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Would like some thoughts!

Wed, 04/04/2007 - 18:54
Hey ya'll! I had an outpatient EEG done today. (about 50 min. long) It had been twenty years since my last EEG, and my new neurologist thought it might be a wise idea to have a EEG done. This all stems from a 30 min. seizure I had on March 2nd which landed me in the er. Any seizure I ever had were partial complex, but that one generalized into a tonic cronic. My blood levels that day turned up normal, not too low and not too high. I'd taken 400 mg's of Dilantin and 800mg's of Tegretol twice daily. But since that seizure, I have been having "strong" aura's daily, up to 15 a day (mostly at work or immediatly resting after being active.). My Tegretol has been up'ed 200 mg's a day without luck, and the same goes for the dilantin. Its like I was going along just fine for twenty years, them BAM, I blew a gasket! The lady today who performed my EEG only said I did good and that I have a "very active brain", but said she saw nothing out of the ordnary. Lets say the neuro says the same, where would I go from here? I've already had an MRI three weeks ago. I certainly cannot continue on like this, as it is not getting any better, and the increase in Tegretol has left me in a daze some days and double vision sometimes. My first appointment with him, he suggested me to think about surgery, as its possible I might have become amune to my medicine, but if the EEG shows ok, then whats next. He seems to think he knows where the problem is at due to past tests (20 year old tests). I'm not asking for a professional opinion from anyone. I would just like some thoughts to ease my mind. Its been so long since I've had to go through this I forgot what its like. Thankyou all for atleast reading my jibberish. I'm just really worried right now. Rob

Comments

Re: Would like some thoughts!

Submitted by littlebug on Thu, 2007-04-19 - 12:35
Before surgery talk to your doctor about changing meds.I am currently in the process of taking my daughter off her old med and starting a new one because she started having alot of break threw seizures.

Re: Would like some thoughts!

Submitted by carrieb on Thu, 2007-04-19 - 12:58
I think you have two options here: 1. Try different meds 2. Ask for a 2-3 day ambulatory or a VEEG (those are normally a week long hospital stay). It could be that you just had a really good 50 minutes. If you think about it, EEGs are a shot in the dark. The doc has no idea when your brain will show strong seizure activity. My brain behaves perfectly EVERY TIME I have an EEG, and, trust me, I've had lots! Many times, though, I'll have a seizure not too long after they get my all unplugged. It's amazing. Needless to say, my doc is frustrated. It could also be that any seizure activity is happening so deep inside your brain that the electrodes aren't able to pick it up. They have bone and brain matter to get through first before picking up the activity.

Re: Would like some thoughts!

Submitted by kev5920 on Thu, 2007-04-19 - 13:42
Hi Rob, I definitely can relate to your story. I was on Tegretol for a good part of my life. Believe it or not, it wore out its welcome last year. My neurologist tried many different meds along with the Tegretol like Keppra, depakote, and Zonegran. (I wouldn't try Zonegran). Finally, they backed down on my meds and I had a seizure very similar to yours. At that point, I went to the hospital for a week. They kept me on 24 hour watch and actually taped me having a seizure. They took me off all the meds and induced one and after that, they put me on depakote. Along with that, I have a VNS implant. If your seizure was a tonic clonic grand mal generalized bad boy, depakote is the med that is recommended. Dillantin and Tegretol are the basics. That would be where I would start. Maybe VNS would help you too. Hope this helps. Good Luck!

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