Hi all. I saw a 4th neurologist today and had my 6th EEG, which was absolutely normal. And this coming from an Epileptologist that reviewed all the previous doctor's findings, and even agreed with one very well respected Epi doctor who had found spikes previously, but that no epileptiforms. I gave him my history, how if felt like there was always something wrong--or better yet, i felt spaced out even as a child, went into my awkward teen years where everything seemed foreign, then into college when i started to have actual attacks where i would feel out of body or underwater for hours at a time. Within the last 2 years, these underwater feelings and uncontrollable body sensations have taken over my life. I was ready for his diagnosis, which wasnt surprising. Although he acknowledged my brain may be riper for seizures then others, its NOT epilepsy. He encouraged me to work with my regular family doctor, and he talked to me about disassociation disorder....which would explain 99 % of my symptoms. I had no idea there was such a crossover in EP symptoms and this other condition which is soo much like post-traumatic stress! I can't pinpoint what trauma i actually survived (above the normal daddy left us, we were poor, single mom was busy, lalala), but i think at some point, i found it easier to close off, create a barrier, go into my own world, and disassociate.
Anyways, i was expecting this--was ready to hear it. I did some research the other night on non-epileptic seizures, and low and behold, under psychogenic Non-Ep seizures was this description about feeling a change in your environment, or feeling displaced, as if things are surreal. Sounds like an aura doesn't it??? And the vertigo, hazy vision, narcoleptic symptoms, nausea, head and body surges, bad coordination, walking and talking like a drunk were REAL spells...not panic attacks, but real dissociation spells. I can't believe this is mostly a defense mechanism...my brain has been hiding this hurt/trauma by just removing me from the present, and has stolen probably lots of my memories too from childhood (same as many people have expressed here). We have no history of EP in the family, but plenty of pain. Who doesnt LOL really.
Anyways, i guess it's time to get screened properly for this disorder through the DSM index that psych people use. I had placed a call into my therapist before my apptment today, and this Epi. IS NO pysch doc, the fact that he looked objectively at the EEG history, and getting my rather normal but hazy (fill-in-the-blank) personal history, and the fact that I literally considered this disorder just prior to the appointment, well it all seems to fit. Maybe too nicely :rock:
By the way, my mom and sis were with me today, and were very supportive and listened to me and the doctor talk 1-on-1 for an hour and a half. It was like they were avidly listening, but it was a very private conversation, w/o their biases! Then, they gave me hugs and said everything will be all right. And it will, just gotta believe that health is just around the corner, down the road, up the hill, down the stream....haha...but somewhere nearby. And there is empowerment in knowledge, even though i never would have expected this would be the events that shape my 30's.
By and by, i am not going anywhere-i still have seizure symptoms, and left-temporal slowing with rare left focals, so, you know...i'll be sticking around for a bit longer!
Anyways, i was expecting this--was ready to hear it. I did some research the other night on non-epileptic seizures, and low and behold, under psychogenic Non-Ep seizures was this description about feeling a change in your environment, or feeling displaced, as if things are surreal. Sounds like an aura doesn't it??? And the vertigo, hazy vision, narcoleptic symptoms, nausea, head and body surges, bad coordination, walking and talking like a drunk were REAL spells...not panic attacks, but real dissociation spells. I can't believe this is mostly a defense mechanism...my brain has been hiding this hurt/trauma by just removing me from the present, and has stolen probably lots of my memories too from childhood (same as many people have expressed here). We have no history of EP in the family, but plenty of pain. Who doesnt LOL really.
Anyways, i guess it's time to get screened properly for this disorder through the DSM index that psych people use. I had placed a call into my therapist before my apptment today, and this Epi. IS NO pysch doc, the fact that he looked objectively at the EEG history, and getting my rather normal but hazy (fill-in-the-blank) personal history, and the fact that I literally considered this disorder just prior to the appointment, well it all seems to fit. Maybe too nicely :rock:
By the way, my mom and sis were with me today, and were very supportive and listened to me and the doctor talk 1-on-1 for an hour and a half. It was like they were avidly listening, but it was a very private conversation, w/o their biases! Then, they gave me hugs and said everything will be all right. And it will, just gotta believe that health is just around the corner, down the road, up the hill, down the stream....haha...but somewhere nearby. And there is empowerment in knowledge, even though i never would have expected this would be the events that shape my 30's.
By and by, i am not going anywhere-i still have seizure symptoms, and left-temporal slowing with rare left focals, so, you know...i'll be sticking around for a bit longer!
