Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 05-04-2023, 09:00 PM #1
GoldPostal GoldPostal is offline
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Default Cognitive FX Led to Full Recovery: PCS, TMS, and my unrestricted thoughts and theory

I am on the verge of tears that I have not shared this information because it has been almost 6 years. The reason it has taken so long is twofold: one, it's a traumatic one for me to return to And two, I have been strangely afraid that I will not be believed or will somehow cause further pain or disappointment in a PCS sufferer if they try what worked for me and it doesn't work for them.

Ultimately if it can help even one person it is worth sharing.

I will recount my story and my theory surrounding post-concussion syndrome.

Part 1: a history
I suffered a concussion in November 2016 after fainting in my bathroom. I had a prior history of concussions before this, including a significant 5 month PCS battle in 2015.

After this 2016 concussion, I experienced another round of awful post-concussion syndrome. Headaches allll the time. I could not go out and socialize or really use my head much at all without fatigue and headaches. Most of you know that story. A post concussion headache feels like when you're lifting weights and hit your maximum reps, and couldn't possibly lift another rep. Except, in your brain.

This all came when I was supposed to be going away to college. All of my friends were off at school beginning their new lives and I was trapped at home, drowning in a prison of pain. I'm a perfectionist in nature, and I felt robbed and cheated. I was experiencing suicidal ideation. I was afraid I'd done so much damage to my brain with concussions that I would be broken forever.

Over 7 months, My dear mother paid for and drove me to sooo many different doctors, therapists, and specialist. Each one did absolutely nothing to improve my symptoms. Concussion clinics, PTs, chiropractors, accupuncturists. Pointless

Part 2: A solution
In July, we ended up flying from Boston to Utah to visit Cognitive FX. In short: this led to my symptoms going away.

In long: Cognitive FX uses a fancy radiology machine to measure how the blood is flowing to different regions in your brain. They ask you to perform cognitive exercises while in the machine. At the beginning of your week there, they take one scan, and at the end of your week there they take another.

My scan "score" was vastly improved by the end of my time there. They told me I had nothing to worry about anymore. My scans were in the completely healthiest range. They promised no amount of over exertion would set me back or hurt me.

So it was a disappointing shock when I returned home and felt the exact same as the day I flew to Utah. I broke down in tears.

However, three or four days later, a profound thing happened. I remember attending a BBQ for the 4th of July- as I was trusting the notion that my CFX time might have set my brain right. And I felt rotten at the beginning of the afternoon at this social event- experiencing the usual PCS suspects. But I told myself to stick it out.

Then, a few hours later, someone asked me, "hey man, how are you feeling with your head?" and then I realized... I felt normal. Completely, 100% normal. And it stayed that way, pretty much for good.

It was almost as if once I "forgot" my symptoms, they went away.

At the time, I credited CFX with giving me my life back. And in a way, they did. Grateful for it.

Part 3, a theory
However, an experience with wrist issues a few years later in 2018 led me to discover the work of Dr. John Sarno, author of a polarizing book called Healing Back Pain. Sarno posits that most chronic pain issues are actually caused by a phenomenon he called tension myositis syndrome, or TMS. The idea is our body the body is resilient and recovers well and swifty from the acute phase of structural injury, and often uses lingering pain to distract us from emotional issues, and that highly stressed, perfectionistic individuals are the most susceptible to chronic pain. He made his career helping back pain patients feel better by encouraging them to try their best to just live a normal life and "unlearn" their pain.

Most interesting to me while reading his book. There apparently have been studies done on patients who have had their back pain treated with a TMS "unlearn your pain" approach, which measure the blood flow to affected areas. Patients who recovered using Sarno's approach had been experiencing restricted flow of blood to their pain areas, and when they felt better, their body had been flowing blood normally to said areas.

SOUND FAMILIAR??

That's exactly the basis of Cognitive FX and their fNCI brain scans.

I have a theory that post-concussion syndrome from a mild concussion (the kind where structural damage can't be detected on an MRI) is a form of TMS. I will return to elaborate and answer questions because I'm tired of writing.

I experienced another concussion in 2021 actually. After an auto accident. And the symptoms of that one lasted about 5 days. I kept telling myself to trust that my body would heal swiftly. And it seemed to work out. And I'd also read somewhere on the web that apparently a doctor from like UPMC or something says the acute phase of a concussion only lasts about 14 days or something. But I can't find that source right now. And maybe this concussion was just luck.

I don't know if I am right or wrong. But If you're struggling with post-concussion syndrome after an mTBI, stay strong and keep the faith because recovery IS possible.
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Old 05-05-2023, 05:22 AM #2
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CogFX uses fMRI scans. Do they call them something different, fNCI ?

It sounds like the protocol taught your brain to unlearn the anxiety response that it had been holding to. Good for you.

I bet your perfectionist thought process caused you to be frequently checking for symptoms. An anxious brain will easily manifest the symptoms that are expected.

This fits with the data that says 80% of prolonged PCS sufferers have a pre-existing struggle with anxiety. Perfectionism is a form of anxiety.

Again, good for you.
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Old 03-16-2024, 04:11 AM #3
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Did you ever come back to this with more thoughts and theories?

I'm struggling with PCS in the form of headaches that have started almost exactly a year after the concussion, very disabling and I'm hating life rn. Sounds very similar to yours, spend most of my time doing nothing. Even fidgeting or tapping my fingers makes the headache worse and, naturally, I go to all the terrible places in my mind. But even focused thought and conversation makes it worse too!

I've also dealt with TMS and experienced a miraculous recovery from tendinitis in wrists and ankles, as well as a couple of other symptoms. I'm really hopping that this PCS, so long after the original incident, is another form of TMS but, naturally, I don't really want to jump in until I feel more confident. The TMS forums are a mix of opinions, too. But, I have so much stress in my life and a whole load of emotions/probable repression that I can't express because I'm stuck in my room trying to stay as still as possible. This post is an exception, obviously.

I have an appointment with a Neurologist on Monday, but I'm hoping it will be a positive experience and this won't turn my life upside down for the next few years or longer.
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Old 04-10-2024, 10:52 PM #4
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Check out Complete Concussion Management. There are trained practitioners all over the continent.
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Old 05-23-2024, 01:31 PM #5
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So it's been a couple of months, and I feel confident in saying that I agree 100% with OP, at least in their (and my) case.

I saw the Neurologist, he seemed completely positive that my headaches would go, and that I should stop taking the painkillers. So, I did, and they did! It wasn't like magic, it took a week or so, but they disappeared after actually doing MORE instead of doing LESS. I was sceptical at first ("but this is post concussion syndrome! Lots of people complain about it online, even reputable sources say it's a thing, so it must properly be an issue!"), but a large part of me wanted to believe in it. I believed, and it went. There was probably a bit of a headache that started from anything else, maybe dehydration, too much screen time, whatever, and my brain just picked it up and turned in to a nightmare scenario.

It's really difficult to overstate how much fear there is around concussion, how much fear I specifically had around concussion, and I believe the fear did more (impermanent) damage to me than the actual knock on the head. I lost 6 weeks to dark rooms and being driven crazy by my mind whirling in circles with half-remembered songs and endless what-if scenarios. I keep coming across 'issues' in my life that I think I overmedicalise and the cycle begins anew.
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Old 09-25-2024, 05:12 PM #6
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Default Cognitive FX Experience Positive

Gold Postal,

TLDR - Cogntive FX worked after not getting any better from any doctors treating me in L.A.

Thank you so much for sharing your experience on this forum. I contacted Cognitive FX (Dr. Fong and Dr. Trevort) and went out for a two-week course of treatment.

I was dealing with symptoms from a mild TBI/concussion caused by a car accident for years. I thought the doctors in Los Angeles would be some of the best and got bounced between a ton of them until they started telling me it was all in my head when I wasn't getting better.

I am happy to report I am now 3 months post-treatment, and I no longer am dealing with the brain fog, noise sensitivity, and headaches that were making life unbearable. I am back to normal I just wish I had started to do the research earlier and come across your post sooner.

If the doctors you are currently seeing aren't helping you get better find a new place. I can also recommend Cognitive FX.

I will post a full review of my experience with my injury and all the different treatment options later. Hope it will benefit someone like this thread did.

Thank you all from a long-time lurker.
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