Cognitive Seizure Control with Biofeedback?

[Afriend]

Hello All,

A couple of months ago, my good friend D was almost convinced to get brain surgery and have sections of her dominant Temporal Lobe cut out. They didn't have good evidence for such surgery, but they were going to do it anyway. With the help of several people here, plus my own online research, D decided against it. I think she made a wise choice. Back then I remember seeing something somewhere about a type of therapy using the biofeedback machine, where they teach you to pull out of more seizures than most people learn to do on their own. D has been telling me for 30 years that sometimes she can pull out of a seizure. But how does she do this? She really doesn't know. I'm pretty sure I saw something about this with a google search. I don't remember what it's called. I think the word Cognitive was in it. I know it was Cognitive and it used the Biofeedback machine. I see Biofeedback is also called Neurofeedback. D wants to go for this therapy but I don't remember what it's called. Does anyone know? She'll be seeing her counselor on Tuesday. But she won't see her Neurologist until Dec 1. I hope I can get the name of this by then.

Can someone help?

 

[SlimBlue]

Hi again, I'm glad she didn't go straight for the surgery after all.

Check out the EEG Neurofeedback thread in The Library sub-forum- it contains a lot of useful info if she's considering it.

 

[Afriend]

Yeah, she wants to try it, if we have it around here. She'll try anything that doesn't involve radical surgery or more drugs. The surgery they were going to do on her was based on a Gliosis on 1 MRI. I read that almost every adult over 60 has at least 1 gliosis. And these things seem more related to Alzheimer's disease than to seizures. I know they may also be related to seizures, but it's hardly a great reason to get most of her temporal lobe removed. Thanks SlimBlue

 

[kurt.othmer]

Hi Afriend,

Regarding the names, Biofeedback refers to the entire field of monitoring anything in the body and showing it back to you. Neurofeedback or also EEG Biofeedback refers to the specific area of the field where the sensors go on the scalp. Yes, I wish more people would try the non-invasive approaches like the work we do with neurofeedback first before going under the knife. The invasive approaches are still available later.

 

[Afriend]

Thanks Kurt,

D will try it if it's available. It should be. We live near NYC. Her Doc is head neurologist of a large University hospital.

I'm losing my Internet service today or tomorrow. All D has is a tablet, and she barely knows how to use. I told her to come here, but I doubt she can. I even gave her a link to this page. (I'm not sure D figured out what a link is yet) I had a hard time learning to use the Internet too. But I was highly motivated, D is not.

I think her poor memory is affecting her again. She said she's reconsidering the knife. I know D 45 years. She probably has forgotten all the reasons she decided against it.

Thank you everyone for all the help.

 

[kurt.othmer]

Afriend, there are some wonderful links for more information on our website. I'd like to post links but this site is preventing me. If you click our EEG info website on the left that is on my profile, you can access our research page where you can see the seizure research. One really compelling article from a Ph.D. psychology professor was just published on our blog today. That would be a wonderful start for your friend. There is also a book about my brother and his story with Epilepsy on Amazon. The book is called Brian's Legacy. I hope that helps.

 

[Bernard]

Hi Afriend, what you described in the OP sounds a lot like Neurobehavioral / Cognitive Behavioral Therapy (CBT).

The Andrews-Reiter clinic used both CBT and EEG Neurofeedback as part of their solution. EEG neurofeedback is different from CBT. Neurofeedback retrains the brain to work more optimally and minimize epileptic activity (like intense training that replaces bad habits with good habits).

 

[Afriend]

Thank You

Thank you to both of you. I called D and gave her this latest info. Her seizures are 1 of the kinds listed as CBT being effective for. The problem may be that they said most insurance won't pay for CBT.

I think her best hope is to try and control the triggers. Unfortunately, stress is her biggest trigger and it's the hardest to control. Especially when it comes from certain people she needs for car rides. Her Doc wants her to try a different med, and I encouraged her to do so because all her life she drank usually at least once a week. Then there were binges. I'm convinced alcohol effects most meds. What do you folks think about alcohol and anticonvulsant drugs, would it stop them from working properly or not?

In addition, since she now has a top neurologist who specializes in helping women with uncontrolled seizures, and since the Doc likes D, I urged her to ask for an anti anxiety med. I know Clonazepam is approved for epilepsy, but I like it adds to daytime drowsiness. Do says she's already too fatigued. So my suggestion was for her to tell her Doc I suggested this, so she doesn't accuse D of drug seeking behavior. Honestly, other then beer or wine, D has always hated any other drug. My suggestion was Ativan, aka Lorazepam, in .5 mg tabs taken PRN. D is against this. So I told her when she has to go do laundry, a high stress trigger, to take 1/2 of the .5 mg tab 30 mins before she leaves. I use meds like that too. In 14 years I never became hooked because I use them the way I'm suggesting to D. When she has low stress and proper sleep, usually all she gets is 2 - 4 seizures a month and 5 or 6 auras. I just don't think that's a reason to cut out most of her dominant Temporal Lobe.

On Dec 1st D sees her neurologist. I hope I still have Internet service by then.