Veeg
Thanks for all the warm welcomes! I hope everyone had a nice Thanksgiving.
Sorry in advance for this post being so long, I just need your help/advice/anything!!
Had an abnormal EEG Left frontal lobe, when I was first diagnosed in 1999. MRI's normal. Had a closed head injury months earlier and my doctor at that time said that was probably the cause. He prescribed meds and sent me on my way. I had a few break throughs usually due to flu etc. Ended up switching doctors after about a year due to distance.
Loved new doctor. But within the last two years my seizures started changing, facial numbness, right eye drooping, thumbs curling back, severe headaches, more grandmals. He did another EEG and MRI, both normal and upped Lamictal. Upped it so much that I was seeing double, couldn't walk hardly, running into walls, I called his office several times (scared of course) and no one ever called me back. A few months later I had a grand mal at work and a trip to the ER, called his office explained what was going on and was told I would have to wait 3 months for an appt. Had another one the following week, called again, only to be told, sorry he's booked, we can't get you in any sooner than 3 months. Ok, time to find a new doctor.
New doctor saw me right away, August 2008, seems very concerned, ordered EEG, MRI, all normal. Full blood work up, all good. Had EKG at ER. Took me off Lamictal, put me on Keppra and Topamax (for migraines). Keppra is not for me, caused anger and moodiness. On to Carbatrol, when I got up to 900mg and was still having seizures she just switched me to Depakote ER 2000mg (only at 500mg right now, just started it Friday) I have had serious memory problems in the last 6 months so she sent me for cognitive testing a few weeks ago, I get those results next week. I don't have a good feeling about the results. My question is, could it be the meds or is it from seizures? Neuro. says prob. meds. causing memory issues, Neuro-psychologist who did cog. tests says meds wouldn't cause that?
The seizures I am having now are; All of a sudden I will get a headache, confused, hard time understanding others, right eye droops, nausea, often I will try to speak but can't, it doesn't last long though. Or my mind will know what it wants to say but when I open my mouth it comes out all wrong. I get a creeping numbness feeling on the right side of my face and in my right arm. Headache, followed by an overall odd feeling and then nausea and then I get light headed and a loud buzzing sound and I black out. In my sleep I am breaking teeth, husbands says I am stiffening up, smacking my lips, scratching same area none my neck and once I woke up with my legs up like I was walking or riding. I fell out of the bed last week, I have never done that. The blankets are all twisted and half off the bed most mornings and I am sore. Husband works 24hr shifts so he's not there every night. Heck even my dog of 13 years has quit sleeping in the bed with me! lol
Well here's the kicker, Dr said now she's not sure they are seizures and if they aren't she's not sure what they are! I am so frustrated. I have the abnormal EEG and from all the reading I have done they seem like seizures.
She has ordered a VEEG sleep monitoring at Medical College of Va, waiting for them to call to set up the appt.
Any suggestions??
Again, sorry so long...
Karen