Pretty darn sure I've got PCS

[davestrand]

Hi,

I'm sure I could give you a lengthy story, but I'm gunna try to summarize for you.

Dave - 33 years old - Chandler, Arizona

I suffered a severe concussion when 9 or 10 years old which gave me a Seizure Disorder (about 23 years ago). I was on Phenobarbital and then Dilantin til puberty set in. I've been seizure free for 20 years.

I'm in good health. I exercise, take vitamins, eat right, don't smoke, drink on the weekends, no drugs. I have suffered from the following since 18 years old.

- Headaches (constant dull pain)
- Fuzzy thought (but I get by)
- Memory problems (I'd tell you what they were, but I can't remember. :winky:)
- Depression (difficulty being happy at or feeling good, if I am happy it doesn't last longer than an hour.)
- EASILY Irritable (my girlfriend can attest to this)
- Dizzy (well it's kind of dizzy.. It's like I can't see straight/focus)
- Trouble concentrating (I can't even focus on conversations many times)

Anyhow, I've had CAT Scans and MRI's. Docs say everything looks fine. I've tried anti-depressents which really messed me up bad (I had EVERY side effect possible) and I've also tried therapy, shrinks, books, meditation... I've tried pretty much everything... but,

Then I found some articles talking about Neurotherapy, and I've been looking into this pretty seriously. I'm an Audio Visual technician, so I'm comfortable with computers and technology. I would REALLY like to try this kind of therapy, but the devices and the software are really expensive. So this brings me to my questions.

1.) Could Neurotherapy help me?

2.) How could a regular guy with regular insurance get a device and software

3.) Heck, can I build one and download the software?

4.) There are some clinics here in Arizona, is there some special routine for getting in there and treated?

Thanks so much for reading.

-Dave 33 / Chandler, Arizona

p.s. When I was young I had a CAT scan and was able to alter my brainwaves to make the paper read out go crazy, and then was able to get it very quiet. I guess I was way ahead of my time.

[Lucy]

Hi Davestrand, just quickly, yes I think that you do have PCS. I can't comment further at present as I am at work, home computer is being repaired but I am sure that a lot of the others will shortly be in touch with you. If it is any help I am very similar to your symptons and have had them for 6 years. Lynlee

[Lucy]

Hey, can you tell me what you mean by neurotherapy please, thanks

[davestrand]

Oops. Maybe it's called Neurofeedback. Basically, my understanding is that a computer monitors your brainwaves, and you try and focus on strengthening certain brain functions that are somehow damaged during the concussion. I'm not a doctor, and I only learned of it a couple days ago... so don't quote me on it. :)

http://en.wikipedia.org/wiki/Neurofeedback


http://www.neurobitsystems.com/images/bioexplorer-large.jpg

[jeffn]

Dave Thanks for the information, looks like your on to something that my help those of us who have TBI/PCS ? The problem seems to be to treat the sysmtoms of the injuried part of the brain and not the cause. Your also in a good part of town as Barrow Neurological Institute is in Phonenix one of the best in the world and a huge resourse center.

Please keep me posted on what you find. :)

PS: Welcome

[yannimac]

I hear mixed things about it. Some people think its does not work because there are no double-blind placebo trials to prove it, but its really impossible to conduct such a test because you can't give someone placebo neurofeedback. Others say it really helps with hypertension, adhd, and mtbi. NASA uses it to help their pilots concentrate. It makes sense to me... People with mTBI and ADHD have QEEG's that differ from the norm of the population. Neurofeedback can train your brain to have a more normal QEEG and people say when this happens they feel better. Its worth a try... I am waiting to see if I get better with time, but I think I will eventually try it if I don't get back to feeling well every day like I used to.

[Lucy]

HI. I know somebody that had neuro feed back therapy - she was about my age when she had it and said that it has stopped her being so tired. I am wary about it and can't have it in New Zealand anyway, would have to go to Sydney. I have had a QEEG and it did show up with brain injury, it is the only physical evidence I really have. Iwould hate to make things any worse. Lynlee:)

[davestrand]

Thank you for the responses!

So, I think I might just up and buy one of these machines. Charge it! Heck, it looks like they sell okay on ebay, so I wouldn't be out too much dough if it didn't work out.

Anyone know what kind is best for under 1000 bucks?

I'm looking into maybe the Waverider, or the Brainmaster There's also a website about making your own EEG devices, or getting em for under 300 bucks. I might go that route too, though since I'm only a beginner it seems a device with some support would be good.
http://www.brainmaster.com
http://www.mindpeak.com/


Here's the open EEG project site.
http://openeeg.sourceforge.net/doc/

[davestrand]

I did it!

I did a lot of research, saw my doctor, spoke with clinics in the area and finally found a great site for purchasing Neurofeedback equipment.

Here's the summary of what I found out.

1.) It's kind of hard to get your hands on the equipment because everyone wants you to shell out lots of money for clinicians.
2.) Your insurance is most likely NOT going to cover it.
3.) Most practices want you to use their uber expensive services, and not home train. This makes good business sense for them, but since I am an audio visual technician, I'm all about empowering people with their own technology.
4.) With the help of a seasoned professional I put together a starting package for Neurofeedback that was under $1200 that I can train out of my own home after an assessment, and 'under professional supervision' which will run me $150.

http://www.brain-trainer.com is where I made my purchase. They were extremely helpful and offer the same high end products, with the added bonus of expert advice on how to start. I am in no way affiliated with this company, or advertising for them... I just wanted to save you guys the hassle I went thru.



Here's the equipment I bought.

--------------------------------

Product Name: Silver Electrodes
Silver ear clips, pair
Price: $36.00

Product Name: Silver Electrodes
Silver cup electrode
Price: $10.00

Product Name: Pendant-EEG
Pendant EEG U.S.
Price: $550.00

Product Name: Silver Cup Electrode StartUp Packages
Silver StartUp Package 1
Price: $24.00

Product Name: BioExplorer
Choose Option: QuickStart Package US shipping
Price: $470.00

Total $1140.00

-------------------------------


I will check back in a couple months and let you know the results.

Thanks,
-Dave
Arizona

[jeffn]

Dave :Thank you for sharing the information, it's exciting to see the progress you've made on this research in a very short time. This information maybe very helpful to those who have TBI/PCS.

I ordered the book Getting Started With Neurofeedback by John Demos from the table on contents it looks like this is part of the training manual for clinicians and an in depth study of what Neurofeedback does. I'm going through the learning curve on this type of therapy and it looks very promising for the treatment of TBI/PCS.

Your right Dave it is about empowering the people as many of us who have suffered TBI/PCS have been walked around the block.

Did you contact Brain State Technologies in Scottsdale and are these the people you're going to use for your assessment ?

Looking forward to your post and seeing the type of progress you're making
I hope it is a full recovery for you.

Jeffn

[mrsD]

Is a major depleter of nutrients to the body.

Low folic acid is implicated in depression and other CNS problems.
B12 -- please visit our Vitamin forum
B1 Thiamine -- which is necessary for the nervous system
Calcium
Vit D both serious issues, and Vit D today esp is being tested for.

Many of your symptoms may reflect low status of these nutrients.
You can have folic acid tested as well as Vit D.
If you test for B12 also get a MMA test which is more accurate. Any level below 500 for B12 is questionable (USA standards are antiquated as normal here)

I think you need to address nutritional issues for your depression, because of the drugs you are on for so long!

[davestrand]

Is a major depleter of nutrients to the body.

Low folic acid is implicated in depression and other CNS problems.
B12 -- please visit our Vitamin forum
B1 Thiamine -- which is necessary for the nervous system
Calcium
Vit D both serious issues, and Vit D today esp is being tested for.

Many of your symptoms may reflect low status of these nutrients.
You can have folic acid tested as well as Vit D.
If you test for B12 also get a MMA test which is more accurate. Any level below 500 for B12 is questionable (USA standards are antiquated as normal here)

I think you need to address nutritional issues for your depression, because of the drugs you are on for so long!

Thanks, but I take plenty of vitamins, and have been taking them for years. I also haven't had any Dilantin for about 20 years.

[Lucy]

HI Jeffn - when you have received your book and had a good study of it can you let us know what you think. I managed to fall over again on Friday so am over tired again and am spending all my energy on maintaining my 3 hour days at work. Thanks, Lynlee

[jeffn]

TO Lynlee Sorry to hear about your fall no fun and it seems to be a pattern with those with TBI/PCS.

I should receive the informational book on neurofeedback this week as the book store here had to order a copy and I'll keep everyone posted on what I learn about the type of therapy. I'm very excited about this and think it maybe part of the solution.

Looks like DaveStrand is making a great deal of progess here as he has already order the equipment and has done a great deal of research on neorofeedback looking forward to what he finds out.

Take Care and get well. Jelln:)

PS: You may want to think about wearing a bike helmet for awhile to protect your head until you get your balance back. PREVENTION

[Lucy]

Jeffn - I need a stabilizer for my brain - kind of like a ship and maybe a force field around me with some kind of alarm to let me know when I am about to hit my head - maybe I could have outriggers like todlers have on the bikes !!! Have to laugh really -

[jeffn]

Lynlee, If I where looking for a bike helment I would look for a bright pink one with racing stripes or maybe flames.

You could ware it to work I think this would be a real confidence builder for your clients. Ya THINK

Good to see you have a since of humor about this.

My book just came in so I'm off to book land.

Take Care. Jeffn::wink:

[Lucy]

Very funny Jeffn - instead of flames I would prefer sparkles! Pink with sparkles! How much of that book have you read yet?????? I wanted to put the roll eyes sarcastic smilie icon on but couldn't get it. Lynlee

[jeffn]

Lynlee, just finshed my first read very good information on Neurofeedback.

Made an intro on PCS Mc Gee post for those interested in neurofeedback that where this information seems to belong. neurofeedback is starting to make since.

Take Care Jeffn:)

[davestrand]

I am going to document my experience with Neurofeedback so tune in, if you like. Here's the link to my Neurofeedback blog. I posted pictures of my stage one assessment.


http://www.strandland.com/neurofeedback/ (http://www.strandland.com/neurofeedback/)

Thanks,
-Dave