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Epilepsy For support and discussion about Epilepsy and Seizure Disorders. |
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11-09-2010, 11:05 AM | #21 | ||
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New Member
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Thanks so much for the information. Will be doing some more research on the Vitamin B... he just had blood work done, so I'll be looking at the results and see what his Hcy was. I noticed you are in NY? Do you have any suggestions for an Epilepotologist? We will be going to Strong Hospital in Rochester NY to get his EEG done, and are trying to get into the center. Again, I can't thank you enough for your kind words and encouragement. He is my whole world, and I guess that this is the 'better or worse, sickness and in health" part, right? Thank you, and I'll let you know what happens... Cassie |
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11-09-2010, 06:02 PM | #22 | ||
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Hi Cassie,
I can't believe that you are going to Strong Memorial Hospital because that's the same place that I go to and that's where I had my last surgery done. I had my first surgery done in Syracuse at the University hospital and I wasn't to pleased with them at all. You are going to a great place in Rochester I've been going there since I was 10 yrs. old and then I've tried different locations but I always end up going back to Strong Memorial. Do me a favor and check your private messages in the top right hand corner of the screen. Here's wishing you and your fiance the best of luck and May God Bless You! Sue |
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12-21-2010, 08:59 PM | #23 | ||
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Junior Member
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I was diagnosed with a seizure disorder 8 ys ago, and haven't been back here in a couple years, or even researched seizures for a couple years, so this is new to me, but makes sense. And I'm so glad!
When my head blew up 8 ys ago, on my second trip to the ER in a month, I was unconscious and seizing the entire way from home to the hospital. My neuro witnessed my status epilepticus in the ER. And yet follow-up testing with a video-EEG and sleep-deprived EEG etc never showed any instability or anything. An epileptologist at the time told me I didn't have epilepsy, which didn't make sense because I definitely had seizures! I still was treated with anti-epilepsy medication (keppra, which reduced the seizures from unconscious grand mal seizures to periodic partials, and then plus lyrica). Back then, it was clear that the seizures were related to my hormones, but that's all I knew. Now, with my health getting worse following a bad year of stress, I am having breakthrough seizures that are more clearly related to physiological things in my body. I'm even wondering if the Status episode and other major seizure episodes weren't also related to these things. I can't explain it all because that's what I'm back researching, but things that appear to be malfunctioning and are hypothetically contributing (and probably even related, but I'm not yet sure how): sugar sensitivity/insulin, vvv low blood pressure at night may induce my body to over-respond, low blood volume and/or too much salt (not sure), over-sensitivity to adrenaline (almost had a seizure at the dentist and now know to ask for the numbing agent without epinephrine!), etc. Mark, I wanted to add that there are times, like after I cheated and had pie at Tgiving or too much salt (long story, but doc told me to), my brain was SUPER-startleable (ha, not a word), such that I felt like my brain was ready to explode and light or noise or significant movement would make my heart race and my head start to spin. Sleeping upright helps during those times, fwiw. In short, I'm interested in learning more about physiological reasons for seizures! |
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"Thanks for this!" says: | Mark56 (04-23-2011) |
04-22-2011, 07:03 PM | #24 | ||
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Hi my name is Mona and i just join and i read that you have Todd's Paralysis if you are willing to talk to me i would appreciate it thanks for your information
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"Thanks for this!" says: | Mark56 (04-23-2011) |
04-23-2011, 12:35 AM | #25 | |||
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Grand Magnate
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A real revelation was produced when at our son's request we worked with his psychiatrist after a stay in the hospital to monitor his seizure cycles via elecroencephalgraph monitoring [a plethora of leads from his skull] and video monitoring which only confirmed non-epileptic psychogenic seizures. Working with his psychiatrist, we re-addressed his meds. Weaned him off of Zyprexa and Clomipramine then worked him up to a strong therapeutic dosage of Abilify. His seizures have DRAMATICALLY abated. Not altogether, but a dramatic reduction. Even some of his emotiveness resumed. On the other meds he was pretty much just a zombie with no emotion at all. Despite the continuation of the psychoses, our son has become much more communicative, working well with his physicians, and participating at home. He continues to have his dramatic fears and must have his safety zone i.e our home and/or our presence. We do have hope of integrating him into a support program which will allow him outside the home interaction with others in an effort to reintegrate him with society. Much work remains ahead. I hope my horrid delay in getting back to you has not lost you in the scheme of things here. I am sorry for my delay. Mark56 |
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04-23-2011, 12:39 AM | #26 | |||
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Grand Magnate
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If you were trying to get another poster to reply, sorry if I jumped in unawares. Caring, Mark56 |
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