Newb

[Kemetic-Dragon]

Hey, my name is Jessica.

I was diagnosed with Epilepsy in early 2011 after having several tonic-clonic (still learning the proper names of all these!) seizures and partial seizures where I had kept having what I dubbed "time-skips". I would do things but had no memory of doing them. At this time I wasn't too worried about it, the tonic-clonic seizures where not severe and I was conscious throughout them, and until the specialist told me I never figured the memory issues was abnormal, well not for me anyway.
I had some tests which didn't show any proving results, but I was given Tegretol which until recently has worked great. My specialist said he didn't want to put me through anymore testing unless for some reason the Tegretol failed...

...which it has. It's been over a year later and my Tegretol is no longer stopping the seizures. In fact they seem to be getting worse.
I get partials all the time and tonic-clonics roughly every day or so. *sigh*
I do plan to get to a specialist but I have just moved so I have to find a doctor first! So everything is up in the air until I can get everything organized, which isn't easy when I keep forgetting everything and anything. I swear, I put my hair brush in the same spot every afternoon and yet still can't find it nearly every morning, what's up with that? Derp.

I may mention I also have Fibromyalgia, which really is no help at all. I sometimes wonder if it contributes to a good deal of my seizures as every time my aches and pains are bad, so is the epilepsy. :/

Well that's about all for now. I'm a bit shy but I do like comments and such, I just take my time to reply sometimes. I swear I'm not a snob! XD


As a last request though, is there anyway to change the background colour here? I am having trouble reading the text. If not it's ok, I'll manage. Thanks.

 

[CQ:)]

Hi Jessica,

Welcome to the CWE, you'll find out some great information here.

If the Tegretol isn't working for you, when you do find a neurologist they may look at either changing your medications or adding another medication onto the Tegretol.

I also take Tegretol which I've been on since 2002, I couldn't get my auras & complex partials under control with just Tegretol so in 2004 my Neurologist added another medication. Since then I've been on at less 2 Anti Epilepsy Meds to help control my seizures, I've tried 5 different AEDs all up but none helped completely control my partial seizures.
I had brain surgery last year to help with my seizures & I am currently over 12 months seizure free. I am still on 2 AEDs Tegretol & Keppra but I am slowly being weaned of Tegretol.

Good luck with finding yourself a new neurologist

 

[LW6279]

Hey Jessica,

I have Fibromyalgia too for about 10 yrs. I was put on Nuerontin (which I've spelled wrong) for 10 yrs and went toxic and was taken off and now have seizures from the medication. I have tried several meds over the years I'm about allergic to everything. So, now I'm waiting to start NB and see if that helps. I'm hoping it will help with the Fibromyalgia too.

 

[Nakamova]

Hi Jessica, welcome to CWE!

is there anyway to change the background colour here?

I don't believe so. Perhaps you can experiment with your monitor's settings to help.

I hope you can find a way to get your seizures under control. Lots of great info about being proactive can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[DadofTwins]

Welcome Jessica!

 

[Bathtub]

Here is a way to change the appearance of the text. It's not great but it works. For one post you can double click anywhere in it, and all the text of that post is selected as if you are going to cut and copy etc - I am now getting white text on a royal blue ground, yours might be different though. To get the whole page like this, use <control (+) A>
However if you do this, you can't then use the buttons such as [reply] etc while you have text selected, need to unselect first ( single click). Like I said, not great, But it's a start.

You could also look at the accessibility options for your machine? I think it's on the control panel. May need to edit this in a minute... Yeah now called Ease of Access, same difference. Can't see what here would help though

Okay here's my second update. Control panel (access by clicking on the Start button) has an option "Internet options", select this to get a big option box with tabs, take the "General" tab and then at the bottom, Appearance, click on "Colours". There's now a new box with a default "Use Windows colours" which is ticked, but if you uncheck it, the greyed out menus for colours are then available and you can choose. Didn't get as far as trying if it works. There are also accessibility options under Appearance (on the general tab) that might help, one is to do with colours. Have a play, you won't break it!

PS I'm assuming you are running a windows/ms environment, as I can't speak apple/mac. But I'm sure there are people here who do, if you need it translating. And you might not have access to the control panel if your main user-account is limited rather than admin status, eg if it's a school machine or mum's, not your own. If that's the case, go ask your IT administrator for guidance.

 

[Krista2882]

the tonic-clonic seizures where not severe and I was conscious throughout them,

Hi Jessica!
You said you're conscious during your tonic clonics... But from what I've always understood, you can't be conscious during a tonic clonic. Maybe you are having complex partial seizures.

 

[Kemetic-Dragon]

Thanks everyone for your warm welcomes! Sorry for the late reply, my internet has been overloaded with people and I couldn't load any pages (I have shared internet with my current housing).

I had some more seizures and ended up in hospital for the second time in a week. It was annoying but I have had some good news out of it, I am now getting a neurologist closer to where I live! I don't know who it is yet as I missed an important call but hopefully I will know soon.

Thanks Bathtub with your help on bg colours, I do use Windows/MS so that's fine. I'll muck around with my setting and hopefully I can find something useful. ^^

@Krista2882 - I'm new to the proper terms of Epilepsy so I have no idea, but that's what the nurses and doctors where calling it when I was in hospital. All I know is I can still hear and see when I have them, I am a bit vague but I know what's happening. Everything does feels "unreal" and kind of like I'm dreaming but I never faint. *shrugs*

@CQ - Tegretol worked really well at first but now it's like I'm not even taking it. I would like to trial something else. Keppra seems to work for a lot of people I have noticed.

@LW6279 - Dunno about epilepsy drugs but I find most meds trouble me, I get irritable when something fails because I know it will take me ages to find something new. Anti-depressants are my worst nightmare, none of them agree with me, one even had the affect that I could not stop laughing at every little thing... it was funny but I was very tired when they took me off it. XD