one question before I post

[darkmarkshark]

I've been on the EF forum since I was diagnosed 3 years ago, but I finally encountered my last straw there.

My seizures are caused by certain smells. But every time i've posted that on the other site I've been immediately told that I can't be having epilepsy, don't belong on there, must not know what a seizure is, am misunderstanding my doctor, etc. If I offer up a link that helps supports some seizures are caused by smells, I quickly find a message in my inbox letting me know that I've received an official warning for starting a fight and insulting others.

I also have seizures due to stress and flashing lights. And just today saw a thread where someone was warned because they had a problem with being told that photosensitive epileptics don't matter because they make up less than .00001% of people with epilepsy. (a fight had ensued but the person making the mean remarks wasn't warned, only the one who was standing up against them)

Well i'm not here to rant about that site, so I won't bring up the million other similar examples. All I want to know is will be called a loser, idiot, dummy etc for talking about having these kind of seizures here? and then be told I'll be banned for trying to start a fight if I do anything other than smile sweetly and say 'thank you, you are exactly right' in response?

I don't want to get involved in another place where I am treated like dirt just because my seizures don't fit into the most common molds.

[Meetz1064]

that won't happen here.

And, as you may have noticed, you've already posted!!

As a matter of fact, you'll find that we talk about a LOT of those kinds of things here.

If memory serves me, and someone can correct me if I'm wrong, (entirely possible, I AM TIRED) what you're talking about is actually a form of reflex epilepsy. Check out the link I pasted in here, it will take you to a bunch of different posts about it. I actually know a guy who has them because he EATS.

http://www.coping-with-epilepsy.com/...+seizures.html


I don't know what's going on over at the EF forum; it's been a while since I've been over there. I s'pose I ought to meander over there again. I have NO IDEA why they'd say such things. Photosensitive E people are just as important as any other E people. That's weird.

What type of seizures do you have? Tonic clonic? Simple partial? Complex partial?

I'm sure you're going to like it here. We like to treat this as a house party with a bunch of house guests. It's fun, with a bunch of nooks and crannies, and Mr B (Bernard), our host, has made us AN AWESOME home here. Personally, I love it here.

Buckeye should be around in a while with some coffee, so stick around, kick your feet up, and start reading.......enjoy some conversation, or rant and rave if you need to. We have rooms for all of those things.

Take care,

Meetz

[darkmarkshark]

thanks, I'll look around.

Now i'm in a bit of trouble because I had a seizure this morning at about the time I take my meds. And I just realize that I can't remember if I did or didn't take them. I'm wondering if it might be best to just take half of what I am supposed to. That way I'm not taking double or missing all that I should need

[Meetz1064]

And ask them what they want you to do.........that's the best thing to do, really.

I will be back on later if you want to talk more. I'm on my way to work now.

[Georgiagirl88]

Hi there!

Welcome to the group. Sorry you had a bad experience with the other group.
I think everyone here is pretty wonderful. And fair. There is the padded room to vent which is a great place to unload and also get alot of encouragement! (there are some rules and off limit things that should be obvious to everyone..such as being rude to others etc.) Other than that..unload!
Everyone seems to have their own set of symptoms with their epilepsy and it is so helpful to be able to talk to others with similar experiences. I am not sure what happened with your other site, but hopefully you will find this site as wonderful as I do. It has been a tremendous help to me!! Bernard has made a wonderful place for everyone to come together and help each other.
Welcome, once again!!

Michelle

[darkmarkshark]

to answer your question I have just about every type of seizure (or rather it sometimes feels like I do)

I have motor, psychic, sensory, and autnomic simple partial's. Sensory and psychic seem to be the most common.

I have had secondary generalized seizures, but thankfully none since beginning my medicine

I also have complex partial seizures and absence seizures

[Georgiagirl88]

Well, it sounds like you will be able to talk to alot of folks here. P.S. my sister lived in Denver for several yrs. We had a great time visiting!! : )

[Bernard]

Hi Mark, welcome to the forum.

As Meetz mentioned, seizures triggered by smells are a form or reflex seizure (I fixed her link). Reflex seizures can be triggered by any of the five senses - sight (photosensitivity), smell, taste (that rare eating trigger mentioned earlier), touch (startle and quick temp changes) and hearing (loud/sharp noises - possibly produced by Speber's band ).

I visit the EF forums now and then, but didn't see any of what you described above. In any event, we have a pretty open and friendly place here (with a touch of humor). As long as everyone maintains the same decorum they would exhibit at a dinner party, there are no problems here.

[RobinN]

Hi Mark - Welcome
I do hope you will enjoy it here. I have found it to be one of the best places to discuss alternative therapies, medical issues, and life's road blocks.

Nothing is unusual with this disorder, at least from my perspective.

[Cint]

Mark & welcome,
I live in the Denver area. Who is your neurologist? I go to the Univ. of CO neuroscience. I feel more comfortable there.

I hope you will fell much more comfortable on this forum. I know I am and have learned much more here, also!

Cindy

[Nancy]

Hi Mark - I love this board!! And I have HORRIBLE problems with memory and "word stumbling" (see, right now I can't even remember the correct ones ~blush~blush~)

But - I do GREAT with taking all my meds. I have one of those little boxes that hold a weeks supply of meds showing when and what should be taken each day for 7 days. I fill it every Sunday night after I've taken the last one on Sunday night. Whew. I'm a miserable mistake maker but I do absolutely perfect (well -almost) taking my meds.

Welcome aboard here

[BuckeyeFan]

Have a seat and join us for awhile. I can not say that we have never had a few disputes here among members. However, they are very limited and usually settled easily.

Just as Bernard said, think of this as a dinner party and treat others the way you like to be treated. I am sure you will get along fine here.

Another hint is to use the different rooms for posting different things. The padded room (created for me) is the place to vent and let out your anger. It is designed for that and as long as the language doesn't get out of hand, everyone lets you scream as much as you wish. The lounge is more for having fun and relaxing. The kitchen is for epilepsy discussions.

Though smell may be a fairly rare trigger, it can still be a trigger. Almost anything that sends a signal to the brain can be a trigger. That is probably the best way to understand triggers.

I hope you enjoy our little home here. It has been a great benefit for me. I look forward to hearing more from you in the future.

I'll go get the coffee now.

[minnbikergirl]

Welcome to the site Mark !!! In my opinion, this site is the best !!! I felt all alone until I happened upon this. I am computer illiterate, so I will post things where they they may not suppose to be, and no one has ever said anything. The information and support I have had in just the past year has been so helpful... Thank-you all !!! We are not here to judge you. I need to vent sometimes, and this is the place to do it.. I have told my doctor about this site. I told him it would educate him from the epileptics point, not the doctor. He said it was very informative, and alot of what is said here you cant get from a textbook.
Good Luck !!!

[skillefer]

Hi darkmarkshark! Welcome to CWE. As you can tell, we're a pretty friendly bunch. Some of us are indeed photosensitive. So you're not the only one. And some of us have odd triggers. Our goal here is to be supportive. So feel free to ask questions, rant, or just chime in whenever you feel the need.

[speber]

Lots of friendly folk and good info round here....hope it helps you out!

Peace,
Speber

[tinasmom]

Welcome Mark -

Sorry you had a bad experience at the other forum. I have gone there occasionally, but this is the one that I prefer. I think this is a great forum with wonderful people. I tell everyone about this forum.

[haird18]

Mark,

Welcome to a big family here we don't insult or discriminate. And many of us have experienced many types of seizures and surgey and yes we have dealt with these issues everyday. But here BernarD our host has provide us a safe haven to express or feelings and enjoy each other. Like me I have three types of seizures since I was 4yrs. old and severe abnomal brain problems so I understand so hang in there.
David

[dfwtexas]

When they did my EEG, the tech told me that the photosensitive trigger was extremely rare...so imagine my surprise when flashing lights triggered a seizure. I am starting to think the only certainties with E, is there is no certainties!
Even though it was not discussed with me, I steer clear of strobe lights, flashing lights, etc

[Molly97]

Welcome Mark.
I too have reflex seizures. I have a problem with the flashing lights, although I was told by one neurologist that there wasn't anything special about having a seizure occur during an EEG because of flashing lights because "everybody does THAT!"
I've had auditory auras and smell and taste auras that go on into seizures.
Everyone is different. Here, we all respect each other's differences. We all play well with others.
Again, welcome to the House.

[Taylors_Mama]

That is no good. sorry you have gotten that response from people. Not exactly the kind of support you need. I havent been here long but so far everyone has been amazingly nice and wonderful.
I have never heard of smells being a seizure trigger for anyone but I was told by my daughters neurologist everone has a seizure trigger and it may be something off the wall that you will never encounter. And that even the most normal things can cause seizures so to watch out and keep note of everything that is going on around my daughter when she has a seizure so that we can possibly figure out her triggers.
Either way welcome! Looking forward to reading your posts.