can you tell me what auras are - Epilepsy Research...

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can you tell me what auras are

bowland profile image
20 Replies

hi, I had a menigoma removed and left some in . It as left me with after abit of sorting with controlled Epilespsy.When people say that they have auras with theirs ,how does it make you feel I dont know if my recent Auras are fits which as just started.

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bowland profile image
bowland
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20 Replies
Rubiksolver profile image
Rubiksolver

I also had a tumour partially removed. Auras are a slight warning that some people experience just before a seizure, some have a strange smell, tingling or an odd sensation just before as a warning. I get a felling where I feel really happy / high but it only lasts for seconds and I don't get enough time to settle before one comes on.

bowland profile image
bowland

Thanks for your reply,it's hard to get anyone to answer things unless they have been there. I can get dejav feeling which goes to scared one.People with me say l look like that I am just in a thought mode.I don't know if this is an aura or a fit.This is not daily but can happen a few times the same day then can have a gap for over a week ,this can take away confidence.I have been taking Epanutin for years and I think that it is controlled?My tumour was in my temple area and the rest left are extentions.How does having a fit compared to just an aura.thanks

Jadevaughan profile image
Jadevaughan in reply tobowland

Hi I get auras where the room starts spinning and I see rainbow flashing lights or black flashing lights and start breathing heavy then I collapse and have a fit. Very scary as carnt see and think your going blind, room spinning makes it even worse

bowland profile image
bowland in reply toJadevaughan

Hi,sorry to hear of your aura symptoms they seem slightly different to mine but we must all feel the same with the independent scarry feelings.Have you had your feelings long ,like I have said mine came to me after having a brain tumour nobody gave me any advice at the time this would happen best wishes

Rubiksolver profile image
Rubiksolver in reply tobowland

This sounds like you may be having absence seizures. I get them where they can last for seconds or go on for almost an hour. My friends say that I just look vacant, I can go wondering off and walk along the street, cross a road and 'come to' in a different place having no idea how I got there. The next day it's like I've got a hangover where I'm sore and wee bits of what may have happened flashes past, it's really weird, but I don't get an aura before hand.

bowland profile image
bowland in reply toRubiksolver

Hi,yours sounds slightly different to mine but we are all in the same boat with epilepsy and we are not in a race to compare.You mentioned having a brain tumour did your epilepsy start after. This is when mine came along to put up with ,which is a secret from the public eye as most people don't know how to take it .So thanks to family and friends...

Jadevaughan profile image
Jadevaughan

Had them before I had the seizures 5 years ago

Kiera49 profile image
Kiera49

I have been seizure free for 21 years and was driving started feeling tingling on my face and symptoms like panic attack. Now Had a letter to save have been having focal seizures although completely aware. So had to give up driving feel my life is wrecked now lost all my confidence

bowland profile image
bowland

Hi,sorry to hear about your driving ,I haven't driven for a while myself.l find auras can be frightening and lonely .I haven't heard of focal seizures , is that like a complex seizure? I have tried to figure out what triggers them and mine seems to be when I'm tired .Do you take medication? I was a hairdresser and had to sell the business.This was before I found out about my problems.My auras can stop me talking in the middle of a conversation but they don't stop me doing physical things which I can be doing.Talking to people was part of my occupation.I also have kept epilepsy a secret as I have found people can soon blot me out and speak to my husband instead.Take care

gillyhan68 profile image
gillyhan68

My daughter is 14, she has 2 types of auras. She tells me that she smells a burning smell and then feels really scared and the other is where she tastes “soapy taste” . She has this a few hours before a tonic clonic seizure of which she can’t remember anything x

bowland profile image
bowland

Hi,sorry to hear about your daughters auras ,I think that's the trouble with auras is it means to me that it's not finished and that's the scary bit .Tell her I wish her well x

elsieadams profile image
elsieadams

After living with epilepsy since I was14. I still have auras from time to time and immediately stop what I am doing and try to relax and try to visualise something soothing like rain falling or waterfalls etc. I have been controlled with meds for over 20 years but you seem to always suddenly feel scared that it may happen again. My auras consist of a strange scent and taste in my mouth that is hard to describe then a strange tingling at the base of my neck. They are a good warning to anyone who is not seizure free and should take them seriously.

gillyhan68 profile image
gillyhan68 in reply toelsieadams

Elsie thank god. I’m not going mad the consultant looked at us like we were when Beth told him about the smell and taste auras x

elsieadams profile image
elsieadams

Sometimes consultant do know all the different variables involved unless they have treated many patients with epilepsy. But auras are very common and some people think you are short a few marbles. Don't let them discourage you by not knowing about this as some people do not mention them as they may be unrelated.

303127 profile image
303127

I also had a total resection of a meningioma just under 7 yeras ago,before that I had experienced simple partial seizures for at least 3 years. The G.P's ignored this and said I was anaemic,.The headaches worsened,they were unbearably painful.`i was told that they were menopausal migraines and gave me numerous differnt painkillers,none of which touched the side.i was told that I didn't fulfil the requirements for an M.R.I.My husband came home one day to find me in a coma,the rest of which I don't remember until coming round in hospital with my entire family there'( my first though t being ,well somebody's ill!).Sorry for the preamble,I still have T.L.E although it is treated with lamotrogine and the seizures are very infrequent.The aura I have is a strange sensation of everything feeling 'hyper real' and unrecognisable at the same time,then the tingling starts in my face and makes it's way all through my body. When I described this to my neurologist he said I had given a textbook description of a T.L.E seizure.As i say,they are now controlled by Lamactil.I hope the description of my 'aura'helps.They themselves are not the seizures but can certainly be distressing and worth further investigation.I wish you well,seek help,lots of love Ash xx

bowland profile image
bowland

Hi, sorry only just seen your message ,Your story seems similar to mine ,I had Meningioma removed (not all) 17+ yrs ago and have bits left effect different things - hearing .balance.head pain and of course Epilepsy.Thanks for your description of your Auras the" hyper real" feeling is a good sum up . Best wishes xx

Fosters1234 profile image
Fosters1234

When i have a bad aura its like having a nightmare while being awake and i have a funny taste. It only lasts about a minute.Then i have a bad head for few hours. The mild ones i can cope with. Mazza

bowland profile image
bowland

Hi, I am still trying to figure out triggers for my auras ,I have just had one tonight drying my hair . It was one of my scary type all the bedroom is very bright I think I can hear talking in the background.This has happened before at night time drying my hair ,Is it because there is a few lights on and this is a trigger..All I can say drying my hair in the daytime hasn't give me auras.I know someone will say do your hair in the day then but this can't always be done.It also might just also be plain and simple if my body wants me to have an aura (which sometimes have been weeks apart or a few in a couple of days )) that seems to be hard to change its decision .Best wishes

Campanologist profile image
Campanologist

An Aura is a sign that you are going to have a seizure. e.g I have petit mals/Absences. & I always get one, when I am going to have one. I hope this answers your question.

Stephen.

bowland profile image
bowland

Just to say thank you for by our reply , my Auras seem to be related to being tired and see to be a few over a couple of days then a relapse.This has happened for 20 yrs since Brain Surgery but it is always something uncontrollable which makes it scary.I feel for those who's Epilepsy is worse than mine .Tanks again

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