What Should I Do?

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FourDarlings

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I have been tested for epilepsy, but not diagnosed with it. This may or not be the proper forum, but recently I received an i-phone as a present. Sometimes, if the wrong icon or button is pushed, flashing black X's inside white circles appear next to the icons. The flashing X's also move around a little.

The first time I saw this, I literally freaked out. I can't stand to look at the moving flashing X's. It makes me start itching all over, I feel nauseous and extremely uncomfortable. There is a button you can push on the phone to reset it, but I have to hand the phone to my husband so he can do it.

My kids and husband can look at the screen when it is that way with no problem. I cannot. They think I am crazy, but even as I type this, just thinking about the way it looks makes me itchy and feel sick. The first time it happened, I couldn't sleep at night and I kept thinking about it in horror for days.

What is wrong with me? Should I tell me doctor? Should I get rid of my i-phone? Is this possibly related to epilepsy at all or should I post on a different forum?
 
Yes,

you should tell your doctor. Ask to be referred to a neurologist, and have an EEG done. Even if you don't have epilepsy, something isn't right, and a neurologist would be the better of the 2 doctors to help you sort things out. The problem you're talking about sounds sort of like photosensitivity, though...

Also, go to an eye doctor, and have him rule any possible problems out. Just to be safe. Explain to him what happened, and your concerns. And go from there.

Here's the thing. YOU pay the DOCTORS. THEY work for YOU. If THEY laugh AT YOU, GO SOMEWHERE ELSE. You deserve to have an answer AND YOUR SELF RESPECT.

Feel free to stick around here, and learn all you want, even if you don't have E. We can ALWAYS use E advocates! :bigsmile:

Here's a couple of good links to check out:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/diagnosing-epilepsy-webmd-2567/

There are quite a few others to be had, just look around......this is a really neat site... Mr B (Bernard) has made CWE a really neat place to be, and an AWESOME home for us. Stick around, we'll be here to answer any questions you may have. I promise.

Meetz
:rock:
 
I cannot tolerate flashing lights, strobe lights (the worst)...I would tell your doctor right away and I wouldn't use that phone again!
 
It sounds like a photosensitive trigger to me. Best to get it checked/tested.
 
Thanks for all the replies.

I've had EEG's before and nothing showed up. I also had an MRI and a neuropsychological test.

Would this be a different test?
 
Yes, but

were the EEGs longer than an hour or so? In reality, it's better if you're hooked up for AT LEAST 24 TO 48 HOURS. Why? Well.......trying to capture epileptiform (seizure) activity in such a small span of time as 20 minutes to an hour is difficult at best.

BUT, when given a longer span of time, and including the sleeping span, it is more likely to be caught.

MRIs are different because they show any PHYSICAL abnormalities that may be causing the problems.....maybe some veins that are abnormal, and growing and causing seizure activity, one side of the brain's bigger than the other, etc etc.....

Neuropsychological is something entirely different. I've never had one of those.

I'll be having a 72 hour EEG later this month, and an MRI 3 days before, as well as an EMG (this checks for nerve damage of which I have plenty) 2 days before the EEG. And another a week after that. One for the upper half of the body, one for the lower half of the body. BLECH. Then I'm done for a while. They're not painful (OK, the EMG can be), but they're annoying. But they do yield the information that my neuro desperately needs to help keep my seizures at bay. So, I put up with it........
 
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You should try looking at the flashing x when you having the EEG done so they can check if you are experiencing seizure activity when you are experiencing the disorientation. :twocents:
 
Hi,

I did have an in hospital EEG. It was 72 hours, but I wasn't given anything during that time to stimulate a seizure. I will go ahead and call my doctor.

Thank you all for the advice.
 
Hi FourDarlings! Welcome to CWE. :) Definitely tell your doc about the new phone and your reaction to the flashing symbol. It could be a sign that you are what we call photosensitive. That means that flashing lights or certain light patterns might trigger a seizure for you. While you wait to see your doc, start keeping a journal. Write down everything you eat and drink, as well as how much sleep you get each night, any stress you're under, and any odd feelings like that itching feeling and when they happen. If you're a coffee addict, like I used to be, you might want to start cutting back on the caffeine. :) It's hard I know....but I'd rather cut back on coffee than have a seizure. :) Also, in your journal, write down any questions you might have for the doc. Take the journal with you. Also, if possible, take your spouse with you. That way, he can ask any questions he might have. :) Show your doc your journal. See if there is a pattern. Many of us have seizures when we don't get enough sleep or if we're under too much stress. Some people have seizures in response to flashing lights or patterns or even after eating certain foods. By keeping this journal, you'll be giving yourself as well as your doctor more information.

Also, check out the threads Meetz posted in her reply. :) The epilepsy 101 thread has some great info. Also, check out the library here at this site. It's not horribly uncommon to be diagnosed with E in your 30's or 40's. Many times people will be diagnosed and then realize that they've had epilepsy when they were younger...they just didn't realize the "spells" they were having were seizures. Some can look like "staring off into space"....others are far more violent.

Whatever happens, good luck with your doctor. :) Feel free to ask any questions, chime in , or just vent if you feel like it. Remember, you're not alone.
 
I know when they did my EEG, the tech said one part was to check for photosensitivity. My EEG did show seizure activity, but nothing under the photosensitivity part. But within several weeks, I started having the problem with lights, strobe, etc. If it has been awhile since they did they test, maybe they should retest you now.
 
Olympic Games Opening Ceremonies

Did anyone have a problem watching the opening ceremonies at the Olympics? I had to look away several times, as the lights and shapes started to give me the same creepy, crawly, itchy feeling as my i-phone.
 
I didn't bother to watch...I can't handle the pyrotechnics and strobe lights used at the music awards shows or on music videos, so I don't bother to even try watching the big stuff like the olympics....which I actually miss. I used to love watching the opening ceremonies. :(
 
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