Bridget

[BRIROB]

Can anyone tell me if they have experienced anything similar to this and if it sounds like a photosensitive seizure? I am very afraid of this happening again because it was so serious. I believe I have photosensitive seizures. I am awaiting an insurance change to have an EEG because of a seizure. Here is my experience:
I HAVE HAD TWO WHAT I AND MY NEUROLOGIST BELIEVE TO BE PHOTOSENSITIVE SEIZURES. BOTH WERE WHEN I WAS RIDING IN A CAR ON THE PASSENGER SIDE. THE SUN WAS FLASHING BETWEEN THE TREES AND BECAME VERY PROBLEMATIC FOR ME. I DEVELOPED A FORM OF PARANOIA. THE BRIGHT LIGHTS BECAME SILVER SEEMED AS THOUGH IN CARS FOLLOWING ME. I THOUGHT I WAS HALLUCINATING. I BEGAN TO SCREAM WITH FEAR. THOSE WITH ME SAID I IMMEDIATELY WENT INTO A FULL BLOWN CLONIC-TONIC SEIZURE FOLLOWED NOT BREATHING AT ALL. MY SKIN BECAME ASHY AND MY EYES OPEN, FIXED AND DILATED, AND GLAZED OVER AS IF I HAD DIED. ONE PERSON WITH ME WAS A PARAMEDIC OF 20 YEARS AND COULN'T EVEN FIND A PULSE. SHE BEGAN TO DO MOUTH TO MOUTH AND WITHIN ABOUT FIVE MINUTES, I TOOK A DEEP MUCH NEEDED BREATH. I WAS RUSHED TO THE ER AND THEY COULDN'T FIGURE OUT WHAT HAD HAPPENED. CT WAS NORMAL. MY NEUROLOGIST ORDERED AN EEG WHICH I HAVE YET TO HAVE. I ALSO HAVE MULTIPLE SCLEROSIS AND MY DAUGHTER HAS HAD NON SPECIFIC SEVERE CLONIC TONIC EPILEPSY FOR 9 YEARS AND IS ON LAMICTAL. 150MG TWICE / DAY. THEY ARE SOMEWHAT CONTROLLED BUT SHE STILL HAS QUITE A FEW. I DON'T KNOW IF ANY OF THIS IS RELATED. PLEASE HELP!!

[stilldancing_98]

Hello Bridget. My name is Teresa. I do have photo sensetive siezures. Wow. that makes me mad that they won't do the eeg. I'm wondering if they have a social worker that can help you get covered by the state until you get your insurance. You can do this by saying it is an emergency. Your dr. and your friend can help you. I have had this flashing bother me in stores, and paranoia that were siezures.Go in and get help.Get referrals if you have to do what ever you need to do.

[BRIROB]

Hello Bridget. My name is Teresa. I do have photo sensetive siezures. Wow. that makes me mad that they won't do the eeg. I'm wondering if they have a social worker that can help you get covered by the state until you get your insurance. You can do this by saying it is an emergency. Your dr. and your friend can help you. I have had this flashing bother me in stores, and paranoia that were siezures.Go in and get help.Get referrals if you have to do what ever you need to do.

Thanks Theresa for replying. I might not have been clear enough. Because I have a bad case of Multiple Sclerosis I am on disability so I do have Medicare but I'd have to come up with 20% for anyone to do it. When they rushed me to the ER they day it happened, I don't know why they didn't do the EEG then, they only did a Cat Scan which was clear. I let my medicare advantage plan lapse so at the 1st of the year they put me on original medicare which would only cover it as an emergency if it happened again and I was again rushed to the ER. I have to enroll in a new Medicare Advantage Plan in order to have an ordered EEG with just a co-pay. I was trying to figure out if anyone had experienced anything similar. Not all light things bother me but this was the flashing of the sun between the trees.I will have the EEG done as soon as I enroll in a new plan, I'm just having a hard time finding a plan that accepts doctors I've been seeing for years. I'm also afraid the EEG will provoke another seizure similar where I literally died for a few minutes. My daughter gasps and gulps for air during her seizures but I just completely stopped breathing and had no pulse. I have a grandbaby on the way and I wouldn't want to miss out on her life pushing the EEG too far. I don't know that they can necessarily recreate what caused the seizure either.

[stilldancing_98]

My cousin has MS. So I am a little familiar with it. Not much. She is losing her sight.The last time that happenned to me, I really don't think you can compare the two, I had fluid in my brain and they had to bring me back to life then enduce me into a coma. But still under an emergency the state should pay for that.How are you feeling now. Maybe you could schedule a video eeg. Do you know what that is?And that way they could make getting the insurance faster and better for you. You sound like a very smart woman.

[Meetz1064]

a number of members here that have photosensitive seizures, and yours does sound like them. Yours sounds more severe, but it does sound similar to another member's. Hopefully she will be around soon......

I'd like to welcome you to CWE, and wish you the best of luck with the EEG. They are simply a "snapshot in time" of what's going on in your brain when the test is taken. So, if the doc uses just a short 20 EEG with no patterns on it, you may not have any activity going on....but then again, you might. One never knows.

Feel free to hang out, and find out everything you need to know. Make friends, have coffee--not mine, I keep burning it--and chime in whenever you want. We'll be here for you, no matter what.

Take care,

Meetz

[Molly97]

Hi Bridget,
I too am much affected by sunlight through trees. It was particularly bad on a trip to the Seattle area several years ago. We were picked up by family at Seatak and then driven about an hour out into a remote area where they lived. Very pretty scenic drive and about 5pm. I had a seizure.

I thought maybe that closing my eyes would help. It doesn't. The patterns of light come through my eyelids. It's not like strobing lights, although I'm sensitive to that too. I've come to the conclusion that it's literally the moving patterns of light and dark that do it to me. Hard to explain. It's not so much the intensity of the light itself. I can create the same effect if I spread my fingers on one hand wide open and then rapidly move my hand back and forth. I remember a young man in my neighborhood where I grew up who would sit for long periods of time in a chair in his front yard doing that very same thing with his hand. Visually self-stimulating somehow. But for me, it provokes a seizure everytime. I don't know what it did to him; I wasn't allowed to talk to him.