Addie said:
... With regards to my seizures: I have absolutly no idea when they are going to happen, what causes them or anything. I've tried making a diary but there is no pattern and to be honest it happens so often I just forget now. I have had many Grand Mal (what are they called now?) Seizures as well as mini, almost like fainting, type seizures.
Click to expand...

Grand Mal = Tonic Clonic

if you are falling to the ground with the "mini" seizures, they could be atonic (aka drop attack) seizures. I recommend you spend a few minutes reading about the different types of seizures. You may discover that you are experiencing other types (like simple partial seizures) too and the more information you can give the doctors, the better they can help you.

FYI, you can do a lot of the simple things outlined here right now and see if they help: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
Hi, Addie. Welcome to CWE. I think you'll find this is a great place for information about types of seizures & epilepsy in general. I've learned more here in the past 6 months or so than I ever learned from my neurologists over the past 7 years! I hope you can find a regimen, whether it's medications or alternative treatments that work to get your seizures under control.
 
Welcome Addie - My daughter Rebecca is a dancer too (as well as a figure skater).
She started having seizures when she was 14. She is no longer on meds and we are controlling it with a variety of methods... nutritional changes, supplements, and neurofeedback.

I hope you find some good information here, to support you at your appointments with your doctors. I found when I was knowledgeable I was able to ask more informed questions and the doctors did not gloss over the answers.
 
Hi again everyone.
Thank you for your lovely welcomes :)

I find dancing is fantastic to get rid of some stress, I get so lost in the music and it's like three or four minutes where i'm not worrying about what could happen next. And you get to dress up in great dresses and have a good looking guy spinning you round :p

I read over some of the paramedics paperwork and did find a mention of drop fits, I'l definatley be forcing all that info down the Doctors throat in a few weeks lol!

I do want to say thank you, I've been looking on here for just a day and already i feel like i've learnt so much! You are all so lovely and caring :)


Addie
 
Hi, hello and

how do you do, Addie? I have a friend by that name.......LOL

Welcome to CWE! As you have discovered, we are quite the friendly bunch here. Lots of friends to make, things to see, nooks and crannies to discover, thanks to Mr B.

Check out the different threads that the others have suggested. They are very good reading.

Stick around, put your feet up, and enjoy the coffee. I'll bet Eric makes just as good as coffee as Buckeye does. Just DON'T ask any of the guys about BRATS AND BEER. They will want you to wait on them hand and foot.:roflmao::pfft:

Take care~!

Meetz
:rock:
 
Mega Update

Umm, Hi Guys!
I vanished off the site for a long time. I'm really sorry, especially after all your lovely welcomes.
Things have moved on so well now for me.
It took my neurologist over a year to finally help me. I was left with nothing to go on from my first meeting with him in October 2008, to September 2009.
I obviously wasn't allowed to drive, my employer made me feel like I was the devil and all the staff turned on me because I had a seziure at work, and so I left.
I got into the Outdoor Education industry and both companies I worked for in 2009 were fantastic. They allowed me to do everything a 'normal' instructor could do, including rope work (climbing etc).
As soon as I told my Neurologist that the situation I was in was affecting my life (using those exact words) as I couldn't drive, and didn't know how I could carry on with my life, he said that I was to start taking Lamotrigine to control my seizures.
Now I've never actually been told the 'type' of epilepsy I have, but to be honest with you, I don't really care.
I fought against the DVLA (the people who control driving licenses in the UK) for 9months to get my license back, as my Neurologist said I was fine to drive, but the DVLA sat on the paperwork for too long.
I am now a trainee assistant store manager of an outdoor clothing store, starting an NVQ tomorrow, living with my was boyfriend, now fiance, and I have been without seizures since November 2009.
 
That's great news!

Which neuro do/did you go to? I live in Blackpool but my Neurologist is in preston. Getting results from tests etc off them took FOREVER!

So the Lamotrigene works well for you then? I had real problems on it, even when they changed it to the brand name Lamictal >.<

Hope you're well :rock:
 
You must log in or register to reply here.
Back
Top Bottom