[Info] Integrated Seizure Approach

[lindsayschu2]

I found this to be a really informative article on alternative strategies for controlling seizures (especially the behavioral section). No idea if it's been posted. I've been working on the behavioral ones on my own before I found this article and the strategies seem to be helping. http://www.andrewsreiter.com/integrating.html

 

[arnie]

Thanks for the article Lindsay. I always like to rad things about epilepsy and what research has been done. For me, the behavior modification and conditioning stuff really wouldn't seem to be practical since they seem to rely on the person having an aura, thus giving them at least a brief period of time in which to somehow intervene. I have no auras to my partials and 4 out of five of the tonic clonics I have had happened in my sleep. The one I had when I was awake came on with no warning. There is also the idea (which I imagine is true in many cases) that stress brings on a seizure. Again, for me, stress or lack of it has nothing to do with it. I recently had one when I was totally relaxed in the middle of a massage. Anyhow, that's not to say that there isn't something to these methods for some people, but I think it just further reinforces the fact that epilepsy has so many unknowns and is so variable.

 

[lindsayschu2]

Agreed yes, it relies on an aura. I have series of simple partials that go on for hours, so it could potentially help me interrupt that cycle. I saw a couple of things that had an impact--one was a study that showed that over 20% of people have an increase in seizures during a med change--but that 20% have an increase with a placebo as well. Another study that showed that Behavioral methods (including neurofeedback) are highly effective at reducing seizure frequency. For me, that added up to: we can have some control over seizures, whether they are EEG verified or not. That has had a huge impact for me in trying to use different methods on top of meds to try to reduce seizure frequency. Certainly not for everyone but if it helps anyone, then it's valuable.

 

[arnie]

I agree that anything that works, works. I'm always skeptical of "treatments" that have only anecdotal evidence and/or only evidence from one or two sources, or which make extravagant claims without a fairly large patient sample to back up those claims. If some treatment is found to work consistently at least for a certain percentage of the population those results should be replicable by other researchers. There is a lot of snake oil out there for every condition known to man, epilepsy included.

 

[lindsayschu2]

Agreed Arnie--I will say that the behavioral approaches include neurofeedback. Neurofeedback uses some type of visual aid to show you that what you are doing is effective at controlling your abnormal brain waves. Some of the behavioral approaches focus more on developing tools or methods to interrupt the waves in the first place, but they are all included under the umbrella of 'behavioral approaches,' and for many there is far more than just anecdoctal evidence. I believe there have been a number of broader-scale, repeated studies that have shown that neurofeedback has been successful, and if that is true, then you can conclude that it is possible to exert some kind of deliberate control on true epileptic seizures (not just psychogenic seizures). From there, there is a green field to determine the mechanism of that control. All I'm saying is: I personally believe the data is there to believe that behavioral approaches are effective, and while I am in no way going to throw my meds away, whatever I can layer on to be more effective in seizure control, I'm game, but again, I'm not saying it's for everyone.

 

[Nakamova]

Hi lindsay --

The Andrews-Reiter folks have written a helpful book about epilepsy that's been discussed here before:
http://www.coping-with-epilepsy.com/forums/f40/epilepsy-new-approach-7189/
http://books.google.com/books/about/Epilepsy.html?id=MV308qWi-ksC

I think their approach is very interesting, though not everything they discuss can help everyone with epilepsy. I do wish there were large-scaled controlled tests of neurofeedback and similar approaches to give people a better sense of their efficacy. The anecdotal reports are so tantalizing...

 

[lindsayschu2]

Thanks--I bought it!

 

[lindsayschu2]

And sorry if I've seemed obstinant in this thread. Since I've started to see the word "refractory" next to my name in my patient summaries, I'm getting more determined. That's all.

 

[Dignan]

I do wish there were large-scaled controlled tests of neurofeedback and similar approaches to give people a better sense of their efficacy. The anecdotal reports are so tantalizing...

Nak, sometimes I want to go on sites like Kickstarter and try to raise money for the large scale research trials you referenced. Feels like if we don't do it no one will...

 

[Nakamova]

I think the U.S. Military is studying the use of neurofeedback to treat PTSD, so maybe that will yield some "collateral benefits" in other areas.

 

[stilldancing_98]

We are getting a dog. And lots of therapy for my son. I'm stoked.

 

[Matthew74]

I did the Andrews-Reiter program in Santa Rosa. It does work for certain people, but it's hit or miss. As I experienced it the program was not nearly as organized as it appears. Dr. Reiter is basically retired, although he was seeing a few patients in 2009. I did not see him as part of the program. I spent about a week with Dr. Andrews. We spent one afternoon on deep breathing/guided visualization, with maybe an hour on biofeedback. From my experience, from what I have gotten on the forums, and a tiny bit of email correspondence with someone for whom it worked, the biggest determinant of success seems to be how well you get on with Dr. Andrews (PhD). She is very sincere and passionate, but it didn't work out for me. For me the deep breathing definitely helped, but I gave it up because it got to be stressful to do everyday. I think they have got something good there, but it needs to be developed.

 

[lindsayschu2]

I read the book, and the deep breathing helps when I start a series, as long as my eyes are closed. When I open them and engage in life they start again. So it has helped . .. as long as I can sit there all day with my eyes closed ;-) If nothing else works I'm going to try neurofeedback. That seem to have promise, speaking for myself here.