mrs murphy
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I had a car wreck in 2007, started having "spells" in late 2007-early 2008. At first, i did not believe seizures until family practitioner told me to go see neurologist and referred me. I went to the local ACC hospital (have no insurance and no money) and, at first, they said "partial complex" to then turn around 3 visits in and claim "pseudo-seizure" with absolute no proof of such.
Since mid-2008, I've been seen by 3 Resident Neurologists... all 3 claim "pseudo-seizure" without any Video EEG of such, nor any other evidence. I do however, have an abnormal MRI of the Hippocampus and T2 Grey Matter changes.
Still, they continue to "write me off" as pseudo-seizure... though I have full eye dilation, chemical smell, parathesia, loss of consciousness/lack of awareness, confusion, exhaustion, arm and leg cramp and spasm, diarrhea and extreme nausea (after)...
When I've had a "full" Partial-Complex, I've been known to sleep for upwards of 3.5 hours, with full on muscle pain/spasms for upwards of a day later. Still... told "pseudo-seizure".
So... they put me on topiramate in 2008, went up to 100mg and had sick ringy headache - burning fingers and toes - and absolute blurry vision. I also had major hostile mood swings and became completely stupid. Went down to 75mg and below... all side effects diminished, I have "partial" control and improvement, but Neurologists claim it only as "placebo" because they refuse to believe the med has done anything. They also refuse to add any med to my regimen and insist I need to see a psychiatrist (I do have a psych history that they were made aware of at first visit).
I no longer have a Neurologist and only see my FP, who believes the "spells" to be seizures. I have witnesses who reported and a ER visit from where I had one while at another place of work (more witnesses including a Medical Doctor, worked for a clinic)... Neurologists still claim "pseudo-seizure" because I do not have symptom of "biting tongue" or "peeing on yourself".
So... I've wanted to find a group somewhere that could possibly relate, or at least, "know" what it is I go through.
I am also, now, entering peri-menopause and my seizures - once primarily hit and miss, sporadic, and daytime - are now, more and more, occurring at night and are clustering into repetitive "partial" seizures over a period of 3-6 days at a time.
I've not told any of the Neurologists because I no longer see them. I told the FP, he prescribed me a prescription for Valium to take ONLY during the "clusters". I still have, from time to time, hit or miss sporadic occurrences.
Since mid-2008, I've been seen by 3 Resident Neurologists... all 3 claim "pseudo-seizure" without any Video EEG of such, nor any other evidence. I do however, have an abnormal MRI of the Hippocampus and T2 Grey Matter changes.
Still, they continue to "write me off" as pseudo-seizure... though I have full eye dilation, chemical smell, parathesia, loss of consciousness/lack of awareness, confusion, exhaustion, arm and leg cramp and spasm, diarrhea and extreme nausea (after)...
When I've had a "full" Partial-Complex, I've been known to sleep for upwards of 3.5 hours, with full on muscle pain/spasms for upwards of a day later. Still... told "pseudo-seizure".
So... they put me on topiramate in 2008, went up to 100mg and had sick ringy headache - burning fingers and toes - and absolute blurry vision. I also had major hostile mood swings and became completely stupid. Went down to 75mg and below... all side effects diminished, I have "partial" control and improvement, but Neurologists claim it only as "placebo" because they refuse to believe the med has done anything. They also refuse to add any med to my regimen and insist I need to see a psychiatrist (I do have a psych history that they were made aware of at first visit).
I no longer have a Neurologist and only see my FP, who believes the "spells" to be seizures. I have witnesses who reported and a ER visit from where I had one while at another place of work (more witnesses including a Medical Doctor, worked for a clinic)... Neurologists still claim "pseudo-seizure" because I do not have symptom of "biting tongue" or "peeing on yourself".
So... I've wanted to find a group somewhere that could possibly relate, or at least, "know" what it is I go through.
I am also, now, entering peri-menopause and my seizures - once primarily hit and miss, sporadic, and daytime - are now, more and more, occurring at night and are clustering into repetitive "partial" seizures over a period of 3-6 days at a time.
I've not told any of the Neurologists because I no longer see them. I told the FP, he prescribed me a prescription for Valium to take ONLY during the "clusters". I still have, from time to time, hit or miss sporadic occurrences.
