Hi all, I've mentioned before that I was diagnosed after my concussion as having oculomotor and vestibular problems - and was given repetitive physio exercises to do for rehab - which did help enormously with coping in supermarkets and similar environments, but I've never seen much on here about other people after MTBI being helped with this (though possibly it might come under occupational therapy?) Out of curiosity I've done a bit of googling on the subject and found this article - so am posting it, in case it helps to give someone else some leads or avenues to explore for their recovery. What bothers me is why sports physios have apparently been up on this stuff for years, but the average UK GP not so much - the simple intervention exercises I was given to do must be cost effective compared to leaving people to just cope on their own? So has anyone else come across this in their researches or from their own medics?
Post concussion issues : Hi all, I've mentioned... - Headway
Post concussion issues
amazing how I /we have no help with any of this .. thanks for sharing .. Sue x
Weird, isn't it? No wonder the concussion specialist sports physio the neurologist sent me to, was so matter of fact about my weird symptoms being just from a concussion -because coping in supermarkets and large stores was really very difficult for me originally, and I couldn't scan library shelves ( or any shelves for that matter) for books to read. I see this paper specifically mentions supermarkets.
yeah it was interesting to read .. I’ve just been left to me sorting out me as zero help was even offered regarding my head and neck injury . The only help o got was on my physical injuries like a bone in half 🫤 . I’ve now completed the shoulder problems with surgery and physio to now try and understand why my legs still arnt right , pain and unaware of it was brain injury or spinal damage .. 3 years on and now trying to investigate this part of my damaged bits .. MRI soon but will only do lower spine to start with as can’t just go straight for all spine and head because it’s leg issues .. yes could be right it may be lower spine but it was my neck and skull I broke so thought get it all scanned same time would have been a good idea … but then what do I know 🫤 sue x
Yes, you'd think they'd scan your whole spine, wouldn't you? Sounds rotten for you though Sue. Difficult to handle major bone issues alongside BI. I do wonder if they focus on broken bones, because the solutions are available, with more clear results.
Hugs and hope things get sorted out for you x
Oh bless you and thanks for your kind words… yeah bones are a lot easier then the brain and spine … and easy for people to see … get them working and left with the spine and brain .. having bad memory and multiple injuries just doesn’t happen in the medical world .. very despondent at the mo .. part of the journey I guess Sue 🙃
Sorry everything is rough at the moment Sue x
❤️
I completely relate to this! I paid a Neuro chiropractor in the recommendations of my regular chiropractor. He was the only person to properly examine me neurologically in 8months since the injury. He videotaped my pupils behind a mask and asked me to tombe my head etc. The pupils moved erratically and I was diagnosed the same.
I felt heard for the first time. Also he explained the swimmy feeling in supermarkets etc were due to the vestibular ocular system being out of whack. When people and shelves moved past me my brain didn’t know if it was me moving or them. It interprets this wrong sometimes and that’s why I was feeling like I was on a boat.
He also explained the balance issues and that the processing part of the brain is also in the same region of this pathway.
I have been given the same exercises and they are helping a bit. I think the fatigue happens because the brain is spending so much energy trying to make sense of all the information.
I have been appalled at the lack of interest and knowledge about this.
I am definitely more informed than any of my doctors but the quest to educate is real!!
That's really interesting W that you went via a chiropractor.The supermarket thing used to be so awful! Still don't love them. But early on, the only thing I could do was focus on a particular point and walk towards it, not looking at anything else, then once I reached that, I'd have to repeat the process.
do you also get the high pulse when you stand sometimes? This freaked out my physio who decided to refer me back to my GP for it. I think they just filed it under the “don’t know “ section.
But the chiropractor explained that part of the vestibular balance centre’s role is to prepare us for standing up and to tell the autonomic nervous system to constrict the vessels in our legs so we don’t drop our blood pressure on standing. The fact that we tilt our heads as part of our priming movement triggers this. When it doesn’t work the vessels are not primed and the heart has to pump faster to stop our blood pressure from dropping.
It’s usually not POTTS as this is quite rare but can be a frequent finding in post concussion syndrome sufferers.
That's really interesting Wanda - I didn't know about this, makes sense though. The other thing my physio worked on was graded exercise for autonomic nervous system issues, based on John Leddy's work with athletes in Buffalo University ( the Buffalo treadmill test/protocol). Interestingly my neuropsychiatrist didn't rate graded exercise for his fatigue patients though. The only thing was I think it did address becoming de-conditioned, but am also pretty sure it added to my fatigue. It did feel good to train and get fitter though. I think it probably was a good thing, because I could see that my pulse rate settled down and didn't react so weirdly to exercise with the daily practice. Apart from the initial treadmill test I had to do the daily cardio work on a stationary bike though, because with the ocular motor and vestibular stuff, I couldn't cope on a treadmill because my head moved up and down on it.
btw I just read the article (well as much as I could in one go) and was yelling YES! That’s me! It’s such a good descriptor of my symptoms.
My concussion specialist says there is hope that my symptoms will improve significantly but unfortunately he doubts I will be back to whole days in front of computers or speaking to people. But I still take that as a win.
Hi Wanda, yes, take it as a win, it is early for you yet. I was quite shocked at how good the description was when I read it.
If it helps, I improved dramatically on the physio regime ( where my initial recovery had already stalled) and though I was signed off during the early lockdown, I have still carried on seeing improvements year on year. Supermarkets still aren't my favourite places, but I can actually manage them now, and I can actually choose books off the shelf in the library, and enjoy browsing, instead of just virtually grabbing one at random as quickly as possible. Things are a bit harder when I'm tired, but I would never have guessed early on how much I would be able to do now, in a day or a week - to the point where I have a good fulfilling life.
8Hi, i find exercise helps but it has to be slow and non impact and no artificial bright lights or I trigger a migraine eg swimming in an outdoor pool with no.lights on an over cast day. I am.sorry I don't type or use screens much, I am worried by pip renewal and have been reading the posts above with interest, but screen making headache worse.
My tbi was a long time ago and I have to manage triggers for headaches and migraines, fatigue less of a problem, although when I have covid 3 times, it makes fatigue and brain fog asphasia worse and my recovery is slow from covid
I really like exercise and it also means that I can sleep for more than 4 to 6 hours per night, I just have to be very careful not to trigger a severe headache so excercise slowly with a blindfold or outdoors on overcast days and wear a broad brimmed hat and dark glasses. Supermarkets and hospitals the lights are too bright, there is a website called 'light aware' about 5% of people have severe lightsensitity, they say. Jarring impacts make head hurt a lot eg running, walking fast on hard ground.I did not have light-sensitivty or any migraines before tbi.
Hello Amber, really very sorry to hear how much you are dealing with on an ongoing basis. It sounds quite like my symptoms early on, but yours haven't gone away, which must be truly awful. I still notice lighting and background noise, I can cope better with them now, but will get fatigued very quickly in those circumstances - my mum really likes eating at a particular large garden centre, but the lights are difficult and background noise is huge, it's quite an energy drain.
Horrendous that you still have the migraines so badly, I remember mine only too well. I did still trigger them doing hours of paperwork for the residents association on the laptop very recently, so mine have not gone away fully, but at least I'm not triggering them all the time - I do most things on my phone now and keep the screen fairly dim. I didn't have the sound and light sensitivity before.
The first neurologist I saw wasn't a concussion specialist and the standard migraine drugs he prescribed all had pretty awful side effects - and didn't work. The second neurologist who did specialise in post concussion, said that if his team approach didn't work that there were different things, like Botox, to try for post traumatic migraine (which he insisted was not chronic like regular migraine).
So what worked for my ( constant) migraines , (but I appreciate may not for you) was the physio exercises for my oculomotor and vestibular dysfunction, manipulation of my neck by the specialist concussion sports physio ( some nerves in the neck skip the spinal cord and go directly to the brain apparently). Plus the graded exercise based on pulse rate -only exercising up to a certain fixed pulse rate that didn't exacerbate any post concussion symptoms. And for me also the prescribed duloxetine (which is prescribed for pain in fibromyalgia) which also helped - Though I do wonder if the other approaches would have worked on their own without the duloxetine. I did feel a bit more headachey when I weaned off it, but it was manageable by then.
As you've got a lot of visual symptoms, have you ever tried different lenses in glasses - like in the book 'The ghost in my brain' by Clark Elliot?
It's clear that each TBI has radically different outcomes, and timelines, but I do hope you will find something that works for you soon x
My neurologist said that the Melatonin I was taking to help with my sleep could be increased in order to help prevent the migraines that are increased since my own TBI.
I am the same in that I sleep better when I do gentle exercises but if I go too hard I make all my symptoms worse and really mess with my sleep.
I wonder if you already take melatonin? It might be worth a try
Very late noticing this post!
I was steered towards vestibular rehab only because I went to see a private practitioner who specialises in this approach.
It definitely helped with some of the more obvious issues so it is a bit of a surprise that it remains so marginal in the UK.
I found a lot of Canadian physio videos who coach this stuff, ice hockey injuries are a big problem there!
How has your recovery been going?
Yeah I have a lot of friends in Canada and they asked about physio immediately - one even went to one the day after a concussion. I didn't even know concussion physios existed when I first had this. I think it's partly the different structure of the healthcare system - I always had a lot more stuff like physio and dental covered by my work when I was in Canada. Nothing here.
Hi Stubble, massively better than I was, and largely manage to mitigate the residual symptoms - even if slightly annoyed to note that they're still there (see Pink Vision's recent l post on tips that help). I've made new friends and social circles, and the painting is going well (when I've not got the equivalent of writers block - can't blame that one on the head injury though!) The vestibular and oculomotor exercises were a game changer though.
Did you use any optokinetic videos at all?
I had private physio from a sports physio who specialised in post concussion ( Theo Farley) - referral from neurologist, on medical insurance
No I didn't, it was all paper based, but I know a Theo was trying to develope an app to help people with concussion
I have vestibular therapy, which includes stuff for my eyes, through the (NHS) minor head injury clinic in Sheffield. In my case I had to tell my GP the clinic existed - although it's a two minute walk from the surgery! - and I only get about four sessions plus assessment. It's been the best bit of that rehab as it's one to one, whereas I otherwise just have a few one-off group sessions on things like tips for fatigue management. I haven't had any ongoing OT support or neuropsych (though I'm on a waiting list for the latter). I had one private session with a vestibular physio but she was nowhere as good as my NHS one, who's seemed more like an informal OT.
I don't think these services are signposted at all well to GPs - mine has been supportive but commented that it's often difficult for them to find the stuff that exists.
Did they suggest using any optokinetic videos at all?
I don't know what that means I'm afraid!
Ah if that's eye movement - yes. Just not a word they used.
youtube.com/watch?v=kAPtu1W...
This is a typical session. Best viewed on a larger screen so the eyes have to move around more.. 😊
I'll have a look thank you!
Wow, that was interesting, made me feel instantly nauseous just on my phone...
Yea that's the vestibular re-training at work. I got used to it after a few sessions but I guess if it's unpleasant you might not feel like persisting.
Bit worrying for me that it's still an issue, though my rehab rather fizzled out over lockdown ( also the insurance company stopped funding it). I'll try it on a larger screen. Thanks!
I'm coming to the conclusion that we need to be doing continuous rehab work or things tend to slip and fatigue and other symptoms sneak back in again.
That's an interesting thought.
It shouldn't be so difficult to find help, should it? Glad your GP has been supportive though.
Definitely not. The whole pathway needs a complete overhaul. Then again I think this is similar in many fields ..
Hmm I suppose mainly we just know about brain injuries here. There's obviously some helpful / knowledgeable GPs out there, but much of my experience was utterly bewildering until a chance referral put in front of a different team which I could get to - but only because I was used to trains from being a commuter.
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