redheadpapa87
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I began having seizures (that I am aware of) in 2009. I had my first one in June and broke my shoulder blade (Scapula) from the convulsions. I was not in any state of distress at this time. I was rushed to the E.R. with no confirmation of having any abnormality on an EEG. In fact, it was almost not believed that I had a seizure, but was physically being abused, which caused the seizure. This was not the case at all. In addition, doctors believed since there was no concrete medical evidence that this was a type of seizure called PNES (Psychogenic Non-Epileptic Seizures) – often brought on by psychological factors. I felt the doctors were telling me I was self-inducing them. Doctors did end up prescribing me Topamax; with little benefit. Pre-seizure auras, followed by convulsive seizures continued. At this time, after an aura, it would lead directly into a seizure. I have had tests ran, numerous EEG’s conducted with no positive outcome. From 2009-2013, seizures continued at the least monthly to ever few months. I was eventually taken off of the seizure medication and remained off anticonvulsants until July 2014. In September 2013, I had six Grand-Mal seizures leading “status epilepticus.” I was rushed to the E.R. with the seizures; finding out it caused Congestive Heart Failure, kidney failure, and caused a lung to collapse. I was treated for these conditions and hospitalized until October 2013. During this time, I was under no prescriptions for seizures. I experienced one aura during my stay in the hospital without a seizure following. Upon release from the hospital, I was prescribed no anticonvulsants. Since my release, I have experienced seizures and auras (most commonly). Even after being rushed to the E.R., yet again, doctors still seemed hesitant to take things seriously. I have gotten several opinions – three different ones in fact. My last epileptic event led me to the E.R. where I was prescribed Lamactil, mind you, by the original Neurologist that treated me for the PNES. I was released from the hospital on this medication and have been taking it consistently ever since. I began in July on 100mg 2x/day and was increased to 150mg 2x/day when my seizures continued. Mostly, I have auras, or at the least – a feeling of an aura, often not followed by a seizure; some cases I do have a pre-seizure aura and it leads into a full blown seizure. Most often than not, I experience the auras. I also want to say I hope I am not helping to induce them myself due the fact I worry obsessively about having one or if I will be alone and somewhere safe etc. I am always trying to prepare and notice how I am feeling. Often times I sit down to ensure if I do seize I am somewhat out of harm’s way. I do this regularly throughout my day. Some days I do not experience any of those feelings or auras. I am looking for answers, suggestions, things to ask the doctor. I feel I am running out of options and questions to ask to get me the care plan I need; for somewhat to take my case seriously. Any help is appreciated!
Be well - RHP
Be well - RHP