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Hi!
I was happy to find this community, which seems very open, generally kind and helpful! These are very rare qualities even off the internet these days. I am here looking for another anchor in a stormy sea. In return, I am also (as best that I can) here for the community, learning/teaching, helping, and as an anchor in the stormy seas of others here. I apologize for taking a while to make my introduction and an Epilepsy Biography, I haven’t been online much since joining and I am working to change that. Please forgive me if you find what I post long, especially for an introductory post. I assure you it is worth the read!
Bottom line at the top: I was pushed out into the world with half the tools I needed to deal with Epilepsy. It was done on purpose… I only had what I needed to deal with the Rage. I had to adapt and I do not apologize for it… I am a survivor, not a victim!
I suspect that my Epilepsy (the “S. P. S. Rollercoaster” as I refer to it at times) started in early childhood, possibly from a forceps assisted delivery, the massive ear infections I used to get, a head injury and/or some combination of those. At age 15 (1984), 12 months into 15 month hospital stay at a top tier Children’s Psychiatric Hospital, I was diagnosed with TLE (sps) w/secondary Intermittent Explosive Disorder (also abbreviated IED and is now generally known as Aggressive Affect [AA] or Rage Disorder depending upon severity) by Dietrich Blumer, MD and Ralph D. Rabinovitch, MD. A "classic case" as he had said. Thirty years, and many life trials later, I find myself once again fighting for a foothold against Epilepsy.
My current status is: Intractable TLE (sps) w/secondary Intermittent Explosive Disorder. Diagnosed at age 15 (1984, I now suspect from early childhood) with TLE (sps) w/secondary Intermittent Explosive Disorder (also abbreviated IED and is now generally known as Aggressive Affect [AA] or Rage Disorder depending upon severity) about 12 months into a 15 month hospitalization. Cleared of Primary/Axis I Psychiatric Disorders. I am deeply grateful for the perseverance of Dietrich Bloomer, MD, Ralph D. Rabinovitch, MD, and my parents to this day; for as "ugly" as Epilepsy is, prison is where I would have found myself eventually and that is a much worse place to be. An essential part of my treatment plan at that time was to “adapt”, not just take medications, in order to effectively deal with my “type” (as they put it) of Epilepsy with Rages. The intense Psychotherapy I underwent in the hospital went a long way towards that ultimate goal. However, there were many important things about Epilepsy that were left out, that I wasn’t told. I had started to suspect this over the past 4 years as I had never looked too deeply into Epilepsy before then. All of this has really come to hit me extremely hard over the past year as my Epilepsy took a very sharp turn for the worse. Despite the apparent handicap regarding lack of knowledge about Epilepsy, I guess I haven’t done too bad overall, not fabulous either. However, like I said above; I am not locked up like some rampaging animal, right? I had to prove Rabinovitch wrong! (and myself more than anyone else?) Despite having messed up more things than I can remember, I eventually got my life stabilized. Yes, for all you who are wondering: I had driven for 29 years until last summer… Really hard to keep the truck parked as I so much love to drive the back roads on nice sunny days… (and please, let’s not start here about opinions on driving!)
While nearly all of the physical violence "left" me over 24 years ago, and the rest was dealt with through therapy over the interceding years, there is still that tendency for the "verbal rampage", odd verbal outbursts, "dead zones" and mood inconsistencies. On that, I absolutely must acknowledge the love and support of my wife! She has not only stood by me, she has also attended doctor appointments, helped track moods/rages/seizures, learned about Epilepsy, attended therapy sessions with me (so that she can better understand my rages and mood inconsistencies, how she can best respond to them, so that I can better understand her responses and initial feelings before her responses and how she sees me), and she has (when she need not of any length) put up with many of my multi-day "verbal rampage" sessions and even more of the often occurring short ones.
My Epilepsy Treatment journey so far has gone from top doctors in one state to one in another state that simply thought I was making the whole thing up to a another (in that same state) who felt I had "grown out" of the “seizures” (Rages). Changed treatment in 1994, which was essentially going off the Tegretol, and all went reasonably well (other than it being the worst time in my life to make that choice) into the mid 2000's. That’s when things started on a slow downward spiral. I was on Klonopin by 2003, Tegretol by 2006 and Primidone for tremor by 2007. Klonopin was replaced with Ativan in 2006 (got off that stuff last year!) My first Atonic (2010), worsening of Rage off and on again, development of Essential Tremors ([2005] or is it related to Epilepsy? not too sure now, however the s%!# is nearly constant now... like a vibrator on low, with no off switch, plugged into the wall...), development of what appears to be Bell’s Palsy, plus other stuff I both had and didn’t have before. More recently, the nightmares have started again and so has the lashing out in my sleep. Some I have been able to confirm were in timing with the cycling of my VNS. ...AND THE RINGING IN MY EARS!!! All of this leads me to where I am today. I am on my third doctor where I currently live and this one is helping, finally! Standard EEGs and MRIs going back to 1984 have been clear, except for a 2010 MRI after the Atonic which showed possible early MS (compared to a 2006 MRI). About 6 months ago, I had my first 72 hour EEG ever, yes, EVER. What a mess! Stuff everywhere (vast majority, if not nearly all, "sub-clinical" as I have seen it called) and for very long periods, like hours... My wife and I had already suspected that at least some of what I was experiencing already was seizure related. The previous two doctors had confirmed a few other things too. Other than that, the only things I knew since 1984 was that my "Rage", De'ja Vu, rare “Vertigo” and smell/taste were related to the Epilepsy. I was able to match some things up to the EEG that I previously thought were just plain normal/odd occurrences and/or other health issues (IBS or sleep related for example) along with some events that happened that I was uncertain as to the cause. Yup, you guessed it... Certainly an eye opener and it did make me wonder how long it has been going on. Last summer, I was maxed on Trileptal and Topiramate, mid range on Divalproex DR and I was getting worse fast. I was a mess... I am still a mess yet improving slowly! Since then, I have switched out Trileptal for Vimpat, stayed on Topiramate, maxed out on Divalproex DR and have had a VNS implanted. The VNS was implanted on October 14th, 2013. Settings as of January 24 are .75ma for 30 seconds every 5 minutes with magnet mode at 1.0ma for 60 seconds. The magnet mode really kicks! I only use it a few times initially to get used to it then leave it alone until needed. Next upward adjustment is expected on February 18th. Yes, hurts like… well it just hurts bad half the time and it does screw up not only my voice. It also screws up my ability to not just form words vocally (and other sounds too); it also “jams” the up whole process at times right into the brain (like control signals to the voice box and even word finding)… I sleep like a rock most of the time though! Not about to give up!
p.s. If anyone has heard of and has information on where I can find Dr. Rabinovitch's "Empty Child" research and published works, please let me know!
note: Edited to clear up unintended misunderstanding of the use of "IED".
I was happy to find this community, which seems very open, generally kind and helpful! These are very rare qualities even off the internet these days. I am here looking for another anchor in a stormy sea. In return, I am also (as best that I can) here for the community, learning/teaching, helping, and as an anchor in the stormy seas of others here. I apologize for taking a while to make my introduction and an Epilepsy Biography, I haven’t been online much since joining and I am working to change that. Please forgive me if you find what I post long, especially for an introductory post. I assure you it is worth the read!
Bottom line at the top: I was pushed out into the world with half the tools I needed to deal with Epilepsy. It was done on purpose… I only had what I needed to deal with the Rage. I had to adapt and I do not apologize for it… I am a survivor, not a victim!
I suspect that my Epilepsy (the “S. P. S. Rollercoaster” as I refer to it at times) started in early childhood, possibly from a forceps assisted delivery, the massive ear infections I used to get, a head injury and/or some combination of those. At age 15 (1984), 12 months into 15 month hospital stay at a top tier Children’s Psychiatric Hospital, I was diagnosed with TLE (sps) w/secondary Intermittent Explosive Disorder (also abbreviated IED and is now generally known as Aggressive Affect [AA] or Rage Disorder depending upon severity) by Dietrich Blumer, MD and Ralph D. Rabinovitch, MD. A "classic case" as he had said. Thirty years, and many life trials later, I find myself once again fighting for a foothold against Epilepsy.
My current status is: Intractable TLE (sps) w/secondary Intermittent Explosive Disorder. Diagnosed at age 15 (1984, I now suspect from early childhood) with TLE (sps) w/secondary Intermittent Explosive Disorder (also abbreviated IED and is now generally known as Aggressive Affect [AA] or Rage Disorder depending upon severity) about 12 months into a 15 month hospitalization. Cleared of Primary/Axis I Psychiatric Disorders. I am deeply grateful for the perseverance of Dietrich Bloomer, MD, Ralph D. Rabinovitch, MD, and my parents to this day; for as "ugly" as Epilepsy is, prison is where I would have found myself eventually and that is a much worse place to be. An essential part of my treatment plan at that time was to “adapt”, not just take medications, in order to effectively deal with my “type” (as they put it) of Epilepsy with Rages. The intense Psychotherapy I underwent in the hospital went a long way towards that ultimate goal. However, there were many important things about Epilepsy that were left out, that I wasn’t told. I had started to suspect this over the past 4 years as I had never looked too deeply into Epilepsy before then. All of this has really come to hit me extremely hard over the past year as my Epilepsy took a very sharp turn for the worse. Despite the apparent handicap regarding lack of knowledge about Epilepsy, I guess I haven’t done too bad overall, not fabulous either. However, like I said above; I am not locked up like some rampaging animal, right? I had to prove Rabinovitch wrong! (and myself more than anyone else?) Despite having messed up more things than I can remember, I eventually got my life stabilized. Yes, for all you who are wondering: I had driven for 29 years until last summer… Really hard to keep the truck parked as I so much love to drive the back roads on nice sunny days… (and please, let’s not start here about opinions on driving!)
While nearly all of the physical violence "left" me over 24 years ago, and the rest was dealt with through therapy over the interceding years, there is still that tendency for the "verbal rampage", odd verbal outbursts, "dead zones" and mood inconsistencies. On that, I absolutely must acknowledge the love and support of my wife! She has not only stood by me, she has also attended doctor appointments, helped track moods/rages/seizures, learned about Epilepsy, attended therapy sessions with me (so that she can better understand my rages and mood inconsistencies, how she can best respond to them, so that I can better understand her responses and initial feelings before her responses and how she sees me), and she has (when she need not of any length) put up with many of my multi-day "verbal rampage" sessions and even more of the often occurring short ones.
My Epilepsy Treatment journey so far has gone from top doctors in one state to one in another state that simply thought I was making the whole thing up to a another (in that same state) who felt I had "grown out" of the “seizures” (Rages). Changed treatment in 1994, which was essentially going off the Tegretol, and all went reasonably well (other than it being the worst time in my life to make that choice) into the mid 2000's. That’s when things started on a slow downward spiral. I was on Klonopin by 2003, Tegretol by 2006 and Primidone for tremor by 2007. Klonopin was replaced with Ativan in 2006 (got off that stuff last year!) My first Atonic (2010), worsening of Rage off and on again, development of Essential Tremors ([2005] or is it related to Epilepsy? not too sure now, however the s%!# is nearly constant now... like a vibrator on low, with no off switch, plugged into the wall...), development of what appears to be Bell’s Palsy, plus other stuff I both had and didn’t have before. More recently, the nightmares have started again and so has the lashing out in my sleep. Some I have been able to confirm were in timing with the cycling of my VNS. ...AND THE RINGING IN MY EARS!!! All of this leads me to where I am today. I am on my third doctor where I currently live and this one is helping, finally! Standard EEGs and MRIs going back to 1984 have been clear, except for a 2010 MRI after the Atonic which showed possible early MS (compared to a 2006 MRI). About 6 months ago, I had my first 72 hour EEG ever, yes, EVER. What a mess! Stuff everywhere (vast majority, if not nearly all, "sub-clinical" as I have seen it called) and for very long periods, like hours... My wife and I had already suspected that at least some of what I was experiencing already was seizure related. The previous two doctors had confirmed a few other things too. Other than that, the only things I knew since 1984 was that my "Rage", De'ja Vu, rare “Vertigo” and smell/taste were related to the Epilepsy. I was able to match some things up to the EEG that I previously thought were just plain normal/odd occurrences and/or other health issues (IBS or sleep related for example) along with some events that happened that I was uncertain as to the cause. Yup, you guessed it... Certainly an eye opener and it did make me wonder how long it has been going on. Last summer, I was maxed on Trileptal and Topiramate, mid range on Divalproex DR and I was getting worse fast. I was a mess... I am still a mess yet improving slowly! Since then, I have switched out Trileptal for Vimpat, stayed on Topiramate, maxed out on Divalproex DR and have had a VNS implanted. The VNS was implanted on October 14th, 2013. Settings as of January 24 are .75ma for 30 seconds every 5 minutes with magnet mode at 1.0ma for 60 seconds. The magnet mode really kicks! I only use it a few times initially to get used to it then leave it alone until needed. Next upward adjustment is expected on February 18th. Yes, hurts like… well it just hurts bad half the time and it does screw up not only my voice. It also screws up my ability to not just form words vocally (and other sounds too); it also “jams” the up whole process at times right into the brain (like control signals to the voice box and even word finding)… I sleep like a rock most of the time though! Not about to give up!
p.s. If anyone has heard of and has information on where I can find Dr. Rabinovitch's "Empty Child" research and published works, please let me know!
note: Edited to clear up unintended misunderstanding of the use of "IED".
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Particularly with TLE, there are misdiagnoses and treatment problems along the way, and it can take several doctors (and medications) before finding a good one that can put you on the path to relief.
