Neurofeedback question

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Suman

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Hello,

I am considering neuro feedback for my son mainly to combat the side effects that the AEDs are causing him. Over time, the nature of his seizures have changed. At present, he gets a blank stare, the cry, and then the tonic clonic phase. I understand that the blank stare in the beginning is a sign of temporal lobe epilepsy. (Feel free to correct me Gurus)

I also read that NF needs careful monitoring especially for temporal lobe epilepsy (NF may trigger seizures in people with temporal lobe epilepsy).

For those of you that NF has worked, do share with me if you had temporal lobe epilepsy and in what way it helped you. For those of you who have tried NF and it hasn't worked, do share what did not work for you.

-Thanks,
Suman
 
My wife used NFB many years ago. At that time, she did SMR training/protocol. She was experiencing many different types of seizures, but the TCs were infrequent and she was mostly having a lot of absence seizures. It took many month, but eventually, she achieved the holy grail of complete seizure freedom. That lasted for ~4 years and it was awesome. She started having seizure activity again after delivering our first child.

The NFB did more than just help with the seizure control though. It improve overall mental clarity and cognitive function.

Best of luck for your son!
 
Thank you Bernard. Thanks also for the links, I'm on it.
 
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Hi, I also have TLE, but I have not tried neurofeedback, so I can't give you any first hand accounts there. But, your comment below got me curious.

I also read that NF needs careful monitoring especially for temporal lobe epilepsy (NF may trigger seizures in people with temporal lobe epilepsy).

I didn't realize NF could make seizures worse. Bernard or others, have you heard of this? If so, it based on poor or inexperienced practitioners?
 
No, I had not heard that before. None of the studies that I've seen on NFB indicated that any of the subjects had worse outcomes from NFB.
 
Dignan/Bernard,

I'd read a study that said it may take a while to adjust the NFB frequency/energy (?) for the client. Until the NFB practitioner finds the right balance, NFB may trigger seizures, especially for people with temporal lobe epilepsy.
I'm looking for the study. I'll post the link as soon as I find it.

-Suman
 
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