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  #1  
Unread September 16th, 2005, 10:04 PM
Lawrence Teft Lawrence Teft is offline
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Default Frustration With Psychological Community

I am very frustrated with the lack of response I have received in regards to my requests for more information from psychiatric/psychological professionals, professional groups and organizations. I have emailed or called them (sometimes twice) for more information on Nonepileptic Seizures, from which my wife suffers. There is little research being done into this type of seizures because it brings up the spector of sexual abuse of children (a leading cause of NES) and it has been reported that researchers often don't want to deal with this subject. It is important to note that NES are treated as a "psychological" problem and not through neurologists. But the psychological community seems to have little to say.

I have requested and received no replies from the following:

AMERICAN PSYCHIATRIC ASSOCIATION
AMERICAN PSYCHOLOGICAL ASSOCIATION
AMERICAN PSYCHOANALYTIC ASSOCIATION

Searches on their web sites shows how little (if anything) they have in the way of acknowledging these seizures and their horrible effects. Even when it comes to the current definition in DSM, Conversion Disorder With Seizures, there is little to nothing.

There is actually more reseach being done by those who study Epilepsy, notably the work of Orin Devinsky, Tim Betts, Curt LaFrance and others.

Why is it that those who should have extensive research and background in Nonepileptic Seizures seem to have so little. Is it the sexual abuse cause (in most cases) the problem? More needs to be done.

Lawrence
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  #2  
Unread September 25th, 2005, 02:34 AM
Da Friendly Puter Tech Da Friendly Puter Tech is offline
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Default Re: Frustration With Psychological Community

Well Lawrence,

I guess - if you want something done you have the choice between whining about what others are or are not doing, or actually starting to do something yourself.

Maybe you should sponsor the needed research, or work to find sponsors for the needed research, and then hire someone to do it for you.

Or, maybe you should get the needed degrees and do the research yourself.

Either way - whining about what others are not giving you will not make it happen.

Da Friendly Puter Tech
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  #3  
Unread October 1st, 2005, 08:09 PM
Lawrence Teft Lawrence Teft is offline
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Default Re: Frustration With Psychological Community

Well Puter Tech,

I guess I probably should do it all myself since you "students" who pursue degrees and get them simply do so to collect the big bucks and don't really give a shit about anyone but yourselves. Your logic is interesting. You people who "get the needed degrees", as you said, don't seem to want to actually do the work that should follow.

GFY

Lawrence
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  #4  
Unread October 3rd, 2005, 02:51 AM
Da Friendly Puter Tech Da Friendly Puter Tech is offline
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Default Re: Frustration With Psychological Community

Lawrence,

There are many important topics within the field of psych that need attention - and has not yet gotten enough attention. We each go where our interests and propensity takes us.

In the long term I will have a strong interest in the topic of cults. It deserves a lot of attention and in my opinion hasnt gotten enough attention. Its a topic that influences thousands of people every day.

Other folks within the field has other priorities, interests etc. The fact that someone does not put my special interest at the top of their priority does not make this person a money grubbing, unethical person. It simply means we have different interests.

You must realize that psych is a young field and the professionals have not yet had enough time to research everything in detail. Obviously your topic does not affect enough people so that someone has had the interest to pay enough attention to it. Eventually it will happen. You can wait for that - or you can quit whining and attacking, and do something about it yourself!

Da Friendly Puter Tech
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  #5  
Unread October 3rd, 2005, 12:56 PM
Lawrence Teft Lawrence Teft is offline
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Default Re: Frustration With Psychological Community

First of all, my wife has had seizures for 15 years. We were financially ruined with medical bills, I lost a job to care for her at home and her health has suffered a great deal. I'm tired of people ignoring the subject of sexual abuse and how it often causes NES. And I HAVE been doing something about it, for 15 years! I have been talking to neurologists, researchers and others who "supposedly" work in the field of treatment for psychological disorders yet don't seem to know about a subject that has been with us for 100+ years. You want to study cults? We have known about cults for thousands of years and have not addressed it. We need people like you to go for that research.

One thing though, you won't get very far with your insensitive attitude. If you really read my post you would understand that I am not "whining", but frustrated, and rightly so. I am hoping that people will learn that on the other end of all your "curiosities" there are real people suffering.

And by the way, NES affects more people than multiple sclerois. Does that warrant at least a little research?

Teft
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  #6  
Unread October 6th, 2005, 12:50 PM
jshatzkin jshatzkin is offline
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Default Re: Frustration With Psychological Community

I don't think the psychological community has been ignoring your requests, though it may feel like it when you are desperate for answers. There are many variables to what may be causing your wife's NES. True, sexual abuse or trauma can trigger it. But, there are many people who have been abused and do not develop NES or other trauma. Likewise, many people who have NES may not have been sexually abused. There may be a correlation, but that does not mean causation. Even the best medications for the most researched mental disorders are not 100% curative. Focusing energy on how your wife can function, vs. what causes it may be needed right now.

What you are describing sounds very much like a conversion disorder. There is no magic pill or therapy wand that will take it away. You and your wife must be invested in trying something new. Focusing on others to take care of the problem will not work. Therapists and psychologists don't have advice or answers. We help people in a PROCESS to find what helps them. Like I said above, so many variables are present that it is hard to distinguish a single causative factor. Shifting focus to what you and your wife can do, and what is in your power, may be very empowering and healing. You can be bitter and frustrated and be upset that others are not giving you the answer you want to hear. Or you can take charge of your own recovery and start exploring what may alleviate symptoms vs. what started them. Sometimes the cause(s) of a problem have nothing to do with the solution.
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Jennifer
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  #7  
Unread October 6th, 2005, 05:54 PM
Lawrence Teft Lawrence Teft is offline
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Default Re: Frustration With Psychological Community

Hi Jennifer,

Thanks for your reply. My wife and I have confirmed that her NES is truly from sexual abuse. We are well aware of all the other causes of NES and have excluded them. And we have identified it as Conversion Disorder with Seizures DSM-4. I don't know how you come to the conculsion that my wife and I are "focused on other to take care of the problem" as I never stated any such thing in my original post. My wife has been to psychotherapists and received poor care from several and excellent care from one. It was very helpful but my wife knows that self-work from now on is the bedrock of healing. She is doing extensive work with the trauma. Your comment that "Therapists and psychologists don't have advice or answers" is curious. They do indeed have advice on how to best deal with certain problems and they do indeed have answers to some basic psychological problems that their patients don't have. And your remark that "sometimes causes of a problem have nothing to do with the solution" is amazing. The "Cause" has everything to do with the solution. Ever heard of CBT, exposure therapy, etc? I'm not sure what your meaning is for such a statement is.

Again, nothing in my post indicates we're not taking charge of her recovery. We have always gotten better results when we have. My wife has had two therapists tell her she should be driving, even though she has seizures. My wife voluntarily gave up her license out of a strong sense of responsibility. She had one therapist who literally only let her talk for about 10 percent of the time during her sessions. One psychotherpist (her original one) almost never spoke and refussed to give her updates on her progress. But she collected over $2,000 dollars in fees for over a year while saying nothing. When my wife confronted her about this she was criticized openly.

What I am frustrated with is the lack of substantial research and acknowledgement of the issue of sexual abuse as a cause of NES. I spoke to Curt LaFrance recently, who is a leading researcher in the field of NES and he confirmed to me that sexual abuse, which he acknowledges is a major cause of NES, is NOT talked about enough in the med/psych communities and has written a wonderful article on this which apppears on www.mnepilepsy.com.

With respect, I have spoken to many of the top researchers and they all agree that not nearly enough is being done and also the the psych community is not doing enough. Psychotherpists like yourself need to understand that there is room for improvement always, and that acknowledgment of promblems created by the professionals in this field doesn't mean that they are not of imense value. My hero's are Scott Peck and John Bradshaw. But there is a problem that needs to be addressed. And it won't be addressed by denial or pointing fingers at patients who shouldn't have to be frustrated in the first place.

My post was meant to be constructive, not to attack. But I'm not going to pretend either.

Take care,

Lawrence
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  #8  
Unread October 12th, 2005, 01:20 PM
HealthyGirl HealthyGirl is offline
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Default Re: Frustration With Psychological Community

I agree with the last comment. FIguring out WHY the disorder developed rarely, if ever, causes the symptoms to go away. I have worked with the treatment of non-epileptic seizures for the past 12 years. We use a cognitive behavioral treatment approach very similar to what they use for panic disorder and pain mgmt. I would be happy to answer questions you have but I would suggest finding someone who has a very strong background in cognitive-behavioral therapy and then having them contact me or others who work in behavioral medicine or health psychology programs to find out how we apply this therapy to non-epileptic seizures. I, personally, work at the Mayo Clinic in Rochester, MN and we see patients like your wife everyday.
Kristi
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  #9  
Unread October 19th, 2005, 12:44 AM
Lawrence Teft Lawrence Teft is offline
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Default Re: Frustration With Psychological Community

Quote:
Originally Posted by HealthyGirl
I would be happy to answer questions you have but I would suggest finding someone who has a very strong background in cognitive-behavioral therapy and then having them contact me or others who work in behavioral medicine or health psychology programs to find out how we apply this therapy to non-epileptic seizures.Kristi
Hi Kristi,

I sent you a private message. I'm not sure if private messages work on this board. I have sent in the past and they don't seem to get through.

Please let me know if you got it and thanks much for your offer to answer questions.

Take care,

Lawrence
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  #10  
Unread October 31st, 2005, 01:04 PM
Karen Mettam BSc, RMN Karen Mettam BSc, RMN is offline
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Default Re: Frustration With Psychological Community

Hi Lawrence

I have only joined the forum today, and have found reading the entries most interesting. In particular yours. Unfortunately I am not particularly informed with regard to your wife's condition, but feel inclined to explore deeper the issues you have raised. Also, most evident was your frustration in your text, and you (and your wife) do appear to have been struggling to manage the NES, and in your quest to identify research in this area in relation to sexual abuse. Although i'm unable to offer much at this current time for you and your wife, I shall endeavour to explore this area too, consulting work colleagues (In Psychiatry), and Health Psychology (MSc) tutors etc via current studies.

wishing you both well, karen
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