Neurofeedback for people without auras

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
25
Reaction score
0
Points
0
Sorry, I might have posted this idea in the wrong place.
I'm wondering whether my son's neuro was correct when he said neurofeedback is helpful only to people who have auras before a seizure.

I am hoping he is wrong since my son's tonic clonic seizures are nocturnal; when he awakens in the morning, he knows he has had a seizure.
If neurofeedback might help him, wouldn't that be so wonderful.
 
Neurofeedback helped my wife and she did not have auras. I wonder if your neurologist was confusing the VNS (where having auras gives patients the opportunity to swipe a magnet) and neurofeedback (which trains the brain to avoid epileptiform activity on an ongoing basis).
 
Very interesting and helpful. Thank, you Bernard. Gosh, I would hate to think a neurologist would make that error, but it certainly seems possible. We were told he is a creative thinker, but I find him utterly close-minded.
Thank you again.
This website is wonderful, in large part, it would seem, because of you.
 
Thanks, Bernard.

Abilene, my seizures are just like your son's, nocturnal. I've been wanting to try neurofeedback but for me the barrier is needing to travel to Honolulu if I wanted it done.

Something that helps me a lot is my dog (in the pic with me). He sleeps by my side and can often sense when a seizure is going to happen before I can. I find if, with the dog's help, I can get myself all the way awake, I can often make it stop before it goes all the way TC.
 
What a wonderful help your dog must be. You are lucky to have him.
If my son goes to neurofeedback, I will keep you posted on how it affects his seizures.
What a shame it's so hard to find someone who does it.
 
I attended the "Andrews-Reiter" clinic in CA. I would not recommend it personally, but they do help some people, and I had a little success. There is more to the program, some of which I wasn't comfortable with, but the basic idea is that certain kinds of brain states prevent seizures (or other states cause them). By using feedback you are training your brain to relax and become more organized. Basically you use relaxation techniques to focus or center yourself. I imagine any restful activity which requires a lot of focus would help. Neurofeedback can't hurt to try.
 
Hmm. But I wonder if that would be applicable to nocturnal seizures. I wonder if one would be able to make use of brain training done while awake during sleep.
 
Neurofeedback helped my wife and she did not have auras. I wonder if your neurologist was confusing the VNS (where having auras gives patients the opportunity to swipe a magnet) and neurofeedback (which trains the brain to avoid epileptiform activity on an ongoing basis).

I have a VNS, if that was what he was referring to, and the only way that I will know to use it is if I feel a simple partial starting. I don't always have simple partials, I'll just go right into a complex partial or a tonic clonic. The only way that the VNS can be used then is if there is someone with me and that I'm having the seizure then they can use the magnet on me. Using the magnet it will bring me out of the seizure in a shorter time.

The VNS in general, using the magnet or not, has helped me a lot. I'm not having as many seizures and they aren't that bad and don't last as long.
 
Hmm. But I wonder if that would be applicable to nocturnal seizures. I wonder if one would be able to make use of brain training done while awake during sleep.
I think neurofeedback could potentially help even with nocturnal seizures, since the aim is to repeat the brain training to the extent that the desired response becomes automatic (even in sleep). Like clearing a nice new path in the forest so it becomes the default route to take rather then the messy set of detours it may have learned after repeated seizures.

Neurofeedback is roughly analogous to doing core exercises so that your back is less likely to give out. Or wearing one of those devices that reminds you to stand up straight when you start to slump, with the idea that eventually you adopt better posture without any prompting or conscious effort.
 
Back
Top Bottom