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Pinky

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Hi. I'm a 28 year old female recently diagnosed with tle.

I've finally found out that I'm not psychic, insane or bi-polar :) I've simply had a good case of simple partials for as long as I can remember. They really are good as well. I think I could almost count the ones that made me feel really bad and anxious on one hand. It's very nice to be able to put a name to it. I really really don't mind the little ones.

The problem started when for some strange reason my brain went a little more haywire and I had 2 generalised tonic clonic seizures within 3 days of each other. I was on a bus on the way to company outing when the first one happened, so pretty much every single person in our entire office building saw me have the fit. Go big or go home right :taz: One of my co-workers let out an extremely girly scream when I went into the seizure (he's still living that one down) and made the poor bus driver think he hit someone.

The medical centre I was dropped off at kept me there for 4 hours and concluded that the seizure was caused by a drop in my blood pressure. I was prescriped several vitamins and told to go to my own GP if it ever happened again. I couldn't believe how guilty they made me feel about having something that was completely out of my control.

Fast forward to the next one, I was at a training session staring at a screen and listening to this woman drone on about something, wishing I could be anywhere but there when all of a suddeb I woke up on the floor. Be careful what you wish for :) I was taken to a different medical centre this time, and gosh, what a change in the service levels.

The neurologist on call did bloodtests, MRI, EEG, EKG... I lost count. Apparantly my right temporal lobe is the cause of the problem. No idea why though. The doc took quite a lot of time to go through the EEG with me. Apparantly there was quite a bit of abnormal activity going on in there when they were doing the test.

He has me on Topamax, just increased the dosage to 75mg, So far so good. The little seizures are still coming through, but that's all good. I can go the rest of my life without another one of those big ones. Apparantly goal is at least 200mg. I have to say I'm not too happy about that. I hate taking medication!! I don't even like taking aspirin for headaches :( I've had some bad side effects, but tonight I feel absolutely great. No dizziness, mindfog or memory problems. I'm hoping it's a case of adjusting to the dosages...

Okey dokey. I think I've waffled on long enough. Thanks for reading :)
If you just skipped right to the end just so you could post a welcome note, I don't blame you. I promise to try and keep it short in future....
 
Hi Pinky - :) Welcome --
That's all for me --- bye now.

Just teasing.....
You had a scary dive into this epilepsy business, didn't you? None of it is fun. But we can adjust, right? I tried to adjust when I was 46. I'm 64 now and still trying - lol

I am glad to hear you're adjusting to Topamax. I do OK on 300 mg per day plus some Trileptal.

And it's great news that you ended up with a good neuro. That's one of the best things that can happen.
 
Hi there

and welcome to CWE, Pinky! And NO, I didn't skip to the end of the post! LOL...

I'm sorry you went through what you did, but I AM glad that you found your way here. Mr B has built us a WONDERFUL home here. There are LOTS of nooks and crannies to explore in this AWESOME home......the Library for research, Speber's Auditorium for your listening pleasure, the Kitchen, the Foyer for introductions, the Padded Room for when you need to Rant and Rave..........

I understand your feelings about adjusting to the meds. But, I'm on 200 mg of Topamax myself......and don't have too many problems with it at all. But I'm on it mainly for migraines......I also use Carbartrol, too for my seizures.

You will find plenty of other friends here, and resources, too.

http://www.coping-with-epilepsy.com/forums/tags/epilepsy+101.html

Check out the above link for a lot of good information. Also, start keeping a journal so that you know how things are going. Things like your meds--when & how much; what and when you ate; TV/video game/computer time & when; sleeping--how much and when........eventually you will start to find triggers/patterns. This will help you and your doctor to find triggers/patterns.

Take care...and feel free to ask questions. We may not be doctors here, but if we don't know the answer, we CAN generally head you in the right direction!

Meetz
:rock:
 
Hey Pinky!

I had to giggle when I got to the end of your post...I thought you summed your situation up well...without being too wordy. :) (and I, too, didn't just skip to the end). ;)

Anyway, Welcome to our "house." I think you'll enjoy the forum. It's filled with sincere, helpful, supportive, and funny people. :agree:

I'm sorry to hear about the recent tonic-clonics. Hopefully, the meds. will help without too many side-effects. Like Meetz said, keep a journal, watch your sleep, your menses, what you eat, etc. A lot of people have good results with seizure control using alternative therapies and lifestyle changes (i.e. more sleep, better/different diet). :e:

Here's a link to some of the info: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Glad you joined us and look forward to getting to know you! :pop:
-Julie
 
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scream :o

Hello, Pinky!
So, you made your office mate scream like a girl, huh? Does he have a baritone voice as deep as Barry White? I also have tle, except it's on the left side & when I have a seizure the signals travel everywhere. One time I was 'zoning out' & afterwards, a teacher was a half inch in front of my face yelling, "Earth to Ann, come in, Ann". Well, I just wanted to welcome you, so c'mon by whenever you feel like it. I promise not to scream like too much of a girly girl...take care, Pinky!;) ~Ann
 
Welcome Pinky -

I am so glad that you found this forum. You will find some wonderful, caring people here.

I myself do not have Epilepsy. I have been a caregiver for a loved one with Epilepsy for over 20 years.
 
Thanks guys. That made me feel all warm and fuzzy inside :) I'm glad I found this forum too. Looking forward to picking your brains.
 
LOL...Welcome Pinky! Welcome to CWE. Never worry about long posts here. :) We're really friendly and don't mind asnwering questions. I'm glad to hear that you got to a good neurologist. As for the med levels...well, nobody likes having to work up to a certain med level. But it is the safest way..and it gives your body and brain a chance to adjust.
 
Hey, welcome aboard Pinky :mrt:

You'll find a whole bundle of great guys and gals on here, who are more than willing to answer any questions - no matter how deep or personal - so simply fire aware when you're ready.

And be careful of the mad ones like me, who always like to twist things around just when you least expect it :banana: :rock:

...oh, and never be afraid to keep on typing, it gives me something to read when I'm sat on the toilet....that is why they call it a lap-top, isn't it ? :roflmao:
 
Ooooooo

ppppppbbbbbbbbbtttttttttt,

TT!!!!!!!!!!

I nearly choked when I read that!:roflmao::roflmao:
 
ppppppbbbbbbbbbtttttttttt,

TT!!!!!!!!!!

I nearly choked when I read that!:roflmao::roflmao:

Meetz....sometimes, you just gotta tell it how it is :rock: .....


.....look at it this way - I see it as a step-up from playing games on my cell :banana:
 
Thanks guys. That made me feel all warm and fuzzy inside :) I'm glad I found this forum too. Looking forward to picking your brains.

:hello: Pinky!

Glad to have you here in CWE, and as for my brain?
Umm - mine keeps getting relisted and sold on eBay
and I kept getting outbid and I gave up a long time
ago! I'm INSULTED! I didn't think my brain was that
bad!

:mad:

Hoped that put some *chuckles and smiles* on your
face today!

:roflmao:

But feel free to roam around in CWE, we've got a bunch
of friendly folks here, Insanity is required, and all of us
here are more than willing to train!

:D

(KIDDING!)
 
*chuckle*

And Brain's good at training!!

:roflmao::roflmao:

JUST KIDDING!!!!

Although, I am looking for MY brain at the moment.........it seems to have wandered away on its own.......:bigmouth::roflmao:
 
:cheers:

Welcome to our home. I thought your introduction was perfect, except for one thing. I wish you didn't have E. Then again, that is my wish for everyone here.

Make yourself at home. Have a seat, rest your feet, and I'll get us something to drink. This is the most comfortable place I have ever found on the web and hope it is for you as well.

As some of the others have noted, pretty much anything can be asked here and it will get an answer. So often, those without E simply can't understand what we are talking about. I had 3-4 minor auras yesterday and even though my wife has stood by me thru 27 years of E, she still had a puzzled look on her face when I described them. That is where this place is so good.

On the light side - I love your name. Their is a funny cartoon in the states called 'Pinky and the Brain'. What a fitting name for an epilepsy site. :rock:

Hope to hear from you soon. Oh and I promise not to scream like a girl.

:cheers:
 
Mmmmmmm

Thanks for the coffee, Buckeye. It's nice and chilly over here.

And PLEASE don't scream like a girl. You might scare your poor wife......:pfft::pfft:
 
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:cheers:

On the light side - I love your name. Their is a funny cartoon in the states called 'Pinky and the Brain'. What a fitting name for an epilepsy site. :rock:

:cheers:

I know the show. I LOVE the show. I really identify with Pinky.. NARF! :D

I used to keep reptiles, and this was always my nick on all the reptile forums I frequented and moderated. It fitted there as well because of the whole mouse is snake food thing.

The other reason for the name is that I tend to do silly things just like Pinky.

Thanks again guys. It's nice to find a place where people understand...
 
Pinky ~ On the light side? On the LIGHT side? I have the lightest brain here .... Twice I've had pieces removed from it.
And ~sigh~ it wasn't all that large to begin with.
 
Hi Pinky,

Welcome to CWE! I'm sure that you'll find a lot of really great people here that are more than willing to answer any questions that you might have. So don't hesitate to ask something that you're unsure of. Although noone here can take the place of your primary doctor(s), chances are, someone here might be going through something similar, or have experienced something similar to you, and be able to offer you some support or advice just when you need it most. I just found this site myself a few weeks ago, and this is a pretty great site with some really wonderful people! -Anne
 
Welcome Pinky!!!!!!!

This forum is so incredibly supportive and informative. I also love your nickname as well. It rhymes with SO many words.

I can relate to your passion for repitiles. I have had lizards in the past. They lived past the usual lifespan. We were constantly obtaining those crickets sprinkled with vitamins or calcium for their meals (yum!). One lizard named 'King Lizard' would hang upside down from the roof of the tank. He was definitely the dominant male. (Poor guy...no laptop or remote like TT!).

My one science teacher had several snakes. Some kids were really scared of them. I found them fascinating.

Anyway, welcome!
 
Welcome Pinky.
Looks like you have met some of the characters that reside here.
Hope you enjoy your stay.
 
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