Dr's makea snap judgement w/out the facts

[Belinda5000]

I saw my VNS doc today who's an epileptologist he doesn't handle my meds.
He was asking me how my seizures where doing and I gave him list of how many
I'd had a month since June.
Than I started talking to him telling him about how crowds can trigger my seizure's.
But I wasn't going to let that keep me home.
He said he'd never heard of a crowd being a trigger for a seizure.
I didn't tell him how I had tonic-clonics and complex partial seizure after the aura.
Or it just happening to me.
He said It may be a anxiety attack I don't see how I go into full blown seizures.
My neurologist who handles my epilepsy has never once brought that up.
When I see him the 16th of this month I plan to talk to him about what this other guy said.
They know each other .

Belinda

[brain]

First of all, who referred you to the epileptologist?
Did the neurologist refer you to him/her? If so,
medical records are usually given to you or
at least forwarded to the epileptologist before you even
arrive, so he/she would have info upfront;
at least - that's how it's all been with me on
my end - almost always at 98% of the time.

It would help and be of great assistance if you
would speak with your Doctor in bringing your
medical records with you to the Epileptologist's
office, so that he/she may be able to review it all.

[Belinda5000]

I went through twoor three other epileptologist take care of my VNS before I found this guy tguy. It was the Atlanta from cyber onics who gave me this guys name.
I plan to talk to my neurologist about what happened when I saw this guy.
If nothing else maybe he can talk to him since he knows him.
Belinda

[darkmarkshark]

it could be the noise from the crowd, or having so many people move past you at the same time emulates a situation similar to a rapidly flickering light thats causing your seizures.

[Bernard]

He said he'd never heard of a crowd being a trigger for a seizure.

Well, then it obviously can't possibly be true, can it?



Epilepsy isn't a one size fits all disorder. Docs would do well to listen and investigate and not limit themselves to what they read in journals.

[seizures4ever]

Belinda,

Were you at Emory? Several of those doctors have a tendency to attribute everything that they can't explain or control to anxiety/panic attacks (especially with women).

Yes, crowds can trigger seizures. Anything can trigger a seizure. There are no set criteria. There are "typical" triggers that many people with epilepsy have, but if yours falls outside of "textbook" that does not negate the reality of the trigger.

Emory is a research/teaching hospital. They like "textbook" answers, and they like to be in control for their students (interns) to learn a "typical" case. You may not have gone to Emory, I have no idea. But nonetheless, an epileptologist should know better than to make a blanket statement like the one you described!

Sorry for my rant, but I was also told something similar by an epileptologist in Georgia. Luckily, my "plain ol'" neurologist gave me an ambulatory EEG (portable) with a heart moniter and found out that it was not anxiety, but (surprise) atypical seizures.

Hugs to you. -Julie

[dfwtexas]

I get very anxious/nervous when I am around large groups of people. I know a few people have posted on here that stress is a trigger, so it seems logical to me that it could bring it on...so far it has not triggered an episode for me. I have only told a few people about my seizures and I make sure if I am going to be in a crowd situation that I have one of allies with me. It does a lot to calm me.

[RobinN]

"If you ask what is the single most important key to
longevity, I would have to say it is avoiding worry, stress
and tension. And if you didn't ask me, I'd still have to say it."

— George F. Burns

[Belinda5000]

Belinda,

Were you at Emory? Several of those doctors have a tendency to attribute everything that they can't explain or control to anxiety/panic attacks (especially with women).

Yes, crowds can trigger seizures. Anything can trigger a seizure. There are no set criteria. There are "typical" triggers that many people with epilepsy have, but if yours falls outside of "textbook" that does not negate the reality of the trigger.

Emory is a research/teaching hospital. They like "textbook" answers, and they like to be in control for their students (interns) to learn a "typical" case. You may not have gone to Emory, I have no idea. But nonetheless, an epileptologist should know better than to make a blanket statement like the one you described!

Sorry for my rant, but I was also told something similar by an epileptologist in Georgia. Luckily, my "plain ol'" neurologist gave me an ambulatory EEG (portable) with a heart moniter and found out that it was not anxiety, but (surprise) atypical seizures.

Hugs to you. -Julie

Yes I've been to Emory quack city.
But Emory docs never heard said a word about crowds bringing on my seizure's.
The doc that say it sounded like anxiety attack use to practice at Emory.
most of these neuros are just full of it.
Belinda

[JLynn]

A few bizarre ones of mine include:

Wide open spaces made of concrete
Grocery stores (I think its the lighting)
Visual stimuli overload like sunlight flashing in and out of tree's, glares off of signs and metal bumpers, windows, etc. when riding in a car (yes I know this is natural light,but yet when it is flashing off of things it triggers it)
Sudden loud noises of certain tones, usually music
to name a few.

Maybe I'm a nut case LOL
Have a nice day!!!

[Shelley]

I know of someone who wears polarized sunglasses all the time. He says it helps with his condition. The darker the better.
Don't know if it will work for you, but perhaps it's worth a try?
I know epilepsy can be as varied as fingerprints are on each individual, but I have found a couple of things on this forum that have helped me out. I hope my suggestion helps you.

[Bernard]

Check out the Z1 blue lensed glasses.