Quote:
Originally Posted by Porkette
Hi Oriana,
Be sure to tell your neuro that certain colors and sounds have bothered you and made you feel odd and then if you can discribe to the neuro how it makes you feel. Tell your neuro if after you've had a sz. if you are confused when the sz. is over with for a few seconds, your not sure where you are, if you are tired and if you have a headache.
If I may ask when you have a sz. do you fall to the floor or do you just not remember things like someone who has amnesia? If you have fallen to the floor you may be having tonic clonic (grand mal) sz. If you have a sz. where you just don't remember things for a few seconds you could be having absence (petit mal) or complex partial sz. If you find that when you've come out of a sz. and find yourself in another room you may have had a complex partial sz. Ask those that have seen you have a sz. if they have ever noticed you smacking your lips, wandering around, or picking at your clothing these are all signs of a complex partial sz. If they have just seen you staring like someone daydreaming then you could be having an absence sz. and they last about 30 seconds at the most.
You should ask your neuro to do a special veeg (video e.e.g.) so they can get your sz. on camera and the e.e.g. machine can pick them up also by doing this they will be able to tell what type of sz. you are having and give you the right AED's to stop or reduce your sz. I would also ask the neuro to do a specialized e.e.g. on you where they will flash different color strobe lights one at a time and by doing this than will be able to tell what colors trigger sz. I had this problem just like you and it's called "Photosensitive" where certain colors trigger sz. after I had brain surgery colors no longer bothered me. In regards to having a DNA test done the Neuro may tell you "what are you talking about or we don't do this." DNA testing has been going on for 2 yrs. now if not longer the Drs. just don't want to do the test because they are making money from the phamacutical co. for the more drugs and higher dosages the perscribe. I've found the fewer AED's I take the better off I am. I wish you the best of luck and keep us posted how you make out. Wishing you well and May God Bless You!
Sue
|
Thank you Sue. *smile* I'm making notes.
The last EEG I had, the technician was going to use a strobe light. She had it set up, explained what the test would be like, but then didn't use it. I asked her why. She just said she didn't need it.
Most but not all of my seizures are at night, while I'm in bed. I also have them during the day. Both night and day I lose consciousness entirely. Yes, I have fallen on the floor and woken up there. Usually I'm alone, but family members have seen the episodes a couple of times. My brother described one he saw partially - he heard me making weird noises, came into my room, and found me staring with eyes wide open, shaking, and making noises. He was unable to bring me around for a few minutes.
Afterward I gasp for air, feel exhausted, headachy, disoriented, and have recently begun to have numbness in the pinky and ring finger area of my left hand. The after-effects seem to be lasting longer and longer. =( At first, the seizures would come and go and more or less right away I'd feel fine. Now it's taking longer for me to recover, a day or more sometimes.
I'm having memory issues too, especially short term.
I felt better before I started taking the AED's, to be frank. They also aren't stopping the seizures. I'm taking both Dilantin and a new med. called Vimpat.