Hello.

5 years Post Concussion. 29 year old male.

My family has finally finally agreed to let me try neurofeedback.

This would be my first attempt at real treatment.
My family has figured out that "thinking happy thoughts" and "just getting back into a good 9 to 5 routine" is not working.

Only took 5 years.......(not bitter at all )

Does anyone have any suggestions for good practitioners in North America?
Either Canada or the United States, I have no options in my country.

Anyone have any positive or negative feedback or experiences to share?

I know I should ask others who have done it but I'm also afraid to ask as I don't want my hopes dashed on the rocks.

I haven't felt hope in so long, it's very frightening that I might get some only to lose it again. I don't know if I could take that.

What symptoms are you hoping to treat ?

What kind of neurofeedback are you considering ?

At 29, why does your family have to agree ?

Where do you live ?

Some neurofeedback therapies can take weeks of treatments to see any changes, it that happens at all.

Heya Mark.
My family would have to agree because I cannot work due to my injury and am therefore broke. I would need someone to pay for it. I would have to travel abroad and stay somewhere which was simply financially impossible for me, even at the best of times.

And by family I really mean father, both my sisters are married and taken care of.

My family has the means, just my family would not let my try anything (until now) because they couldn't see my injury. So I've been cast aside as "lazy" and "emotional"

They wouldn't read or learn about concussions and my father's only suggestion was "just get back on a good work routine and it will all go away - think positive"

Naturally, this would simply aggravate my symptoms until I couldn't get out of bed

I've tried explaining till I was blue in the face but they just didn't want to listen or believe it.

I can still hear my sister asking with a nasty tone
"So...when are you going to get over this concussion thing?"
That was like 9 months post injury. Around when I first started posting.

November 28th 2016 was my last "good day"
I've been bed ridden ever since.


That being said...
If I didn't have my family to fall back on for basic support (food, shelter, etc) I would have been dead or homeless a long time ago. My old man will get me soup or frozen food from the food store but otherwise will not spend any time with me.

I live outside of the US in a country with very poor healthcare, unless you get shot or stabbed.....we are very good at treating those conditions.

Symptoms:
can't exert myself at all
Fatigue (don't confuse this with somnolence....I'd pay to have that! No symptoms when I am asleep!)
Insomnia (yes, I've improved my sleep hygiene, no effect)
Sensitive to light & sound
Extremely sensitive to even the most minor of bumps.
Foggy thoughts
Strong lability when symptomatic
Impulse control: I can't keep my mouth shut, I don't know if that's a symptom of PCS or not having anyone else to talk to for the past 2 years.


I was on your vitamin stack for about a year and a half but could no longer afford it and it didn't seem to help me much.

I went to a psychiatrist for about six months until I realised he didn't believe me and was just taking my money.


What symptoms am I hoping to treat? I'll take anything at this stage but if I was given the choice it would be the "sensitivity" to the jolts and stimuli. If I could "freeze" my baseline symptoms then I feel I could live a somewhat normal life but I can't.

If I push against the PCS, it pushes back, hard, until I'm all the way back in bed.

Twice I've come close to ending it all. I'm just to much of a coward to actually do it.

What kind of neurofeedback.....I don't know. Hence why I'm asking around here if thats allright?

I think you would be better off finding a clinic that will take you as a patient to do some diagnostics and assessments and possible treatment. If you have any resources for places/family to stay for an extended period like Boston (Mass General has a concussion program), Pittsburgh (UPMC), Buffalo (University of Buffalo) or near any of the big teaching hospitals, that would be a start.

I've kept up to date with the things Dr. Leddy has done at UB. Got pretty excited and even let myself get hopeful.

When It comes to Buffalo, well I called them and was shuffled around by secretaries until they put me on some answering machine with instructions to briefly describe my symptoms and leave an email address. I did so.

About 2 or 3 days later received this via email


"In response to your telephone inquiry about the concussion clinic at The University at Buffalo, you are not a candidate. Thank you."

I hope you guys at UB read this! Awful way to respond to people looking for help!


Pretty ****ing poignant response to give to someone who is
A) Sick
B) Willing to pay

I guess I can email or call Pittsburg and Boston. I'll have to restart the entire conversation with my old man.


Someplace out in Winnipeg started doing the Buffalo Protocol but I am not a candidate because

A) I do not reside in Manitoba (I do hold Canadian citizenship)
B) Am OVER 18 (youth sports injuries only)
C) Even if I did pay, I'd be differed behind the provincial non paying youth. Said they couldn't guarantee me a spot. At least they were nice on the phone though.



It baffles me that there are places offering treatment but with some strange criteria on how to receive it.

Many clinics focus on return to play and athletes and patients who are closer to the original injury date.

Have you checked with the Ontario Neurotrama Foundation ? They have affiliates that may be able to help.

I don't remember right now but there is a large concussion program at one of the Florida hospitals.

I seem to remember. You are in the Bahamas or Barbados or ? Aren't you.

I've been dealing with PCS for 3 years, with many similar symptoms to yours (extreme sensitivity to exertion and head bumps, light & sound sensitivity, brain fog, etc.). I've been receiving regular neurofeedback treatments for over 2 years, starting with LENS therapy and now NeurOptimal. They have both helped me immensely and I consider them worth every penny, and they have involved quite a lot of pennies.

That being said, neurofeedback has mainly only helped me with cognitive issues. I never felt "with it" after my first TBI almost a decade ago and the neurofeedback has helped tremendously with that and the cognitive fatigue. But I haven't found it to make me less vulnerable to setbacks from minor head bumps, overexertion, or overstimulation, and it's only helped a little with the headaches (though LENS did help more than NeurOptimal in that regard). It did pretty much cure my insomnia, LENS especially, which was a major boon. But beyond being able to sleep well, think more clearly, and generally be more aware of my surroundings, it hasn't done much in terms of functionality.

There have been 2 main interventions that HAVE helped me regain some functionality. The first is an anti-inflammatory/paleo diet, which has led to a major reduction in brain fog, headaches, and fatigue. And the second is physical therapy, which helped stabilize my neck (which before PT I didn't even realize was an issue) and got me back to the point of being able to tolerate moderate exercise (until I hit my head yet again a year and a half ago).

I too am relying on my parents for money right now (though I'm fortunate that they're quite supportive), so I know the feeling of having to pick and choose your treatments based on what someone else will consider worthwhile. And you may have a very different experience with any or all of these. But in my humble opinion, neurofeedback is absolutely amazing but given the limits of what it can do, the expense, and the logistical constraints in your situation, it's not the first treatment I'd try.

Good luck finding something that works for you. I'm happy to give more detail about my experience with neurofeedback if you have any questions.