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


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Old 11-27-2018, 02:29 PM #1
Stoic Stoic is offline
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Default Recovery Success Story

Hello friends – I haven’t posted much on this forum but I wanted to share a (relative) success story for those of you still struggling with post-concussion syndrome.

It’s been a year now since my concussion and I have recently managed to functionally recover from PCS – by functional recovery I mean that I no longer suffer from the most disabling symptoms including constant headache, light sensitivity and the crippling PCS fatigue. I have been free of these symptoms for over a month now. Although I have improved significantly cognitively – I can remember new people I met a few weeks ago again, my visuospatial ability and cognitive ability still aren’t as good as they used to be pre-concussion but that’s a minor complaint.

So what lead to my breakthrough in recovery?

Two things: seeing a competent behavioural optometrist who specialized in neuro-optometry and taking the buffalo protocol seriously.

I had previously been to a ‘concussion clinic’ that gave me 3 basic eye exercises (pencil-push-ups etc) that I did for half an hour every day for over a month but which did not help (in fact one of them, a gaze-fixating exercise where you shake your head severely exacerbated my PCS at one point) any of my visual problems.

About 3 months ago I went to a behavioural optometrist with the intention of trying prismatic glasses (I got the inspiration from Eliot Clark’s book on his PCS experience) and he not only gave me prism glasses but also real visual-therapy exercises that I noticed made a notable difference in my symptoms in as little as 2 weeks. For example, I used to have blurred vision when looking at moving objects (e.g. scrolling text) – it turned out that the speed at which I could focus/accommodate my vision was more than 2x slower than normal and the behavioural optometrist gave me exercises that gave me noticeable results in the symptom whereas the concussion clinic guys didn’t even touch on that symptom or its cause. I still have the blurred vision on looking at moving objects but it has significantly improved. I continued to have convergence insufficiency which has now completely resolved and several other main problems which I won’t go into the details of but you get the idea: visual and vestibular problems are fixable and you need to see competent people that can help you with these.

The other thing I did which I believe was just as, if not more, helpful than the behavioural optometrist was taking the buffalo protocol seriously. I know the buffalo protocol was effective because I had dramatic improvements in my worst symptom – crippling fatigue – before I even saw the optometrist and I noticed rapid improvement in the weeks following starting the buffalo protocol.

I had tried regular aerobic exercise – jogging – in the past with no significant improvement in my symptoms. What convinced me to give it another go was reading this scientific article about PCS: I can't post links but google "Neurovascular Coupling: A Unifying Theory for Post-Concussion Syndrome Treatment and Functional Neuroimaging" for the article

To make a complicated article overly simple the idea is that a key pathophysiological aspect of PCS is dysfunctional regulation of cerebral blood-flow. This dysfunctional autoregulation of blood flow in the brain is what causes the exercise intolerance seen in pretty much everyone with PCS. And the idea is that the brain can learn to functionally regulate blood-flow again in response to chronic, graded exercise.

Now when I had previously attempted exercise in the past I had only done light-jogging about 20 minutes a day. In the beginning even light-jogging would exacerbate my symptoms (I’d get a headache while jogging) but after 2-3 weeks of jogging everyday I could jog at a slow pace without exacerbation of symptoms. However, I noticed no improvement in my PCS symptoms and stopped. What I never bothered to do back then because I had never read about the buffalo protocol (I was simply advised that ‘exercise can help with PCS recovery’) was to increase the intensity of my exercise, i.e. to do activity at a higher and higher heart-rate.

ItÂ’s not enough to get used to doing a light-jog without exacerbating PCS symptoms. You must be able to get to maximum capacity at close to 100% heart-rate like a normal person without getting symptoms. Or at least thatÂ’s the goal.

The Buffalo protocol is basically gradually increasing your heart-rate while running on a tread-mill.

I practiced an exercise regimen of jogging outside at faster paces and adding multiple, short bursts of sprints, 20-30 minutes a day, every-day.

I was sprinting within a week of starting the regimen and at first I would get very severe symptoms: the first 3-5 days of sprinting gave me splitting headaches that would last for many hours after exercise.

But I persisted (taking a days break every 2-3 days in the beginning).

And after about 3 weeks I began to notice something:

The symptoms that I would get after intense exercise became less severe. The headaches decreased in severity and soon lasted for an hour or two rather than all-day. And as this was happening I noticed my crippling fatigue getting better and the brain fog lifting. A month before I started the Buffalo protocol I needed a nap after walking to town for shopping and a month after I could do a normal day like I used to be able to before my concussion again.

I am at the point now where I can exercise intensely at maximum capacity (sprinting with breaks for 20 mins) and only get a mild headache that lasts 30 minutes at most. And I have only mild residual visual problems.

But the resting headaches are gone, the fatigue is gone, the fog is gone. I have been a functional human being for over a month now.

The scientific article I linked to is also what the Cognitive FX centre base their treatment programme on but I managed to almost resolve my PCS on my own by simply running outside for a month and seeing a competent optometrist that charged me 1/10 of what Cognitive FX do. This after like 9 months of suffering from unremitting post-concussion syndrome that just didnÂ’t get better on its own.

I encourage anyone with post-concussion syndrome to give the Buffalo protocol a serious attempt for at least a few weeks until you can do intense exercise and to see a competent vestibular therapist and/or behavioural optometrist.
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Old 11-28-2018, 05:38 PM #2
chrissylala chrissylala is offline
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I too believe exercise is key. Slowly working up to more and more. I'm just over 2 months out and trying to increase my exercise now that my symptoms don't last as long. Every brain is different though right?

I didn't do so great the last time my PT tested me on the treadmill. 10 minutes and severe dizziness that didnt last more than 30 minutes. It's a start. So I do 10 minutes fast and incline then 10 regular now. It's just about slowing chipping away. Snowshoeing has been good.

Glad you are on the other end of it. Hope I am soon!
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Old 11-29-2018, 12:24 PM #3
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Quote:
Originally Posted by Stoic View Post
Hello friends – I haven’t posted much on this forum but I wanted to share a (relative) success story for those of you still struggling with post-concussion syndrome.

It’s been a year now since my concussion and I have recently managed to functionally recover from PCS – by functional recovery I mean that I no longer suffer from the most disabling symptoms including constant headache, light sensitivity and the crippling PCS fatigue. I have been free of these symptoms for over a month now. Although I have improved significantly cognitively – I can remember new people I met a few weeks ago again, my visuospatial ability and cognitive ability still aren’t as good as they used to be pre-concussion but that’s a minor complaint.

So what lead to my breakthrough in recovery?

Two things: seeing a competent behavioural optometrist who specialized in neuro-optometry and taking the buffalo protocol seriously.

I had previously been to a ‘concussion clinic’ that gave me 3 basic eye exercises (pencil-push-ups etc) that I did for half an hour every day for over a month but which did not help (in fact one of them, a gaze-fixating exercise where you shake your head severely exacerbated my PCS at one point) any of my visual problems.

About 3 months ago I went to a behavioural optometrist with the intention of trying prismatic glasses (I got the inspiration from Eliot Clark’s book on his PCS experience) and he not only gave me prism glasses but also real visual-therapy exercises that I noticed made a notable difference in my symptoms in as little as 2 weeks. For example, I used to have blurred vision when looking at moving objects (e.g. scrolling text) – it turned out that the speed at which I could focus/accommodate my vision was more than 2x slower than normal and the behavioural optometrist gave me exercises that gave me noticeable results in the symptom whereas the concussion clinic guys didn’t even touch on that symptom or its cause. I still have the blurred vision on looking at moving objects but it has significantly improved. I continued to have convergence insufficiency which has now completely resolved and several other main problems which I won’t go into the details of but you get the idea: visual and vestibular problems are fixable and you need to see competent people that can help you with these.

The other thing I did which I believe was just as, if not more, helpful than the behavioural optometrist was taking the buffalo protocol seriously. I know the buffalo protocol was effective because I had dramatic improvements in my worst symptom – crippling fatigue – before I even saw the optometrist and I noticed rapid improvement in the weeks following starting the buffalo protocol.

I had tried regular aerobic exercise – jogging – in the past with no significant improvement in my symptoms. What convinced me to give it another go was reading this scientific article about PCS: I can't post links but google "Neurovascular Coupling: A Unifying Theory for Post-Concussion Syndrome Treatment and Functional Neuroimaging" for the article

To make a complicated article overly simple the idea is that a key pathophysiological aspect of PCS is dysfunctional regulation of cerebral blood-flow. This dysfunctional autoregulation of blood flow in the brain is what causes the exercise intolerance seen in pretty much everyone with PCS. And the idea is that the brain can learn to functionally regulate blood-flow again in response to chronic, graded exercise.

Now when I had previously attempted exercise in the past I had only done light-jogging about 20 minutes a day. In the beginning even light-jogging would exacerbate my symptoms (I’d get a headache while jogging) but after 2-3 weeks of jogging everyday I could jog at a slow pace without exacerbation of symptoms. However, I noticed no improvement in my PCS symptoms and stopped. What I never bothered to do back then because I had never read about the buffalo protocol (I was simply advised that ‘exercise can help with PCS recovery’) was to increase the intensity of my exercise, i.e. to do activity at a higher and higher heart-rate.

ItÂ’s not enough to get used to doing a light-jog without exacerbating PCS symptoms. You must be able to get to maximum capacity at close to 100% heart-rate like a normal person without getting symptoms. Or at least thatÂ’s the goal.

The Buffalo protocol is basically gradually increasing your heart-rate while running on a tread-mill.

I practiced an exercise regimen of jogging outside at faster paces and adding multiple, short bursts of sprints, 20-30 minutes a day, every-day.

I was sprinting within a week of starting the regimen and at first I would get very severe symptoms: the first 3-5 days of sprinting gave me splitting headaches that would last for many hours after exercise.

But I persisted (taking a days break every 2-3 days in the beginning).

And after about 3 weeks I began to notice something:

The symptoms that I would get after intense exercise became less severe. The headaches decreased in severity and soon lasted for an hour or two rather than all-day. And as this was happening I noticed my crippling fatigue getting better and the brain fog lifting. A month before I started the Buffalo protocol I needed a nap after walking to town for shopping and a month after I could do a normal day like I used to be able to before my concussion again.

I am at the point now where I can exercise intensely at maximum capacity (sprinting with breaks for 20 mins) and only get a mild headache that lasts 30 minutes at most. And I have only mild residual visual problems.

But the resting headaches are gone, the fatigue is gone, the fog is gone. I have been a functional human being for over a month now.

The scientific article I linked to is also what the Cognitive FX centre base their treatment programme on but I managed to almost resolve my PCS on my own by simply running outside for a month and seeing a competent optometrist that charged me 1/10 of what Cognitive FX do. This after like 9 months of suffering from unremitting post-concussion syndrome that just didnÂ’t get better on its own.

I encourage anyone with post-concussion syndrome to give the Buffalo protocol a serious attempt for at least a few weeks until you can do intense exercise and to see a competent vestibular therapist and/or behavioural optometrist.
So do you recommend exercising through the symptoms? I was under the impression that exercise should be stopped upon having symptoms (brain fog/headache/etc). With this approach I have a limit of light aerobic (walking or exercise bike) for 10 minutes and not been able to improve my tolerance for a couple of months now. So instead should I exercise everyday and just push through? THanks for the help and post.
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Old 11-29-2018, 04:02 PM #4
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Originally Posted by swampmonster14 View Post
So do you recommend exercising through the symptoms? I was under the impression that exercise should be stopped upon having symptoms (brain fog/headache/etc). With this approach I have a limit of light aerobic (walking or exercise bike) for 10 minutes and not been able to improve my tolerance for a couple of months now. So instead should I exercise everyday and just push through? THanks for the help and post.
Hi Swamponster,

Officially the protocol does recommend exercising sub-threshold for symptoms but this prescription seems more to avoid discomfort than any evidence that exercise needs to be sub-threshold to improve PCS.

From the anecdotes I’ve seen the Cognitive FX centre programme is very high-intensity and involves physical activity for much longer than 10 minutes a day.

So yes, I would recommend you push through as opposed to only doing light aerobic exercise and plateauing without significant improvement (my experience the first time I tried exercise).

The first time I tried exercise I did the same thing as you – I did very light aerobic exercise for 10-20 mins daily and only noticed a slight improvement in tolerance and basically no effect on my general PCS symptoms.

I must warn you though that in the short-run intense exercise will make your overall PCS symptoms much worse so take that into account if you’re currently working etc. I’m a student and tried this over my summer holiday.

The first week or two definitely sucked because I was having a raging headache all day as a result of the constant intense exercise (my headaches before starting intense exercise were much milder) but the 2 weeks after that were like magic for me and I experienced rapid overall improvement in my PCS. But do take breaks every 2-3 days of exercise.
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Old 11-29-2018, 08:39 PM #5
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The program I am in has me exercise now until my heart rate is >110 and having symptoms. Symptoms are graded 1-10 (10 being worst) If my symptoms are 0-1 but only go up 1-2 pts then I keep going. If they go up more than two points OR symptoms last for too long (>20-30 min) after exercise it is too much. So shave off not time but intensity. Maybe 1/2 at full and 1/2 at easy pace. My PT had me start at 10 minutes on treadmill 2.2- speed, slowly increasing incline to level 3 over 10 minutes then last 10 minutes if OK at 0 incline and less speed.
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Old 11-30-2018, 05:30 PM #6
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Stoic, thanks for this. I feel that there aren't enough recovery stories on here, and it's really reassuring to hear something like this when in the midst of PCS. I'm 10.5 months in and I've been seeing ongoing improvement, but still have a host of issues. Your post makes me think I should try pushing myself a little harder than I have.
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