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Posted 5/4/2005 4:49 AM (GMT 0)
I was just at Starbucks writing and all of a sudden I felt so tired and kind of nauseus, like I wanted to just go home and be in bed. I got so panicked that a seizure was coming on and I would be in public etc. I took some deep breaths and stopped what I was doing until I felt better. Luckily, I was okay.

I have only had 1 seizure about 6 weeks ago, and I have no memory of what happened just prior. I was in the kitchen, put the phone down and was found by my DH in the living room asleep. There didn't appear to be any grand mal activity. It was called a temporal lobe complex-partial seizure/amnesic episode.

Anyway, I am so panicked about being in public and something happening. Does anyone else feel this way, and any suggestions on how to cope would be appreciated.
Posted 5/4/2005 11:34 AM (GMT 0)
Hello I would write you alot more, but I am on my way to school and can't be late ;) .. Caffiene is a major trigger for alot of people with epilepsy. Try to stay away from it. It stimulates the CNS so that is why it would effect you in that way. I hop eyou are feeling better. THere is nothing worse then when you are out in public and start to get auras. Take care, Tracy
Posted 5/4/2005 7:28 PM (GMT 0)
Dont panic this is part of living with epilepsy and as unnerving as this can be you just have to learn to stay calm. If a seizure is about to happen there isnt anything you can do to stop it so one thing I have done is prepare for those situations and one way I have done this is by trying not to find myself alone ex: in the future go to starbucks with a friend.

ONE OF MY STORIES: I feel your pain and I am of the opinion that you have every right to feel extra concerned in public you see I have grand mals and when I come out of a seizure I dont know my name or anything else plus the after effects can last for days on occassion, one time I was taken to the hospital and they were puzzled (as usual) and asking me all these questions that I could not answer (as usual); I was just so confused plus there was no identifacation for the doctors to go by so after I was released from the hospital and taken home we realized that my wallet had been taken and apparently I had been left just laying there on the sidewalk according to a statement that was made by this woman who found me and called the police....whoever she was I sure would like to thank her. Whoever took my wallet also took my medic alert bracelet is that low or what?

Look I know you dont want to give up your independence that was my biggest struggle but being as how I have pretty bad seizures it was either come to terms with this problem or become a hermit and that wasnt happening simply because I enjoy being around people to much; the most important thing for you to remember is that you will not allow this to consume you.

Steve
Posted 5/4/2005 8:36 PM (GMT 0)
I am so sorry this happened. Those feelings can sure be part of some types of seizures. It can also be a panic feeling just knowing you are headed for a seizure.

My son, who had a recent public generalized seizure, had something like what you posted last week. We were in the dentist waiting room and he had an aura. he was SO worried it would generalize right there with a full waiting room. I think his was a panic episode and just a simple partial that did not move on. Temporal lobe seizures can have a fear involvment though...

Hnag in there. I would tell the neuro about this. (not everyone has issues with Caffeine causing seiuzres ) My DD actually uses caffeine some to fight her headaches. It is good to be careful....

Posted 5/4/2005 8:40 PM (GMT 0)

Steve is SO RIGHT about not letting epilepsy ruin the only thing you have any control over... your ability to at least enjoy some freedom to do things and go out.  Of course, you have to avoid doing anything  that could put you in a situation where you could harm yourself or someone else (driving, going up on a ladder, swimming in deep water, etc), but you have to go out sooner or later.   I too have had many times where I had seizures in public. And after feeling really anxious and depressed about it, I just make sure someone is with me, then I  feel better about it now.  I figure, at least if something happens, someone will be there who knows me and to take me home.  It's better than a bunch of strangers trying to help me, or worse- trying to rob me, like Steve!!!!   

Tracy is right about the triggers.  Do you think caffeine has any effect on you?

((((HUGS))))   Glenda :-)

Posted 5/4/2005 11:38 PM (GMT 0)
ShakinMommy
Hi I am not sure or don't remember but are you on any meds for epilepsy? I am and I still get some auras here and there. It takes time to be confident to go out. I would prefer to be with a friend when I go out. There are alot of main triggers for people with Epilepsy, stress, lack of sleep, caffiene, flickering lights/florescent lights ect. It takes some time but you will figure out your triggers. All of the above bother me. They make me feel seizurish. Hope you get some rest and take care, Tracy
Posted 5/5/2005 1:40 AM (GMT 0)
Hi, thanks for your support. It is a big adjustment getting used to all this, first losing my license, now thinking about not going out alone. Wow! Anyway, I am on Lamictal 200 MG QD. Also, I have given up caffeine for the most part and diet coke/aspartame. I was drinking a chai tea latte when it happened (does that have caffeine?). I think I was really tired too, I have been walking so much and then my kids wake me up at night. I need to get naps in to help. It helps to hear your stories and know I am not alone.
Posted 5/11/2005 1:42 AM (GMT 0)
ShakinMommy-

Hey, it's funny you mentioned giving up diet coke/aspartame.  When I was diagnosed about 20 years ago, diet drinks were getting popular due to the great taste of aspartame.   I started drinking diet coke all the time (after all -everyone else I knew was too), and it was shortly after that when my seizures became really bad.  At the time, I thought there was a connection - but my neuro said he didn't know of any.... anyway, I stopped drinking it right away and went back to good ol' sugered soft drinks.  I wasn't going to take a chance!     Glenda :-)

 

Posted 5/12/2005 1:43 AM (GMT 0)
Yes, it is some serious stuff. Since Jan, both my kids stopped napping, therefore so did I - my caffeine and diet coke intake tripled since that time. I think the lack of sleep, caffeine and aspartame were all factors in my seizure. I probably always had a suseptibility but those things just blew me over the edge. So no more D. Coke for me!
Glenda - that is interesting that you knew that 20 years ago. Just makes one think to trust our instincts, and eventually science will catch up.
Posted 5/12/2005 3:21 AM (GMT 0)

ShakinMommy-you are so right about science having to catch up!

Speaking of instincts- when I went to see my neuro and told him about some side effects from my Zonegran, he said, " Funny, those aren't common side effects usually reported for that drug." COME ON. DOES ANYONE REALLY THINK THE DRUG COMPANIES ACCURATELY REPORT THE ADVERSE EFFECTS OF THEIR DRUGS??? OF COURSE NOT. That's why we have to trust our bodies to tell us when something is wrong. If I suspected the aspartame was causing problems with seizures and I wrote to the makers of Nutrasweet, will they do anything about it?... NOT!!!

Posted 5/12/2005 8:20 PM (GMT 0)
Goodwitch, it is also neuros like that who do not take note of what YOU SAY about side effects that perpetuates that. If the docs do not report what you, the EXPERT on Zonegran FOR YOU, tell them!! (sorry my personal pet peeve,)


Shaking, how are you doing these days? Hoping you are doing ok. I am right there with you on loosing diet soda. I have become very allergic to SOY and that is in all diet's I have found.......sigh, grumble whine....

Hang in there!!
Ginny
Posted 5/14/2005 5:11 AM (GMT 0)
Hi Kayak, thanks for asking. I am doing pretty good these days, up to my therapeutic dose of 200 MG Lamictal and seems to be working pretty well. It hasn't been too much of an adjustment fortunately to not drive, but I do miss it. Anyway, it is just getting over this fear of what could happen - I am alone with my kids -3 and 4 this weekend, and I keep thinking what if, what if. But you have to live your life, and now that I am on medication, I am sure that will help a great deal.

Yeah, the diet thing - that is another story! I wish I could take a pill for that! :-)

A surpising outcome is that I am healthier at the moment in terms of drinking more water and walking about 10 miles per week. That is a nice change of pace!
Posted 5/14/2005 2:47 PM (GMT 0)
Glad things are going ok for you! Walking is good, too. Happy birthday to your little ones!
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