Post concussion treatment guidelines.

[pinkvision]

Found this article for treatment of post concussion syndrome (it would apply to mild to moderate stroke victims and other forms of BI too). It says the methods used currently (health service) are useless. The model highlighted is the typical American one which takes into account neck injuries, vestibular and visual issues.

fowlerkennedy.com/wp-conten...

[Painting-girl]

Hi Pinkvision - those are the types of treatments I had from my physio in London, including the exercise based on Leddy' s work in the States.

I think the oculomotor exercises he gave me to do helped greatly with busy environments like supermarkets - they don't make me want to throw up anymore at least ..... But I still don't make a habit if going into them if I can help it...

Headaches reduced massively too - some of that definitely down to the physio.

Was also put on duloxetine and psychologist appointments at the same time

I'm not totally fixed at all - fatigue still needs a lot of management, but did improve sharply over seven - eight months after I'd basically hit a pretty low plateau at about eight months post injury.

I did get really fit increasing my heart rate up towards my maximum too. But it did contribute directly towards my fatigue levels (cognitive and physical bi-directional i.e get physically tired and it has a knock on impact on cognition and vice versa)

The only drawback was that it did take a lot of effort ( I had to go to London) and it meant I didn't find my baseline for fatigue ( i.e. what activity you can do in a day without triggering fatigue) actually until lockdown this year. It's clear my baseline is massively lower than I'd ever realised. So I've only begun to get fatigue free periods since the first lockdown.

Plus I was lucky it was covered by medical insurance.

On balance - would I do it again - I think so yes - but have lingering doubts that not getting my fatigue under control sooner wasn't necessarily a good thing . On the other hand the combination of physio, Duloxetine, and therapy and fatigue management, did put an end to the constant headache, and the migraine like ones. Still get headaches if I overdo things - like writing this post... and I haven't returned to work...

Jen x

[pinkvision in reply to Painting-girl]

Try behavioural optometry, it worked magic for me, no more fatigue at all and cognition really good now after repetitive exercises to build up automatic function. Vision is the biggest user of brain energy and loss of automatic function is the second. I do have to wear coloured filter lenses in sunlight though and totally avoid LED lights otherwise the fatigue would be back and everything would slow down again. Think this is as good as it will be and I've adjusted to it and carving out a new life.

[Painting-girl in reply to pinkvision]

That's really good to know Pinkvision. Really glad for you - good to hear about a successful outcome too 😊👍

What are your energy levels like then compared to pre injury? And can you avoid 'overload' now?

I think a certain type of older fluorescent light is the killer for me ...

What sort of exercises did you do?

I found that I could pretty much make myself want to throw up by moving a pen up and down in front of my eyes!

Jen x

[pinkvision in reply to Painting-girl]

Energy levels are as expected for my age I guess as long as I stick to the rules, avoiding indoor lights, noisy places etc. Only managed to start exercising this year almost 3 years after the accident, can walk for miles, up mountains too and cycle. Balance and coordination pretty good. Had loads of nerve damage, C6, C7 and C8 nerve root damage in spine, damaged median and ulnar in bracial plexus and ulnar at elbow, had elbow OP. Really weak arm through out and 70% strength and movement in 3 fingers. Have done as much physio as possible, going to give indoor climbing a go next week for all round body strength, just a bit of bouldering to start. Any bouncy exercising is a no no, gastric system is a mess but manageable with right diet but gets bad with jerky movements.

Have started retraining in academia via a part time masters from home in 'mindfulness based approaches', had great success with a DIY model that really improved my cognition via meditation and repetitive exercises and I'm putting it together for my thesis. It has to be proved through the Buddhist psychology model first and then through the neuroscience aspect. It fits though as far as I can see and will be totally new. I can't believe no one has seen this before because all the evidence in the science journals point to it, a meditative plasticity method. The evidence comes from a variety of schools of thought that never really come together, they are in competition with each other. Will see how it goes.

[Painting-girl in reply to pinkvision]

You're amazing to be so active after so much damage! Congrats on being so determined, it can't be easy.

Your research sounds really interesting too. I meditate most days, and still do the mindfulness body scan practice from the MBSR course I did before the other rehab.

[Painting-girl in reply to pinkvision]

What happened to you - it sounds as if it was pretty bad?

[pinkvision in reply to Painting-girl]

Got rear ended in a car crash, had to break hard and the van behind did not see the sudden stop in traffic and ploughed into the back of me. Was over the steering wheel because of the sudden breaking and got shunted back into the seat, the shoulders and back of the head got the impact, as it was worked out to be like getting hit by a one and a half ton seat at 50 miles an hour. Thank god for the padding.

Post concussion syndrome, non acute, functional brain damage. It's possible to redevelop this kind of damage through vision, vestibular and cognitive therapy. As long as the neurons are alive they can be stimulated to make new connections.

[silverbirc in reply to pinkvision]

Hi, how did you access these therapies? via NHS? GP referrals?. I'm just investigating now . Post concussion syndrome. Accident 4 months ago. Advised it will be slow recovery and need to pace. Eyes, head hurt. nausea and dizziness. Am keen to look into the therapies you mention...

[pinkvision in reply to silverbirc]

These are from Canada, the UK health service is about 30 years behind the curve with PCS. If you want to help yourself look up 'The Mild Traumatic Brain Injury Workbook' by Douglas J Mason. The main aspects of recovering brain function, improving memory and learning and increasing attention span are in there. For visual aspects, if you have any, look up BABO for behavioural optometrists. For info on optometry see 'John Glover, Stockport' web page or 'The mind eye institute, Chicago' or the Padula Institute, US.

4 months may be a little early to start serious recovery, depending how bad you are, but avoid bright light, especially LED, screens etc and noise and busy places. The NHS don't have much in the way of real techniques for recovery but take what they offer and look for private or DIY methods on the web. You may find yourself a little shocked when you find out the difference between US and Canadian care compared to the UK. In the UK it's a bit of a lottery depending on your health authority and GP knowledge, some people find treatment but for most with PCS it's a bit of a horror show.