First of all THANK YOU!!! I have learned so much from this website and forum ~ I sincerely appreciate all of your honesty and information.
About Me ~ I had my first seizure a year and 1/2 ago in Post Op right after I had a Tubal ligation. I was just coming out of anesthesia and had a grand Mal - except I never lost consciousness - I could hear everything around me I just couldn't speak, breathe or respond what-so-ever. I heard the nurses talking, they had just told my husband that the surgery went fine and he was going to the cafeteria, so they couldn't find him. I was trying to scream his cell phone number but nothing worked. It lasted about a minute, they had to bag me to get me to breathe, but once I came to I just had this overwhelming fear that if I went to sleep it would happen again, and had the worst headache of my life.
An EEG done a few weeks later showed an abnormality or "spikes" in the front temporal lobe. My Neuro put me on a low dose of Topamax (and yes Dopamax is the perfect way to describe that drug for me!) and basically I lived in denial for a year, thinking that it must have been the surgery etc., and served my time on Topamax, convinced that when I went in for my year check up and EEG that I'd be fine. I mean doesn't everyone feel like their brain is trying to flip over once in a while? and yes I've had De ja Vu so intense I could smell it - doesn't everyone?? My 1yr EEG showed the same thing, I've finally come to accept that what is and have moved out of the anger to education mode! I complained about the topamax side effects to my Neuro, we tried Lamactil - Bad rash, felt like I slept on a christmas tree, so now we're on 500mg Keppra slow release - day 4 and so far so good! I also started a vigorous vitamin regimen so that may be helping!!
Now that I have started reading and educating myself I started the Modified Adkins diet and am going to begin hormone therapy (estrogen dominant). I have hypothyroidism as well but have been taking meds for that for years.
So, ultimately what I'm wondering is what kind of experience has anyone had treating their disorder with the M.A.D. or horomones, and have you seen results on your EEG??
Thanks again, and especially to anyone still reading this! Other than being consumed with this at the moment, I am the proud Mom of a 6yr old and 3yr old, work part time as a bookkeeper (and that was reeeaaal fun on the topamax!) and spend my summer days gardening and bike riding. I also have the most loving and supportive husband anyone could ask for!
Rizzo
About Me ~ I had my first seizure a year and 1/2 ago in Post Op right after I had a Tubal ligation. I was just coming out of anesthesia and had a grand Mal - except I never lost consciousness - I could hear everything around me I just couldn't speak, breathe or respond what-so-ever. I heard the nurses talking, they had just told my husband that the surgery went fine and he was going to the cafeteria, so they couldn't find him. I was trying to scream his cell phone number but nothing worked. It lasted about a minute, they had to bag me to get me to breathe, but once I came to I just had this overwhelming fear that if I went to sleep it would happen again, and had the worst headache of my life.
An EEG done a few weeks later showed an abnormality or "spikes" in the front temporal lobe. My Neuro put me on a low dose of Topamax (and yes Dopamax is the perfect way to describe that drug for me!) and basically I lived in denial for a year, thinking that it must have been the surgery etc., and served my time on Topamax, convinced that when I went in for my year check up and EEG that I'd be fine. I mean doesn't everyone feel like their brain is trying to flip over once in a while? and yes I've had De ja Vu so intense I could smell it - doesn't everyone?? My 1yr EEG showed the same thing, I've finally come to accept that what is and have moved out of the anger to education mode! I complained about the topamax side effects to my Neuro, we tried Lamactil - Bad rash, felt like I slept on a christmas tree, so now we're on 500mg Keppra slow release - day 4 and so far so good! I also started a vigorous vitamin regimen so that may be helping!!
Now that I have started reading and educating myself I started the Modified Adkins diet and am going to begin hormone therapy (estrogen dominant). I have hypothyroidism as well but have been taking meds for that for years.
So, ultimately what I'm wondering is what kind of experience has anyone had treating their disorder with the M.A.D. or horomones, and have you seen results on your EEG??
Thanks again, and especially to anyone still reading this! Other than being consumed with this at the moment, I am the proud Mom of a 6yr old and 3yr old, work part time as a bookkeeper (and that was reeeaaal fun on the topamax!) and spend my summer days gardening and bike riding. I also have the most loving and supportive husband anyone could ask for!
Rizzo
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