How Do You?

[crazybarbie]

get over the constant fear of having a seizure? It's ALWAYS in the back of my mind. I'm always nervous. I've had frequent seizures over the past few weeks and they all have been out in public. So far so good this week.

But I have a pretty big event coming up in a few weeks. My bf is coming up for a week and we're heading to Toronto for a Bon Jovi concert. We have been planning it for so long and I have this NAGGING fear that something is going to happen at the concert in front of all these people. I am trying to logically tell myself that it will not. I will be sure to take my meds on time. I will try to get as much rest as possible etc. etc. But it's nagging me in the back of my mind.

How do we get past that fear?

[Nakamova]

For me, the more seizures I've had, the less I've feared them. I feel that I've got a handle on what can happen, I know what to expect, and the consequences don't bug me. That doesn't make an actual seizure any less unpleasant or frustrating, but any anxiety about the possibility of having one is very tiny right now. I'm not advocating that you have a lot of seizures in order to get used to the process but I do think there's something to be said for recognizing the fear, acknowledging and accepting it, and then letting go. It's not a matter of logic of course -- I know it's hard reason away the fear -- but being open about it, joking about it, rewarding yourself for dealing it with it -- these are all ways of neutralizing it. It's also great to vent here about your fears. Put your anxieties here -- we'll keep them safe for you until you want them back...

[Meetz1064]

something similar to Nakamova. Practice, of course. URG. Not my favorite thing. Also, mind over matter, if that's what you really want to call it. I find ways to work through my anxiety by occupying my mind with other things that are more challenging, and that make my brain work differently.

Things like Sudoku puzzles, crosswords, reading up on something that I really don't understand so I HAVE to learn it, drawing (OK, ATTEMPTING to do so), anagrams, trivia games/puzzles......you get the idea. If I can find something that I think will make my brain rewire itself in a different manner, and distract me from thinking about the possibility of a seizure in a certain atmosphere, then I DO it.

And YES, I still have those concerns, even though my seizures are nocturnal, are fairly well-controlled. Some forms of my E are less perceptible, but are as much of a pain in the neck as the more violent t/c's that I have, which are also nocturnal.

So find something that you can wrap your mind around, I guess would be the way to put it, and keep that nagging fear from entering your mind. All will be well........with a bit of luck. And start making sure that you're taking your meds and sleeping well NOW. That will help immensely as well.

Take care.

Meetz

[PhylisFeinerJohnson]

Lots of people with epilepsy look forward to their next seizure with dread and fear. When will it strike? What will I do? How will I lose control this time? So, it’s natural to tense up, hyperventilate, or feel your heart beat race.

Once the fear takes over, it‘s even easier to lose control and panic. Yet, there are strategies that can help reduce those anxieties and actually increase your sense of control.

If you have auras, acknowledge them as a warning sign. Try to use them as a clue and a call for positive action.

You might hear sounds that don’t exist. You might smell nasty odors or experience weird visions…

Reports indicate that some people have learned to interrupt their seizure process by replacing the aura-induced perception with another. For example, if the aura is a smell or odor, these people can often interrupt the seizure by immediately smelling something else (in general, something with a better smell than the aura).

Some people are able to take this interruption technique a step further. By simply relying on mental imagery (like remembering a pleasant, positive smell), they can arrest a seizure.

Take an absence aura which causes a tingling sensation in your hand. By applying firm pressure and rubbing your hand, you can help ease this and sometimes prevent the absence seizure altogether.

The first thing is to get to know your seizure type and recognize the signs or behaviors related to your seizure(s). Keep a diary to track the events that lead up to the seizure. Once you know your triggers, you can make the move to take control of your fear…distract yourself…or change your emotional state.

Focus on a pleasant experience and transport your mind there. Although you may not prevent the seizure, it can be much easier to deal with just by easing the tension. Plus, you can possibly make your seizures shorter in duration and frequency.

Experiment a little. You just might find something that works for you.

And don't forget muscle relaxation, deep breathing, yoga, light exercise…the kind of activities that bring positive thoughts to mind.

You can do it!

Resources:

http://www.epilepsy.com/pdfs/journal/EJIS-Issue1-6.pdf

http://www.lef.org/protocols/neurolo...pilepsy_02.htm

[Crystal11]

My Twin sis, my roommate/best friend and I all have Epilepsy. My Twin and I have complex partial seizures and my friend has generalized seizures and absence and atonic. We worry more about her than we worry about ourselves. We all worry that a seizure will happen in public, but people are just going to have to understand that things happen sometimes.
We try not to think about Epilepsy but it just isn't going to happen when they can happen out of no where. With my seizures and migraines, I get an aura and that tells me I have a little bit of time to get myself to a safe place or to let my friend or Twin know that "I'm not feeling good." as I say.
I worry about Rach/roommate because she takes the bus to work every other day. She might have three or four atonics a month, sometimes more- and she hurts her knees and had to buy more work pants because of the holes in them. I worry that someone won't know what to do if she has a seizure. I have had to deal with her GMs personally since I've been there to help her. When you wake up to your friend having a seizure on the kitchen floor with a pile of blood around her, it scares the hell out of you. She knocked her tooth up inside her gum and required a root canal. Anyway- I worry about her a lot. My Twin has shorter complex partial seizures and she always knows that they have happened and we just make sure she doesn't do anything dangerous or hurt herself. We all watch out for eachother the best we can. Everyone watches everyone.
That reminds me- we have something called "Seizure watch" and if we have had a bad day seizure wise, then we watch whoever has had problems in the day. If I had a complex partial in the morning, my Twin and roommate will watch over me and make sure that things are okay and that nothing else is causing problems and what not. Otherwise its a trip to the E.R. and oh what fun that can be! (No fun at all for four hours of being watched..)

So even though a seizure can happen anywhere, having a friend with you that knows you and your seizure patterns will make it less stressful. People are just going to have to deal with it no matter what. If you have a seizure, then your friend or family member helps you.. too many people are fearful because they just don't know. Most people don't unless they have a friend or family member or school mate that has Epilepsy- some know little and only what they've seen on TV. Which drives me crazy because I am blind- and deaf without my hearing aids. And its so so so sooooo annoying when people portraigh a blind person being all helpless and unable to be left unattended and can't live on their own..
OMG I just want to scream at them..

Wow, off the point here- sorry- but anyway, just realize that its a problem or condition that you have to live with and having someone there with you makes it easier.
Sometimes I just wish I didn't have to deal with E personally, or see my Twin or friend have a seizure. But we have no choice and only thing we can do is take care of ourselves and eachother- go to neurologist appointments, take meds, eat right and get out and enjoy life. No point in staying in or limiting ourselves too much.

Enjoy life, don't let Epilepsy stop you.
And Take care and be safe
Enjoy the concert.
(I am a composer/musician of 20 years and love music.)
msmotif6 (youtube channel name) if you care to have a listen sometime.
Crystal and her guide dog Umi.

[crazybarbie]

Nakamova, Meetz, Phylis, and Crystal. THANK YOU for thaking the time to post! Wow! Some wonderful advice. Thank you for the support.

I do get aura's, I often smell mold just before it hits and I'm going to try the suggestion to interupt it with another more pleasant smell.

Gosh, I can't thank you enough for your help, understanding and help.

[PhylisFeinerJohnson]

As Crystal says: Don't let epilepsy define you...you are in charge of your life!

Have FUN!!!

[huskymom]

Life is too short to spend time fearing what could happen! Go to the concert, enjoy yourself! I suggest you get a shirt made that says, " I may be dancing, I may be having a seizure....either way, leave me alone!"

[Ann T.]

CrazyBarbie:

Hi. Yes, echoing Phylis's advice never, ever let epilepsy define who you are because you are in charge of your own life. And don't worry so much, because I want you to have tons of fun at the concert, especially with the cutie (or handsome??) Jon Bon Jovi. Rock on, CrazyBarbie & tell us about the seizure-free concert!
*PS: about 90% of the time, my seizures happen in public, especially at the mall & grocery store in the bathroom tissue/'feminine protection' aisle....I'll be squeezin' the Charmin & making Mr. Whipple (for those of us who remember him) m-a-d...

[Chris515]

get over the constant fear of having a seizure? It's ALWAYS in the back of my mind. I'm always nervous. I've had frequent seizures over the past few weeks and they all have been out in public. So far so good this week.

But I have a pretty big event coming up in a few weeks. My bf is coming up for a week and we're heading to Toronto for a Bon Jovi concert. We have been planning it for so long and I have this NAGGING fear that something is going to happen at the concert in front of all these people. I am trying to logically tell myself that it will not. I will be sure to take my meds on time. I will try to get as much rest as possible etc. etc. But it's nagging me in the back of my mind.

How do we get past that fear?

I had a pretty similar situation a while ago. I'm a huge Oasis fan and I made plans to see them at the Virgin Music Festival at the Toronto Island Park.

I was scared as well, worried about having a seizure while stuck in the massive throng of people enjoying the outdoor concert. There were like 20,000 people crammed together as tight as possible..

I just put the potential of a seizure out of my mind and enjoyed the amazing concert. I was having so much fun and I think my brain cooperated with me for the evening.

We need to have fun and not let epilepsy define us. You only live once so enjoy life.. and the concert!

[crazybarbie]

Oh My Gosh Huskymom you Cracked me up! I actually laughed out loud and I'm sure my family wondered what I was reading online! LOL Thx for that!

AnnT, thank you for being so kind. Your positive attitude is so amazing. I'm really trying to reach that place.

Chris Hey I like Oasis too! You're completely right. I've been looking forward to this concert for soooooooo long. I am such a HUGE fan and I've been waiting so impatiently. Not only for the concert but that my best friend is coming up for Michigan specifically for it. I just don't want ANYTHING to ruin it.

It doesn't help that I got a phone call from my Dr.'s office today. Apparently with my last ER dept visit they did a levels test and found out that I was extremely low. We waited a couple weeks and redid the test and apparently it's Even Lower!! Ugh. So it looks like I'll have a visit to the Neurologist shortly. Looks like we'll have to change the meds or add to them.

BUT but, I can't let this ruin it for me. This is just too important to me. I've been waiting months and months. I'm going to try my best not to let this condition take this away from me.