Big day tomorrow

[graceface]

So...

Ive been stuck in an aura for the last 7 days, i have had an endless list of awful things going on, headaches, nausea, dizziness, stronger waves of pre-seizures, unable to stand up (and a whole bunch more) total dysfunction! I'm articulate and can function if i lie down hence the computer usage...its like my brain works but my body isn't. The last week has been a ton of drama i went to emergency got sent home after tests and told to see my gp, soon as i saw him he was worried, so i had to have brain scans done and tomorrow i see my gp for results and the next move. I'm nervous cos even if there isn't blood in my brain or any other big brain dramas this aura is still here. I'm going to have to go on medication of some description (I'm not on any at present) I'm worried about side effects and things changing my life. scary day tomorrow so cross your fingers and toes for me that its ok, well as good as it can be....

- G

 

[Silat]

Keep us updated!
Just stay relaxed and deal with things as they come! Nothing wrong with being on medication either, just find ways to adapt and stay positive about the whole thing!

(Side note: I tried, and can not successfully cross my toes.)

 

[Nakamova]

It's normal to worry and feel a little scared, but I think you'll feel a lot of relief when you have more information about what's going on, and can make a plan with your doctor to treat it.

Fingers-crossed! Toes too! Eyes too!

 

[JustcallmeG]

It isn't weird to be scared about something like that. Don't worry about side effects, medications... just worry about getting through today, and let tomorow land where it must. Weather you have to be on medicine, or you don't... you will make it work, goodness knows there are plenty of people on here for support, and advice to keep any side effects down to a minimum. I will be thinking of you, and hoping for the best!

 

[Silat]

Grace shouldn't worry about a thing.
She's one tough nut to crack.
And by "nut" I mean a "possibly crazy person".

...

Love you Grace!

 

[julie wishes]

I wonder if all the weird things I feel in my head that I call dizzy/pressure/weirdness that I thought were simple seizures are in fact these "auras" everyone talks about. Grace what does an aura feel like? What does a pre seizure feel like.

And good luck tomorrow. I've been in the same shape for the past several days as you. Its just plain awful to feel ... well... weird all the time! All of my weirdness is concentrated toward the night time. Feels constant at times and its exhausting.

When I went on generic Keppra, and all the weirdness stopped immediately. It felt so great. I was thrilled to feel normal again. I had to stop Keppra because of some weird side effects... grrr. On no meds now and I'm not sure that is good either.

 

[graceface]

Thanks for your support E pals, especially nathaniel calling me "crazy" hahaha. will keep you posted, post doctor

 

[Silat]

It's a term of endearment... :brock: :brock: :brock:

 

[Silat]

@Julie
Auras are different for everyone. Mine will start with a sense of pressure on the right side of my head, about and inch above and in front of the top of my ear. Sometimes weirdness is with it, sometimes other stuff.
Typically it's worse at night for me, pretty much starting around 10:00.

For other people, it could be weirdness, or dizziness, or vertigo, or confusion, or anything else really.
I'm pretty sure they're actually simple-partials except in the case of an aura it often spreads into a more major seizure, such as a partial-complex or a tonic-clonic.

 

[graceface]

Hey julie,

Ok the difference for me...ususally I have a very specific pre-seizure feeling I feel a real strong sense of de ja vu, overwhelming in fact, then i feel like I'm falling backwards out of my body and its like my brain is disengaging from everything around me, i can't articulate anything not even, ah I'm having a seizure even if I'm thinking it cos the feeling is so distinct. So usually those happen for 10-20 seconds before i have a tonic clonic...sometimes i can pull myself out of it but i will experience it and get past or have a seizure.

The aura (or what i think has been an ongoing aura) has happened for the first time last week. I have felt a bunch of symptoms for the last seven days, separation from my body- i don't feel completely in it, headaches-all different kinds-some consistently in the same spots, nausea-i was sick once, tight chest trouble breathing, unable to stand and walk properly-no energy, difficult just walking to the toilet, no strength-hard to lift anything, strange random smells, bouts of pre-seizures and a lot more. If I'm lying down i can articulate myself, use my comp-its like my brain works and my body dosnt. For me this is a new experience, perhaps the description of an aura and a pre-seizure is the same, I've just never experienced this before and my pre-seizures are very specific so I'm calling this an ongoing aura, until i get some answers from my doc...

 

[dennis100]

I'll keep you in my prayers Grace.

 

[chop456]

Please keep us informed on how you are doing. I am sending positive vibes your way!

 

[julie wishes]

thank you guys

 

[graceface]

Ok here is the update...

Saw the doc and my brain is "perfect"...part of me was disappointed and i know you will think thats silly but I've been stuck in this aura for 7 days, it is disabling me to the point where i can barely do things on my own. No one has any answers why all this stuff i happening, its just "oh you have epilepsy, your brain is fine, have this drug. i dont understand WHY its happening!! Anyway the doc is putting me on Lamotrigine, its a newy to me I've never heard of it, the side effects list he gave me is nice and long though. Anyone else on it?

I'm pretty overwhelmed atm, i feel super alone. i just want to live and function normally, i have a career i want to pursue places i want to travel and right now I'm confined to my house barely able to do anything. It is humiliating needing this much help, I'm articulate and able to use my brain but my damn body won't get itself together. i want this aura to go AWAY, i dot want friends helping me shower, helping me walk around, bringing me stuff. My poor ex bf has been helping so much and i feel so guilty and upset because i can't function on my own... i just erghhhhhh

alright i can't write anything else atm, its too much!

 

[LuminaryLucy]

I know what you mean by being disappointed your brain is perfect. I was relieved when someone could figure what was wrong with me (the epilepsy diagnosis) after doctors & specialists all saying I was fine. You know something is wrong and you want to hear the science acknowledge that.

I am on Lamictal which I think is Lamotrigine. I get headaches from it but it has had the least number of side effects for me of any medication as yet. Does your dr think it will counteract the aura you're experiencing?

And keep on venting... I am sure some people here probably think I am a negative cranky person because on the good days I get out and live and on the bad ones I come here; read, post, cry and feel sorry for myself, then realise there is always someone off worse than me. You are not alone.

I hope this goes away soon.

 

[graceface]

Yer my doc thinks it will stop this aura thing thats been happening and stop my tonic clonics but we will see. I'm just upset there is no explanation, i guess I'm exhausted and overwhelmed from this awful week. i just wish i didnt have epilepsy. i say often that my epilepsy has helped shape me as a person, i think having it wasn't such a bad thing when i was growing up but bloody hell it is making things hard, these last few years have been rough and just seem to be getting worse. I've accepted whole heartedly that i have a disorder/ailment whatever you wanna call it and i deal with what comes with it but why does it have to stop me from living? its days like this where i just think karma can't be real because this is the most awful thing and i really am a good person...

 

[Silat]

I know it's hard, but I'm just relieved you're alright.
Also, by figuring out what it's not, you're narrowing down what it could be. Which means you're on the path to recovery, or at least on the path to figuring out what has been the problem.
I know from our conversations that patience isn't something you have a ton of, but this is a journey, and you've gotta find the good things along the way instead of focusing on the negatives

 

[graceface]

I know what your saying Nathaniel, i agree about being positive, I usually am, I can't say i've let epilepsy stop me from anything, despite having tonic clonic seizures I went to uni, heck i went to a theatre and circus school, I've lived out of home for the last five years, I've lead a very independent life. i think it's just now being unable to do a whole lot of much where I'm finding it super challenging. before it was like ok i have seizures but they happen I'm out for a day and i get back on with things, right now I've been stuck in my house with an aura and a whole bunch of symptoms for 7 days, I've never felt this disabled before. It's just a time period of adjustment, taking this new medicine, seeing how it effects my body and then seeing what I'm capable of doing. It's testing and i will try, because i have to, I'm just adjusting....

 

[julie wishes]

Do you mind if I ask why "your brain is okay?" Did he do some sort of test? I don't know you, but I have a good feeling about the lamotrigine for you? Somehow I feel its going to work for you.

I'm so glad I'm not alone in this. It is a very frustrating (that's my nice word for it) experience for me as well. You are articulate, young, and full of promise for your future. This is a small moment in time of a bad experience. It will pass and you will move on. I know that at the moment, I'm FULLY exhausted with the constant drag of these things. I've had probably over 100 since Sunday. Its horrible and I h8888888te it right now. But being older gives me the slight advantage because I've lived through other bad stuff and survived and moved on. You will too once this aura thing stops and you regain some energy.

Keep venting please. I believe we are the only ones who get it. It helps us all to share the good and the bad. I feel the same as Lucy. I only come here and complain. Not so easy to be so dang positve like our good friend Nathaniel. But hes a good example for us.

Hang in there Grace. I know dealing with the fear of all of this ..... MAJORLY intensifies .... all the bad parts of it even more for me. One step at a time.... you will get there. Try to enjoy even the littlest of things so you smile. NATHANIEL... we need another crazy poem quick

 

[Silat]

Relax, and enjoy the good in life.
You can't be happy if you focus on your strife.
Meditate, smile, and live like the ringtailed.
Because you won't be happy if you dwell.
On every time you've felt like you've failed.