Timur says hello
- Thread starter Timur
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Hi Timur,
Welcome to CWE. Good luck with the Neurofeedback, I have never tried it but there are other members who have so they may share their stories.
This thread might be of interest to you http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/
Welcome to CWE. Good luck with the Neurofeedback, I have never tried it but there are other members who have so they may share their stories.
This thread might be of interest to you http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/
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Hi timur, welcome!
It's great to hear you're starting NFB. I'm very interested in how it goes for you -- I'd like to try it some day, once I save up my pennies. What kinds of seizures do you have, and what led you to consider NFB?
Best,
Nakamova
It's great to hear you're starting NFB. I'm very interested in how it goes for you -- I'd like to try it some day, once I save up my pennies. What kinds of seizures do you have, and what led you to consider NFB?
Best,
Nakamova
Yes had first QEEG. i start Monday I have primary generalized epilepsy
and had real good control with the Depakote/Lamictal combo.. Wanted to do
Lamictal alone.. Went well for awhile, got depressed, and I've had
some stress.. My dosage wasn't even that much.. but I'm hopeful they've
seen good things happen.. The lady who is my trainer, worked with Joel Lubar.
who also referred me. I'm hopeful Any words of wisdom? T.
Primary generalized seizures.. I really would like to improve anything, and
I'm hopeful this may knock me into remission. I've had decent control with dep/lamictal
combo. Like 8 year stretch. Tried to come off Depakote with the consent of my Neurologist
of course. Things just have not been ideal. Ive had some seizures, and really really hate depakote. even worse looking at new drugs. If this works maybe i can get by and eventually reduce the lam or best would be able to stop. Its tough cause if I get depressed, I end up drinking sometimes, and well I want to see if I can turn my life...ya know....I'm 43 and now is the time to do this.
I'm hopeful this may knock me into remission. I've had decent control with dep/lamictal
combo. Like 8 year stretch. Tried to come off Depakote with the consent of my Neurologist
of course. Things just have not been ideal. Ive had some seizures, and really really hate depakote. even worse looking at new drugs. If this works maybe i can get by and eventually reduce the lam or best would be able to stop. Its tough cause if I get depressed, I end up drinking sometimes, and well I want to see if I can turn my life...ya know....I'm 43 and now is the time to do this.
Hey Timur,
Worked with Joel Lubar!! Lucky you!!!!
My son recently had 4th QEEG, heading in soon to review, they were surprised at the shift they are seeing (can’t wait to go) but I need to see and study the results, I will come back to you.....
He busy student, was going to NFB 1x per week and cut it down to 1x every 2 weeks, but now he will go back to 1x per week which is way better, the more sessions the better! it takes long time to alter/change the brain i.e. lots of training sessions required…do not expect quick fix but its 100% worth the investment of your time and benefits are unique to the individual because each brain is different and you may find that you wont want that drink after some NFB sessions
I’ll bet your QEEG tells quite a tale, yes? I know my Sons does. It really shows the areas of his brain in bright red that are not the norm….Causing over excitement, anxiousness and hyper alert mode and to be too alert is not enjoyable peaceful way to live... we are seeing shifts in behavior, after each session he is well relaxed for some time…his hyper alertness has really calmed down…he used to tap his fingers nonstop (drive me insane), that’s completely gone. He says its helps keep his brain sharper – whilst the meds are creating the opposite effect (these E meds have their side effects, especially on behavior, I feel I can say that because I am witness)
What where your side effects on Depakote?
My Son also generalized and on Depakote. He too had long run of seizure freedom then bam he had a 1st day time T/C…..his are mainly nocturnal T/C. Stress is his No1 trigger for his seizures...Upped the med about as high as he prepared to go, 1500mg (he is 6ft and 80kilos) and he hates it and actually not helping as still had breakthroughs. doc said if he keeps having breakthroughs he wants to add another one, no thanks says my Son, and he is adamant there, he’d rather have the odd seizure than be drugged up…
On top of NFB, and regular talk therapy (also a God send) we also big researching and trying out natural alternatives. Recently started using magnesium chloride oil directly applied to skin, if he feeling edgy with auras he takes a magnesium chloride foot bath, calms the nerves right down, twice in the past month I was sure nocturnal T/C seizure was imminent, both times he took magnesium chloride foot bath before sleeping, no T/C breakthrough. maybe we onto something good, plus he just passed milestone of seizure breakthrough freedom. It’s worth to get vitamin/mineral analysis done if u use or want to use alternatives, because you can over supplement, my Son has hair analysis booked for April with a naturopath to be sure no overloading and to see vitamin/mineral shortage and/or toxicities..
Worked with Joel Lubar!! Lucky you!!!!
My son recently had 4th QEEG, heading in soon to review, they were surprised at the shift they are seeing (can’t wait to go) but I need to see and study the results, I will come back to you.....
He busy student, was going to NFB 1x per week and cut it down to 1x every 2 weeks, but now he will go back to 1x per week which is way better, the more sessions the better! it takes long time to alter/change the brain i.e. lots of training sessions required…do not expect quick fix but its 100% worth the investment of your time and benefits are unique to the individual because each brain is different and you may find that you wont want that drink after some NFB sessions
I’ll bet your QEEG tells quite a tale, yes? I know my Sons does. It really shows the areas of his brain in bright red that are not the norm….Causing over excitement, anxiousness and hyper alert mode and to be too alert is not enjoyable peaceful way to live... we are seeing shifts in behavior, after each session he is well relaxed for some time…his hyper alertness has really calmed down…he used to tap his fingers nonstop (drive me insane), that’s completely gone. He says its helps keep his brain sharper – whilst the meds are creating the opposite effect (these E meds have their side effects, especially on behavior, I feel I can say that because I am witness)
What where your side effects on Depakote?
My Son also generalized and on Depakote. He too had long run of seizure freedom then bam he had a 1st day time T/C…..his are mainly nocturnal T/C. Stress is his No1 trigger for his seizures...Upped the med about as high as he prepared to go, 1500mg (he is 6ft and 80kilos) and he hates it and actually not helping as still had breakthroughs. doc said if he keeps having breakthroughs he wants to add another one, no thanks says my Son, and he is adamant there, he’d rather have the odd seizure than be drugged up…
On top of NFB, and regular talk therapy (also a God send) we also big researching and trying out natural alternatives. Recently started using magnesium chloride oil directly applied to skin, if he feeling edgy with auras he takes a magnesium chloride foot bath, calms the nerves right down, twice in the past month I was sure nocturnal T/C seizure was imminent, both times he took magnesium chloride foot bath before sleeping, no T/C breakthrough. maybe we onto something good
, plus he just passed milestone of seizure breakthrough freedom. It’s worth to get vitamin/mineral analysis done if u use or want to use alternatives, because you can over supplement, my Son has hair analysis booked for April with a naturopath to be sure no overloading and to see vitamin/mineral shortage and/or toxicities..
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Thanks! I'm preparing to have 100 sessions put aside for committing to the cause.
Although maybe I won't need that many sessions. I've seen 80 sessions recommended
by Dr. Albrite... and the typical quote seems to be 20-40(50).. Depakote works but it
just "dulls" me and my confidence, judgement is not quite what I want it to be.
The Lamictal alone is ok, in part that my reaction timing and thinking becomes better. My depression that went hand in hand with the depakote is a little better now that I got off depakote... Augh! hmmm what can i say? I'm very anxious and a little nervous. Monday is a huge day for me..
Although maybe I won't need that many sessions. I've seen 80 sessions recommended
by Dr. Albrite... and the typical quote seems to be 20-40(50).. Depakote works but it
just "dulls" me and my confidence, judgement is not quite what I want it to be.
The Lamictal alone is ok, in part that my reaction timing and thinking becomes better. My depression that went hand in hand with the depakote is a little better now that I got off depakote... Augh! hmmm what can i say? I'm very anxious and a little nervous. Monday is a huge day for me..
Yeah – I think it’s real exciting for you. It’s absolutely not evasive, my Son enjoys his sessions...you may well be tired after your sessions but that’s only because your braining is doing the exercise and changing, just like your muscles would after a workout. I expect my Son will do 100/150 sessions. And if necessary keep going….
my Son says same, valpro dulls him, he cannot explain it better than that, he has no (very short maybe after seizure) depression but he is not a long a term valpro user (long enough though) and we in our family move quickly to support…it helps, I feel greatly for those who need to walk this E road on their own, saddens me greatly.
Don’t be anxious or nervous - embrace this. Go into this with a spring in your step and a song in your heart and a positive mind, because as you said, now is the time
my Son says same, valpro dulls him, he cannot explain it better than that, he has no (very short maybe after seizure) depression but he is not a long a term valpro user (long enough though) and we in our family move quickly to support…it helps, I feel greatly for those who need to walk this E road on their own, saddens me greatly.
Don’t be anxious or nervous - embrace this. Go into this with a spring in your step and a song in your heart and a positive mind, because as you said, now is the time
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Like you, I have generalized seizures, and I'm in my 40s (for one more year). My seizures are controlled on Lamictal (4 years +), but I don't like the side effects (particularly to my vision). My neuro said I could try tapering this year, but based on my history I'm not confident that I could still remain seizure-free without having some other strategy in place (like NFB).
Will you be staying on Lamictal the whole time while during the 100 sessions, or is there a chance you might taper a bit? Did your QEEG show abnormal brainwaves? Will the protocol be suppressing "bad" brainwaves (like SCP) or strengthening "good" ones (like SMR)? The only neurofeedback practitioner near me doesn't have any epilepsy training, but he said he would work with a practitioner long-distance who did, so I'm curious about the approach you will be using. Also, is yours covered by insurance? if not, do you mind me asking how much it will cost?
Will you be staying on Lamictal the whole time while during the 100 sessions, or is there a chance you might taper a bit? Did your QEEG show abnormal brainwaves? Will the protocol be suppressing "bad" brainwaves (like SCP) or strengthening "good" ones (like SMR)? The only neurofeedback practitioner near me doesn't have any epilepsy training, but he said he would work with a practitioner long-distance who did, so I'm curious about the approach you will be using. Also, is yours covered by insurance? if not, do you mind me asking how much it will cost?
as promised
we seeing decrease in beta activity....what we want to see...
he had med increase so we not sure if that what caused the decrease...
today seen neuro and my Son decreased his med, too many side effects, so we lock with the decrease for 10 weeks to let Neurofeedback show its results (neuro wanted to add another med but Son said NO,
plus we saw naturopath today who doing FULL analysis and will come with plan of action Saturday already, yeah!)
in 10 weeks they will measure the beta again via QEEG and if it’s going down still, we on right track... neuro said never heard of bio feedback, yeah, yeah that’s his profession (we get it and he a real, real nice guy)…….but med on med on med, I do understand all he wants is full seizure control, but med on med on med till what…….breaking point….no thanks….we will explore EVERY option before taking that plan of action..
but that done mean things are easy......going...
how are your sessions panning out?
we seeing decrease in beta activity....what we want to see...
he had med increase so we not sure if that what caused the decrease...
today seen neuro and my Son decreased his med, too many side effects, so we lock with the decrease for 10 weeks to let Neurofeedback show its results (neuro wanted to add another med but Son said NO,
plus we saw naturopath today who doing FULL analysis and will come with plan of action Saturday already, yeah!)
in 10 weeks they will measure the beta again via QEEG and if it’s going down still, we on right track... neuro said never heard of bio feedback, yeah, yeah that’s his profession (we get it and he a real, real nice guy)…….but med on med on med, I do understand all he wants is full seizure control, but med on med on med till what…….breaking point….no thanks….we will explore EVERY option before taking that plan of action..
but that done mean things are easy......going...
how are your sessions panning out?