EEG Neurofeedback

[hadley.laura]

Thank you for that, I have finally worked out how to write something in the forum. I was not wanting to take medication again I was ONLY thinking about the Neurofeedback therapy and wondering if it is 100% at curing seisures without medication as well. I have had Complex Parcial Seizures now for 6 years after a bash to the head. I have only taken medication for a few years because of hairloss. I stopped 1 year ago and my hair is back to normal now. They want me to start on Lamictal, I have to get back to driving and a normal life.
Cheers Laura

[Bernard]

... I was not wanting to take medication again I was ONLY thinking about the Neurofeedback therapy and wondering if it is 100% at curing seisures without medication as well. ...

All by itself is not likely IMO. In conjunction with a good diet and sleep regimen, I'd say the chances are good. My wife managed 4 fantastic years med free and seizure free before trouble started again (after delivering a baby).

There are no guarantees with any treatment options.

[Mike]

I had just over 5 years of seizure freedom using nerofeedback and meds but very little medication before other problems. It was the best time! So cool!!

[hadley.laura]

Dear Bernard, thank you for your reply, I would love to contact these people but I am in Australia and don't seem to be finding much information here or specialists.

Thats why I have been researching what they are doing OS as I just read The Brain that Changes Itself.

Thanks again

Laura

[Mike]

Im not trying to but into this, it is comming to my E-mail so Im responding. I see some of the best epilepsy specialests in this country. I know that N.Y.U. has dropped its Nerofeedback program. Their focuse is the newer madications.

[hadley.laura]

Hi Mike

No I appreciate all the info I can get, please stay in touch. I was just sent a message from someone to contact a girl called CleptaK in Australia which I just did and will wait for a reply hopefully.
I am finding it hard, I have just started having a few treatments with an Osteopath in Brisbane OZ. Osteopaths apparently treat old injuries, anyway I am trying everything because it looks like I will have to start back onto medication.
My Epieptologist(yes it took me 6 yrs to find out there was such a specialist Neurologist. He has recomended Lamictal which he says I wont have hair loss with, but I have been told on this site that others have lost hair with Lamictal. It has just got nice and thick again after 1yr off drugs, if I loose hair again I will try Keppra next, I wont sit back and just watch it fall for 6 months again hoping it will stop.

Laura

[Mike]

It seems like the specialest are putting all their hope in the newer anticonvolsants. Dr. Luciano my Epileptologist from N.Y.U. just made a big change in my meds. Keppra was a very bad drug for me. It made me so angery. I insulted most of my friends. The worst part was that I didnt even realize it untill they took me off it. They pushed the Trileptal. That worked for me. Ill pray for you, I think thats the best thing I can do for you. Peace of CHRIST!

[hadley.laura]

Thank you Mike I may need your prayers, it looks like it could be Lamictal although I still ahve a few things to read about this therapy. Someone on this site has put me in touch with someone else in OZ who is trying this treatment, but she is taking meds as well.
Thanks again

[Mike]

Lamictal never worked for me,I tryed it in the earily 90s. Vimpat the new drug is more effective with fewer side effects. Peace of Christ!

[hadley.laura]

Hi Mike

I had been reading about Vimpat recently, and had read its used mainly as an add on with other medication, or someone told me, I cant remember.

I had actually asked this new neurologist I am seeeing about the newer drugs, he just said Lamictal worked beter with the monthly (same time nearly every month) Complex Parcial Seizures I am getting.

Thnaks for your feedback
Laura

[Mike]

I had complex partials every month for 25 years. nothing helped untill Trileptal and Keppra combination along with nerofeedback. I had over 5 years of seizure freedom untill predisone caused a seizure. Im told that the Vimpat is as effective with less side effects like anger.

[hadley.laura]

Hi Mike

Do you think Nft can work without medication, that is the only reason I wanted to try it, because of the hair loss from these other medications. How ofton do you have the Nft ? I have read that you need 10 to 20 or even 40 treatments, half hour, 3 days a week the first week or so, then hourly a few times a week.
It sounds like it could take months to try and see if the treatment will work. Although I would be able to know after a month I suppose since I get the seisures monthly now.
I was contacted by someone who bought the device to do Nft at home, its quite expensive. She still has to take medication as well though but said it helps.
I dont know any more I am so confused and frustrated, this has total control on my life.
They want me to start on Lamectal, I had a quick look and a side affect was Meningitis, I have to go back and read more about the side affects, the FDA wanted to take it off the market, I think? I will do some more research on the drugs first before I have to start back on them again.
Thanks again

Laura

[Bernard]

Do you think Nft can work without medication, ...

Can you use neurofeedback if you are not taking meds? Yes

Can neurofeedback help you achieve 100% seizure control without the needs for medication? Yes, it is possible, but not necessarily probable. Certainly, no one can guarantee such a thing. If you are only having seizures once a month or so, I would think there is a good chance neurofeedback might help you achieve 100% control (but that's my layman opinion).

... I have read that you need 10 to 20 or even 40 treatments, half hour, 3 days a week the first week or so, then hourly a few times a week.

The first time my wife tried neurofeedback, it took over 3 months of sessions 3x and later 2x a week before she started noticing any effects. After 5 months of sessions, she was 100% seizure free. That lasted for 4 years and I'm convinced would have lasted at least until menopause if we hadn't decided to start having kids. Post-childbirth changes to hormones really threw her system out of sorts.

In contrast, Robin's daughter Rebecca started seeing results from neurofeedback almost immediately.

Everyone is different.

... They want me to start on Lamectal, I had a quick look and a side affect was Meningitis, I have to go back and read more about the side affects, the FDA wanted to take it off the market, I think? I will do some more research on the drugs first before I have to start back on them again.

A lot of people tolerate Lamictal quite well with no side effects. The key to Lamictal seems to be using a very slow adoption schedule - ramping up to the 'therapeutic dose' over a span of several weeks. Starting too fast seems to aggravate the chances of experiencing side effects.

[Mike]

In my case it took 6 months of treatments two times a week.The tecnition would visit six sites per session, there are 22 different sites on the brain they stimutate with a small electrode. Arter 3 months I saw big changes in memory and motivation. It stop the depression and fear that always invade our brain after seizing. I was on a very low dose of keppra in the end but,never off meds completely. Everyone is different,Bernard has more information than I do. Ive only got 33 years experince having epilepsy.

[hadley.laura]

I have spent 6 months researching this NFT in OZ I finally contacted people in OZ via this site thank you very much. I stopped medication 1 year ago (Tegretol & Topamax) as I started to loose my hair, which is happening again. It may be hormonal as well as I am 49 and there are a lot of changes obviously happening in my body.
I was going to try NFT as I am looking for a cure not just help with my Complex Parcial Seizures which happen over a couple of days every month around the same time of the month, I need to get back to driving so I need a total cure. I dont know what I am going to do as yet as I have to take 2 buses to get to this therapist a few times a week if I start treatment, so far I have not read of it beeing a 100% CURE.
I have been looking for a medication again where there is no hairloss but have not found one so far, I was thinking of trying Keppra again as I went on that once for only about 4 months (200mg) but it made me tired so I stopped, I also struggle with CFS. I had a couple of absences and the dose was upped to 250mg but I only tried that for about 4 days then stopped and went onto Tegretol (400mg) and Topamax (50mg) because of my fatigue. I was on Tegretol & Topamax for about 2 years which was ok until I upped the dose 100mg per day and my hair just started to fall, I decided to stop the extra 100mg a day and gave it 6 months to see if that would stop the hair falling, it did not so I stopped medication 1 year ago.
I just dont know what to do from here I dont know if I want to waste any more time trying this NFT, as not driving has made my life so difficult.
Thnaks Hadley

[Mike]

Ive had partial/complex seizures for 33 years. I took all the drugs that became availble over the years. Nothing worked untill I tryed everything in the late 1990s. First I tryed brain surgery that didnt seem to work because of postoperative ceribural fluid that caused problems. then I tryed the new meds, Trileptal and Keppra as t the time. They seemed to work only after 6 months of nerofeedback. It made it hard to tell if it was the pills or the nerofeedback. now after all this time and all my research I believe that its the Trileptal thats keeping me seizure free. Im 179 days today seizure free. Keep a log of everything you will be able to make the right choice in time. Pray for an answer!

[maddiesmom]

Can someone tell me about the effects on epilepsy between the two times of neurofeedback? THe older traditional kind, and the newer LENS system which actually applies direct stimulation to your brain?

[Bernard]

As far as I know, most neurofeedback practitioners are using either SMR entrainment or QEEG guided protocols.

The LENS system is much newer (ie. less studies / data).

Under all systems, the effects are largely dependent upon the patient and the practitioner's competence in administering the protocol.

[Chaz1]

Bernard, how does one judge true competency from the practitioner?

[RobinN]

That is a very good question.
I based my decision on the fact that the Othmer's at The EEG Institute had lost a child to Epilepsy, and I was comfortable knowing they would not do anything to harm my daughter. I truly trust my instincts and this felt right to me.
I believe this is one reason insurance does not cover the therapy.
Highly unlikely to get referrals/recommendations in the medical field, unless it is put on a private forum. I think I would trust anyone that the Othmer's have trained and recommend in your area.