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MRI is normal but having seizures every day
Epilepsy & Seizures | Last Active: Jun 18, 2019 | Replies (31)Comment receiving replies
@jakedduck1 Hi! Yes i was seen by epitilolgist at Shands in Gainesville. They were the ones that found the abnormalities and where they were, everything! Its been awhile but I did a clinical trial for Topamax and im having complex partials. I feel like they are starting to get a little worse each time. Im mot always losing bladder control everytime but started saying what I use to say (15 yrs ago) I repeat "oh sh*t and im ok" I was just saying "im ok" over and over. I have tried all kinds of different drug cocktails and right now im at the highest dose of all of them now, ive asked her to increase the dose but she tells me she cant that im at the highest dose. And as for changing neuros, I have medicaid so I dont know that I even can. I dont even know of any other ones near me or in my area. My mom takes me to all my doc appt, amd she lives an hour away from me, then its another 30 min to getbto my neuro. I have considered the RNS but I think the percentage rate of it helping is low and I dont think my husband wants me to go through another brain surgery. I take buspar for my anxiety and Amitryptiline for sleep and depression. I think I answered everything..oh yes stress and not sleeping are huge triggers, also I love to crochet and so that helps relax me and listening to music helps also. But sometimes my seizures just happen for no reason at all, while im crocheting not feeling stressed or anything. Oh yeah also I have been having staring seizures, which is new for me. Okay, I think I answered everything that time. I apologize if i didnt. Thank you for all your info and input I really do appreciate everything!
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@crstyday40 Hi Crystal l was reading your post. My heart goes out to you but don't give up. I had a TBI in 1997. After being in the hospital l followed up the neurologist that first admitted me and l had to change him. Then my second one was great and he diagnosed as having seizures in 1998. I was taking seizure medicine no problem. Then he changed over to treating MS patients. So l lost my favorite neurologist. In 2014 l got real sick and was admitted to the hospital and now l had a new neurologist and he said l didn't have seizures l was stressed, anxiety and l was faking falling out. No it was my liver. I had AE by some HE by my liver doctor which is true l have 5 shunts to prove that. Now l going to a new neurologist after sending a letter to my private care doctor after he retired that l went to the Mayo clinic. Because l have a problem with one shunt and my ammonia levels go up. So the new neurologist l like him and now on Monday l am being admitted for a week so they can see if l am having seizures and what kind. But l been reading so much medical material, I have a neice who teaches at Duke, and another doctor in the family. And your test can come back normal but you can still have seizures. And sometimes you have to have test run longer. My new neurologist said doing a eeg for 1hr can't always rule out a seizure. And so sometimes you have to be admitted. So dont give up. It's hard but just ask God to help you find either the right doctors or the one you have just ask if he will test you longer. And just do something you enjoy. I telling lots of people who are waiting. I like working with my hands so l have been able to do some gardening. When l am doing alot of things for others l get tired but l enjoy that, so l do and rest. I praying for you. And l do alot of journaling of my day so when l see the doctor l can show him or her my day.
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@crstyday40 - thinking of you and wondering if you are continuing to experience daily seizures? How are you doing?