thanks Darlene and Sue for the explanation of the Wada test.

i don't have insurance so I'm sure they son't do that. Sue, that is amazing that they could pinpoint the exact reason why you have seizures. i would be happy if they could figure out where in the brain mine are starting and actually have some proof of them. No doctors have ever seen them but in November of 2011 I had a status episode from not being able to get one of my meds. I had over 26 seizures in a little over an hour and had to be airlifted to UMC in Tucson. Needless to say the ER docs did bloodwork and a chest xray to rule out pneumonia or infection I guess. and it all came back fine so they decided it was from no having the med for a week and two nights of not sleeping before the seizures started. they had given me two shots of valium and the helicopter crew gave me some ativan all in my IV. They sent me home after 6 hours. Home is one and a half hours SW of Tucson in a tiny town near the border which is why they had to airlift me out.

I haven't actually had a neurologist for years since I moved here from Rochester MN. and then I never had just one neurologist. I went to Mayo and they jumped me around to whoever was available. And I had several bad experiences at Mayo some due to the seizures and some due to the FMS. they are really good at some things and not so good at others. the reason i was there in the first place was because my ex(divorced in 2002) is a surgeon there. He divorced me because of the FMS. Said he didn't believe it was a real illness and that he believed it to be a form of depression. We were married 18&1/2 yrs(actually divorce was final on our 19th anniversary) and we have 3 children who are all adults now the youngest is 20.

I have a referral to see a neurologist from the epilepsy center at UMC. I know of several women in our town who see this one woman neurologist and really like her so I'm hoping I can see her and have her as my neuro. I have had so many neurologists in my life and of all of them only 2 were really good. One was in Mpls. and he is now retired, and one was at Yale university. he was quirky but good at what he did. and they both never doubted for an instance that I have a seizure disorder. i have had so many bad experiences starting as a child.

I have had so many changes since I had the status episode. Many memory problems like of course short term memory stuff which I have had in the past from concussions, and in 2002 I admitted myself to the Psych ward for depression after trying to go off my antidepressant thinking my depression was all caused by my ex:P and when I realized I still needed it it no longer worked and I got very depressed and suicidal. I was there for almost 3 weeks and they kept trying new meds and of course it takes at least 6 weeks for the meds to build up in your body and work for you but I couldn't stay there 6 weeks so they pushed me into getting ECT(Electro convulsive therapy) basically shock treatments. I was not in a state where I should have been even been asked to make that decision but anyway I forgot about the seizures as the depression was so bad and I couldn't think about much of anything, so I had three ECT treatments they wanted me to come back after being discharged for 3 more but they were so horrible I cancelled them. and less than 2 weeks later i began to have more seizures after not having them for several years. These were different at first they happened only when I was laying down and asleep or going to sleep and they escalated to daytime GM seizures. they couldn't find anything on the EEg again and did another VEEG with the electrodes just on top of my head and nothing showed and I didn't have any seizures. Mine have always been pretty sporadic but mainly around my period, usually just before etc.


so my regular doc doesn't want to mess with my seizure meds as he doesn't feel qualified (I don't blame him) so now I will see another neuro and am hoping for a good one this time. I now live alone after an 8 year relationship and after the status episode was so worried about being alone that I was even thinking about maybe trying to get a seizure dog. But I already have a little dog(who actually has seizures in her sleep, kind of ironic) and am not sure if they would get along plus it would be more work for me and with also havig FMS and several other chronic illnesses autoimmune stuff that taking care of one more thing would be difficult for me.

i was going to say that some of the strange things that I forget daily are to eat, sometimes to even drink water and sometimes to bathe. I have never had this problem before. I do need to lose weight and have lost about 15 pounds since Aug. but it's not the best way to do it. and I know my brain needs to heal from the seizures and eating small meals frequently as well as getting enough sleep is important. the other weird thing is that my days and nights are totally mixed up. Which has never happened before.

I'm wondering if any of you have had any of these problems after having seizures, especially if any of you have experienced a status episode?

thanks for being so prompt in explaining the wada test to me. I have done some reading and they are trying to find less invasive tests to get the same results. I hope they do continue to learn more about seizures and the brain in general because it seems to me that they have really only scratched the surface of what there is to know at this point!

Take care,
Sara

P.S. sorry for another long post, I can't seem to get them shorter.