[Recommended] Epilepsy a New Approach

[maryl]

Easy to understand. Covers many aspects of epilepsy and focuses on daily exercises to control epilepsy and reduce medication.

 

[Bernard]

Thanks Maryl. I highly recommend this book as well even though I haven't read through it all myself (I've skimmed though it - my wife has read it cover to cover).

You can find inexpensive copies of it at amazon.com:

Amazon product

 

[RobinN]

It was a security blanket for me when I was not getting anywhere in with conventional doctors. It made me realize that this disorder was more complicated, and yet offered more HOPE with alternatives. Basically I realized it wasn't a DEAD END diagnosis.

I recommend it as well.

 

[BillK]

I just skimmed around in it the first month and then made a commitment to go straight through it, reading a little each day and answering the questions. Fell off that in a few days, but I plan to get back on and saying it here helps!

Anyway, I'm finding it quite useful so far, if only for the underlying feeling of I can actually do something about this rather than passively taking whatever medicines they prescribe. It also made me much more knowledgeable in my recent neurologist visit. But I think it will be much more helpful than that.

Joel Reiter, M.D. writes the more scientific chapters in a clear format. The main author, Adrienne Richard, is a good writer and not only explores helpful psychological viewpoints for viewing one's epilepsy, but provides a variety of tools to generally prevent seizures, intervene during the aura, and cut short ongoing seizures. Interspersed are insights about cultural perceptions of epilepsy throughout time and treatment of writers, artists and religious figures who probably had epilepsy.

Since the revised paperback edition came out in 1995, the chapter on medication is a little out of date and there have been other new developments such as VNA. Some of the nutritional information probably has more research and there have undoubtedly been other developments. But it is still well written and offers good ideas.

They apparently offer the most current information at their Andrews/Reiter Epilepsy Research Program center in Santa Rosa. (They won't let me post links on this site, but a web search on that will bring it up) It is a non-profit organization which always makes me feel better!

 

[Nakamova]

Here's their website: http://www.andrewsreiter.com/

 

[Wobblez]

Sounds awesome. I have so many textbooks and articles to read for uni but this is definitely going on my summer break reading list!

 

[epileric]

I was disappointed to see that co-author Adrienne Richard- also wrote Into the Road, The Accomplice, Wings, all fiction. I found it very odd for a fiction writer to be co-writing a medical book.

I was initially impressed that the other author was a neurologist with lots of experience but throughout the whole book he explains thing that “other doctors might be skeptical”, things that “might” work and things that “some people believe work” And then describes those things. He never gives good (biological or medical) reasons why something might work other than claiming it has been used by others (that's not good evidence). He suggests doses of supplements that go beyond the RDI and gives no reason how he concluded that those doses are the best when I see them to be dangerous. The whole book seems to be based on anecdotal evidence which is known to be the least dependable amongst any legitimate medical doctor so I truly have to question his capacity as a neurologist.

His approach consists of 4 aspects: ones knowledge & treatment of epilepsy, ones mental attitude, ones preventative program, and ones ability to use intervention methods. Just from the first 2 aspects I can’t help but get the impression that this approach involves a lot of confirmation bias so that when they work you remember and when it doesn’t work we forget about it. I also take issue with those 2 aspects because when people present things in such a way that it blames the victim if it doesn’t work. I’ve seen many books that claim to be positive but set people up to be blamed for their lack of “positive thinking” or “positive attitude”. I’m not saying I don’t believe in taking responsibility but to think that I have seizures that aren’t cured or controlled because of my attitude or understanding blames me and I’ve seen it done too often with others as well.

As well he tends to use treatments that are not only unlikely but impossible to work and have been proven to not work like homeopathy and various supplements where even he says the evidence is anecdotal. This makes me feel as though I’d wasted my money on a book of unproven facts. The only things I found accurate were things I considered common sense like drugs, alcohol, & tobacco are poisons & relaxation will help.

 

[Bernard]

I was disappointed to see that co-author Adrienne Richard- also wrote Into the Road, The Accomplice, Wings, all fiction. I found it very odd for a fiction writer to be co-writing a medical book.

As someone who champions a "just the facts" approach, I find your ad hominem posturing here curious. The fact that someone may enjoy writing fiction does not invalidate her personal or clinical experience, which you completely ignored.

... He suggests doses of supplements that go beyond the RDI and gives no reason how he concluded that those doses are the best when I see them to be dangerous. ...

The RDI is not a rigorously developed, individually tailored specification with hard limits. It's a very general average for "average people". It does not consider cases where people might not be metabolizing nutrients normally (or suffering nutrient depletion as a side effect of medications or worse).

I covered this ground before regarding vitamin toxicity. Toxicity concerns are a non-issue IMO.

... The whole book seems to be based on anecdotal evidence ...

The book outlines the method (and options) used at a real clinic treating real patients with a >80% success rate. There isn't a single AED that can match that.

 

[epileric]

As someone who champions a "just the facts" approach, I find your ad hominem posturing here curious. The fact that someone may enjoy writing fiction does not invalidate her personal or clinical experience, which you completely ignored.

I don't like ad hominem attacks when discussing issues but when someone authors a book or presents themselves in media their background says lots about how qualified they are to talk on certain issues. My concern was not that she was a fiction writer but that I could find no reference to any training in medicine or health & that's exactly what this book was about (sorry if that wasn't clear). Because their training/experience is relevant to the topic of the book, it is not an ad hominem attack.

The RDI is not a rigorously developed, individually tailored specification with hard limits. It's a very general average for "average people". It does not consider cases where people might not be metabolizing nutrients normally (or suffering nutrient depletion as a side effect of medications or worse). I covered this ground before regarding vitamin toxicity. Toxicity concerns are a non-issue IMO.

You may or may not be right, though the book itself gave no reason to justify those doses & that just made me wonder if the doctor pulled them out of his hat. They might be good dosages but why they are is never explained & that is what I need for confidence in them. Also, book was not made to be read in conjunction with CWE and like I said, if the author can only tell me what to do without telling me why I tend to have my doubts.

The book outlines the method (and options) used at a real clinic treating real patients with a >80% success rate. There isn't a single AED that can match that.

I do question that. They may have claimed a large success rate but they gave no details as to how they defined "success" how they measured it, whether it was the relative or absolute success rate, or how they arrived at that statistics. These are all ploys that both the pharmaceutical & supplement industries use & I feel we should always be careful of accepting stats that are too positive without knowing how they were arrived at.

 

[Bernard]

... My concern was not that she was a fiction writer but that I could find no reference to any training in medicine or health & that's exactly what this book was about (sorry if that wasn't clear). ...

Yet you failed to mention her experience with the clinic? Her bio/resume is posted on the clinic website:

http://www.andrewsreiter.com/bio d.j.andres.html

... I do question that. They may have claimed a large success rate but they gave no details as to how they defined "success" how they measured, whether it was the relative or absolute success rate, or how they arrived at that statistics. ...

Actually, they have provided such details in a published study and even Dr. Schachter spoke highly of their work.

 

[Cint]

Actually, they have provided such details in a published study and even Dr. Schachter spoke highly of their work.

I do have the book you are referring to Bernard, that was written by Dr. Schachter and Dr. Orrin Devinsky, both highly regarded in the world of epilepsy. They included neurofeedback as an alternative therapy for epilepsy, along with meditation, nutrition, herbal therapy, the Ketogenic diet, massage therapy, etc., stating that there are other therapies that may or may not work.

Donna Andrews, the partner with Dr. Reiter, suffered from acute encephalitis when she was 18 years old. Later, she ended up have CP seizures and one medication caused her to have Stevens Johnson Syndrome, so they developed their own neurofeedback system.

Here is what else Dr. Schachter said in his book about neurofeedback:

"This is one approach, albeit one that is broadly adaptable for many individuals. It worked extremely well for Donna Andrews and has worked well for many others; however, there are many forms of epilepsy , many environmental seizure precipitants, many stressors that are unconscious, and many ways to relax. Other approaches similar to this model, and also quite different approaches, exist that can help other individuals with epilepsy. For some patients, including stress--not relaxation-may help block seizures. As we move forward and embrace the Andrew-Reiter approach, we must remain wide open to others."

 

[epileric]

Yet you failed to mention her experience with the clinic? Her bio/resume is posted on the clinic website:

http://www.andrewsreiter.com/bio d.j.andres.html

Sorry, I missed that though I do see someone trained in psychology a bit closer to neurology I don't see a psychologist for my seizures.

 

[Bernard]

Apologies... I confused Adrienne Richard with Dr. Andrews. They aren't the same person.

Perhaps Dr. Reiter needed the help of a professional writer.