Post Surgical Auras

[Elaine H]

Hi All

It's been four weeks now since my surgery, and I have had two very very small Complex Partial Seizures, and then a whole lot of totally weird and very intense auras, anyone reading this who knows me, will know of my fascination with the auras, or Simple Partial Seizures, and I don't think I have ever experienced such incredible emotions, moods, tastes, Epigastric rising, and general freakedoutness!!!! That's a word and a half eh?!

I have always said prior to my surgery, that I could deal with having epilepsy if it wasn't for the auras, they are, as anyone with Temporal Lobe Epilepsy will know, amongst the most terrifying things I have ever experienced! How many times have I tried to explain an aura to someone, I guess some of you guys have to eh? Help me out guys? How do we explain it, for me personally, I have actually sat and described one of my auars to Mark, I have talked him through it, of course, sometimes I can't, I'm just so wrapped up in it, and this may sound bizzare, but I actually get totally carried away with them, I have read about people feeling almost like they have experienced a religious, spiritual event, emotion, dream whatever you want to call it, the taste is always the same for me, but don't ask me to describe it, I always say, that it's a bit like suddenly being plucked from the situation you are in at the time it starts, then you are almost transported into a dream or a situation from your past, maybe your childhood, maybe just a past memory or emotion, wow!!!

I would love to hear about all your auras, please tell me how they start, do they always go to Secondary Generalised whereupon a seizure follows the aura, or are you just left completely dazed and scared senseless by them, all my problems were on the right side of my brain, so when I have the aura, I get goose bumps down the left side, my aura and all it's sensations, emotions, general feelings, always "flashes"up the left side of my body, please, somebody out there, tell me you understand what I'm describing, and that you understand? I also want to know if anyone has incredible surges of emotion, I can feel intensely happy and euphoric for no real apparant reason, I can be sat reading the paper and bang! I know the Limbic System where my right temporal lobe is looks after emotions, but sometimes I'm like wow, I love the whole world, and everyone in it!
Love to you all, I'm still doing well after the op, and I feel like a different person, the auras are not as many as when I first got out of hospital, I think it was just stuff settling down, I am gonna shake my surgeon's hand when I see him in London on August 20th, what a guy!!

I hope you are ok, and thanks again for all your much appreciated, wonderful support, and if anyone's considering, or going for surgery, and you want to ask me anything, I'd be only too happy to help!

God Bless & Loadsalove:woot:

Elaine xx

 

[josieb]

Elaine:

With regards to my auras, they definitely changed after my left temporal lobectomy in Feb. 2006. But my type of seizures also changed after the surgery so I suppose it's all connected.

Prior to my surgery, my auras were what I would almost describe as being a "good feeling". Even though I knew a partial complex seizure would follow, the feeling of the aura was good and caused, like you said, a feeling of unexplained happiness. However, after my surgery, when the mild, simple seizures started about 5 months later, the auras became terrifying.

It's been 10 months since my last seizure and I've only a few mild auras during this time. But from what I can recall prior to that, it would hit me like a feeling of being petrified and wanting to scream and cry because I didn't know what else to do. I would just say it over and over to myself, "Please stop." I'm not sure if this is also associated with the severe depression that I have gone through since my surgery, but it appears to be.

Sorry if that doesn't make any sense, but that's the best I can do to describe the feelings to me.

Wishing you well & good luck with everything.
Sincerely,
Josie

 

[ashmstng]

Hello Elaine & Josie~
I wanted to say since I had the surgery I have had 2 auras. The feeling I get is scared as is something is going to happen to me. I used to get that feeling after a seizure. I never knew when a seizure was going to start just when they ended. But I knew I had one. I would always feel confused, lost, starring to figure out where I was. It would take me a few seconds till I would say I had a seizure by those feelings. But now just having that scary feeling which I had not even a month after the surgery and the Neurologist said that can happen cause I was still healing. I really hope I never that feeling again. I can say after the surgery I had problems with tears coming out of my left eye and my nose running from the left side. And that is all better now.

God Bless you Both!

 

[Elaine H]

Hi Josie

Thanks so much for replying to me about these crazy auras, I am always pleased form other people that they have these crazy mixed up feelings too, isn't it difficult to explain to people who don't know about or understand epilepsy, they just think that we are all on the floor legs in the air, shaking, anmd foaming at the mouth, I think there are 42 types of seizure, I guess we are pretty lucky to not be suffering tonic clonic seizures every day, thankfully, I've only had a few of them in my time.

My seizures changed after my first brain surgery in 2000, and the auras would 9 times out of 10 would precede a complex partial after the operation, before that, I would have mainly complex partial with very little warning, I had one episode of status which I remember frightened the life out of my dear mum, I got taken to casualty that night by ambulance, also since the first surgery, whenever I had a complex partial, my left hand would come up into a clenched fist.

I feel like a new person since this second surgery, but the auras are bloody terrifying, like you say, I have several times shouted "go away!!" at whatever, in an attempt to make it stop or go away, always I get the taste, the strange creepy feelings, and the epigastric rising which I liken to going over a hump back bridge in a car.

We had a BBQ last night, and everyone said I looked well, and that you'd never believe that I'd just had brain surgery, it was great to see everyone, and I was glad that I has some good news for them, I think it's been a month today since my last complex partial, so things seem to be settling down. I'll keep you posted, it's great to be in contact with people who understand isn't it? Take care, and hope to hear from you again.

Cheers

Elaine x

 

[mat]

I know all to well about having to describe those feelings,and i hope your doing well.I am about to have surgery,left side.Can you tell me alittle about the surgery,are you back to work,if so how long were you off?How bad is the pain on a 1-10?What if any is the differance between surgery 1-2? I have done all the tests,and go thurs.8/14/08 for consletation and to set a date.Can you tell me what to exspect?Thank you for your time.Mat

 

[Loudmouth]

I haven't had surgey (yet) but I get the 'auras' without having a 'biggie' after all the time, in fact i can have the auras so many times in the day, like where i feel like i am falling about a thousand feet or floating way off miles high, or dizzy with a sicky feeling and so scared like im going to die. I feel like that about 30 odd times a day and only go into different szs types about 15 times a day, so only abuot half the auras mean a bigger sz.

 

[haird18]

I know all to weel about auras!

Elaine,
After and before my surgery they changed dramatically! When I was little had aweird taste or unusual numbness before a seizure. As i got older it changed to funny taste to weird sensation in one side of my body. And now I get a combination of weird feelings all over my body and funny flavors in my mouth to numbness after hafter having right temporal lobectomy.
David

 

[Elaine H]

Hi Matt

I just saw this message in The Kitchen, I hope you get my reply to your private message ok. I've left my e.mail address in there for you so I'll drop you a couple of photos of my time down in hospital.

I hope all goes well with your consultation tomorrow, keep in touch won't you and let me know?

Best Wishes

Elaine

 

[morgan381]

My last aura was about a month or so ago...they're always the same: an intense sense of fear and dread (not exactly the right words, but best I can come up with). My heart races and I get a funny feeling in my stomach, like I'm on a roller coaster that's going down hill (make sense??), and occasionally I "hear" a high-pitch, bell-like noise. The noise reminds me of the hearing tests the school nurse used to give back when I was in elementary school.

This last one did not generalize (thank God!). Usually I have the aura, a series of hard and fast c/p's, then generalize in to a t/c, then I have more c/p's, another t/c and so on (status). For me, the c/p's are the scariest part because once I have more than 3 I know what's going to happen. They suck--like being trapped in my mind, unable to hold on to one thought, just a whirlwind of random, nonsense, non-stop thoughts.

The aura is sort of a releif, because it gives me about 20 minutes to get somewhere safe.

 

[Elaine H]

Hi All

I hope all is well with everyone? I hope you are aura free? I'm pretty much free of them and complex partials I think, thanks to Trileptal!! and of course brain surgery!! I just wanted to drop in and say hello, I'm trying so hard to find a job, but thanks to the mess this country and the whole world is in, it looks pretty unlikely!!

Anyway, keep smiling everyone, and keep in touch, I love CWE, and thanks to Bernard, we all get so much comfort from it don't we? How cool would it be to have a CWE get together somewhere in the world one day?!

Lotsalove To You All

Elaine xxxx