Which symptoms were you not told about?

I need your input :)

I'm planning on publishing some booklets next year. They'll be full-colour booklets with artwork. The focus will be on the symptoms people can expect after brain injury, but I'm particularly interested in the effects we were never informed about.

As an example, I posted something on Facebook about aphantasia - the loss of visual memory/imagination. Somebody commented "I didn't know that was a symptom of my brain injury! I thought I was going mad!"

Slightly different but related: I only found out a few months ago that I'd sustained a brain injury in 2005. The factor that really pinpointed it was an absurdly specific visual problem that I read about in Clark Elliott's book, The Ghost In My Brain. I can find nothing online about this particular problem. Something is definitely wrong when vital information is so buried.

So which symptoms were you surprised by? Bonus points if you were told "That can't be happening" or "That must be psychological".

Thanks enormously,

Lia

35 Replies

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  • Hi Lia,

    This is all very new to me so appreciate someone further along their journey may have more valuable input. One of the initial symptoms for me is what I described as a 'fog'. That and feeling like I had been drinking and felt sober until entering a room of totally sober people. I went to my GP explained the 'fog' and fatigue. Initially he said it was General Anxiety Disorder. He said 'fatigue' was 'tiredness' and the 'fog' was 'lack of focus and concentration'. I told him that his diagnosis did not feel right, nor address all of my symptoms, plus I didn't have GAD symptoms. Thankfully, seriously thankfully, my speech then totally deteriorated. I went back to the practice and a different GP sent me straight to the Acute Medical Unit where I was kept and observed for twenty four hours. Now, thanks to my dodgy speech, it is been investigated and I am awaiting a referral to neurologist and rheumatologist. Unbelievably, to me, they are still only investigating 'dysarthria', the one thing they can 'see' for themselves. It feels like to me, if they can't see it, in your ten minute appointment, they don't follow it up and if it doesn't fit into something common, they shoehorn it to uncomfortably fit. Lia, best of luck. I am so happy that someone is making sure this information becomes available.

  • You sound a lot like me. Fog, the weird drunk feeling and fatigue were my first symptoms, and they got me shoved into psychology with a depression diagnosis that really didn't fit. I spent more hours than I can count arguing with therapists. One of them put the word "symptoms" in quotes because she didn't think they were real, and I'm pretty sure the others felt the same but weren't so bold about it. Thankfully, I also have symptoms they can't argue with - visual symptoms - and those are finally getting noticed now.

    Thank you for the supportive message. I'm going to need community input on the book when it's done. I'd like to publish it as direct anecdotes, so it doesn't simply feel like a personal project. Maybe you could expand a little on what the fog and fatigue are like?

  • Thank you very much. I would be happy to. I made notes at the time that I will go back over. The 'GAD' doctor also said that, 'Any other symptoms were psychosomatic' that I was making them manifest! Very frustrating. I hope you are having more joy now.

  • That's incredibly helpful of you :)

    And yes, I'm about to get a neuro-optometric assessment for the visual stuff. From there, I can probably wangle my way into general neuro rehab. It's a convoluted pathway, but necessary when your GP is a bit of an idiot.

  • It's a minefield, Lia, and while ever we're still getting brushed off with "Well, at least you survived!" responses, it's not an easy path to tread. I think that 'insider' information is the only way the message is going to get out there. Our GPs aren't neuro-specialists, and the routes into neuro aren't always straightforward. (Just had a letter from my GP to say they'd tried to book me into opthalmology, but there were no appointments... I don't NEED opthalmology, there's nothing structurally wrong with my eyes...)

    For me, the very hardest thing to come to terms with, after the physical and cognitive fatigue, was the inconsistency, I'd be able to go into a supermarket one day, but the next, the lights, and the noise, and the smells would floor me. I likened it to that stage where you're just coming down with a virus, and your body is so busy fighting that that it can't 'do' anything else? Simplistic, I know, but, for me, my brain was still repairing, still 'busy', and sometimes it couldn't 'do' something it had been able to do the previous day, or week.

    I lost my ability to 'hold' numbers, which was incredibly disturbing, as my general recall was fine, and I could still remember the telephone number for every house I'd ever lived in, but couldn't punch in a phone-number someone had just told me, even if I tried to write it down, I'd transpose digits.

    The elephant in the room was the anger, the ex kept telling our son "Don't upset your mother!", but didn't realise that every single thing he did was grating on my nerves, because I'd just leave the room to avoid arguments. That was really hard to deal with, some of it was the over-stimulus to my recently stirred-up brain, but some of it was me blaming myself for not being able to cope with his unreasonable behaviours. (Yes, I was unreasonable, too, but more in a sharp-exhale-and-leave-the-room than a leave-dirty-socks-on-the-sofa way.)

  • Yes, I'm awful with numbers now. And I used to be excellent at maths.

    A few weeks ago, I told my GP to book me in for a neuropsychological assessment. She referred me to a memory clinic because it was all she knew. Luckily, the memory clinic phoned me to say I was wrong for them. I asked them to refer me back to the GP and recommend neuropsychology again. Hopefully she'll bother to look the word up now it's coming from a more "trustworthy" source. It's ridiculous how devious and scheming we need to be, simply to get our needs met.

    So that's another booklet I'm planning: what your treatment options are. I won't shy away from telling people to change GPs if theirs is unresponsive. There's another strategy I'm considering - speaking to the specialist directly and getting *them* to ask the GP for a referral. If it works, I'll put it in the book as an option.

  • some services can self referral. or each department can referral on.

    about 6 months on realised my walking hadn't improved. The GP referral me to the falls clinic, who looked at my file and said no you need Nero physo and did the Referral there and then.

    But yes struggling though the serices is difficult even if your not got a brain injury!

  • My lack of memory prevents me from being very helpful with this project methinks... the range of effects of my BI seem never ending but when they are not happening or not mentioned they cease to exist... and so I am often surprised by them...time and time again.... and yet I almost have a book of my own of filled with BI induced experiences.

    BI truly is the gift that keeps on giving ;)

  • You're helping anyway, by being supportive. :)

  • To be brutally honest, virtually all of them. I was pretty much left to my own devices when I was discharged. Though being in a German hospital made it virtually impossible to explain anything to me at all.

  • Bar a headway leaflet which I was given along with my discharge notes I don't recall being told any thing.

    That's not to say that someone might of explained but that period is a very wobbly wobbly hazy period! I still now find out things that I hadn't realised.

    I initially though nothing was wrong for first few months, and focused on the skull damage rather than brain. In fact going to neurophysiology mk2 in a bit due to that.

  • Personally I am frustrated by the very generalised time frames medics throw around, in the early days I kept being told "most people feel better & notice improvements after two years". This information was imparted at the time I could barely understand the implications of what had had happened to me, yet alone the short term & long term consequences. It felt like everyone but me knew my life had change irrevocably & when nothing had changed after two & then three years, I felt cheated all over again. Nine & a half years later I am still angry & still experiencing physical & mental symptoms that "usually only last months after the trauma". A huge side problem from this is the standard literature produced by the "experts" is read & used by employers, DWP, & other medical professionals when they make decisions which affect our lives. It's difficult to explain (& be believed) that my daily nausea is often so intense I fear I'll pass out, when the accepted wisdom is that such symptoms only last months.

    CCxx

  • Exactly. I wonder who produces the literature and how we can influence them. I think the next Headway campaign should focus on informing GPs about the current state of brain injury research and treatment. General neurologists would also benefit, and so would most non-specialists in semi-related fields like psychology. But GPs are most important because they're the initial gatekeepers and information providers. When they use outdated information to block our path to specialists, it causes real harm.

  • Very true, Lia.

    Whichever one of the three GPs I see to extend my sick-note tomorrow, I know I'll get the "Are you feeling a bit low, a bit weepy?" question, because 'depression' is 'easy' to treat. (Except if you're like me, and the SSRI-route doesn't have much impact, because it's not 'really' depression...)

    I'm not depressed, I'm grieving for what I might have been if my brain didn't decide to explode. I'm burned out, because it takes Oscar-worthy skills to 'act normal' sometimes. I'm fully anticipating a prescription being offered tomorrow, with a 'see how you go on these'... I'll have to trot Little Miss Tenacious Cowbag out, and explain that my brain is physically damaged, altered, and that the additional measures I use every day to try to cover that have worn me out to a level where I'm not actually functional, so need some 'down-time' from work, to try to re-focus.

  • I'm with you. Nobody sees the coping mechanisms. People see the words that come out of your mouth, but not the long, exhausting journey that the words are an end product of. And not the more accurate, articulate words you would have said when your language centres were operating properly. (Perhaps this is more specific to me?)

    I once got a diagnosis of "atypical depression". It was so hard not to spit out "It's atypical in the sense that it's not ****ing depression".

    And yeah, it's annoying to mention burnout and have people treat you as if you're bonkers because your work is "easy".

    I'll be gritting my teeth for you tomorrow. I really hate all the current "depression awareness" campaigning. Yes, it needed some consciousness-raising, but it's become the knee-jerk diagnosis for every medical mystery. (Okay, that and anxiety.) What's worse is that you can't disprove it, and any attempt is seen as "denial". It's like an awful modern religion.

    Lia

  • I'm a curious combination of back-factors, and current chemicals, throw in the re-wired brain, and nobody really knows what to do with me. I have, historically, had depressive episodes, which is why I know that this isn't one, and how I'll know if the old Black Dog starts chewing my sofa-cushions. (Which aren't straight, which is tipping my head, I wouldn't have cared 'before'.)

    I don't think anyone would say that my job was easy, it's recognised that I had some massively useful critical-analytical capabilities, and people just accepted that I wasn't there to drink coffee, or chat about TV. My 'off' behaviour, and linear-analytical skills were just 'me', I'm not a particularly sociable creature, I wasn't before the BI. I'm now in the uncomfortable position of admitting that sometimes, I can't do that job, which is an enormous thing to process, having thrown all of my heart and soul into it for over a decade. I can argue all I want that it was effectively three different people's jobs, because when staff weren't replaced, I absorbed their workload, but the fact that I carried on for so long without actually spitting the dummy out of the pram hasn't done me any favours.

    We'll just have to see what happens next, I'm on the edge of being made unemployed, and, although I know I'm not unemployable, I'm going to have to be careful about what I do next. I'm not going to apply for anything involving nuclear launch codes.

    To link back to the original question in the post, another thing I wasn't told was 'how' to go back to work. I took a four-week sick-note from my GP, who had to look at MY copy of the discharge note to see what the surgery was. After that, I had a fit-with-adjustments note, but the adjustments were only ever reduced hours, not reduced workload, unsustainable, so I was back full-time a couple of months after emergency brain surgery. I'd like more cohesion between hospital departments, and actual communication between hospitals and employers. I wrote my own Risk Assessment and Care Plan something like six weeks after brain surgery, and work never thought to question it, or check with anyone, because Risk Assessments and Care Plans were one of the roles I performed.

  • I identify with what you are saying although your brain injury seems more 'significant' than mine. When my symptoms began, I was in a much 'easier' job than I have ever had. Previously I taught then held education project management jobs for years. After one fixed term contract after another I made a decision to seek stability and started at the bottom of another industry. Basically, I take minutes, pick out the pertinent decision making and then put it in a format and share in given timescales, same task, repeated. When my symptoms set in I realised I couldn't do that job effectively. My plan, supported by my manager had been to get through probation period and look for progression- what now? Now signed off work, a friend asked me to quickly type a quick quotation while he read it out. I couldn't do it. Couldn't hear properly, couldn't spell. I recently noticed that Headway offers careers advice. I am going to give that a try.

  • There are no distinctions of 'easy' jobs, or 'significance' of injury, to my mind. The issue for me has been the lack of information, as alluded to in Lia's initial question- I wasn't told that I wasn't 'me' any more, and carried on as if I was.

    I'm now faced with losing my job, because nobody told my employers what to do with me, nobody told me what to do with me, the rehab-lady wanted me to colour-code charts for household chores, when I was doing it all. Work assumed that, because I was turning up on time, and not eating the paper-clips, that I was 'better'. I wasn't.

  • That's a 'hell yes' on the medics not grasping the impact of some of the symptoms- "Oh, that might wear off, or you might be stuck with it." on the vertigo, the headaches, the weird visual stuff... I fully agree, too, that 'general' practice and especially the DWP don't have any in-depth knowledge of the range of impairments after a brain injury. It's REALLY hard not to poke medics in the eye when they say "Well, it could have been worse!"- I know that, and, very rarely I do think that the 'worse' outcome might have been easier to deal with than this horrible fog of might-be, and don't-know.

    Awareness-raising is REALLY needed.

  • Gosh there was loads, I went through a stage thinking it wasn't fair they kept me alive for this argh. Will respond soon I'm busy xx

  • Hi Lia,

    I put all my thoughts and learning into a website which you might find interesting, braininjuryftp.com

    all the best with your project, sounds like a great thing to do

  • Intriguing ideas, and a very thoughtful site. The mention of "chatter" in your head post-injury was very interesting. I've had exactly the opposite. I used to have a pleasant, intelligent inner monologue which operated almost constantly and helped me work things out. Post-injury, it was totally silenced - and when I mentioned it to outsiders, all I got was unhelpful mentions of schizophrenia and similar.

    Could I please quote your line about chatter? I'd like to contrast it with my own experience, as a way of pointing out the differences between people's stories.

  • This will be a very useful booklet NightBird! I think that the main reasons that the myriad possible effects/symptoms of brain injury are not listed for us are (in no particular order):

    - it is a very long list and brain injured folk are often not able to concentrate for very long...

    - A lot of it is quite technical in terms of the terminology (we need both the technical - with pronunciation - and a layman's description) and the fact that they are not commonly experienced by the non-brain injured and can be quite weird.

    - medics are always wary of the power of suggestion and we so often see them thinking this as we describe our symptoms; as so many are reporting here. I do NOT think that this is a reason not to produce the booklet I am just pointing out a possible reason why the NHS have not produced this a possible response from the medics... Perhaps your foreword could address this issue?

    A really important aspect of having such a book is being able to consult it at different times. Might I suggest that you have some pages where one could note details of what we experience and when and in any relevant context?

    It does seem to be logical to me that because every brain injury is unique it is not surprising that we all have a unique combinations of symptoms. Of course this is where the poor Neurologists can do so little because our brains are a closed book and their expensive pictures do not really tell them much at all. They are unable to do anything in most cases.

    I would really like to see some recognition that the prime mover in the healing and then adapting process that we all go through is our own (subconscious) brain! Supporting it in doing that fantastic job by cooperating with its needs eg water, sleep is probably the most important thing we can do to help ourselves.

    The brain injured (those of us lucky enough to survive) are on a new path in life. A pattern we might expect is a year of quiet healing, three years of adapting and then getting going with one's new life. Then as we age there are other consequences or perhaps coincidences it seems - but by then we ought to be a practised servant to our wonderful brains!

    PS I am an experienced proof-reader if you should need it.

    Best wishes in your endeavour.

  • Thank you for all your suggestions. Yes, it's definitely hard to concentrate. My idea is a very simple one: a short, easily digested book of direct quotes in everyday language with attractive illustrations. They'll be in large print, but without the "children's book" feel that implies. "Graphic novel" is closer to the idea. I don't want to weigh it down with a lot of explanation, but a quick forward to deflect symptom paranoia is a good plan. I will definitely emphasise that everyone is unique in their response.

    I like the idea of pages for notes. The booklet I'm planning first is on identifying your symptoms, not healing; that will be the second. I'll feel more comfortable talking about healing strategies if/when my healing actually begins. Perhaps I should slip a tiny bit of self-care stuff in the first booklet anyway.

    Thank you for offering to proofread! I've also done that for a living, so I'll be okay with it. I may need some help fine-tuning the text. Not the direct quotes, but the intro/conclusion to them. We shall see.

    :)

  • I think a major hurdle which will always be present, is the fact the medics treating us have never experienced brain injury first hand. Total empathy thus impossible & reliance on textbooks & previous clients doesn't seem (to me) sufficient. As others have already stated, it can difficult to accurately explain our symptoms / feelings to others in a way they understand or accept.

    I'm lucky that my GP's have always been aware of & accepting of brain injury, they are upfront in telling me they are out of options of what to offer me though. I've had counselling, CBT (which the therapist stopped after a session stating it wasn't suitable for my condition), various input from local rehab & Neurology team. The constant offer is for antidepressants which aren't really suitable for me.

    CCxx

  • Agreed. But empathy can be gained through reading. Oliver Sacks wrote some amazing literature about neurological problems (not identical but similar), and he really made an attempt to put himself inside the patient's world. And survivors have written books. Usually post-healing. (I'm writing one when I haven't healed, and it's incredibly hard work). You'd think that anyone working on the brain would naturally want to read the patient's perspective. I'm bewildered that they don't.

    Perhaps you can shop around to different providers. The system doesn't make it easy, though - getting information is like pulling teeth. I'm so glad your CBT therapist didn't try to force things, at least.

    Lia

  • Must admit that for the first couple of years books, leaflets etc were useless to me as I simply could not read. Then when I did figure out a way to read again ( a slow and painful process that I am still working on and adapting) I was always disappointed because none of the BI related stuff I read seemed relevant...until I read OVER MY HEAD by Claudia L Osbourne ( a doctor who suffered a TBI) and then it all fell into place.

    I have been writing my story for years now and it is hard work...but great therapy ;) I think for me the main sticking point is that while the project has an obvious starting point, this is so very much an unfinished story...

  • I've just ordered that book on Amazon. Thanks for the mention :) . The one that enlightened me was "The Ghost In My Brain". He had specific visual problems that I have too, which made me realise that a) it was brain injury and b) visual therapy/neuro-optometrics could work.

    My story is also unfinished. I think my book will end with the message that "my rehab journey is just starting, but at least I have a clear path ahead now". If rehab works - that's another book! :D

  • I really identified with so much of Claudia Osbourne's book and that was the first time I actually realised I was not alone and was not nuts.

    I am now friends with Kara Swanson (via another friend and we all met up in the US) Kara is an American woman who wrote "I'll carry the fork" and has just written a 20th anniversary add on. Many TBI survivors have found Kara's story helpful and its worth a read for sure.

    As an aside... I tried the "carry the fork" technique referred to in her title... sadly did not work for me. I would realise I had a fork in my hand but not know why, worry that people would think/ feel sure that I was going nuts... so I would get rid of it (the fork) wherever I happened to be.. end result a kitchen totally devoid of forks and forks appearing in all sorts of odd places around the house LOL

  • During my nurse training, we often studied illness and disabilities from the person's perspective, including having speekers in to talk about how their injuries / dementia / leg ulcers / diabeties affect their daily life. I never chose to study neurology though.

    After my husband's SAH in April this year, I was terrified at the lack of consistant and reliable information and support. Whenever medical staff spoke to me, they spoke very simply and vaguely. If I told them I could understand blood results, coma scales and scans, they then went totally the other way and drowned me with techno speak that was so far outside my comfort zone that I felt like a moron.

    Hubby was very lucky and spent some time in Oxford Centre for Enablement where he had input from neuropsychologists, OT and physio. It was 5 months after his SAH that he finally came home.

    I then found that there was very little suport. I had questions about his head itching, about his silences, about how to help him in day to day life. How to encourage him to get motivated without nagging, his permanent headache, how to develop his concentration ability... the list goes on, but the answers aren't there. I want to understand a bit of how he feels, but he just can't find words to explain. He just waits to get better.

    Well done for wanting to write a book, I look forward to reading it. Be good if someone wrote one from the family perspective too as it is life altering thing all round. I've struggled with not just a caring role, but with things he did that I took for granted and now have to fit in alongside cooking, cleaning, accounting etc, such as DIY, knowing who to call for housing repairs, undertaking general maintenance. He watches me, tells me it's an easy job, just get a thingy to go on the whatsit. But he can't tell me where to source a thingy and can't show me how to attach it to the whatsit :D

    Maybe relative experiences could have a small section in your book?

  • That must be really hard for you. I'm not sure how to include relatives' experiences in the books (well, booklets really) I'm currently planning. The idea is brief quotes and anecdotes, and directly relevant to survivors. *Very* brief, because survivors often have mental fatigue and reading/cognition problems.

    A book about relatives' experiences would be extremely valuable, don't get me wrong. I just don't have that experience personally, so I'd feel a bit uncomfortable writing it. Maybe that will change as I publish the series.

    :)

  • I'm not sure which symptoms I didn't know about as after I got my diagnosis of post concussion syndrome I asked Dr Google about it and I think everything was covered. I think the biggest issues for me have been:

    - no leaflet after being discharge from A&E with concussion nor any advice how long to rest for or how long concussion symptoms usually last. I wonder whether if the Dr. had said that I should take one week or even two off work then I wouldn't have got PCS. Flying to a business meeting two days after my accident probably didn't help either. "It's just a concussion" I thought....

    - knowing the symptoms is one thing, finding out how to manage them has taken a lot of googling, reading, forum posts and I'm still no closer to managing my symptoms.

    - knowing what treatment or who to go to for help managing the condition is unknown too. I've tried a neuropsychologist but he just confirmed that there's no cognitive issues (taking note of your other posts about high achievers!). Luckily I have private healthcare so I cut down the 16 week NHS waiting list. GP is useless for help with managing fatigue - she just printed out a 2 pager from a website.

  • NightBird I'm not familiar with Oliver Sacks but intend to look him up as as when energy allows. I fully agree some health professionals try very hard to empathaise, but I need all the professionals that we come into contact with to try to do that. I have read some books written by brain injury survivors, I'm not sure they should be aimed at brain injured people. I simply found myself agreeing with matching symptoms & problems, ideally it's everyone without brain injury who needs to be aware.

    Best wishes

    CCxx

  • There's definitely a balance that needs to be struck. I don't want to get people paranoid, but I'm also very aware of the pitfalls of lack of information. It is stressful and worrying to have "medically unfounded" symptoms. When a patient can connect their symptoms to the brain injury, it eliminates that particular mystery.

    I don't want to dwell too much on my own weird case, but it was hard for me to separate out the visual problems from the fatigue. I thought they were caused by the fatigue. It would really have shortened my search if I'd stumbled across something saying "Brain injury can cause all these things".

    Lia

  • I feel the almost limitless number of brain injury symptoms together with the removal of recovery time frames should be made clear from the outset. I've been frustrated for years by the fact I was led to believe I'd be 'feeling better after two years' only then to be told after six years that I'm unlikely to get any better. I understand the professionals can't ever really know what will or won't return, or what symptoms will cease or persist. But I would have preferred them to have been honest from the outset & tell me they didn't really know. I think the current accepted information really does 'us who don't fit the mold' a great disservice, difficult to convince the DWP of long term or lifelong problems when you look okay & have passed the two year mark. Don't even get me started on the famous 'survivors' with millions in the bank & media jobs that can be worked around their needs, they also do us ordinary & more humble folk a great disservice. Why should anyone believe our struggles when they're fronting a new tv show or running for election, interviews with these people saying life is okay are so insulting & because of their fame are accepted as being brain injury 'norm'.

    Best wishes

    CCxx

    p.s. I cried when I first stumbled across Headway website, suddenly I knew I wasn't simply going mad or imagining all the problems I was experiencing. At the time it was a huge relief. xx

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