Quote:
Originally Posted by Porkette
Hi Kandra,
I'm sorry you are having a hard time with finding the right AED's and neuro. I've been on at least 13 different AED's and then my Epileptologist did a DNA blood test on me to find out I was drug resistant and that the best meds for me to take were Diamox and Mysoline. Just like you I have complex partial seizures and absence sz. I often will smell odd odours like natural gas, rubber, or deviled eggs this is known as an aura sz. This will often happen right before a cp sz. where I see lights flashing back and forth in my eyes. My Dr. told me to tighten up my muscles and make my hands into tight fists by doing this it stops the sz. It surprises me that you were allergic to trileptal but not tegretol the 2 drugs are so similar I was allergic to both of the drugs and then the dr. put me on lamictal and I broke out with a wicked rash from the drug and that may be the reason why the dr. didn't put you on the drug because there's been a lot of people who broke out with rashes from lamictal. I'm sure you know sleep apnea and epilepsy are linked together and it's probably the sleep apnea that has caused your epilepsy. Take my word when I say you can live without part of your temporal lobe when I had surgery a few yrs. ago to reduce my sz. they removed 75% of the right temporal lobe and all of my right hippocampus and I'm doing fine. I found that doing word search puzzles and math better my short term memory. Here's wishing you well and May God Bless You!
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Sue,
You've got it exactly right why she won't try Lamictal. I do know that Tegretol and trileptal are similiar in chemical makeup, but it's possible that the fillers etc. in the Carbatrol are helping to curb a reaction. I also know Tegretol is an "old" drug not much used but it IS the one that was originally used which worked...even though no one wanted to put me back on it. I used to take Tegretol and Phenobarb but she won't give me the Phenobarb.
I'm not sure what other combinations she would use. I dont feel the Lyrica helped whatsoever and am not interested in increasing the dose.
I didn't develop the sleep apnea until a few years ago..my E developed before that by around 15 years...but yep, know it doesn't help. At the sleep center they told me they didn't see any sz. activity but I believe they only monitor 2 or 3 leads.
She did indeed mention the surgery but I think she's only thinking that would be an option if I had a positive MRI for the med. temporal sclerosis. What are the criteria for the surgery??
Thanks!
