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Old 04-11-2014, 09:25 AM
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"get thee to an epileptologist"


Sorry to mangle Hamlet, but I don't think Ophelia would mind, and she would probably rather see an epileptologist than go to a nunnery!

Note: This turned into kind of a long post, and if you don't want to read it all, the main message is to switch to an epileptologist as soon as possible if you have any way to do so.)

But seriously, I will probably be on a soapbox about this for a while. I have already talked about this in a couple of other posts, but I think the subject deserves a thread of its own.
As many of you know, I have had a diagnosis of epilepsy and been on meds for over 30 years, and I'm fairly knowledgeable about many aspects of this condition. I've only had 2 neurologists in that time and have learned a lot of what I know through my own research. In retrospect, I probably felt I needed to do that research because I wasn't getting enough info from my neuros. My former neurologist just retired and I had my first visit with an epileptologist on the 8th of this month. As a result of that experience, I encourage every single person on this board is to change from seeing a neurologist to seeing an epileptologist as soon as you can, if there is any way possible to do so. For me, seeing one was like a whole new world had opened up around my epilepsy. My wife was with me and were both absolutely amazed at the obvious high level of knowledge this woman had compared to the neurologists I have seen. When she was asking about my history and what my previous docs had told me, what tests they had run, and a number of other things, it was easy to see that she was very dismayed about the level of care I had been getting. A corollary in my own life, as a professional bicycle mechanic and dealer with decades of experience, is when someone brings in a bike that has been worked on by an inexperienced or not-too-knowledgeable mechanic and I immediately see a half dozen glaring problems that had been ignored or unrecognized. A specialist in any field sees those things in a totally different way than others do.
One example: I had an MRI last November, and my neurologist told me that there were some definite abnormalities in various areas, but that overall those were not too far outside of variations you would expect to see in anyone. When this new doc looked at the same MRI she saw a LOT of things that were very wrong. I don't remember all of it, of course, and I hope to get what she said in writing, but she was talking about bright spots here and there, small voids that indicated tissue damage, areas where fluid has probably accumulated, and lots of things indicating why my memory is bad, why I have that face-blindness issue, and so on. She said that both the initial people who interpret the results, as well as the neuros, simply don't see things that epileptologists do. I believe her 100%. Also, I told her that I had been the one who asked my neurologist about getting a VNS, and that I have been the one to suggest various changes in the VNS parameters to deal with some of the side-effects. There was also a setting on my VNS which was at odds with one of the norms. She mentioned it and I told her that I had asked my neurologist about it and suggested he change it, and he basically said he didn't think he would. She said it has to be changed and she did it. My neurologist has dealt with a handful of VNS patients over the years, and she has probably dealt with hundreds and has had specialized training in it.
I know that there are really great neuros who are probably better than not-so-great epileptologists, but still, I think that overall you are MUCH better off seeing someone who actually specializes in this complex and confusing and highly technical disorder.
Well, I hadn't intended to write nearly this much, and I have work to get going on, but think very seriously about this and try to switch if you can. (My daughter, who has epilepsy too, is working on finding an epileptologist now.)
Have yourselves a great day!

Cheers! Onward!
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Last edited by arnie; 04-11-2014 at 09:36 AM.
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Old 04-11-2014, 09:35 AM
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Originally Posted by arnie View Post:

the main message is to switch to an epileptologist as soon as possible if you have any way to do so.)
Otherwise, you may be left by the wayside for years and years, wondering what needs to be done. Glad my dr. guided me to an epileptologist years ago.
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Old 04-11-2014, 09:42 AM
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If you posted this today at 2 how is it that I read it two days ago and told my psychiatrist then that I was changing to an epileptologist?
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Old 04-11-2014, 09:43 AM
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Oh. Because you said it in another post.
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Old 04-11-2014, 10:23 AM
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yup, kirsten. I know very well how things and timelines and all of that can be distorted for those of us with E. I'm glad you're making the change. Keep us posted on how it goes!
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Old 04-11-2014, 10:26 AM
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haha Kirsten, i was gonna say u are a psychic!!


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Old 04-11-2014, 10:31 AM
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I've an appointment with my neurologist on the 15th. I'm going to keep it, and let him finish his precious meds change--may as well stick it out to the end, which is nigh. After that, it's to Dr Butler. Luckily, I do have an epileptologist nearby and he's kind enough to charge medical aid rates.
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Old 04-11-2014, 11:03 AM
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Arnie,

I've gone to quite a few epileptologist and they didn't keep up with my case.
This was when my seizures were doing really bad. I always ended up going back to my neurologist.The epileptologist didn't bother to read my file.
My neurologist knows it backwards and forwards, and he's one of the best in his field.
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Old 04-11-2014, 11:25 AM
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My neurologist said they had a doc that specializes in seizures and he'd discuss my file with them. I have no idea what that means but hope it makes some sort of difference.
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Old 04-11-2014, 12:49 PM
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I agree with you 110%, arnie. I spent 2 years with a neurologist and got no where in terms of seizure control; in fact seizures were continuing to evolve, and he didn't know what to do. One time I'd see him and he would be thinking "focal seizures", another time psychogenic non-epileptic seizures, another time he was querying MS and thought the seizures were spasms of some sort, then it was back to "focal seizures". My 1-hour EEG and MRI with him were normal, he said, and based on those he was convinced they weren't real seizures. He refused to send me for a video EEG back then (my seizures started 4 years ago) because the wait list was "too long". The wait was 6 months to a year, but why couldn't he have put me on the list anyway? He refused to consider an ambulatory EEG because the wait for one of those was 3-6 months.

By pure fluke I saw a doctor from a different specialty related to another problem and she referred me to an epileptologist. The epileptologist looked at the MRI the neurologist. had done, and said she would never make a diagnosis based on that scan because some areas were blurred and the scan didn't include all the appropriate views. The EEG was too "noisy" (me or poor grounding, she said) and uninterpretable. And that neurologist I'd been seeing was "one of the best" in my immediate area.

So needless to say, I always encourage people with seizures to see an epileptologist as well.
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Old 08-09-2014, 08:45 AM
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Update as of June, 2014. I'm disappointed in the epileptologist now as well. I won't go into all the details here, but what finally has gotten me seizure-free for over 2 months has very little to do with any of her recommendations. The two things she did that were very helpful were to get a Lamictal level drawn for me, which my other neurologist had never done, and get me a psychosocial evaluation, which no one else had done, either. I disagreed with some of her suggestions, told her my reasoning, and she agreed with me. Pretty much all changes I made were based on the results of the above tests, my own research, a new way of tracking my seizures, and discussions with my pharmacist. I told her afterwords about what I was planning to do and she agreed with all of it and wrote new prescriptions for me to reflect what I had done.
She had told me when I first saw her that it seemed I had been my own epileptologist for years, and I guess I still am.
As a disclaimer I am telling you my own experiences and not encouraging anyone else to do the same. I also want to emphasize that all of my choices, and the reasoning behind them, were approved by the epileptologist after the fact so she is aware of what I am doing.
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Old 08-25-2014, 09:50 AM
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Originally Posted by arnie View Post:
Sorry to mangle Hamlet, but I don't think Ophelia would mind, and she would probably rather see an epileptologist than go to a nunnery!

Note: This turned into kind of a long post, and if you don't want to read it all, the main message is to switch to an epileptologist as soon as possible if you have any way to do so.)

But seriously, I will probably be on a soapbox about this for a while. I have already talked about this in a couple of other posts, but I think the subject deserves a thread of its own.
As many of you know, I have had a diagnosis of epilepsy and been on meds for over 30 years, and I'm fairly knowledgeable about many aspects of this condition. I've only had 2 neurologists in that time and have learned a lot of what I know through my own research. In retrospect, I probably felt I needed to do that research because I wasn't getting enough info from my neuros. My former neurologist just retired and I had my first visit with an epileptologist on the 8th of this month. As a result of that experience, I encourage every single person on this board is to change from seeing a neurologist to seeing an epileptologist as soon as you can, if there is any way possible to do so. For me, seeing one was like a whole new world had opened up around my epilepsy. My wife was with me and were both absolutely amazed at the obvious high level of knowledge this woman had compared to the neurologists I have seen. When she was asking about my history and what my previous docs had told me, what tests they had run, and a number of other things, it was easy to see that she was very dismayed about the level of care I had been getting. A corollary in my own life, as a professional bicycle mechanic and dealer with decades of experience, is when someone brings in a bike that has been worked on by an inexperienced or not-too-knowledgeable mechanic and I immediately see a half dozen glaring problems that had been ignored or unrecognized. A specialist in any field sees those things in a totally different way than others do.
One example: I had an MRI last November, and my neurologist told me that there were some definite abnormalities in various areas, but that overall those were not too far outside of variations you would expect to see in anyone. When this new doc looked at the same MRI she saw a LOT of things that were very wrong. I don't remember all of it, of course, and I hope to get what she said in writing, but she was talking about bright spots here and there, small voids that indicated tissue damage, areas where fluid has probably accumulated, and lots of things indicating why my memory is bad, why I have that face-blindness issue, and so on. She said that both the initial people who interpret the results, as well as the neuros, simply don't see things that epileptologists do. I believe her 100%. Also, I told her that I had been the one who asked my neurologist about getting a VNS, and that I have been the one to suggest various changes in the VNS parameters to deal with some of the side-effects. There was also a setting on my VNS which was at odds with one of the norms. She mentioned it and I told her that I had asked my neurologist about it and suggested he change it, and he basically said he didn't think he would. She said it has to be changed and she did it. My neurologist has dealt with a handful of VNS patients over the years, and she has probably dealt with hundreds and has had specialized training in it.
I know that there are really great neuros who are probably better than not-so-great epileptologists, but still, I think that overall you are MUCH better off seeing someone who actually specializes in this complex and confusing and highly technical disorder.
Well, I hadn't intended to write nearly this much, and I have work to get going on, but think very seriously about this and try to switch if you can. (My daughter, who has epilepsy too, is working on finding an epileptologist now.)
Have yourselves a great day!

Cheers! Onward!
Well said, Arnie. Glad you found a great Epileptologist.
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Old 08-25-2014, 10:40 AM
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Hi "Bent". Make sure you read my post just above yours. The epileptologist turned out to be no better than the neurologists I have seen. I've been seizure-free for just about 3 months now, which is the longest I have gone in over 30 yearsm and it had nothing to do with her. Well, almost nothing. She did draw a lamictal level to see what that was, which is something that no one else had ever done, but I was the one who actually used that information to make the necessary med changes that seem to have finally gotten my seizures under control!
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