Describing Your Auras To Me For My Book?

[Elaine H]

Hi Folks and Happy New Year To You All!!!!

I've been away from CWE for a while as 2011 has been the year from Hell!! For anyone who knows me on here, my fiance walked out on me in April, he's getting married in July, I cannot get a job in the town I live in, I'll probably have to move house soon, after my last job interview I was called a "Window Licker" not a very nice description of a severely mentally handicapped person, you get the picture? Several friends and relatives have passed away, and the recession continues here in the UK as it does worldwide! I'm still smiling though, and re the book I'm writing on my living with epilepsy and the stigma I've experienced, well, it's almost there, I'm just trying to concentrate long enough, to type it all up, and collate the last bits of info I need, I honestly add to it weekly with my good and bad experiences and was lucky enough to be invited to do a live BBC radio interview on epilepsy a couple of months ago.

I would really appreciate your input with your description of your auras, how they manifest themselves, what you experience,taste, smell, see etc, how often they occurred, did they go onto to become secondary generalised, or not? I'll add you as anon or add your names whatever you say, I just want a cross section of people's experiences so that someone newly diagnosed can pick up the book, read our experiences and think, ok, so it's not just me that's having these crazy feelings! There are a few other things I need you guys to tell me about too, but I'll ask you about that at a later date.
I hope everyone is ok, I'm still free from my auras thankfully, as I've always said, they were/are the worst part of having epilepsy, but I have had a few Atonic seizures lately, I collapsed in the pub a few weeks back, I was revived by some hunky men with a glass of white wine, very stressful!!!!!! Well, if you're going to collapse, do it in a pub eh folks?!

I don't think I've been here since August, when I had skin grafts on my burnt fingers, sustained from a seizure whilst drying my hair back in Jan 2010? The operation went really well, I was just a bit worried when the plastic surgeon told me he was taking the grafted skin from my....crotch/groin area???!!!! OMG!!!!! He wasn't too amused when I looked at him and asked if I was likely to have hairy fingers?? So far so good girls, not a pube in sight!!! Keep ya posted!!
So, back to business, if you could help me with the descriptions of your auras, I'd love to hear from you all old and new members? This is the best site I'm on, and I really mean that, people always come up with the goods on here, whereas in the UK, we seem to be a bit more heldback in sharing our experiences sometimes, well, not me you understand? I know there are a lot of new folk on here, which is fantastic to see!! Now I know my ex is getting married (hope the poor woman has a good book!!) I can get on with my life, and if I ever get a job, I can start to rebuild myself a new life, and as long as I don't develop hairy knuckles and the urge to fill my front room with budgerigars, cats, and the need to listen to Perry Como cd's all day, I may even meet a new man some day eh??!!!

Happy New Year everyone, and I really hope that 2012 is a great year for us all!!!

Lotsalove

Lainey
XXXX

[momof3boys]

Hi Lainey! Its good to see you back at CWE! Im sorry you had a rough year, Hopefully this year will be much better for you!

I can give you a description of how my auras are. They start out with a feeling that something isn't right. I get kind of a funny feeling inside me. Feeling kind of spacy, and it gets quiet, and then within seconds, I feel a overall sad and fearful feeling over come me. Sometimes I will experience the daja vu feeling. Like I was in the same place before and its happening all over again. When I get these feelings, my heart rate begins to pick up, and I get a very sick feeling in my stomach. I at times feel like I want to vomit. Thats about the time my head will turn to my right side, and my body starts to stiffen and jerk. During this all, Im getting a tingling and numbing sensation through out my whole body. It starts in my left hand and left foot, and goes up my entire body, which affects my head, face, roof of my mouth mostly. Im consious through out my simple partial seizures, and feeling of this numbing sensation is what's weird but kind of scary feeling as all this stuff is going on. Apart of me wishes to be unconsious instead of consious just cause I dont like the feeling I experience during the seizures.

My seizures last between a minute to three minutes, depending on how bad it could get. Most of the time its just simple partial seizures, but Ive had a couple where I blacked out during them and came to. afterwords I feel weak, tired and have a headache.

If you want to use any of my information, you're more than welcome to! You can even put me as Kristin or just annoyomous if you want!

I have left temporal lobe epilepsy, if you need to do know what kind of epilepsy I have!

[Nakamova]

Hi Lainey, I'm sorry to hear that things are still tough for you, but I'm glad you're hanging in there. I hope 2012 brings good things to you.

I don't usually have auras, but before my last seizure I had strange moments where it felt like I was seeing a movie in my head while simultaneously being aware of the real world around me. I was sort of dipping in and out of the "movie".

[CQ:)]

Hi Lainey

I'm sorry you had a tough year last year but hope 2012 is a better year for you .

I had left temporal lobe surgery last March & since my surgery I haven't had any seizures. I am currently only 10 months seizure free but this is the longest I've been seizure free in 9 1/2 years (before surgery longest I went without an auar was 1 month & a complex partial was 5 months)

Before my surgery I used to mainly take auras which increased as the years went on (before my surgery I am sure I was having at less 1 aura a week), sometimes it was just an aura but sometimes it was followed by a complexed partial.

When I had an aura I would usually get a weird dream in my head which I think lasted less than a minute & my body felt a bit strange. It was always the same kind of dream that I had & the only time I ever remembered what the dream was about was when I had an aura. So when I had the dream I knew I probably had a seizure.
I've had neurologists & epitiologists ask me to describe the weird dream I have during an aura & it was always hard to describe the dream but I think it had something to do with going somewhere (but don't know where I was going lol) .

After the aura I wouldn't remember anything until after I came out of the seizure (usually only lasted 2 -3 mins).

If you would like to use me as an example you can put annonymous or Em .
If you need to know any other info about what I did during my partials just let me know.

[jyearta]

Hi Elaine, I hope 2012 will be a great year for you.

I have temporal lobe epilepsy on the right side.

My auras/deja vu -things-- place, people, a conversation will seem as if it's happen before. I get scared because I know a seizure is coming on.
I'm thankful because this is a warning for me to get to a place before the seizure. I can get a word or two out to my husband or friend what ever the case may be. But once the seizure starts I'm not able to talk, I will know where I'm at, who is talking, what is being said.

I hope your book will help alot of people with E.

Good Luck

[Krista2882]

Hi Laney, It's nice to meet you. I just joined a couple weeks ago.
Thankfully, my seizures don't go beyond an aura (Simple Partial). I learned from this board that I have Kojewnikoff Syndrome (AKA Epilepsia Partialis Continua)-- my auras can last for hours at a time.
When they first started, it was a shaking in the right side of my body with periods where the muscles (usually in my neck and shoulder) would tense up and release repeatedly for about 5-8 seconds. At its worst, this would happen about 5 times per hour all day long (with the more minor shaking going on almost the whole time). My muscles would get really sore after this having been going on all day.
Now that the auras/simple partials are mostly under control with meds, I get just the shaking and very slight jerking on the right side of my body- usually just in my leg now. It usually doesn't last more than an hour at a time now, but it almost always lasts at least 30 minutes. Rarely (maybe only a couple of times a year now) it will spread to the upper right side of my body and my right arm.
I get them usually at least one day per month (but usually not more than 2).
I also get woken up a couple times a year by what I used to think was sleep paralysis, but I now think they're nocturnal seizures- my whole body is paralyzed except for my eyes, my body feels like it's buzzing, I get a loud humming in my ears, quickened heartbeat, very vivid dream if I let myself fall back to sleep before I can move and snap myself out if it... but I haven't confirmed whether those are auras, too. But they only occur around the period of time when I'm getting the motor type of simple-partials.
The seizures originate from my frontal lobe and are triggered by hormones.
You can refer to me as Krista if you include this in your book.

[Loopy Lou]

Hi Lainey! I really hope this year is better for you, you deserve it.

I've heard before that simple partials are auras. I can only remember them if the don't lead to a tonic clonic, but from what my brother has told me I act the same just before a tonic clonic as I do when I'm having a simple partial.

Sometimes but not always I get a strong smell of stale, salty garlic. This can last for maybe about 10 secs and then I get a feeling kind of like I'm underwater. Everything seems to be moving in slow motion, colours seem more vivid in colour but blurred and sounds feel fuzzy. I tend to tilt my head to the right and a person can be talking to me but I have absolutely no idea what they're saying. I'm aware that this is happening but it feels almost like I'm in a dream. It will probably last about 30 secs or so but it feels a lot longer to me. Quite often there can be hours between the garlic smell and a partial/tonic clonic and I don't always get it.

I have left and right temporal lobe epilepsy x

[Aicila]

I have a really strong deja vu. It is almost painful. I get a tightness in my chest. There is a tingling in my brain and I feel like I am losing myself in the deja vu. I think the best way to explain it for me, is to turn an emotional feeling to a physical one. Like when you watch your child start to fall and you know they are going to get hurt, that feeling you get in your core, its like that, but starting from my brain and then moving down. Things get dark, like they lose colors and turn dim.

[valeriedl]

Alot of times I don't know the seizure is coming on, I just have it and don't know it happened unless there is someone with me to see it happen.

When I do have an aura I get a deja vu feeling. This afternoon I had one where I was sitting in a chair with my cat on my lap doing a crossword puzzle. I could have sworn that all this had happened before, everything. It even seemed that the questions to the puzzle were the same too.

Sometimes when I breathe the air might smell cold. I'm not really sure how to explain that one.

Alot of times my lips will start to tingle and I'll feel slightly dizzy. My husband tells me that my face will get really pale.

I don't have the exact same aura all the time for my seizures.

Sometimes I won't beable to think straight and have trouble saying words but I think I'm a few steps into the seizure when this starts.

[missapril]

My auras are like a very intense panic attack that lasts for about 10 to 15 seconds. It first starts out as a deja-vu feeling and moves into a tightening in the chest, heavy breathing and a panicked like state. I often cry because my auras just feel that weird and unbearable. Sometimes I will curl up in a ball and wait for it to go away because I can't handle it.

I often can not respond to anyone if they are talking to me and seem to be ignoring them, when in reality I have no clue they are talking to me or I just can not get any words out.

A few times I have also had a slight metal taste in my mouth but not always.

My auras often mean a seizure is coming in the next couple days, not right away.

[DevonMax]

Its hard to describe the feelings I get, but ill try my best.

My auras usually start as a weird feeling/headache on specific parts of my head. It then goes from that to a feeling of slight panic along with an overwhelming feeling in my chest and head and then spacing out until I have the inevitable partial complex. Still hard to describe it perfectly though.

[survivor]

Hi there! I dont have any auras, but i am also writing a book on E. Do tell me if I can be of any help. Because whether its my book or urs, book will be for persons suffering from E only.
Shagun

[Hand of Blood]

i can get very strong auras not as strong as b4 a sezuire but i do have them without getting a sezuire.... last night was bad! .... for hours sounds annoyed me they would make me confused about anything i was trying to talk about my heart goes real fast and its either blurry or bright , it just feels like im going to have a sezuire at any time but i dont. i dont know if its the meds stopping it from having a full on sezure but its defo something. like i said they not as bad as ones i get b4 a sezuire the only thing is they last for hrs or maybe a full day

[CQ:)]

When I had an aura I would usually get a weird dream in my head which I think lasted less than a minute & my body felt a bit strange. It was always the same kind of dream that I had & the only time I ever remembered what the dream was about was when I had an aura. So when I had the dream I knew I probably had a seizure.

I forgot to mention that when the aura 1st started after the weird dream came in my head my stomach would tighten a little bit & I usually felt like I needed to go to the toilet. If I was close to a toilet (eg at home) I would go to the toilet while having the aura. But if I had an aura while out & there wasn't a toilet nearby (eg in a car or walking) I would ignore the feeling in my stomach until it went away & luckily I never lost control of my bladder.