Let's list our Aura's. Mine are....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

JScott
New Member


Date Joined Mar 2006
Total Posts : 8
   Posted 3/12/2006 9:03 PM (GMT -7)   
Hi,
 
I'm new to this whole thing cause I was just diagnosed with E three days ago.  It wasn't until  I found myself flopping on the floor that I knew I was having seizures.  Once I started reading these posts and learning about seizures I realized that so many unexplained "episodes" in the past two years have more than likely been seizures.  The following is a list of what I guess are Aura's or may even be actual seizures.  I feel like I'm crazy with all these things going on but here they are:
 
  • Zapping sensation in my head over my left eye followed by numbness and tingling on my left side
  • Extreme fatigue - Unable to hold my head up w/o forcing myself to.
  • Extreme confusion -  Can't take questions fired at me.  Get lost mid-sentence.
  • Inability to tell where the sidewalk curb ends and the parking lot starts.  (OUCH!!!)
  • Seeing things as if they were magnified
  • Hearing things - Always asking my wife  "Did you hear that?  What was that?"
  • Not understanding what people are saying and just thinking they were talking to fast (even though everyone else understands them)
  • Forgeting things
  • Disorientation

What are your aura's or triggers?

 

 


JScott
New Member


Date Joined Mar 2006
Total Posts : 8
   Posted 3/12/2006 10:01 PM (GMT -7)   

Thanks Mandi!!

I'd like to try and keep this post going so new people can see it and know that they are not alone.  Also, I'd like to start a post that encourages new people to add to it to post what they are going through.  Then they won't need to search so many pages of newbies just to find out if they are normal.

What does everyone think? Should someone start a post saying "Newbies, read here and post here"?

 

 

devil  

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 3/12/2006 10:12 PM (GMT -7)   

JScott,

I've had epilepsy since 1979. My "auras" are exactly like you described above  ~ plus ~ I hear bongo drums (not kidding)

At first I would get them about once a month and then as I got older they became more frequent, now it seems to be every day.

I'm only 49 but when I was 47, It was affecting my job (office) and my employer forced me to take medical retirement.

It's better now with less stress and more sleep but I still get these auras once in a while.

Randy


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 3/12/2006 10:17 PM (GMT -7)   
my aura is a slight dizziness and a cold clammy feeling like you feel when you're getting ready to pass-out and then my vision starts going - like i'm looking through a pin hole, after that my hearing starts fading - then grand mal - and when i come to it's almost the same way, a gradual fighting to the suface kind of feeling. i usually have a minute or two of aura before the seizure.
 
some of the other things, like confusion, inability to concentrate, hearing things, vision stuff, running into things - actually ended up being panic attacks for me. when i received meds for that - many of those things went away. i still think that sometimes a bad panic attack can push me over into a seizure at times - but that may be just me, i'm not sure. i've never had any concrete evidence of that.


seizure disorder - chronic myofacia pain - B-12 anemia - severe neutropenia - bulging disk in neck, etc.


coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 3/12/2006 11:16 PM (GMT -7)   
I have generalized tonic clonic seizures. Most of them occur within several hours of waking up in the morning. On those days, I wake up "different". Something is wrong with my mind. It won't work. I am dizzy and nauseous. Very disoriented. Time seems to move forward in jerks, rather than progress smoothly. I may have a seizure. I may not. I never know for sure that a  seizure is coming, until I wake up after it. Usually two hours after, but it is then several hours more before I can stand. All of my seizures are preceded by this "zone". I live alone. It's scary.

JScott
New Member


Date Joined Mar 2006
Total Posts : 8
   Posted 3/12/2006 11:53 PM (GMT -7)   
Hadn't picked up on the moderator part yet.  Sorry Jennifer. That's been part of my problem, picking up on details that once seemed so easy.
 
Thanks to all for comments.  My job requires that I travel from Arizona to the East Coast.  I am worried about flying now.  I have had seizures on planes but never the type where I blacked out like I did two weeks ago.  Two days before my blackouts I had a mini-seizure while making a presention to my clients.  I thought it was a sugar level or something but I was confused cause my left side went numb and I just couldn't think.  As I was talking my head pitched forward and I started slurring my words.  I just said that I needed something to eat.  Eveyone laughed cause they thought I was just clowning around. I was confused and scared.  Lucklily they decided to take a break and let me get something to eat.  By the time break ended I felt better.
 
As some of you have picked up on, I am freaked out and more than likely making it worse by worrying so much.  It's just that the seizures have gotten so much worse in the last two months.   Hearing that other people experience the same things actually makes it easier on me.  I am able to realize that it is simply part of the epilepsy package and I can deal with it.
 
And....  I am not allowed to drive!!!! Wow, I am now dependant on others to take me every where.  I'm 45 and I can't drive.
 
I started keppra two days ago and I'm still having seizures.  I have a sleep deprived EEG scheduled for this Tuesday.  I don't want them to find anything but on the other hand, I want answers as to what is going on.  Totally mixed emotions.  Should I not take the keppra tomorrow?  Do I want to try and trigger an episode?
 
Thanks to anyone that reads through this whole thing.  My wife is probably getting tired of listening to me try to sort through this.
 
Lastly, does it make sense to anyone that the left side of my body stays numb?  From my neck to the bottom of my foot.
 
Thanks again.
 
 
 
 

pgcandy7
New Member


Date Joined Mar 2006
Total Posts : 12
   Posted 3/17/2006 2:01 PM (GMT -7)   

Hello, I'm not really sure what my Aura is! I have Grand Mal seizures the only warning I get is maybe 30 seconds before I go into a full seizure. My tounge starts to go crazy and I feel like I can't breath. Then I pass out, and it takes me a good five minutes to get all my functions back! Sometimes I think I have an overwellming sense of fear but I think that's just me being paranoid! I slacked off on medication and had a partial facial seizure about two weeks ago after being seizure free for almost 4 years. Before that I was fine and didn't feel anything!

 

C


Maygie
New Member


Date Joined Mar 2006
Total Posts : 1
   Posted 3/26/2006 10:26 PM (GMT -7)   
I have a LOT of deja vu feelings and am saying a lot of things in my head at the exact time someone is saying the same thing... without knowing what they are going to say! Plus I have a sense that I will think of someone and it might be that I haven't heard from them in awhile or whatever... but then that person will either call or write or something... It's spooooky. I get ringing in my ears a lot and chills... I got epilepsy starting from an eye infection that traveled back and gave me spinal meningitis and then it almost knocked me dead till they got to to the hospital intime before it hit my brain and killed me. It then turned to epilepsy... I was put on the "juice" phenobarb as a baby at 1 1/2 and have been on meds ever since. I'll be 47 in June and still get a lot of nevous anxieties and fears towards life. I'm still on 30mg of Phenobarb 4X's a day. and also Ultracet for fibromyalgia pain, pain patches, HBP meds, my confusion med....ummmmm.Straterra. ADD, I really did forget, had to ask hubby that one, Buspar for depression and vitamin E for floaters and iritis, and drops for when the iritis occurs, Singular for asthma and aspirin for extra pain calmers besides.
So here I am trying to stay afloat...
x0x0x0

amylaw
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 9/23/2006 3:30 AM (GMT -7)   
wow, very interesting reading everybody's different experiences.
I was diagnosed with ctemporal lobe epilepsy in '01, after taking ritalin for many years; a gp said I was ADD and over time, it made things worse. Only about a year ago did I really start noticing the auras; sudden nausea, dizziness, feeling that the room is spinning, hearing voices. I thought I was going crazy, but an EEG proved otherwise. Had my first grand mal seizure 6 months ago and the auras I get beforehand are very different. I also have not been driving for about 4months, and haven't been working either, because I managaed a restaurant and kept having seziures around sharp objects and boiling water! It can be so frustrating not being able to drive, like your independance is just taken away from you. But I'm sure things will improve. Best of luck.

tate
New Member


Date Joined Aug 2006
Total Posts : 4
   Posted 9/23/2006 11:57 PM (GMT -7)   
Auras wow what a topic this is long and i still dont think I covered all of mine.......
It is a great topic to talk about though some auras i dont know if I am going crazy or if they are actually a aura.... is interesting to see other peoples experiences........ I have had temple lobe epilepsy since i was 16 after head injury and i am now 28......... awaiting ok for suregry
Olefactory-
sometimes I will smell something that no one else around me does. Usually it has been an ammonia-type smell, chlorine bleach, . It only lasts under a minute and then it is gone.
Auditory-
Although I have never processed any unusual sounds or noises, my hearing has always been super-sensitive. Loud noises or high-pitched noises actually hurt my ears. I have tinitis (ringing in the ears) pretty frequently. or my hear just sound like they blocked and need to pop for a minute
Gustatory:
there is no specific taste that comes over me, it just appears as a yucky, foul/bad taste in my mouth, even though I have already brushed my teeth for the day etc.. it happens as briefly as the smells I listed above, and doesn’t coincide with ingesting/eating anything. Sometimes foods will not taste right to me, they will taste off. I put the food aside and when I later return to it, it will taste perfectly fine.
Visual-
I sometimes I feel as if I am standing from the vantage point of being twelve feel tall, almost as if my body has elongated somehow, it lasts under a minute just as the above symptoms do. Much less frequently I have felt when looking at my hands or feet; parts of my body that may be in my view, appear smaller. Again it is very short in duration like the other symptoms, a few seconds or so. I have had a lot of both flashes and floaters since young adulthood.
Tactile-
in localized portion of my skin like my thigh, sometimes my skin feels like there are crawly type feelings under it, almost as if something is moving underneath.and instant overheating At other times a localized part of my skin (like a part of my arm or leg) feels hyper sensitive, even a soft sheet can feel scratchy in that one area of my skin. Touch in general is hypersensitive, if I don’t know someone is about to touch me, say they come from behind me, I get pretty startled..
GI-I
have had periods of rapid onset of nausea throughout my day for many years, that has nothing to do with eating. I have not vomited just felt very nauseated. This lasts a few minutes and then goes away. I used to think that maybe my blood sugar was low, and that eating a snack would make it disappear, but eating something has never alleviated the nausea; it just goes away on it’s own. I also get this funny feeling in my stomach that feels like yeast bubbling.
Perceptual (Alteration of Time)
this is a weird feeling and hard to describe but it feels as if someone has just hit the fast forward button or pause button on time. Time, as its unfolding feels either like it’s going slightly faster than it should, or like it’s just a tad too slow, almost like everything around me is going on at a sligthly slower pace. The best way to describe it is when you are dealing with a VCR, you can adjust the tracking on the film and there are gradations where you can slow the film down just a bit. These sensations like the others are either momentary up to only a few minutes long.

Fen
Regular Member


Date Joined Jul 2006
Total Posts : 71
   Posted 9/24/2006 5:11 PM (GMT -7)   

I get the same stuff that you have plus I also get the numb feeling in my LEFT side ONLY sometimes from my head to my toes. So NO your not alone at all!!! And yes I hate it. I also get ringing in my ears sometimes as well. At least I get this 100% of the time before a attack. I can drive now though but I havent from choice for 8 months now. My wife drives everywhere. My job I have for over 10 years fired me for having this at work a few months ago. Im on medical disability now and am only 38 years old, so Im really worried about my future. The part that makes me mad is Im a computer admin and had a great work history and was the only one in the dept. that had employee of the month awards and things like that. I think I was making more and that was the reason they fired me. But now my wife says to stay on disability and get cured (If thats posible) till I go back to work. Im here in San Diego, CA, USA.

Good luck all,
FEN

JScott said...
Hi,
 
I'm new to this whole thing cause I was just diagnosed with E three days ago.  It wasn't until  I found myself flopping on the floor that I knew I was having seizures.  Once I started reading these posts and learning about seizures I realized that so many unexplained "episodes" in the past two years have more than likely been seizures.  The following is a list of what I guess are Aura's or may even be actual seizures.  I feel like I'm crazy with all these things going on but here they are:
 
  • Zapping sensation in my head over my left eye followed by numbness and tingling on my left side
  • Extreme fatigue - Unable to hold my head up w/o forcing myself to.
  • Extreme confusion -  Can't take questions fired at me.  Get lost mid-sentence.
  • Inability to tell where the sidewalk curb ends and the parking lot starts.  (OUCH!!!)
  • Seeing things as if they were magnified
  • Hearing things - Always asking my wife  "Did you hear that?  What was that?"
  • Not understanding what people are saying and just thinking they were talking to fast (even though everyone else understands them)
  • Forgeting things
  • Disorientation

What are your aura's or triggers?

 

 


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 9/27/2006 7:13 AM (GMT -7)   

Aura's are quite strange things. Both me and my mum suffer from epilepsy (I have been diagnosed about 5 years and my mum has had it for many more than that!) She often gets a bitter taste in her mouth before a seizure and a feeling that everything is getting closer (a bit like the world is shrinking.

But for any newbies out there, dont worry if you dont get an aura becuase not everyone does or can remember it. I have had epilepsy for 5 years and have never had an aura prior to a seizure. To start with, I thought it was the fact that I was new to epilepsy and that I wasnt paying attention (for want of a better phrase) but as iv'e come to live with it, I have found that im not actually missing anything because there is nothing there to miss!

There are of course triggers; mine is generally stress. The last seizure I had (Which resulted in me having to surrender my driving licence) was whilst I was moving house, (You dont normally get more stressed than that!) but it isnt always the same level of stress. Perhaps there are different types of stress? Thoughts and comments would be appreciated.



 


jaimes
Regular Member


Date Joined Jul 2006
Total Posts : 30
   Posted 9/27/2006 10:49 AM (GMT -7)   
Maygie, my auras are alot like yours! i get em maybe 30 seconds or less in advance of a tonic. just enough time to get in a safe position if i can.
 
i repeat in my head...but it's not really repeating, it's as it's happening! i get the sheer panic, like when you're speeding over a bump and your stomach drops, i feel that with a deja vu, and then it occures to me i have to talk out loud to stop the repeating in my head...that's when i notice...i can't speak and i'm not breathing. then i deviate right (only my head) and that's the end of that. i'm out.

dilantinjunkie
New Member


Date Joined Sep 2006
Total Posts : 1
   Posted 9/30/2006 2:32 AM (GMT -7)   
I've only had 5 sz in my life all always happening in the morning when I'm about to wake up. I'm on 300mg dilantin/day. I still get scared throughout the day because occasionally I experience what might be an aura as read from this thread. I am an engineer and have long work days that require lots of reading, thinking, and applying. I notice that I get those feelings more often on heavy work days where I have to think so much. Am I just burnt out or could it be a sz trying to sneak in (if that even makes any sense)...?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/30/2006 5:39 AM (GMT -7)   
Hey there dilantinjunkie... welcome to Healing Well, we are so glad to have you... You noticed that you get aura's on heaving workdays, do you think that stress may be one of your triggers? Have you talked to your neuro about this? Maybe your anxiety about possible having a seizure is causing it also... As an engineer you have a demanding job, and the anxiety/stress maybe taking it's toll on you. When did your seizures start? Hang in there, we are here for you. Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 9/30/2006 9:33 AM (GMT -7)   

Jscott,

I completey understand your concern about flying.  please check out the Epilepsy safety post.  There is a section specifically about how to be safe while flying.


Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


husker
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/3/2006 7:15 AM (GMT -7)   
Hello Everyone,

I'm new to web sites and all so bear with me. My auras come in the form of waking up in the a.m. and my body feeling kind of weird. My head feels like ping pong balls are going back and forth. I start having many rapidly occurring petit mal seizures. Next thing I know I'm coming out of my grand mal seizure. It doesn't sound like much. Thats my story.

Sincerely,

husker

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/3/2006 8:50 AM (GMT -7)   
Husker glad you found us.  Sounds like a great start to your day.  You'll find many people here that have lots of great support and similar feelings and situations as yours.  Welcome to HW.  If there is anything I can help you with please let me know.

Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


iowyth
New Member


Date Joined Oct 2006
Total Posts : 10
   Posted 10/19/2006 1:57 AM (GMT -7)   
I am supposed to be spending this time this morning learning how to use Microsoft Access. I have to create a new program for my Department at work to use on it. But I had a bad aura yesterday at work. Had to be driven home by work friends and spend the day sleeping. It was because I missed pills Monday... I had aura Wednesday, like Clockwork. Clockwork Orange. Remember? With the nasty men with black eyes? It came charging through my clean little world with violence.
Years ago my sister asked me what an aura was like so I wrote it for her.... thanks to the miracle of computers, I repeat that for you here. They haven't changed. I have just got older.... and there is no husband anymore.

"I have often tried to describe this before… never succeeded… never have found the words, the comparisons to make. I don’t know if I will now.
It can happen anywhere, anytime. It has happened to me while driving, in the grocery store, at home. I feel fine usually. Yes, I have my normal exhaustion and lack of recent memory, but for me, that’s run of the mill.
I start to feel slightly distracted? Maybe a bit aloof? A sort of spacey feeling, not dizziness, but rather disconnected. Then my limbs feel disconnected. If I am driving the car I am not quite sure that I am touching the wheel. My head gets light… the fear starts to grow.
At this time I usually say to myself “its coming” and try to put myself in a safe place… I have about 60 seconds. If I am driving, I pull over, If I am standing or sitting, I lie on the floor or put my head on my desk.
And then it starts to come, waves of fear, I feel disconnected from my body entirely and an inability to speak. If I can, I call out for help at this time, but often I can’t form the word “help” or if I can get the word out, I can’t make my voice loud enough to be heard.
If my children or husband are in the room, they know that it is coming just by looking at me. My eyes look fearful and I hold out my hand to them. They know to come and hold my hand to comfort me. If someone holds my hand at this point, the whole thing can go away.
As it gets worse, the déjà vu comes. I could swear, if I could talk, that this has all happened before. That I have been in the same room with the same people saying exactly the same words every time this has happened to me. A while ago it happened in front of a Red Lobster restaurant and I said to myself (in the soup that at that point was my mind) “Oh yes, we are always talking about fish when this happens” I used to find déjà vu interesting and amusing. Not anymore. The déjà vu is possibly the worst of it, when it comes I know that I will go further down before I come back up again. It terrifies me. I am furious that my misbehaving brain is doing this to me and there is nothing I can do to get it under control.
That brings up a point. My brain. Since this started to happen to me I have begun to view my brain as somehow separate from me, another entity. It is like a noisy neighbor that I keep telling to be quiet but who just ignores me. My brain doesn’t listen to a word I say, goes off on its own, doing what it wants without one bit of consideration for my needs.
“No brain… don’t do that now, I have work to do.”
“Screw you” My brain answers. “I do what I want, when I want, I am in control here”
I carry this badly behaved child with me wherever I go, and like a child, it is a source of great delight as well as frustration. It can lead me into green fields of imagination, it can remind me of past glories, it can delight and amaze me with its competence and quickness. But then it has a bad day, maybe not enough sleep or too much stress, and my brain gets angry, has a temper tantrum. “You’re not paying enough attention to me!” And then we’re off, my brain and I, into our own private hell.
After the déjà vu comes freezing… just freezing. I can’t speak, I can’t effectively move my body. And as always, waves of fear… this is it. If I am going to have a grand mal seizure this is when it happens, when my memory stops. If I have a grand mal the next thing I remember after this is usually waking up in a hospital or surrounded by concerned faces.
But I haven’t had a grand mal in three years, so what happens now is that it begins to subside. I remember my name, I remember the name of the person standing holding my hand. After a few minutes, I can talk… in short bursts and often unintelligibly, but I can talk. My tongue can move again.
The minutes pass and I begin to try to reassure whoever is with me that it will be OK. That I am coming out of it. I can feel their fear too. These things seem to open me up emotionally but only to the negative emotions I am surrounded by at that time… fear, anger, panic. The people around me are experiencing some or all of these emotions and I can feel it emanating from them in waves. I don’t believe I am usually the type of person that is unusually open to others feelings, but after an aura I can feel their emotion pricking me all over. Like little pins. “By the pricking of my thumbs”
If one of them overcomes that fear enough to hold me or say soft words to me, it helps, helps a lot. Just at this time though. If they hug me while I am in the middle of it, I just feel more fear…. And uncomfortable.
As the aura goes away and I begin to be able to talk, I get angry, angry at this stupid brain of mine that will not behave itself. And I am weak, weak, weak. The stupidness that comes after the auras is annoying too. For an hour or maybe more, depending on the severity of the aura, I can’t seem to put my thoughts together in proper order. Have to stumble over words and am so afraid I am not making sense. I become repetitive and confused. A big aura can knock me out for a day, make me incapable of action.
Auras don’t happen to me often, but I live in fear of them. Sometimes I can feel them coming… a teensy bit of spaciness, and can stop them by controlling my situation. I can take myself out of the situation that is starting them… tension or flashing lights or certain kinds of music… Rap or heavy metal especially. Often I have a warning and just put my head down for a minute or two and close my eyes. That can make them go away. I have done this even in business meetings and no one knows what is going on.
There… I have done my best to describe this. It is the best description I have come up with yet, but it still isn’t quite right. There is nothing to compare it to really. That is so frustrating because I am a very vocal person. I want to tell people what is happening to me all the time and yet, here is this awful thing that has become so prevalent in my life and I am unable to explain it. I wish I could meet someone else who experienced this and we could sit and talk and say “yes! I know what that feels like!” But that hasn’t happened yet, maybe it will soon. "

(I wrote this before I began to meet people on the net who were epileptic, and that was a great delight in my life)

Fen
Regular Member


Date Joined Jul 2006
Total Posts : 71
   Posted 10/19/2006 1:00 PM (GMT -7)   
Great post! IOWYTH,

You are NOT alone at all. I wish someone can invent a cure for this madness. Its now been 8 months from working cause of this and the stress and anxiety just get worse is all. The bad part is that doctors cant seem to help. I have had several MRI's and all show no problems yet I still have aruas and attacks all the time. Sometimes many a day.

Good Luck ALL !! :)
FEN
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 4:19 PM (GMT -7)
There are a total of 2,735,540 posts in 301,315 threads.
View Active Threads


Who's Online
This forum has 151416 registered members. Please welcome our newest member, JoanOnan.
330 Guest(s), 11 Registered Member(s) are currently online.  Details
George_, ewafromwarsaw, imagardener2, Gemlin, Loutucky, Girlie, LG13, Dmc695, U B Tough, Tall Allen, multifacetedme


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer