New member here

[brianx]

Hi all,

I had a "Grand Mal" seizure at the age of 16. I am now 39 and still on medication. I switched from Tegretol to Lamictal a few years back to reduce toxicity and side effects. I only have "Petit Mal" seizures and not very often. I'm fortunate to be able to drive and function daily without issue, although when I miss a dose or two, I will usually have a focal seizure (trance like state). I would really like to get off the medication, and I've read about the success others have had with Neurofeedback and fish oils. Whenver possible, I prefer a natural approach to dealing with health issues. I believe the body (and brain) can repair itself. Pharmaceuticals seem to only treat symptoms, not the underlying cause. Seizure Disorders don't run in my family, and I'm fairly certain my diagnosis stems from a severe ear infection that caused me to become delirious, and eventually, I had to have a mastoidechtomy (age 2). My wife is hesitant for me to get off the medication, but I will be checking with my doctor. Has anyone had positive feedback from neurologists about Neurofeedback/fish oil, or are they typically closed minded about alternative approaches?

 

[Bernard]

Hi Brianx, welcome to the forum. :hello:

I would not recommend dropping the meds until you believe that there is a high likelyhood that you will remain seizure free afterwards. If you have increased seizure activity when you miss a dose or two, it is clear that you are not ready IMO. Most doctors won't try dropping meds until you have been completely seizure free for two years.

Stopping meds without having control can make things much worse! Your seizures could change (generalize into tonic clonics/grand mals) and/or become more frequent.

While I do know a couple of people who have had neuros that either been open to the idea or even outright suggested it, it's been my experience that most neurologists don't really know anything about EEG neurofeedback. I highly recommend you do your own research and then approach your neuro. I've done a lot of the leg work for you already: EEG Neurofeedback

Any doc that poo poos the idea of simple supplements like Omega 3/DHA, magnesium, etc, without any clear and logical reason is not doing you any favors. They are so cheap to try and the "risk" is so miminal, why wouldn't anyone try them and see what happens?

 

[brianx]

Thanks much Bernard! Actually, I learned about the forum from a thread (through Google) in which you responded to a members inquiry into Neurofeedback. My intention was to incorporate the Neurofeedback in while continuing to take the meds (with doctor approval of course). My hope is that I can slowly decrease the dosage if things go well. I know fish oil on it's own isn't sufficient in my case (I take it now for cholesterol reduction). It seems to good to be true, but I've read of people that have full blown Grand Mal's on a daily basis, and they have complete cessation of seizures after the Neurofeedback.

 

[Brainskip]

Howdy and welcome to the boards, there are a bunch of really good people here.

Brian

 

[brianx]

Thanks Brainskip! I'm sure I'll learn a lot.

 

[Bernard]

My intention was to incorporate the Neurofeedback in while continuing to take the meds (with doctor approval of course). My hope is that I can slowly decrease the dosage if things go well.

That is what Stacy (my wife) is currently doing (again!) - maintaining her AED while training her brain with EEG neurofeedback. We hope that in a couple of months, she will be back on a continuous, normalized brain wave state and be able to reduce or drop the AED.

It seems to good to be true, but I've read of people that have full blown Grand Mal's on a daily basis, and they have complete cessation of seizures after the Neurofeedback.

Yes, most of the studies done on EEG neurofeedback were on so called "intractible" cases that did not respond to medications - with people who had the worst seizure patterns.

 

[brianx]

Thanks again for the feedback and advice! I will be contacting my neurologist in the near future. I've identified a Neurofeedback "specialist" in my area (just south of Denver). Will keep everyone posted.

 

[brain]

:hello: BrainX

Welcome to CWE and keep us Posted!

We'd love to hear your REPORT!
:tup:

 

[speber]

Welcome Brianx!.....

Good info on alternative approaches are what brought me to this forum!

Let us know how the nuerofeedback efforts work out for you!

:rock:

 

[brianx]

Thanks to all. I will report back soon.

 

[RobinN]

I also wanted to step in and welcome you. I am looking forward to what you report as it is an area of interest to me too.

 

[Birdbomb]

Just want to say Howdy and welcome to CWE. Tons of excellent info here, great folks, and laughs out the ying-yang. Fair warning that I will seek out anything that can possibly be funny and run with it.