We all talk about similar symptoms and you'll meet people at your Headway meetings who understand what you're talking about. However I've yet to meet anyone who has one of mine.
It shows itself in busy visual environments such as large department stores and out walking with fairly busy traffic. I begin to feel detached from the outside and my perception of distance and time become distorted.
It's important that I self monitor, as if I don't stop and close my eyes I can have an absence, which can last up to 6 hours.
When I told my Neuropsychologist, I could see the look of doubt. My cognitive test showed normal apart from a slight concentration impairment and abnormal attention.
I'd hope anyone with cognitive symptoms will have done the Elevator Test and know it has five stages increasing with difficulty and it appears to be the simplest test.
However I only made it to level 2 before we had to stop as I began to have an absence. Neurologocal department meeting which included Epilepsy consultant (I'm on anti-epilepsy medication), consensus not connected to my epilepsy but a cognitive symptom.
I'm thinking of setting up a splinter Headway group called We Don't Even Understand Each Other (WDEUE).
Any other potential members?
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sealiphone
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I’ve not had any kind of cognitive tests done except the initial ones I had in the rehab centre, when I had trouble with one test I got quite distressed, so they discontinued it and at 6 weeks I signed myself out so there’s been no follow ups and as I am now retired I think they think I’m not using resources on.
How wrong they are, I’ve recovered, cognitively and for the most part physically so well, but it’s all my own work, no input from others apart from those I’ve sought out , and paid for, myself.
To go back to those episodes of feeling detached, I don’t have epilepsy, but I can experience that detachment, my vision changes at that time too. I am experiencing these less and less, usually when I push myself much too far and I am really tired, so I manage my fatigue much better now.
Kirk5w7, good to know you're your symptoms are less severe/controlled.
I've had mine now for 14 years, so it's really don't go to certain places and especially not when I'm tired, it's not connected with my epilepsy at all.
Can't say I'm pleased someone is out there but certainly interesting.
The downside if your symptoms are abating I'm sorry to say you can only become an honorary member.
lol, like the sound of your splinter group. get what you are saying, at first it appeared that no one had any of my symptoms... yet over my time on this forum, as i wander through other posts and responses, i have come across a few people talking about things that i identify with.
malalatete, everything ruled out by the consultants, so I believe they're correct.
Also I have other triggers, which bring on my symptoms. They all seem to involve attention and concentration, for example I struggle using a mobile to send texts yet I can use a keyboard to type this without any problem.
Recently I had to fill in my Nowcard application, this involved copying GP address and other factual information from original documents but having to attend between the two again causes my symptoms to come on. The positive side is I can usually have someone else fill in forms for me.
I'm now unable to go to a football match yet I can watch it on TV, again being there involves a lot more peripheral information to process, last time I went I left at half time because I felt dizzy and sick.
Before I mentioned a team meeting where we discussed my symptoms and the team including the Epilepsy consultant watched me try the Elevator Test, I also did two further test that aren't contained in the standard assessment, so I'm happy.
I have no visuals at all... by that I mean when I was stuck for words they suggested picturing the item in my mind and talking about it until either I located the word or the person I was talking to got it from my description/rambling...only we discovered I can't do that... there are no visuals. I initially was dreamless too but dreams have come back a little...but they are words and sensations but no visuals.
fruit - especially citrus and berries - tastes like rotten eggs when I start to eat it...After a while of eating this diminishes but happens every time.
Possibly my most unusual of all is that I cannot distinguish by touch if something is wet or dry...clothes and bedding feel wet to the touch and it caused all sorts of problems at first. Years down the line I have grown used to it and rely on my trusted husband to confirm if the laundry is dry
Hello. I realise this post is 2 years old. I’m quite new to this group and reading through loads of old posts and mostly not commenting but I was fascinated to hear you say about not being able to tell by touch if something is wet or dry. I have this too, I frequently think things are wet, the other day I was convinced my roof had leaked onto the bed, and often I think my shoe has leaked and my foot or feet are soaked. Yet they’re not. Other times I’m wearing wet clothes but haven’t realised. It’s so interesting to know someone else experiences that.
Also when I can’t think of a word, I get no visual or description to help, there’s just nothing. I wonder if these things have changed for you in the meantime? I hope you're as well as can be.
sealiphone i had a big problem with concentration so my psychiatrist arranged for to see the neuropsychiaterist, who after a chat and some tests asked if i would try vanafalaxine, i take 37.5mg in the morning and my concentration is spot on.
go and speak to your gp, sometimes a psychiatrist is better than a psychologist!!!
steve55, I've seen 2 Neuropsychiatrists and 3 psychiatrists, in fact I've probably used up more time than the NHS can afford.
Also I worked with the Neurological service for 4 years so lots of chats with the team, in the pub, I'm not medically qualified but I was providing legal advice.
As for my GP, totally incompetent, I currently refuse to see her, fortunately her partners are excellent but I probably know more than they do regarding a TBI.
In fact my GP, at the time of my first bleed asked me to teach him about brain injury, as my treatment progressed and he was a great GP.
One interesting that book comes to mind, given the subject matter, is Neurologist Oliver Sacks's The Man Who Mistook His Wife For A Hat.
I also have issues with distance both when out walking and in traffic as a passenger in a car. Its one of the reasons i haven't returned to driving. I don't have daily time lapses since my Bi but I am often surprised how long it is since things happened. I feel like I've lost about a year if that makes sense.
We DON'T understand each other, do we? (No offence meant at all, everyone on here has been superb since my little involuntary life-change 3 years ago.)
I've spent time over the last few months itemising the Physical/Emotional/Intellectual/Social difficulties I have, as a result of my SAH, not a pleasant task at all, but the inflexibility in the PIP assessment process tends to lead to the conclusion that, because you can sit in a chair, you 'could' work in an office. (Now I'm giggling at something I saw on the internet, where a person is not using a chair for its intended purpose, captioned "Nobody can tell you you're doing it wrong, if they don't know what it is you're doing.) Distractability went in the 'intellectual' section, but it does tend to overlap.
I get the sense of what you're saying about the sensory overload in some environments leading to a sort of 'freeze' state, my poor, long-suffering son has a range of 'distraction/focus' strategies when he can tell that I'm getting a bit 'vague.' (Most of them involve shouting at me, but it works, and is easier than the likely 'pushing a donkey up a flight of stairs' scenario we'd end up in if he DIDN'T repeatedly shout "What's 7 multiplied by 3?" at me as we walk over the motorway bridge, then trigger my anger, instead of my near panic, by telling me it's NOT 21, while I have traffic rushing around me in all directions, and I'm 'off the ground.')
Most people, especially people without brain injuries, can't comprehend how overwhelming certain environments can be, I have to bite my tongue a lot, when well-meaning folk tell me I 'should' go out for walks, join groups, meet up with 'friends' etc. I've become a hermit, because 'outside' and 'normal' environments can very quickly knock me on my posterior, if the vertigo doesn't beat them to it. "That might ease off in time.", said the Consultant Neuro-surgeon two and a half years ago... it didn't, I just worked out a million and one ways to cover it up, so I didn't spook other people with it. (I was almost completely blind for a few hours yesterday, the photocopier-dragon from my old office would have screamed, and phoned an ambulance, it's just one of my "Yeah, that happens sometimes." things.)
We absorb a lot, and we minimise a fair bit as well, because we don't like to make a fuss, after the usual NHS line of "You survived, some people aren't that lucky." (No slight on the NHS, they saved me, but they're a bit "What more do you want?" in my experience.)
I have 25 pages of stuff-that's-not-right-anymore, categorised, assessed against potential risk/impact on self or others, and then descriptions of the adaptations I make on an hourly basis. I do try to 'keep it light' on here, and mock myself a lot, but it's really not funny when you're wondering if you're now 'too blind' to be able to press the right buttons on the phone to call for an ambulance, because this episode is lasting longer than the last one you remembered.
I'm REALLY bad with photo-sensitivity, certain light patterns/reflections are not only painful, but also disorienting for me. I have a major problem with 'smells', I'm often to be found snuffling about the house like a demented blood-hound on a scent, because something smells 'wrong.' (That one's a nightmare on the old social interaction front, when I have to share air with someone who 'smells funny', I'm currently sitting in a T-shirt that 'smells of nettles', because changing it is just letting my head have its own way, give it an inch, and it will take a mile.)
The visual disturbances are a mystery to EVERYONE, my optician wanted my GP to refer me to neuro-ophthalmology, but my GP, and then the Consultant referred me to general ophthalmology (to do the same test the optician had already done... it's not a structural issue with my eyeballs, it's the damage from the Cerebellar Artery Aneurysm coiling impacting on the blood-flow to my retinas...) Most of the time there's a 'wobble' on everything, like accidentally knocking a magnifying mirror you're looking into, or standing at the side of heavy industrial machinery. When I have additional stress, or at certain points on my lovely lady-cycle, the visual stuff gets worse, floaters, 'threads', and blind-spots, it's REALLY inconvenient when the blind-spots join up.
The aphasia can be troublesome, I'm supposed to just substitute another word quickly, and move on, sometimes it doesn't work. "My back leg won't come with me." is now an in-joke between my son and I, from when I couldn't articulate that the sciatic pain had morphed into numbness, I doubt a 'medic' would grasp the meaning of "My back leg won't come with me."
My sleep pattern is knackered, as am i, my appetite might well be in lost property at the hospital after the first surgery, I'm very aware that I have cognitive lapses, but there's no predicting triggers for them, they still happen when I'm on 'essential functions only.' I can tell you the postcode and telephone number for every house I've ever lived in, but I usually make it half-way home from Tesco, THEN remember what I went in for.
I could go on, but I'm boring myself, now. We all adapt differently.
Gaia_rising (love the handle seems very positive), you're absolutely right ,you're mistaken if you believe you understand others because we've got a TBI.
I used to get clients referred to me by the TBI team, for help with benefit appeals. In most cases the patient/client thought the advisers they'd seen before didn't understand or believe them. I think all of them said "You'll understand as you've got a brain injury", of course I'm bound to tell my clients the truth so my stock response was "I don't even understand my symptoms but I'll try and understand yours whilst totally believing everything you tell me".
Everyone was happy with that.
By the way you mentioned PIP but the activity you described is in the ESA assessment, (I'm being a bit anal there!!). Also PIP is often paid to people in employment so work isn't a factor.
Reading your post suggests a PIP claim would be advisable and if you do it's essential you get help with form completion, CABs can be good at this.
Your inner world sounds something like mine before it settled down, at least now I can avoid triggers before my life felt like chaos, in fact the nickname for my AVM was "My little butterfly".
Looking at your profile it seems your brain injury goes back 2-3 years, if so plenty of time for things to settle down and strategies to be found, it probably took me around 6 years to get control of my life.
Thank you, it is PIP I'm wrangling with, and not ESA, I'm one of the 'trial' cohort of single-no-dependants who were streamed onto Universal Credit after coming out of work, I'm falling through a 'safety net' that's more holes than net right now. I wholeheartedly approve of your "I will believe you" approach, unfortunately, the PIP system seems heavily weighted on the guilty-until-proven-innocent side. I'm awaiting a tribunal date, as the initial application, and then the Mandatory Reconsideration were both not-awarded. There is a 'Welfare Rights Advocate' allocated to me, but we're both in limbo, waiting for the tribunal date. The 'chair' reference was due to it being repeatedly recorded in the DWP/ATOS evidence that I was "able to rise from a chair without difficulty on three occasions." (I'm assuming it was the fourth one when my leg went into spasm, and I had to stop, re-set myself, and start again, also, I'd lose my voice if I said "This is difficult!" every time I had to adapt a process, I've read some horror stories about other people having significantly more difficulty, and it being recorded 'without difficulty' on the reports.)
Without going all Disney-Princess on you, this is, indeed 'A Whole New World', the rest of the world has stayed as it was, if I wanted to pull out my maudlin-moody words, I'd say that there's a me-shaped gap in my life that I just don't fit into any more. (DWP and ATOS, meanwhile, are trying to bash a hamster through the star-shaped hole on the Fisher-Price shape-sorter, and hope it still runs, my experience of ATOS being that they'd give the ball a kick, and then tick the 'able to move 200 metres' box.)
I'm off-topic, I know, that happens a lot. I'm really pleased that you've been able to regain enough functionality to make it to where you are now, I'm just frustrated in myself that I used to 'be' something, and now I'm at the mercy of systems and processes that I don't feel are fit for purpose. (Back-story, I was a well-respected professional, responsible for, amongst other things, care-planning, risk-assessment, and complex case co-ordination, try doing that after three rounds of brain surgery, with everyone around you assuming that because you're at your desk, you're 'all better.')
I'll Gaia-rise to the next stage, whatever that ends up being, but, if WE don't understand each other, what hope does my 'work-coach' at the Job Centre have, when I have to keep reminding her that my left hand is essentially a seaside claw-grabber, and I can't work evenings, due to the cognitive fatigue? (Case-loads, I know, it's not her, it's me, she sees a woman who can read, and string a coherent sentence for the 20-minute appointments where she suggests I take a job as a bar-maid.)
I 'lag' every afternoon, by the evening I'm next-to-useless, because my brain has already done a full day's work by lunch-time, everything takes more physical and cognitive energy now. I don't want to 'put a downer' on the HUGE progress all of us have made, but, to return to your original point, if I understood it correctly... There doesn't seem to be a single 'universal' matrix for assessing our deficits. Why would there be? We're not 'universal', our impairments are very individual. We experience them differently, and describe them differently, this is not 'able to raise either shoulder (x) degrees, without (stated) difficulty.' Most of us fluctuate, good days and bad, and the 'test conditions', however sensitive, of medical environments (also the skewed-testing for PIP) don't provide an accurate reading.
I and my client's are fortunate, as UC isn't going to hit us until the end of this year. Having said that many people in the advise sector still believe it'll quietly disappear, much like Cameron's "Big Society".
I'm going to have to do some research on your UC PIP issue, as I can't understand why the activities have been change, I would have thought it'd be on the adviser grapevine immediately.
Having said that we're so snowed under with ESA & PIP appeals, perhaps we need to surface for air?
The medical assessment is a nightmare for people with a TBI in particular, as you're not going to get someone who as a clue about the condition.
A friend told when the Health Professional was handed a Neuropsychologist's report they said "I can't understand this", they then refused an explanation from the claimant because "I'm the doctor"!!
I meant to watch I Daniel Blake but quickly decided it was too much like work.
Regarding good and bad, or part of days should be averaged over an appropriate period of time and then if can be said you're impairment is there for the majority of the time, you've met that criteria, a diary is always a good idea, Tribunals like that sort of thing.
Repeating task, they have to take into account the effect of and performance after, so if you get CFS symptoms it questionable about how your ability has been assessed.
God, Work Coach, I know a TBI was thrown off a courses "Failure to comply", person has tourettes like symptoms and can't cope with 4 hour sessions with one short brake, result benefit sanction!
A good way to get a coach off your back is to do some voluntary work, to your abilities, they should see that as at least the equal of some useless course, designed by people who are incompetent.
My friend tried this and the work coach said "Better than any of the rubbish I can send you on". Psychology's always good the DWP workers, are human, and have Green and Red claimants, Green = nice Red = you can guess.
I get weirdness in crowded places too. Not epileptic-style absences. I am just very nervous when people are walking close to me, because my spatial perception is rubbish so it feels that they'll bump into me any minute.
I hate busy stations/streets etc, for that reason quite apart from the information overload from the noise, I find it hard to plot peoples paths now, and since I look like a fit healthy 6footer no one gives me space which I do understand but it’s hard work. I frankly am done for the day after that.
Me too! And it was dismissed as "social phobia" by the medics. But it's in perfect proportion to how fast the people around me are moving. A crowded train where everyone's sitting down is easier to handle than a bustling cafe. Which in turn is easier than a moving crowd on the London Underground at rush hour. I'm pretty sure social phobia doesn't behave like that.
Ah for myself a cafe I prefer not just because I like coffee! But I can chose to not go in, or at least prepare for it? Often it’s the noise that does for me!
Where as a train station I’m much more likely to get bumped, a busy tube for example is worse case, as not only am I being josseled as people move but I also my balance systems are working at 100% attempting to keep the everything in the air, my balance is hugely dependent of sight and being able to see the floor.
Yeah, this all sounds very familiar. I don't know how I'd handle a job that involved commuting every day on the Underground.
My symptoms haven't been pinpointed yet (total medical denial) but there are definitely issues with locating where sounds are coming from, as well as handling visual information.
You can't live in Lancaster, Manchester or London!! Although I'm surprised any road is less challenging, especially given what you said about busy places chime so much with me.
Regarding my awareness of absences this was unknown by me for over 5 years, as I thought I had memory problem, how do you know what you've done if your not recording memories? It only came to light when attempting the Cognitive tasks and arriving home 3 hours later than normal raised the question in my mind "What had I been doing?".
Yeah I live in london, on pavements people are traveling in all sorts of way, and possibly may just stop, roads are more ordered clearly still busy but less chaotic.
Yeah. I purposely avoid going out at busy times when I can help it, and I stick to the pedestrian crossings. Being close to fast-moving traffic (or objects or people) feels like that scene in Gravity when the space debris is hurtling towards your face.
Very grey area but anyone with such symptoms should definitely get personal advice about whether you may meet the conditions to be paid the Mobility element of PIP.
I'll definitely explore that when I have a diagnosis . At the moment I'm still in the "trying to get a diagnosis" stage. They've accused me of depression, medically unexplained symptoms (aka psych projection) and all kinds of rubbish. Once they write the magic words "brain injury" on my file, then I can start thinking of applying for PIP and everything that comes with it.
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. At the moment I'm still in the "trying to get a diagnosis" stage. They've accused me of depression, medically unexplained symptoms (aka psych projection) and all kinds of rubbish. Once they write the magic words "brain injury" on my file, then I can start thinking of applying for PIP and everything that comes with it.
What are your top tips for getting through Christmas after brain injury? 
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