As smartly pointed out from a previous post, here is a possible solution to people who have suffered a TBI and now have symptoms of dizziness, vertigo or falling over and strange balance feelings. You might have BPPV, a common occurrence when a person suffers a hard enough hit to the head which can dislodge tiny crystals within the inner ear which regulate the feeling of balance etc.
Here's a short 2 minute video on youtube which show how it works and shows a pictorial explanation for better understanding too.
Epley manoeuvre: ( or canalith repositioning procedure).
I was advised to do this a few times a day, I did them for a few weeks and my symptoms completely cured. Obviously other people may have more than 1 crystal stuck where it's not supposed to be so persist with it and it should eventually work.
If the YouTube video link isn't an option for you then here are the steps below. (Depending on which side the trauma is). Also, don't rush it, it's important to allow plenty of time for the crystals to move, taking longer waits between each step is also ok.
Follow these steps if the problem is with your right ear:
Start by sitting on a bed.
Turn your head 45 degrees to the right.
Quickly lie back, keeping your head turned. Your shoulders should now be on the pillow, and your head should be reclined. Wait 30 seconds.
Turn your head 90 degrees to the left, without raising it. Your head will now be looking 45 degrees to the left. Wait another 30 seconds.
Turn your head and body another 90 degrees to the left, into the bed. Wait another 30 seconds.
Sit up on the left side.
Follow these steps if the problem is with your left ear:
Start by sitting on a bed.
Turn your head 45 degrees to the left.
Quickly lie back, keeping your head turned. Your shoulders should now be on the pillow, and your head should be reclined. Wait 30 seconds.
Turn your head 90 degrees to the right, without raising it. Your head will now be looking 45 degrees to the right. Wait another 30 seconds.
Turn your head and body another 90 degrees to the right, into the bed. Wait another 30 seconds.
Sit up on the right side.
Good luck!
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TBI_Friday
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For me, my injury is on my left temporal area above my left ear, so naturally I followed the steps above for "problems with left ear".
Thanks 'Friday'
Here's a couple more videos about the vestibular canals. You'll see that the crystals are not really a problem in themselves it's that they are supposed to be in other parts of the vestibular canal system.
Whiplash and sudden impacts from head injuries can knock the crystals out of position. The rotational exercises you have been explaining help to get them back in place.
I used different exercises involving repetitively moving my head in the three planes, 20 times each way and that solved the problem too.
There are different techniques that do the same job.
The thing that complicates this issue is if you have visual problems as well because if the part of the brain that controls eye movement is dysfunctional the eye test won't work. To counter this you have to do eye exercises as well (vision therapy).
Vision therapy and vestibular exercises in combination are now routine in private rehab. My GP and neuropsychologist had never heard of any of these techniques. This may be why so many people don't get told about it.
After my accident I had BPPV on the left side I was lucky enough that the physio picked up on it during rehab and she did the epley manovere on me and it made the world of difference I was even having dizzy turns at night when turning in bed, how you've explained it to be able to do it yourself is great the epley really does work
I find it bizarre that NICE gives guidance and some health authorities provide home practice sheets but none of the doctors I've seen have never heard of it.
If NICE gives guidance and if some health authorities publish these techniques people should not be afraid to try them. There's nothing wrong with helping yourself.
Northern Ireland so NHS,I had my accident in Devon at my son's and was intubated and taken to Derriford, when I eventually came back to Northern Ireland my dr wanted me checked out so he referred me to the Regional Aquired Brain Injury unit in Belfast and they were great reteaching me all the things needed to live alone,that unit is excellent
Wow, the brain injury unit at Musgrave sounds amazing, state of the art with all the expertise and treatment in one place. That's what it says on paper, is it like that in real life?
It really is ,everything is there all in one place and they go out of there way to help .I was doing my final meeting with them and sign off when I said that I'd had a couple of dizzy spells when gardening they said they'd book a physio appt and she diagnosed BPPV and did the epley, I was lucky that unit is solely centered on brain injuries so goes out of it's way to help you put yourself back together again
That sounds brilliant, thanks for letting us know. Wish all health authorities did this, it's just common sense.
Was reading a little bit of the history of this unit. It was formed in the early 2000's and was an improved version of the old one at Musgrave. There seems to be a much higher awareness of the impact of brain injuries in NI, maybe it's because of the injuries in the 70' 80's and 90's before the peace agreement.
Part of Musgrave park hospital had been a military hospital too during that period I'm not sure if the brain injury is built on that side but it would make sense, I think you're right about more acceptance of brain injury here I've read the issues people have with PIP on here I had no issues with receiving PIP
Don't mind me butting in..Musgrave sounds like a solid place to get decent care. I left DMRC Stanford Hall in England with zero advice, suggestions or support once they'd diagnosed me, just a bit of paper that said "we diagnosed you with this, this and this" they just shoved me back into work. Subsequently I was shortly fired a few weeks later from my job due to poor/unacceptable behaviour which to this day I still argue is a result of my brain injury considering I'd never behaved in that manner before (and yes I'm a sucker for wanting to learn everything so I spent weeks digging on the internet). Sorry for venting, I got made homeless as a result of the decision to fire me and I've had to relocate overseas for now, literally just to survive. I've checked and I don't qualify for PIP as I'm now outside the UK, EU and other supporting countries. I've emailed repeatedly for disability benefits but again..outside the EU so nope.
The thing is with me what I found was in the early period when you were meant to be getting rehab if I did which I'm not saying I didn't in the early days afterwards your brains a sieve not a sponge which sometimes I dont think they realise so they think everything is ok when it isnt,when I returned home my dr referred me to the unit which was when I was starting to take things in so it was good and they understood those things its probably the same with you the things you did were because of the brain injury not you as a person, I hope things will soon go well for you best wishes
Agree, the PIP assessments and awards are a nightmare for a lot of people.
I only had a problem the first time I applied. They kept cancelling appointments and then told the DWP that I had not turned up. I went to my MP and he investigated it, it turned out the PIP assessment center had been shut down for months and the PIP assessors, Crapita, were telling the DWP I was failing to turn up. My MP went ballistic because he was getting loads of complains about the same thing.
After that I had a groveling phone call from a DWP manager and was also awarded a few hundred quid compensation (I didn't ask for it).
I did have another issue later when they said I had no points but this was easily solved.
A lot of people could get though the first appeal as long as they have the medical evidence that diagnoses a brain injury, neurological and sensory processing problems. If people pointed out that the assessment only include psychological and physical dysfunctions but did not assess neurological and sensory conditions they would be awarded PIP without argument.
If the DWP did argue all someone would need to do is send them a copy of the statement Gillian Keegan made in parliament on 2/12/2021
because if it was followed up to find the particular details behind the statement it says the DWP assessment process is not fit for purpose for assessing people with brain injuries.
If that fails, say you will take all this to your MP to solve the problem.
Because of the statement to parliament the DWP don't have a leg to stand on and the award will be given.
Sorry Jodac, thought I write this out in case other people read it.
As long as people have medical evidence to say they have a brain injury, then they have to award PIP because neurological conditions are not assessed and the statement to parliament backs it up. It's an official government document saying the assessment process is not fit to assess people with brain injuries and your MP should support you based on that. You can't lose.
No Pinkvision you are always the one with wisdom, I know I've been very lucky in being able to do my rehab where I did and with Pip I simply handed them my hospital exit letter it's all there in black and white,why people have to appeal and go to tribunal is beyond me it's not as if we want a brain injury!!
For me it was in UK, I was sent to DMRC Stanford Hall, the neurology dept there picked up on BPPV straight away, they literally know everything about everything and leave no stone left unturned and are extremely thorough.
Yes, ridiculous amounts of money shoved into building it. While I was there they said they were building a section for the public too which I saw, but doubt it'll be finished any time soon.
That's interesting. The military used to have their own healthcare, I was in the army in the 1980's, I remember getting injured and was sent to one of their hospitals in Aldershot at first and was then transferred to Woolwich in London for more treatment. All the military hospitals were then shut down in the 1990's as part of the Tory government defense cuts. The military then had to use the NHS.
After Iraq and Afghanistan where the most common injury was TBI they realized there was a failure to diagnose and treat these people in the NHS (it could be because the NHS was also being cut to the bone). Oddly the US military found the same thing, that their 'civilian health care models' were failing to diagnose and treat their service personnel after TBI. In 2022 the US military decided to switch from mainstream healthcare models and adopt the independent healthcare model instead, these use what's called the functional brain injury paradigm. They use different diagnostic techniques (DTI and DTT brain imaging technology) and different treatment criteria.
I'm wondering if the UK military are following suit and have decided to start their own healthcare again.
Yeah DMRC Stanford Hall became the replacement rehab/med for Headley Court a few years back, I thought I was pretty banged up after my TBI but believe me I seen a lot worse guys in there. Can agree somebody somewhere is paying an interest in decent healthcare at least.
Reading a short history about Headley court and Stanford. When all the military hospitals were closed in the 80's Headley remained operational because the hospital itself was not owned by the gov/ military. It had been bought originally by RAF pilots and crew after the second world war. It was staffed by military Dr's etc and also civilians employed by the facility itself. Then it was sold in 2018 after they bought Stamford to upgrade the rehab services.
It seems it's not owned or run by the gov/ or military but it seems to be some kind of a partnership but it is an independent entity in it's own right.
Sounds about right, wouldn't even surprise me if Sodexo owned it 😂 literally all MoD bases are becoming civilian-owned and ran, hence why the food is even worse 😂
😂 I didn't even know it was French, but from my experience Sodexo food on the UK bases is definitely not even edible! Was always half cooked chips and questionable veggies, hell even the chicken goes "moo" when poked with a fork😂
I had the same monuvor by the specialist physio it made me feel a little off for 24 hours while the brain readjusted but along side the exercises made a real difference & it worked for me
You mention vision issues being a complication. I agree. I didn't think I had 'vision issues' because I could still see, but I struggle with a screen, reading a book sometimes, and my eyes tracking - but I haven't lost vision. Actually that's all part of the complication!
Alongside BPPV, there can be other things at play - my physio at the Sheffield minor head injuries rehab unit has been fab with this, but it was a long while before I saw her. She also thought BPPV for me (that seems to be a common concern for people post concussion) but I didn't come up via the Dix Hallpike as that really being a big issue and so the Epley manoeuvre didn't really help me.
A few other things (in my case, and definitely not medical advice), just in case they're useful for others:
- damaged vestibular-ocular reflex. I don't fully understand this but I believe it's about the information flow between what you're seeing, and how your body feels, not being right - eg when you're on unstable ground. My physio has me doing some stuff in this space. I also feel wobbly when I'm looking at rushing water or visually busy things like that (not sure if that's VOR or something else).
- possible muscle / nerve damage around the eye.
- POTS. I've been diagnosed with this post-concussion and it strikes me as odd that it doesn't come up more often in discussion. Obviously not everyone has it at all, and a lot of people have it post COVID (I'm not sure if mine was post concussion or post COVID and then the latter made it worse). But that can cause feeling lightheaded, dizzy, etc when standing upright, and in my case, notable exercise intolerance that goes beyond the effects of fatigue.
- fatigue seems to worsen this in my case, as does my period. So all of this, in my case, means I can get a feeling of vertigo and dizziness even though I don't score up high for BPPV.
Would always suggest a good physio who knows about brain injury for this stuff, but totally appreciate that access to them is patchy (and the private one I saw was actually much less good than the NHS one I saw via the rehab unit).
POTS is heart related, you can easily get tested. I was sent to cardio to test for this, they put on the wires around your heart area and get you to lay down, then get you to get up and do exercises, ie squatting, bending over and straightening up. The cardio said my symptoms were not related to tachycardia.
The symptoms I had was fatigue, passing out, gastric reactions, stress, hypersomnia.
It turned out to be caused by visual processing issues. As soon as I got my first pair of glasses from the optometrist all the symptoms except hypersomnia reduced dramatically.
Then the cervical/ vestibular/ ocular issues became more prominent and I just did the exercises they show on YouTube along side more visual treatment for a couple of years and they were all sorted.
We are all different and the root causes of our issues will also be different. The complicated thing is that so may of these syndromes are very similar to each other.
I found that after getting optometry/ lenses etc all the other symptoms became much easier to identify and fell like dominoes with different types of rehab.
I still have visual issues to this day, but I've learned to live with them, all the really awful stuff has been sorted. I have no cervical/ vestibular problems at all now.
Yep fair. Realise there are risks in extrapolating from one another's experiences too much, so I share any of this with a big pinch of salt. I just mention POTS because for me it can sometimes be hard to tell if I'm feeling peculiar when I'm upright/exercising because it's POTS, or vertigo, vestibular migraine, fatigue, eye stuff, or whatever else. And tbh I haven't found any easy fix for any of it yet. I kept raising it with folk and being told it was just fatigue (probably a standard experience for all of us I expect), and it wasn't, and I fear others also not being diagnosed because they don't know about it. But def nice to be able to share experiences. Glad yours have improved in some facets at least.
You say the Epley and other method did not work. That's good to know because you can rule it out.
The interesting thing about the CVO reflex is that it is a convergence of three peripheral sensory systems (it has nothing to do with the brain, these are peripheral nerve systems not central ie brain systems). They all act on one another automatically so you can maintain balance and spatial awareness.
So if the Epley maneuver had worked then your problem would have been caused by displaced crystals in the vestibular canals in the inner ear. This is a physical injury to the body, not a brain injury.
The other two parts of the reflex are eye movements the ocular part (not vision itself) and head movements - cervical.
You've ticked off the vestibular in respect to crystals in the canals, the next phase should be to do eye movement exercises and head movement exercises to see if these are causing the problem.
You may want to ask your physio about this.
The issues could be muscular or neural in respect to the peripheral nervous system. All these nerves are cranial nerves not the brain.
The interesting thing about peripheral nerves is that they can repair themselves if prompted. You may know that most brain injuries cannot be detected by CT and standard MRI scans. But they can with DTI and DTT scans. An interesting thing is that DTI and DTT have been used to find axonal injuries, the main cause of most TBI's.
DTI and DTT have also been used to investigate damage to the cranial nerves and low and behold when CT and standard MRI scan found no damage to the cranial nerves DTI and DTT did.
Because peripheral nerves can repair themselves if prompted you can repair the CVO nerves through intensive exercises (these prompt the repair).
so it may not be known in the nhs system but private providers have done the research. I even did it for real as part of my master's research. It definitely makes a big difference. Intensive mixed whole body exercises for at least an hour every day for three months. That's how long it took me and it's a life changer.
Psychologically it's really messy in the first couple of weeks but if you've got a strong mind and you know that all the weird effects - body changes, flashing random imagery and racing thoughts - are just caused by your body getting realigned and the nervous system is rewiring then you'll be fine.
Thanks, this is helpful. I think that might be what my physio's doing actually (I've got head movement and eye tracking exercises, and something to do with strengthening my muscles to stand more stably), I just struggle to remember her explanations for the rationale behind them. Main barrier is that fatigue is making it really hard to do the physio, but I think what she's given me makes sense. Fingers crossed should help.
It takes time buddy, I've gone through it myself. After I learned about the Epley i would do it 2-3 times a day for a solid few weeks before it subsided. Unfortunately it's not a "do it once and you're fixed" thing. Even if you don't do the Epley the vertigo will eventually stop as I've been told by neuro-docs that the body apparently absorbs the crystals or they eventually snuggle back to where they supposed to be.
Doing the Epley manoeuvre just assists with getting the crystals back to where they belong so your vertigo/balance feelings are correct again.
When doing the Epley it does actually force the vertigo sensation to happen, this is normal. If you can..try sleeping on a different side, but done worry about it too much, the BPPV sensation (for me) lasts like 10 seconds.
Sleeping on a "bad side" that causes vertigo won't make much difference in undoing the epley progress (if that makes sense), just do it a few times a day and it will eventually happen.
I’ve has epley down a couple of times and it does improve although it can return every so often and my balance is still not good . I am having balance physio for that so hopefully it to will improve Sue 😊
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A few more TBI facts; neurological, physiological, psychological.
Have you experienced any problems having a sight test?
Help me please 
Does anyone have a similar experience that could help lead me and help me understand what the future holds??
