Experience AURA or AURAS?

[KarenB]

Well...here's the thing...he's already had seizures recorded on EEG when he was in status. So...they already know where they're starting from and how they're generalizing and all that sort of thing.

What his neurologist is really looking for is an EEG when he's NOT having seizures, because in kids you have to look for subtle waves and spikes and such that often happen at night even when not having seiuzres that would indicate certain syndromes like Lennox Gestault or Dravet or Landau Kleffner, etc. He's had clear EEGs before (when not having seizures) that didn't show any of the characteristics of any of these syndromes, but apparently, some don't manifest until the child grows older.

Our neurologist in Bangkok is topnotch at reading EEG's -- he picked up that Jon was having right temporal lobe seizures (from very subtile waves in EEG) years before the American docs caught it on EEG (they didn't catch it until Jon was actually having a seizure while on EEG).

His neurolologist was originally going to wait about a month until we get this current surge of seizures settled down to do the video sleep EEG, but decided yesterday to go ahead and do a baseline EEG because (and this goes back to the auras topic) Jon is having some strange, psychotic-like behaviors before and after seizures, so want to see if these are actually seizures or something else. And the doctor wants to catch some of these behaviors on video tape.

 

[sturg]

KarenB, Are you still in contact with the neurologist in Bangkok? The many syndromes that children can have which cause aura/seizures is sometimes picked up through a time series of comparative EEG readings. Sometimes the time cycle can be long & with children, as they grow older, they are ever changing. I am impressed by the Bangkok doctor who picked up that Jon was having right temporal lobe seizures.-Sturs

 

[KarenB]

Yes, we're in Bangkok now -- that's who he's seeing, and then also consulting with the epileptologist back in U.S.

 

[willywills]

This is the most difficult thing

Hello,
When I had my first seizure was when i had a head injury,I fell on a concrete bolt,my head hit first and my hands never went up to protect myself which is a natural reaction.I went to the hospital where I had staples in my head for me yea was difficult but i had just been thru 6 operations so I guess I was use to get I.V getting stitches or staples.Over the next several days I encounted my first seizure which everyone thought maybe it was from fall and maybe it wont happen again.Five yrs later and I suffer terrible seizures.Now I am starting not to have aura but just seize I cant walk and last month I couldnt speak like i was having stroke,I couldnt remember my name,my son was trying to help me sit i was stuck it was the worst feeling.I have regret even for my children seeing this.I am the parent the one they rely on not me on them.Now I have this disabling disease and my p.c feels like its no biggie.Everytime i get any type of infection i will seize,I seize on certain meds,I seize on certain lights I just seize.My last seizure was my worst I end up falling in tub and spraining my neck c6 and my arm i had to go to medical facility to recover.My p.c doesnt beleive in klonopin or doesnt beleive in any type of anticonvulsant and I am on nuerontin and trilleptal she gave me the mirtizphane its antidepressent for sleeping but it made me seize. HELP does anyone else have a opinion.

 

[sturg]

What is the name of the neurologist in Bangkok. You don't have to respond-no problem if you want to keep private. I just want it for my contact files.-Sturg

 

[sturg]

willywills, Sorry you have to go through all this! Can you get a second opinion from a Neurologist who treats seizures only? Is there a direct support group in your area that you can contact & with there help get the proper edical attention that you require?-STURG

 

[KarenB]

Charcrin Nabangchang MD (He is also licensed to practice in California, and teaches at Mahidol University)
Medical School:
- M.D., Faculty of Medicine (First Class Honors), Pramongkutklao College of Medicine, Mahidol University, Thailand, 1989
Board Certifications:
- Diplomate of The American Board of Pediatrics, 1994
- Diplomate of The American Board of Psychiatry and Neurology, with Special Qualification in Child Neurology, 1998, Recertified 2009
- Diploma of The Thai Board of Pediatrics, 2000
- Diplomate of The American Board of Clinical Neurophysiology, with Added Competency in Epilepsy Monitoring, 2011
- Certification in Clinical Neurophysiology (EEG/Epilepsy), USA, 1998
Fellowships:
- Pediatric Neurology, University of California, San Diego, USA, 1994-1997
- Clinical Neurophysiology, University of California, San Diego, USA, 1997-1998

 

[KarenB]

Hello,
My p.c doesnt beleive in klonopin or doesnt beleive in any type of anticonvulsant and I am on nuerontin and trilleptal QUOTE]


Hi Willywills,

Your doctor probably doesn't believe in klonipin as it is in the benzo family, and highly addictive, and also your body gets used to it within a few weeks, and you have to keep increasing the dose.

Nuerontin and trileptal are both anti-epiletic drugs, but work best with certain kinds of seizures (usually partial).

Depakote (Valproic Acid) is often effective for many types of seizures, and I have one friend with seizures from a head injury (construction work), and this medicine works very well for him. However, it does have some serious side effects. My son was on it, and had to be weaned off because of liver problems and bone marrow problems.

If the drugs you are on now are not controlling your seizures, you need to discuss this with your doctor. You might want to keep a list of when you are having seizures (you can just get a calendar and mark it on there) and take that with you to your next visit.

 

[Futureghost]

I get auras all the time , and often no seizure. In fact I was sort of relieved to discover that I was epileptic because prior to that it's just been a never ending roller coaster of weird with absolutely no explanation, mountains of silent social judgement, funny looks, being treated as somehow untrustworthy or unreliable by family members, friends and so forth. Epilepsy was the final piece of the puzzle.

that's a tangent...i went on a tangent ...sorry.

 

[Helen67]

Thankyou for this forum! I am the same as you futureghost, I have auras but no seizures. I've come now on this site because I am currently having these attacks. I'm continuing to write although I've just had my 2nd today while writing. I'm trying to immediately descibe it......

Firstly seems to be a complete loss of mind control, visions and visions flashing across my brain, no idea wheather they are real or not..Cold sweat ripping through my body, shivers and shaking, nausea. Heavy rapid breathing. Feeling of total loss of control of body aswell as mind. Headache. Very scared. Upset and crying after.

The dejavu began this morning, and I knew eventually would leads to the attacks, can last one or two days, I hope just one.
Still seeing visions in my head and am trying to ignore them, just stood up and feeling dizzy, and absolutely not of this world!

I was sort of diagnosed as having TLE, I say sort of because when I had an EEG the auras had stopped, so nothing showed up, the MRI showed an all clear too. That was about 8 years ago, trying to explain the hallucinations and dejavu to the Neuro was difficult, which really surprises me after reading this forum, it seemed so hard for them to get a grasp on it, and I was asked if I do drugs..haha, me who's very anti drugs found the question ironic!

Eventually the came up with TLE, but never offered any advice or medication! I seem to get these auras about once a year. If they start to shorten in time between, I will go back to a DR and ask advice, now all you fantastic ppl have shown me I'm not going crazy! Want to stop for the time being, because I'm feeling very tired, and the visions are continuing.

One final question I have though, is that for a few days leading up to today, I have had a headache at the bottom left side at the back of my head....Has anyone else had this before an aura?
Answers would be really welcomed...All the best to you all!!!

 

[Jerrad]

Mine are visual. For a second, everything seems like it is slowed down, then suddenly everything seems to speed back to normal. It's an odd feeling and hard to explain.

Sometimes it's hard to know when it's an aura or i'm having a panic attack, both are about the same feeling, which makes my panic attack more...... panicky i guess.

 

[sturg]

Hi Helen67. Sorry you are experiencing these auras/panic attacks. You say that this only happens about 1 time a year. I get that same type of attack when I have monosodium glutamate(MSG) or an artifial sweetener. I do have temporal lobe epilepsy. I do take selected AED's for seizure control. By controlling what I eat & taking meds, as a 64 year old male, I have been able to control these auras. Everyone's aura/seizure keys are different so I am not suggesting that by doing what I do will control your attacks. I know exactly what your talking about-the auras are scary, you shiver, tremble, become sick to your stomache. The problem for me was when I tried to explain to doctors they just did not understand it. They first look for a mental instability such as narcotic intake. When you get a chance take a look at Dr Blaylock's youtube discussion on exitotoxins. Again, please do not interpret that I have the exact answer for your attacks. Through the year I have found the best doctor to interpret your problems is yourself. If you can find the right neurologist that will listen to you maybe they can offer some support for you. Question-Do these attacks come at the same time each year? Sturg

 

[Futureghost]

Mine are visual. For a second, everything seems like it is slowed down, then suddenly everything seems to speed back to normal. It's an odd feeling and hard to explain.

Sometimes it's hard to know when it's an aura or i'm having a panic attack, both are about the same feeling, which makes my panic attack more...... panicky i guess.

thats not hard to explain man. I watch the dropplets of water in the shower flat out stop in the air.
I stood there stairing at them thinking to myself

"this is NOT normal...am I having a seizure? No...I can't be if I were having a seizure how would I be able to think about all of this "

then i woke up in bed to my wife telling me I had a seizure in the shower.

thats how it goes.

 

[sjconner]

I just had my first neuro appt. The neuro says that I am having seizures until he can prove it is something else. I thought I was going crazy.

My field of vision would start to close down (like a faint) but I could still see. Then I would see people standing all around me and they are talking to me but I can't understand them. Everything would suddenly smell really strong. Then pins and needles from the top of my head down.

So far this has happened to me 3 times this year. How would you classify this stuff aura or seizure? So far no one has witnessed these.

 

[Futureghost]

I don't have any idea how to properly classify that...it's fascinating though.

 

[RanMan]

Sjconner,

Aura ~ I've been getting the same thing as you for 34 years.
My Neurologist says if I wasn't on AED meds, they would be full out seizures.

 

[sjconner]

I am glad I am not the only one. I truly thought I was losing it. I met with my Primary Care Doc today. I am starting on Topamax after Christmas.

 

[Maisy]

my smell one is mcdonalds big mac meal seriously, weird I know!!

 

[Futureghost]

While I was in the shower today My mind was wandering and it occurred to me that the strangest Aura experiences i have had might have well taken place during the actual unconscious portions of my seizure. What I mean is they might seem like they are going on now, but actually have happened something like a full minuter earlier. it would explain why when i seize it seems like I have gone directly from the moment before the seizure to the moment after. Just an interesting thought I had...wanted to share it.

It's just a fascinating notion to me that at any given time i am having an aura, I might have already seized something like a full minute or two prior and just have not "caught up" with time.

It also makes me wonder...exactly how far do our brains lag normaly. I mean how big is the gap between when we experience a thing and when it actualy happened. they are definitely not in an analogue time signiture so there IS a gap.
I wonder how big it is though.

 

[PFunk]

I’m fascinated with the minds ability to manipulate the perception of time, or rather, it’s susceptibility to the manipulation of perceived time. I’m rapt with all auras. The disturbance they cause to our conscience flow as areas fire out of sequence. It’s a rare opportunity of incite to the mechanisms that make our brain. Sadly, this further confirms we are organic computers comprised of molecules and energy… and perhaps nothing more…

but I’m holding out, hoping there’s something coming