Epilepsy Talk
A Menu of Epilepsy Auras | June 6, 2010
One of the good thing about auras, is that if you’re aware of them, they’re effective (if unpleasant) warning signals of an oncoming seizure. I didn’t learn to identify mine (mouth filling up with saliva and disgusting metallic taste) until I was well into my 20’s. Then I added dark spots to my repertoire and I was having all three when I met my husband!
The good news is that once I recognized them, I would instinctively know to hit the floor (before I fell) or find a safe place to weather out the storm…
The fact is: There are probably as many or more types of auras as there are types of epilepsy…
Auras can last from several seconds to as long as an hour, and can sometimes end with feelings of extreme tiredness, weakness, heart palpitation, sweating and warmth throughout one’s body. And some people can experience auras and have no seizure(s).
Each person and each person’s aura patterns are different. They vary significantly between each individual. Yours may happen right before a seizure or several minutes to hours earlier. Common warning signs right before seizures are changes in bodily sensations, changes in your ability to interact with things happening outside you, and changes in how familiar the outside world seems to you. Other warning signs that may happen hours before a seizure are depression, irritability, sleep disruption, nausea, and headache.
People with complex partial seizures are the most likely to experience warning signs. Approximately 55% to 65% of people with these seizures experience some type of aura. It’s unclear whether having seizures that arise from one particular side of the brain makes you more likely to have auras than people whose seizures arise on the other side.
For lots of people, auras occur in an ordered progression. First you may feel fear…then déjà vu (the feeling that you’ve been there before)…then a strange taste in your mouth.
The part of your brain where your seizures originate (your seizure focal point) also may be linked to a specific type of aura because an aura represents the beginning of a seizure. Since different parts of the brain are responsible for different things, the warning signs you experience will be related to the functions of the section of brain where the seizure is about to occur. People whose seizures begin in the temporal lobe tend to have certain types of auras and those whose seizures begin somewhere else often will have different types.
Here are some types of auras that can happen alone or in combinations…
Visual changes
Kaleidoscope effects
Visual hallucinations
Shimmering sensations
Vibrating visual field
Distortions in size, shape or distance of objects
Bright lights or blobs
Zigzag lines
Tunnel vision
Blind or dark spots in the field of vision
Curtain-like effect over one eye
Blindness in one eye
Motionless stare
Dilated pupils
Auditory changes
Hallucinations — hearing voices or sounds that don’t exist
Being unable to understand spoken words
Muffled sounds
Buzzing noises
Loud or whispered volume
Temporary deafness
Physical changes
Weakness, unsteadiness
Changes in heart rate
Sweating
Nausea
Vertigo
Saliva collecting in mouth
Lip smacking
Chewing
Swallowing
Strange smells
Problems speaking
Repetitive movements
Limbs jerking involuntarily
Numbness or tingling on one side of face or body
Feeling of being separated from your body
Needing to urinate
Psychological changes
Confusion
Anxiety or fear
Physical detachment
Déjà vu or jamais vu, a sense of familiarity or unfamiliarity
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Resources:
Steven C. Schachter, M.D.
http://my.epilepsy.com/node/58
http://en.wikipedia.org/wiki/Aura_(symptom)
http://www.coping-with-epilepsy.com/forums/f27/experience-aura-auras-2485/
http://emedicine.medscape.com/article/1184509-overview
Tags: auditory changes, auras, physical changes, psychological changes, seizures, visual changes, warning signs
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It is interesting that you mentioned this. I was thinking on doing research on looking into auras and what the extent they can be
1) how some people have the same aura
2) how they change during the seizure.
3) how they may have different auras
My first and only aura prior to surgery was Flashing lights which were red and multicolor(mitochondria) it flashed and grew and then I could not talk and I was out.
after surgery-
bad taste that was awful and then I was out
aura that was before seemed to have gone, I had
Deja-vu after that
Spots were not as dramatic but that occured about 2 years later
Deja-vu then running seizures started to happen about 5 years after surgery
had 2nd surgery
things seemed real familar and lost my side vision during the aura
the deja-vu lessened
the running seizures seemed not be as evident
then peripheral vision lessened and I was totally confused and could not talk.
presently confusion occurs and then trouble talking (it comes out like babble and leads to loss of speech) my eye peripherally goes bad
spots are becoming evident and that gives me fear
Comment by Tonialpha — June 6, 2010 @ 4:44 AM
You sure do have a lot of auras on your “plate!” I feel for you. As you know from my post, all I had was the saliva, disgusting metallic taste and then big, black spots.
Comment by Phylis Feiner Johnson — June 6, 2010 @ 8:35 PM
There’s an interesting article about anesthesia and eplipsy at epilepsy.com professionals. Here’s the into: “In general, when seizures occur during surgery, their onset often coincides with the introduction of a specific anesthetic or analgesic drug. However, there have been reports of postoperative convulsions that appeared to be caused by anesthetic or analgesic drugs administered intraoperatively via injection or inhalation.” The link is http://professionals.epilepsy.com/page/procedures_anesthesia.html
Comment by Phylis Feiner Johnson — June 13, 2010 @ 9:39 PM
I noticed the Physical Changes. I have nausea and other symptoms. I think I have the flu. I have been sick for 2 days now.
Could it be aura’s instead?
Comment by Ruth Brown — June 6, 2010 @ 10:45 AM
I don’t think so. I’ve been throwing up for days.
Comment by Phylis Feiner Johnson — June 6, 2010 @ 8:35 PM
Sometimes I will get a EXHAUSTED aura that urges me to SLEEP….and if I refuse and push forward to get what I need to get done and all my appointments, I end up with a Gran Mal seizure later that day or within 24 hours. However, if I listen to my body and SLEEP the whole day (hopefully it’s a weekend) then maybe only minor other auras will occur and I will have dodged the BIG ONE!
I say, listen to your warning signs and be grateful for the auras.
Comment by Ona Green — March 26, 2013 @ 5:52 PM
Hi Ona, I agree. It’s definitely stress/exhaustion calling. And if you don’t listen, you know what will probably happen!
Comment by Phylis Feiner Johnson — March 26, 2013 @ 6:55 PM
Hi Phylis, I hope you feel better. I take 1/4 cup of Pedialyte and that stops throwing up and diarrehea.
Comment by Ruth Brown — June 7, 2010 @ 1:48 AM
Well, it worked for my cat..why shouldn’t it work for me?
Comment by Phylis Feiner Johnson — June 7, 2010 @ 2:11 AM
I hope you are feeling better.
Comment by Ruth Brown — June 7, 2010 @ 8:46 AM
Yup! Nothing like a nice get-away to cheer you. (And I’ve stopped throwing up!)
Comment by Phylis Feiner Johnson — June 11, 2010 @ 8:55 PM
That’s great Phylis, where did you get a way to?
Comment by Ruth Brown — June 13, 2010 @ 9:45 AM
We went to Philly, wined and dined with friends…I caught up with my cousin…and Arthur threw me a surprise “white night” party (I can only drink white wine)the night before my birthday.
I also had a 3 hour lunch with the Acting Director of our local Epilepsy Foundation (EFEPA). I sure hope she gets the position permanently. She’s young, full of ideas and enthusiasm and would be a breath of fresh air to the stoggy old-boys network at the Board of Directors meetings. Her first mission is to clear out all of the dead wood on the board. YAY!!!
Comment by Phylis Feiner Johnson — June 13, 2010 @ 9:46 PM
It’s always nice to read what everyone says!
Comment by Tonialpha — June 13, 2010 @ 10:31 AM
I like your article about anesthesia. I have had a hard time w/ it. The doctors will tell me that I will have seizures during them. I only remember twice having problems. I think the suggestion of pre-oping a patient w/ a light medication like valium or doing yoga.
Comment by Tonialpha — June 14, 2010 @ 5:07 AM
I am going to have a procedure. The doctor told me that I can have 1 or 2 epilepsy medications. I told him that I had to have something so I do not go into status.
Comment by Ruth Brown — June 14, 2010 @ 6:26 PM
That’s right. In cases of epilepsy, they can adjust your AEDs with the anesthesia so you don’t have a seizure during the procedure.
There’s a link on epilepsy.com about premedication for epilepsy patient procedures.
“During the preoperative interview, the anesthesiologist determines and prescribes premedication for the patient. The choice of premedication can have major implications for the patient with epilepsy.
Administering the patient’s daily medications orally with a sip of water or via an alternate route (intravenously, intramuscularly, or rectally) can avoid decreasing serum levels into the subtherapeutic range. Not only AEDs but also antihypertensives and cardiac, diabetic, and asthma medications should be given in this way.”
http://professionals.epilepsy.com/page/procedures_premedication.html
Comment by Phylis Feiner Johnson — June 14, 2010 @ 10:12 PM
Phylis,
How do you tell the difference between an aura for a seizure and a panic/anxiety attack? I was hospitalized in February for a week because I had 4 seizures in one day, which had never happened. I had my husband call an ambulance so I could get something to stop them. My neuro admitted me to do a video EEG for a week. I had both epilepsy and non-epilepsy seizures. I am going to a psychologist next week for a consulation for anxiety. My problem is I don’t know which is which.
Comment by Tennille English — May 4, 2011 @ 10:18 PM
Here’s one thought: Seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma.
Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures.
It’s a legitimate seizure and should be treated that way, but it’s not necessarily caused by a problem in the brain.
In others words, you could have BOTH.
So your auras might be similar or different. (A nice way of saying I don’t have a real answer to your question!)
Doctors have identified certain kinds of movements and patterns that seem to be more common in psychogenic seizures than in seizures caused by epilepsy. Some of these patterns do occur occasionally in epileptic seizures however, so having one of them does not necessarily mean that the seizure was non-epileptic.
Video-EEG monitoring is the most effective way of diagnosing these seizures…so you’re definitely on the right track.
It allows prolonged simultaneous recording of the patient’s behavior and the EEG. Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.
Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine: whether events with unusual features are epileptic seizures…the type of epileptic seizure, and…the region of the brain from which the seizures arise.
If you DO have psychogenic seizures, it doesn’t necessarily indicate that you have a serious psychiatric disorder.
The problem does need to be addressed and many patients need treatment.
Sometimes the episodes stop when the person learns that they are psychological.
Some people have depression or anxiety disorders that can be helped by medication.
Counseling for a limited time is often helpful. And the prognosis is good, with 60 to 70 percent of patients alleviated of seizure symptoms.
Another possible way of coping is to reduce your stress, take time out, go for a walk, try deep breathing (but NOT hyperventilating!) music, meditation, muscle relaxation or even biofeedback.
And above all…be kind to yourself.
Comment by Phylis Feiner Johnson — May 5, 2011 @ 11:55 AM
Tenille,
Thank you for sharing your information.
I just came out of a monitoring unit where they increased Keppra XR by 2 (12) and Zonegran by 2 (6) and discontinued Tegretol. They changed my VNS too. I have to act mellow from the hospital visit. It is hard to keep my gait at times. Diarrhea at times. Emotional swings do to the change of the medication in the hospital.
They also changed the VNS.
They asked if I would go on a drug study similar to Tegretol. Oh boy!
We are all strong people. I think we all are! The medications throw us for a loop at times!
Comment by Toni Robison — May 4, 2011 @ 10:39 PM
Toni,
Welcome back!
Do you think these symptoms are part of getting used to the drugs or lasting side-effects from the dosages themselves?
I have to give you credit after all you’ve gone through to volunteer for a clinical study.
Do you know who’s running the trials or whether it’s an adjunct med for partial-onset seizures?
I sure hope you feel better. It breaks my heart to see you so miserable.
Comment by Phylis Feiner Johnson — May 5, 2011 @ 12:01 PM
I never told you what happened during the procedure. I was having aura’s so I went to the ER. I had called my doctor before I went.
They only gave me Lorazepam. They did not give me my regular pills until my seizures got real bad just before the colonoscopy. Then they asked me if I wanted to go through with it.
I had done all of the pre-op and I figured I might as well go through with it. There I was having seizures or auras, I am not sure which. No one would make the descion for me, including the doc.
I had seizures during the colonoscopy. It was the first time my doc had done one with a person having seizures. I do not know if he stopped before he completed it.
I think it scared him.
Was it stress, or auras, that caused my seizures? I had the same problem with another procedure where I took my meds. I had to cancel because I had to be real still during this procedure.
Comment by ruth brown — May 13, 2011 @ 5:16 AM
I think it was a combination of stress and the ignorance of the doc.
Maybe next time you have to go under anesthesia you should check with your neuro for advice?
Comment by Phylis Feiner Johnson — May 13, 2011 @ 2:46 PM
I had auras all my life but they didn’t become full seizures until I was about 13 or 14. The Dr. Says I have a Neurological Migration Defect in the temporal lobe of my my brain (thus my aura being dajavue) The don’t always turn into full blow seizures in fact most of the time they go away,
I didn’t want to tell my dr. that the pills weren’t 100% efective and have maybe 2-4 full blown seizures a year that I didn’t always admit to for the last like 10 years cause I didn’t want to lose my license, I am now 29 and still on the same meds for about 15, years. But a few months ago I woke up in the middle of the night, around 4 and had a aura becoming a seizure. (It never happened at this time of day before, not even just an aura) So I figured I’d finally come clean and fess up to the entire ordeal.
He upped the meds and a couple months later I had a seizure (which I wouldn’t have been that bothered by) except this time I was on my tread mill and I didn’t get a warning sign. All I remember was I was standing there running and all of the sudden I woke up on the floor with rug burns on my hips and a black eye. I told my Dr. right away and he upped the meds again.
But the biggest thing that pissed me off in that whole ordeal was that I didn’t get my usual aura. (which I now realize has been a blessing for someone who has seizures).
Lately I’ve been kinda afraid that my warning sign might be gone. I’m feeling pretty alone, cause I don’t think anyone realizes how much this has scared me. I just hope that the med increase will take care of my seizures, or at least that I’ll never have a seizure again without getting a warning sign.
I guess what my biggest intention for writing all this is because for the first time I feel like my life is a whole lot different from everyone elses, I feel like I’m defective compared to the average person, (especially to my twin sister who has no health problems at all.) I’m kinda scared that after all these years something as little as not having a warning sign is affecting me inside so much
Comment by Robin Zank — November 16, 2011 @ 4:50 PM
First of all, you’re NOT defective any more than the rest of us here. (If you call ME defective, I’ll wring your neck!)
Secondly, I certainly understand your concerns and fear.
If you’re still worried about the med levels, have blood work done, so you can see whether the levels of the meds in your body are too little, just right, or too much.
As for the auras (or lack of them), you might want to consider keeping a Daily Seizure Diary — noting your sleep patterns…what you eat and when…your daily activities (and emotional upsets), how you feel before a seizure, during a seizure, after the seizure and the duration.
This might give you a more clear idea of what’s going on with your body. It could be that your aura has changed and you don’t recognize the “new” one.
One more thing. I’m inclined to believe that since your seizures didn’t begin until your teens that they might be in some way hormonally related. Do you, by any chance have them around the time of your period?
Comment by Phylis Feiner Johnson — November 16, 2011 @ 6:13 PM
Thanks I really appreciate the response. And to answer your question, at first my mom figured that might be the situation, but after a while of documenting and stuff it didn’t seem to be a pattern. Plus (not to get too personal) I am on Meraina and I maybe have a slight period once a year. But other that it does make sense that maybe puberty gave my auras the final kick into overdrive. I remember trying to describe my auras before to my mom when I was like 7 or 8, but I guess I can’t blame her for not being able to give me any advise. I just remeber the day I first had a seizure, I was getting ready for school, I had an aura(I figured it was just another of the same old thing) until things started to go dark, and i woke up on the floor with an EMT asking me my name. I was kinda like, “oh so that’s what those where” I don’t have auras allot anymore, and when I do they usually go away, but when I start feeling dejavu, nervous, and like I don’t know whats going on around me, I know that it’s time to hit the floor cause I know what’s comming next. I’m hoping the reason I didn’t get an aura this time was because I had been running on the tread mill for about 15 minutes and that maybe because my motablism was going that I just didn’t get time for the warning to start in one spot and slowly spread out. I’m a little weary about running on the tread mill, My seizure was on Friday, and I haven’t run since. I will tell you one thing I’m never going to run without the safety stop clipped onto my shirt. I would probably thought that maybe it was just that I blacked out from running, even though I didn’t have my warning I new a seizure had taken place because when I woke up I could feel the pain in my eyes from rolling back.
I’ve been doing tae boe and indoor exercises since then, cause the treadmill is in the garage. I plan on giving the treadmill another chance, but only when my husband is at home, so that I can call him when I start running, and if he doesn’t get my second call 1/2 hour later to confirm I’m done and comming in the house, then he better come out and check on me.
Oh! and a nother thing that just came to my mind, the only other pattern I notice in my seizures is that they usually occure in the morning around 7am-2pm-being the latest. (thus why I was a little worried when I had that seizure 3 or 4 months ago that took place somewhere around 3am.
PS. It feels really nice to finally talk to someone about this. Instead of just my neurologist for the past 15 years
Comment by Robin — November 16, 2011 @ 7:56 PM
Geeze, I’m stumped about why you have seizures then, but these 2 article may help you:
Epilepsy and Exercise (Maybe you should ramp it down a little…)
http://epilepsytalk.com/2009/11/13/epilepsy-and-exercise/
Epilepsy and electrolytes
http://epilepsytalk.com/2011/10/16/epilepsy-and-electrolytes/
Comment by Phylis Feiner Johnson — November 16, 2011 @ 9:23 PM
I have had an aura twice in past 2 weeks after seizure free for about 5 years. Both auras were not followed by seizure. Any input as to why this is happening>
Comment by michelle — November 17, 2011 @ 3:45 AM
I’d never heard of this, so I looked around and apparently they are simple partial seizures.
How about if you keep a daily seizure diary and maybe you can see what’s triggering this? (A breakthrough seizure possibly, or warning of a possible one?)
Are you on any meds? If so, bloodwork might be a clue.
TELL YOUR DOC!
Comment by Phylis Feiner Johnson — November 17, 2011 @ 12:23 PM
no I’ve been off tegretol for about 4 years- just on tranxene for anxiety. Going to Dr today
Comment by michelle — November 17, 2011 @ 2:07 PM
Excellent. Please tell me what the doctor says. I’m in South Carolina for an epilepsy charity event, so I’m only checking my email (and website) once a day. But, if you need to, you can call me on my cell. (610-517-7576) and at least leave a message and I can call back from the caller I.D
Good luck!
Comment by Phylis Feiner Johnson — November 18, 2011 @ 1:56 PM
enjoy south carolina! dealing w/ nausea and just do not want to take meds. but doc says is stomach not meds., went to ER. They noted my discomfort and no voice and felt they would do a throat work up and rule out . Told me to contact a GI doc and Epileptologist stating it was meds. or stomach problem. Not an immediate emergency!
Comment by Toni Robison — November 21, 2011 @ 4:02 AM
Strange that something like colitis would affect your voice…? Go for the throat work and then a colonoscopy (once you find a good G.I. guy)
The prep for the colonoscopy is worse than the procedure, but make sure the head anesthesiologist knows you have epilepsy and will address your meds from the start.
Toni, I’ve had colitis for years. And there are easy, non-reactive drugs. I’ve been taking Hyoscyamine for 30 years without incident (but I’m sure there are newer meds out) and basically it paralyzes your colon temporary until the cramping stops. It works with no side-efects and no dangers. I don’t know how it does its magic, but it works!
Comment by Phylis Feiner Johnson — November 22, 2011 @ 2:49 PM
My son is 18, when he has experienced auras as long as he can remember, he would say ” mom I am having deja vu, and it is making me sick”, he would have to lay down for a few minutes and then he would be fine. I never thought much of it. I used to experience it myself when I was a kid. When he was 14 he would complain of it and then pass out for a few seconds, when he would come to he was sweaty, grouchy and tired. I took him to the pediatrician and they did a test on his heart and decided that it was due to a slightly enlarged heart, and tachycardia. I thought no more of it, and he only did it maybe 3 times from 14 to 16. Well on June 17th of this year, we were at Myrtle Beach, and he had a horrible Seizure that lasted for minutes. He was jerking, vomiting, unresponsive, unconscious, sweating, and he urinated on himself. When he came to he was argumentative, and trying to run for about 30 minutes. He does not remember anything that happened for a few hours. He remembers waking up at 8:00 a.m. and getting in another bed, he says he was feeling deja vu then, and the next thing he remembers was us in the ambulance right before we got to the hospital. That was around 2:00 p.m. He had not been out in the sun for 2 days so I know it wasn’t the heat. He has passed out once since we came home and numerous times he says he has felt the deja vu. We have been waiting for the neurologist to see him, his appointment is for August the 28th and in the meantime his family physician has him on 100 mg. of Neurontin three times a day. This site has helped me understand this somewhat.
Comment by Serena Starr — August 2, 2012 @ 2:37 AM
I know you must be frightened Serena, but it will be comforting to finally get some answers.
One suggestion before you go to the neuro: try to keep a Daily Seizure Diary, noting your son’s sleeping patterns, what he eats and when, daily activities (including unusual emotions), how he feels before a seizure (auras AND triggers?), during a seizure and, if you can, the duration of the seizure. That can help the doc get a handle on what your son is dealing with and perhaps start out with a better understanding.
Here’s a general article with tips and resources:
If You’ve Just Been Diagnosed with Epilepsy…
http://epilepsytalk.com/2012/04/30/if-youve-just-been-diagnosed-with-epilepsy/
And here are some valuable tips to read before you go to the neuro:
Three Secrets to Better Care from Your Doctor
http://epilepsytalk.com/2010/06/13/three-secrets-to-better-care-from-your-doctor/
Let me know the outcome and how you do…
Comment by Phylis Feiner Johnson — August 2, 2012 @ 9:01 AM
Hello all, I am a 52 year old man and I get aura’s without a headache or seizures about 3 to 5 times a year, its zig zag lines that get bigger and bigger until it goes away, usually last 20 to 30 minutes, it effects what I am doing because my vision is messed up for that lenth of the time. when its over I feel a little weak and blah. The other morning I awoke at 6 am to get ready for work and an aura started and lasted 30 minutes, a week before that one I had two aura’s in the same day, none of this has happened before, I never had two in the same day or that time of the morning, Is this something to be concerned about or am I overreacting, I think I should go and tell my doctor about the aura’s, Thank People
Comment by David Hall — September 8, 2012 @ 9:04 PM
According to The International Classification of Epileptic Seizures, “Auras without subsequent seizures should be considered a type of SPS.” (Simple partial seizures — which occur without losing consciousness..)
And popular opinion is that “something is going on in your brain but it isn’t spreading.”
I don’t mean to scare you and I’m not saying this as a diagnosis, but I DO think you should go to a neurologist for an EEG to either put your mind at peace or to find out the underlying cause.
EEG (Electroencephalogram) is a non-invasive test which detects and records electrical impulses on the surface of the brain. These impulses are transmitted from small metal discs, placed on the person’s scalp, through wires which are connected to an electroencephalograph.
This instrument is used to register the activity and record it on graph paper or on a computer screen. It is a safe and painless procedure which will not affect you in any way.
An EEG is used by a neurologist to determine whether there are any irregular electrical activities occurring in the brain which may produce seizures. It can help identify the location, severity, and type of seizure disorder.
Note: An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it. (I know, it’s really confusing but EEGs can come out with a false positive or a false negative.)
And if you’re casting around for a neurologist, this link may help: 2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/
It’s a compilation by website forum members who have had positive personal experiences with docs over the years.
Good luck to you David, and please let us know the outcome and how you’re doing!
Comment by Phylis Feiner Johnson — September 9, 2012 @ 11:07 AM
i thought that auras could also be the seizure itself? I was recnetly diagnosed w TLE/complex-partial seizures, based one some of the examples noted, which I have experienced.
Comment by it's just me — January 10, 2013 @ 1:21 PM
As I understand it, auras are a pre-seizure, sort of warning. You may be confusing the aura and the seizure, since one often follows quickly after the other.
For me it was drooling (yuck) and a disgusting metallic taste in my mouth. Then, down I’d go. Sometimes, before I had the chance to “prepare myself”.
Comment by Phylis Feiner Johnson — January 10, 2013 @ 2:24 PM
I find it hard to describe what I feel before a grand-mal. I sense my thoughts drifting away, as if I could grab hold of them again, even though I don’t know what I’m grabbing hold of. It’s not the same as just forgetting or becoming absent. If you drew a picture on a balloon and popped it, the picture is gone in a flash; forgotten. But in my case the balloon is let go; I know the picture is drifting away – I can see the balloon taking it – but it’s too far to know exactly what it is. Eventually I give up chasing it and move on. The idea that I’m experiencing the process of a thought being lost is what’s confusing, surely it’s either there or not! Yet it seems so simple at the time. I’ve never known how to categorise this sensation. I become unintentionally apathetic too. Even though I know what the aura will eventually become, I always attempt to carry on routinely, albeit talking gibberish and occasionally saying I feel weird.
Comment by Nick Wognum — March 19, 2013 @ 1:12 PM
Nick, is it sort of like losing a sense of time and space?
Or sort of an out-of body experience, watching yourself reach for something that’s not there?
Comment by Phylis Feiner Johnson — March 19, 2013 @ 2:35 PM
A bit of both really. Sort of like reaching out for something that isn’t there, but not in the physical sense. Maybe I should boil it down to confusion! It does at least lead me to say I feel weird, which is the red light for people around me.
Comment by Nick Wognum — March 21, 2013 @ 11:54 AM
Well, the only positive thing to say is that it’s probably your aura — and a warning of an impending seizure.
I sure can’t miss my auras — a disgusting metallic taste in my mouth and heavy salivating. (Lovely.)
But, at least I know, it’s time to hit the floor, before the floor hits me!
Comment by Phylis Feiner Johnson — March 21, 2013 @ 12:42 PM
I have been having these auras that turn into what is like a small seizure on & off for over 15 yrs now. I have seen 4 Neurologists & they have all said Migraines. I do get migraines as well. There were several years I did not have these attacks & now they are back. I have had CT’s, & EEG’s done they are normal. My MRI has a small abnormality but I’m told nothing to be concerned about. I am currently seeing my 5th Neurologist. After he did the nuero exam the flashlight put me into an attack I was unresponsive, muscle spasms, & confused for a while after words. My husband said I was out for about 15 min that was 3 days ago have had an aura on an off since & a lot of pressure in my head with sharp piercing pains, also sensitive scalp. Looking for anyone with similar symtoms or advice desperate & about ready to give up.
Comment by Brandee — March 23, 2013 @ 4:56 PM
Hi Brandee — Welcome!
Flashing light is a “reflex” seizure trigger.
In this type of seizure, it occurs consistently in relation to a specific trigger.
For example, photosensitive epilepsy where seizures are triggered by flashing lights, is a reflex trigger.
If you DO have If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure.
The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.
And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.
In addition, migraines and epilepsy are more closely related than you may think.
People with epilepsy are more than twice as likely to develop migraine headaches as those without the disorder. Research showed that more than 20 percent of people with epilepsy have migraines, compared to 11 percent of the general population.
Evidence supports the coexistence of migraines with the following conditions:
* In migraine sufferers, 6% have epilepsy, more than ten times than the general population.
* In one study, people and their relatives who are diagnosed with epilepsy were found to be approximately 2.4 times more likely to have migraines than the control group.
* In another epilepsy study, about 16% of those people who had migraines also experienced epileptic seizures before, during or after a migraine.
* While most migraine sufferers do not have epilepsy and most people with epilepsy do not suffer from migraines, these findings still indicate a significant “overlap” of both conditions.
Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy. And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”
There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide). However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.
For the full scoop, read:
Epilepsy & Migraines — Kissing Cousins
http://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/
I really hope you find some relief.
Comment by Phylis Feiner Johnson — March 23, 2013 @ 5:15 PM
Thank you
Comment by Brandee — March 23, 2013 @ 6:46 PM
I am currently on Zonisamide & have tried Topamax in the past but had a bad reaction to it. My migraines are triggered my colognes & perfumes those will instantly put me into an aura. Strobe lights, fire works, & flashing lights do the same.
Comment by Brandee — March 23, 2013 @ 6:54 PM
Well, the perfume companies won’t make any money on you!
And happily the disco era is over!
Just stay away from any flashing lights…
Comment by Phylis Feiner Johnson — March 23, 2013 @ 7:25 PM
I wish that was all those are just my known triggers (lol) the aura comes on about 4-5 times a week & every day I have this pressure in my head that I described. Hopefully this New Neurologist will have some better suggestions. It’s the days that that the aura gets bad & turns into the seizure like attacks that I need to get under control I work & have kids. It’s hard when something controls your life.
Comment by Brandee — March 23, 2013 @ 7:39 PM
My aura starts with fuzzy vision, & pressure in both eyes, then numbness on right side of face & down arm, slurred speech, confusion. Sometimes before the aura comes on I will mess my sentences up. There is no headache present @ the time aura begins other then pressure in my head that feeling is there every day. After aura starts sometimes I will go into this attack that starts with tremors, muscle spasms, I become unresponsive & eyes roll up. The attack can last for mins to having several in one day. I am confused for a few minutes after & very sore. Sometimes I get a bad headache & other times not @ all. Then I also have days were I just get the aura & headaches with sharp pains & sensitive scalp. I am Zonisamide, Amlodapine, & magnesium oxide. I am seeing a psychotherapist & she does not feel this is brought on by anxiety or stress induced.
Comment by Brandee — March 24, 2013 @ 10:57 AM
So sometimes you get the aura and not a seizure?
Believe it or not, An aura is actually a a Simple Partial Seizure.
In other words, the aura IS the seizure. It’s a small seizure that has not spread into an observable seizure that impairs consciousness and your ability to respond.
You don’t lose consciousness.
Something is going on in your brain. But it isn’t spreading.
Sometimes this abnormal electrical activity tapers off. At other times, it spreads and leads to severe seizures.
Auras can occur as a warning that a bigger seizure is about to happen. And sometimes they can occur just by themselves.
You can get the full details at:
Auras without Seizures
http://epilepsytalk.com/2013/02/18/auras-without-seizures-2/
I hope this helps…
Comment by Phylis Feiner Johnson — March 24, 2013 @ 10:37 AM
So far every Neuro I’ve seen has diagnosed me with migraines with aura & all the meds I’ve tried have given no relief. I went 3 yrs with out this type of aura or attack had a baby & now they are back. Very frustrated that’s why I got the referral for a new Neurologist. The last one admitted me and gave me DHE & that didn’t even help.
Comment by Brandee — March 24, 2013 @ 11:03 AM
I’m thinking it could have something to do with your hormones.
You know, hormones get all out of whack when you’re pregnant.
I know someone who got MS after her pregnancy, yet I also know a person whose Fibromyalgia disappeared after pregnancy.
So, the hormonal changes during pregnancy could have exacerbated your seizures.
Also, as your last neuro suggested, it COULD be a thyroid imbalance.
Did he give you a FULL thyroid panel of T4, T3 and TSH (Thyroid Stimulating Hormone)?
Interestingly enough, Life Extension Magazine says of DHEA: “Some of the beneficial neurosteroid effects of pregnenolone result from an increased activity of brain cells.
But in people with known seizure disorders (epilepsy), and in animal studies where the steroid is directly injected into the brain, this effect can lower the seizure threshold and make a seizure more likely.
There are no published studies, however, suggesting an increased risk of seizures from pregnenolone supplementation in humans WITHOUT a prior seizure history.”
(Pregnenolone like DHEA, is a naturally produced steroid hormone that acts as a “parent” to a variety of other hormones. And in those WITHOUT epilepsy, it can have many benefits, but it appears to have the opposite effect for you.)
Comment by Phylis Feiner Johnson — March 24, 2013 @ 11:59 AM
I have hypothyroidism which I did not have until after pregnancy. I currently have the mittens IUD which is getting removed Thursday. I know several people who also had Hypothyroidism while on the Mirena & after it was removed their thyroid went back to normal. I am on Levothyroxine for my thyroid . These Auras & attacks also happened after I had my 1st child so hormones are a factor.
Comment by Brandee — March 24, 2013 @ 12:20 PM
If you have hypothyroidism, researchers suggest large doses of selenium — a common over-the-counter supplement — to bring your thyroid levels back up. You can probably get enough selenium by taking a good multi-vitamin and mineral product. Just make sure you’re getting 200 mcg per day of selenium.
Your Thyroid…What Everyone with Epilepsy Should Know
http://epilepsytalk.com/2011/06/01/what-everyone-with-epilepsy-should-know-about-their-thyroid%e2%80%a6/
Comment by Phylis Feiner Johnson — March 24, 2013 @ 2:02 PM
I am on a multi vitamin but just checked & it only has 20 mcg’s of Selenium. Thank you
Comment by Brandee — March 24, 2013 @ 2:29 PM
I’ve been having visual auras all my life but not as many as I’m having after going through menapause. I have 20 visual auras per day lasting up to a minute in duration and completely distorting my vision and can make me disoriented, anxious, and yes have headaches but no seizures. Just auras. I’m told I’m lucky. Oh yeah try to go anywhere you’re unfamiliar with and see how well you get around. What job do you do. How do you make a living and remain independent? This is all new to me. I’ve had epilepsy for 43 years and my seizures suddenly changed after menapause and coming off of dilantin. I’m off of dilantin because of the possible severe side effects it can have when you been taking it for more than 20 years. I’ve been on it for 35 years. Feeling a bit Betwicked, bewildered and blind. I’m living with my sister and her 2 kids. Not an ideal situation. For adults they’re not very supportive.
Comment by Nicole — April 1, 2013 @ 1:39 PM
Nicole, I’d bet that your seizures are hormonal. Sort of like catamenial epilepsy in reverse.
Catamenial Epilepsy – Do You Have It?
http://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%e2%80%93-do-you-have-it/
Some recommend Hormone Replacement Therapy, but that’s another kettle of fish which I’d go over carefully with your GYN.
I wish I could be more helpful, but all research talks about is menopause and seizures…not AURAS and menopause.
Sorry I couldn’t be more helpful.
P.S. One shot in the dark is to have your thyroid levels checked.
Insist on running a full thyroid panel of T4, T3 and TSH (Thyroid Stimulating Hormone). Most docs will only test your TSH and tell you everything is ducky if you don’t spell out the full panel requested.
Your Thyroid…What Everyone with Epilepsy Should Know
http://epilepsytalk.com/2011/06/01/what-everyone-with-epilepsy-should-know-about-their-thyroid%e2%80%a6/
Comment by Phylis Feiner Johnson — April 1, 2013 @ 5:51 PM
Hello Nicole,
I have been having some visually distorting episodes, although I’m thinking they are now Simple Partial Seizures after reading more about seizures verses auras. The visual distortion episodes are very upsetting, for me. My perception of my husband is altered for a period of time (about 30 minutes) and I no longer recognize him. He may flirt with me, but he seems to be a stranger and I am scared. Together, my husband and I are working on these new visual distortion episodes and I am supposed to tell him immediately so that he can talk me through them and he will stop any flirting with me so I don’t feel uncomfortable. I think it’s important to be open and honest as much as possible with your friends and family. It took a LOT of courage for me to tell my husband about these visually distorting episodes and how they made me feel, but I’m glad, finally did. Communication is key.
Comment by Ona — April 2, 2013 @ 2:16 PM
I have a similar experience after my aura/attack I am confused & sometimes takes me about 20 minutes to remember people & things. I’m told they are migraines I’m on my 5th Neurologist it’s very scary. My auras start with my vision.
Comment by Brandee — April 4, 2013 @ 3:22 PM
Ona, thanks so very much for sharing your experience.
It’s always comforting to know you’re not in this boat alone!
Comment by Phylis Feiner Johnson — April 2, 2013 @ 2:28 PM
Does anyone have any home or over the counter remedies for auras that help? I am waiting to hear back from the Neurologist with my next apt. I am getting them daily & it’s making it hard to function. Being a mom, wife, & I work. The blurry vision, pressure in eyes & head, scalp burns in back of head, tongue, right hand & right side of face goes numb. I get shaky & hot flashes. Frequent urinating. Then I pray it doesn’t turn into the tremors & muscles spasms where I become unresponsive. It’s so frustrating. I just want to get through my day. I went years before my daughter with out these & now that they are back I wish them away.
Comment by Brandee — April 5, 2013 @ 10:28 AM
I know things could be worse & others struggle with way worse i try to stay positive. But feeling like this is hard. I miss time @ work & time with my family. Makes me feel like a bad mom & wife & I know that’s not true too. When I take over the counter stuff I end up with rebound headaches & the meds I’m on now I am not noticing any relief @ all.
Comment by Brandee — April 5, 2013 @ 10:33 AM
Well, two things. (I don’t remember if I said this before.)
Try keeping a seizure, aura, headache daily diary. Write down your sleep patterns, what you eat and when, your daily activities (including emotional upsets), any triggers that you notice, the timing of the events(s) and duration.
That will at least give your doc an idea of what you’re going through.
It sure seems to me like it’s time for a change of meds. And maybe a change of docs?
Comment by Phylis Feiner Johnson — April 5, 2013 @ 12:05 PM
P.S. Brandee, please don’t beat up on yourself.
That will just add to your stress, which we know is the #1 trigger in the seizure parade!
Comment by Phylis Feiner Johnson — April 5, 2013 @ 12:07 PM
Thanks Phylis I am keeping a diary & this is a new Neurologist he’s just looking @ my records & history before I go back.
Comment by Brandee — April 5, 2013 @ 12:38 PM
Ok. You might find this article interesting:
Secrets to Better Care from Your Doctor
http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/
I hope this doctor is a winner!!!
Comment by Phylis Feiner Johnson — April 5, 2013 @ 12:55 PM
Thanks
Comment by Brandee — April 5, 2013 @ 2:34 PM