aides to avoid seizures when sensing an aura

[wayne]

hello, my name is wayne and this is my 1st time on the site. my first grand mal happened in 1982. during the ensuing nuerological testing; i was put under the strobelight and when it hit a certain frequency,my body just jolted on the table. this indicated to me that i was optically induced. subsequently i noticed that sunlight flickering through trees gave me a very odd sensation. i averted seizure by moving the visor and holding my hand up to shade my eyes. later, while in the grocery store i got a very strong aura. trying to read labels and compare prices under flourescent lighting is not a recommended activity for us...lol. i managed to get over to a cooler that i could lean on and close my eyes and cover them with my hands. after a while the aura abated and i eased my way out of the store.around this time (1983) i found some amber colored sunglasses and they really helped avert auras, even in the dreaded supermarkets. just today i spotted an article that substantiated my theory that the glasses were working. this study was dated in 1992. 9 years after i had deduced this. i tried to share this info with the epileptic assn but they seemed disinterested! later i reallized that with electronics when there is a problem the current flow meets resistance, which causes more resistance and more heat and eventually there is a short in the system. appologies for being a bit lengthy but to fully grasp where this theory is coming from i feel that it is necessary to convey the full line of thought process behind my simple discovery! through reverse deduction, it seemed sensible to me that if one was able to some how reduce the heat one might be able to reduce the resistance and ward off the seizure. the next time i had an aura, i took a tea towel and put ice cubes in it and placed the wrapped ice against the arteries on both sides of my neck,therefore cooling the blood flowing to my brain. this may not work for others but it certainly does for me! subsequently i came across a neat little product that is very helpful for me called a cool tie ( i do not have anything to do with selling this product so i hope that i am not breaking any rules of this site by recommending it based on my personal experience ). this item is a flat cloth piece about 1 inch wide but when it is immersed in water it swells up to the size of a rope and retains the water! then you tie it around your neck snug but not to tight and as the water evaporates from the tie it draws heat out of your neck which cools the blood flow to the brain. i wish we had these when i used to do hard work outside in the hot sun. back in the 1950's we were travelling in a black car on a very hot sunny day and my grandfather had a canvas bag containing water draped over his side view mirror on the out side of the car. i was very surprised when he pulled it inside and the water was actually "cold". i never really understood how that worked until i tried these necktie ribbons. i hope that some of these observations can make life a little bit better, more comfortable and safer for others. thanks for considerring this lengthy missive. this is the first time that i became aware that we had a forum to share our observations and i am not convinced that epilepsie assns or doctors are willing to share this kind of knowledge! thank you and god bless you all p/s howcome there is no penguin icon.lol

 

[Sandie]

Hi Wayne and welcome,
We are always interested in different people's thoughts on epilepsy and how to control it. The sad reality is that although there are medications out there we spend a lot of time playing musical chairs before we get the one that is right for us as we are indeed individuals. As soon as we find the right one it decides not to work and we are back to square one. I am sure that there will be more than one person on this forum finding your observations interesting. Don't know why there isn't a penguin icon. It would have suited me too. I have arthritis in my hip so I 'Do the Penguin' every morning when I get out of bed (Ha). Maybe I should start a new dance. Enjoy your time here.

 

[wayne]

hy sandie, thank you for considerring my comments and your fast response. for 30 years i have wanted to be able to share this knowledge, so you can just imagine how exited i was when i came accross this site. im am a computor dodo so i was not even sure how to get my comments to register on your site lol

 

[wayne]

with humor intended and no predjudice implied, i have often wonderred if there is any connection as to why the penguin is our mascot because they waddle along and then flop ! lol

 

[marty]

Gday wayne ,

Thanks for the info , a bit of info that my dad`s mate had told him was that an old bloke would sit outside his shop and every now and then he would have grand mal siezures and they would cup their hand at the back of his head just on his neck and with their other hand give the cupped hand a hit and aparantly the blokes siezures always stopped , might be worth a try i have never tried it as i am always the bugger having the siezure ( bugger !!!! )
have a great day .

 

[wayne]

hy marty, try the cool-tie it might just bugger the seizure lol. you can wear them just to stay cool on hot days. i find that on hot days i am more prone to the auras. thanks wayne

 

[Nakamova]

Hi wayne --

I have one of those cool-tie things. It basically looks like a regular handkerchief. I don't use it to prevent seizure escalation (I don't get any warning before my grand mal seizures), but I've found it's helpful for keeping cool if I'm traveling in a hot sunny climate.

Are you still having auras at this point? They are actually a kind of seizure (called simple partial), so if you are having a lot of them, or if they are getting worse, then it's good to check in with a doc.

For some folks who have photosensitive epilepsy, filtered sunglasses may help. See http://irlen.com/index.php to get a sense of what they look like.

 

[Cint]

.

Are you still having auras at this point? They are actually a kind of seizure (called simple partial), so if you are having a lot of them, or if they are getting worse, then it's good to check in with a doc.

For some folks who have photosensitive epilepsy, filtered sunglasses may help. See http://irlen.com/index.php to get a sense of what they look like.

It's always good to check with a dr. if the SP's continue. I've had SP's that are sensitive to this environment, so use of the sunglasses is helpful.

 

[wayne]

thanks nakamova, my auras are pretty rare. i have been on dilantin a long time.but still we have to be on guard. lol i have been using the amber colored sunglasses for a long time as well but i just came accross an article that claims that the blue shade is better. so i intend to try them as well.

 

[wayne]

hy everybody, there are studies and results on the internet made on behalf of the epilepsie foundation which you can access at epilepsie dot com. whenever i have contacted my local epilepsie foundation they have zero knowledge or answers! we are better off researching their own funded research than relying upon them to have any answers at all. but bless them for at least having funded the research. god bless you all, wayne