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Frustrated--hah, isn't that a common title.

Wed, 10/03/2007 - 15:14
Hello All. For the past year I have been battling my seizures. I have been to: at least six neurologists--three epilepsy specialists, and four pyschologists. At the current time my family and I are stationed overseas, thus it isn't always easy to seek medical care on the economy. Finding the right doctor is a pain in the butt--and the waiting time, could put you in a coffin first. Here is the "problem", I am part of the many whom have "normal" EEGs and MRI scans. I know many of you may say I'm lucky--but after a year, I pray that before I go to an EEG just ONE spike will show up. It would make my life, and the life of my family--so much easier. Anyway.... I have had three diagnosis of "clear--no doubt about it, epilepsy." I have four diagnosis papers, which state that my seizures are physical and not psychological. One that says it is induced by a heavy dose of cortisol. The rest state--"cryptic seizures but most likely epilepsy with tendency of psychological seizures." All pyscs have ruled out the chance that they are psychological. Each one keeps telling me--"Sorry, I can't help you--it's not psychological." (You may be asking why I went to seek four out, after the first one already told me they couldn't help me. Well, the doctors kept sending me back for the possibility it could be psychological.) Here is my main question: I have this one seizure--in which I go into a delirium stage. My mentality is completely warped. Reaction is delayed, yet I remain conscious. Here is the twist, I go into a four year old delirium. I speak, talk, and act as if I were four years old. I have memories from that age. I do not recognize anyone--that I didn't know when I wasn't that age. I do not recognize my surroundings most of the time--for I lived in a different house and country. Yet, I can recall everything from my four year old age and lifetime. Then, when the seizure ends--I lose all memory of the occurrence of the seizure. It can sometime last for hours. (Obviously, I don't know ANY of this--I'm being told this second hand from my mother, father, sister or boyfriend.) Any help or people with a similar seizure would be most helpful. Thanks so much!

Comments

Re: Re: Frustrated--hah, isn't that a common title.

Submitted by SaraJackie on Wed, 2007-10-03 - 16:10
Gayle, thank you so much for your help. I’m bookmarking this thread and writing down the name of your medication. It’s good to know I’m not the only person with this kind of seizure. Unfortunately—my EEGS, MRIs, and CTS all come back clean—at the moment. My family and I are hopeful that it will finally spike one day and I can have a hard diagnosis. Karolina, In answer to your questions: Hi Sara, Do you know any of the reasons these psych doctors noted as to why they thought this wasn't pseudoseizures since your tests so far have come back normal? The psychologists do not believe they are psychological after their extensive examinations, and psyc testing. I’ve done numerous tests and they’ve all come back “clean” also. Along with examinations—they all believe the same thing—not pseudoseizures. Have you done a in-hospital sleep deprived EEG? Yes, several—these too are “clean” or normal. I have no luck. Have they put you on any type of meds? I’ve been on three different kinds of medications. I started off on Keppra—didn’t work for me. Then I was on Keppra and Depakote—worked to an extent, but too many side effects. At the moment I am on Topamax 125 mg. It seems to be working well—but I still have seizures daily. Yet, it’s a large improvement from when the seizures originally started.

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