Does anybody have any experience with something like this situation?
I've had symptoms for years since I got knocked off my bike and hit my head on the road. Luckily not as bad as some, but still enough to significantly change my life.
When I had ongoing symptoms, my sister and my step-mother never really believed in them. We'd all been through a lot with both my parents passing away within a year, and my brother developing serious mental health and drinking problems. Dealing with all that had exhausted us all, so I could understand a bit of "compassion fatigue", and not wanting to believe there was another thing to deal with. My sister's response was, "Yes, but you're fine." My step-mother was more hostile, getting impatient and even indignant when I struggled, like I was making a fuss about nothing.
Although I did speak to a GP at the time, I just had an MRI, and when that was clear, nothing more happened. Maybe I should have pushed more, but without much support, I don't know - perhaps I didn't feel I had the right, or would get anywhere. People just didn't seem to believe me. I am still an intelligent man, and maybe it's hard to convince someone you have a brain injury when you come across as intelligent and articulate.
Anyway, I recently did a cognitive test, which showed some significant deficits (one end of the scale to the other). I still rate highly on the things that make people think I'm clever. I did the test by chance, because it was part of the follow-up to the REACT covid study. Since then, I've had an appointment with my GP, who thinks I have post concussion syndrome and has referred me for assessment. I'm waiting for the appointment.
I've told some friends about it, but I haven't told my family, because I'm still a bit nervous about their response. They have such an investment now in the idea there's nothing wrong with me, so I want to wait until I've had a definite diagnosis. Even then, I don't know how they'll react. Obviously, it's an area where I feel a bit fragile and vulnerable.
Does anyone have any experience of how people do react in similar circumstances?
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Suwariwaza
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I'm sorry that your family doesn't recognise your injury, at least enough for what your deficits are. It's great that you found us here though because many of us have gone through a similar experience.
An MRI doesn't necessarily show the damage to your brain. I would suggest getting your Autonomic system checked by a Specialist because that will at least evidently show that there are changes to your body as a result of some abnormality, and they can work back on the specific diagnosis from there.
That's great that cognitive testing showed up your deficits. I often am close to normal when I'm at my best, so it was difficult to prove my issues testing in those circumstances. I had to undergo stress-testing by an Occupational Therapist in order to bring on my symptoms and the results from cognitive testing.
Perhaps take it more lightly what your family thinks about your injury and symptoms. Even if you have hard-evidence they still may only see what they want to see.
Yes, It's great that I found you all here. I guess you do all know the difference it makes. It's the first time I've had anyone recognise what I'm talking about.
The GP did mention a CT scan. I don't know if that means I'm having it, but anyway, I've got the referral and will see what that involves.
I hadn't heard of stress-testing with an occupational therapist. That sounds interesting and useful. I hadn't heard of autonomic testing either. What kind of specialist do you see?
Something I highly is recommend is 'discernment'.....that is carefully seeking out medical professionals when you need to utilise them. Otherwise the wrong ones can send you round in circles.
If you've had a brain injury then I highly recommend an MRI scan as the first step. I had one myself, the Radiologist didn't pick-up on the damage to my brain, but the Neurologist did.
You need to seek out someone who does Autonomic System testing in your area. Try this or use a google search:
This is somewhere to start. But first, make sure your vitamin B12 levels are OK by getting a blood test done by your Doctor. Then at least you can rule out that deficiency. Make sure you are drinking enough water.
It's basically a process of elimination, but I would recommend seeing a specialist in 'Dysautonomia'. Keep in mind that your symptoms will vary across the day, and there will be times when your at your best and at your worst, so the testing has to reflect a clinical perspective rather than simply a single place and time where they say yes or no.
I'll leave this here for you to peruse. It's a video from a medical Doctor talking about, and with an easy-to-understand slideshow of Autonomic disorders. She goes through all the testing methods:
As I said, I would get an MRI scan done, refer it to your choice of Neurologist, and then perhaps a specialist in Dysautonomia if your Neurologist is unable to help there or if you need to go back for further medical evidence.
Hello Suwaruwaza. A brain injury is known as the invisible injury. You look fine therefore you must be fine!! And the tragedy is that often it could not be further from the truth.
I agree with everything James has said, and I've now learned about dysautonomia and intend to find out more about it.
As far as your family is concerned, only you know how important it is for them to realise that your symptoms are real. You live with the results of your accident every single day. It sounds as though your family is only exposed to your problems now and then, and, due to the general and widespread lack of awareness they have absolutely no insight into your situation.
If it is important to you for your family to try to understand, then I would recommend spending some time on the internet. There are so many articles on brain injury being known as the invisible injury. There is a lot of information on YouTube too. You could compile a lot of information in different ways, but only you know how best to present the information to your family members. The one way in which I've had success is to find articles / images / useful web links etc - and compile everything in a flip file which can randomly picked up any time.
At least you know you have acceptance and understanding on this forum. I hope some of this might help.
Thank you! Yes, you're absolutely right. They live elsewhere, so don't see me day to day.
When I first had symptoms and was scrabbling around trying to understand what was going on with me, I did come across post concussion syndrome, and told my sister I thought that's what I had. I sent her information from a reputable source. She used it as evidence that I was making too much of things and inventing a diagnosis for myself.
That's why I'm a bit wary of providing information from the internet. I'm hoping once I've had my assessment there'll be some kind of report written by a professional about me personally. Then maybe more general information for families may be helpful, such as the stuff on the Headway site or elsewhere.
Thank you for the acceptance and understanding! As I guess everyone on here knows, that makes a huge difference.
the treatment i get from family sometimes is , they say its been so long since the injury , why, if you still have that problem bothering you why haven't you done anything about it ? ,, in many cases its a time problem . ( i have neuro fatigue that would shut me down after being at work for 5 hours , but all the sudden after 5 months of that , it stopped ???? now i can easily put in a full day . ) why ??? i guess just because ... some of the other questions i brought to my g.p. he just said give it time. ( the stuff that lights me up, is he says oh you are having balance problems ? then be careful when you make certain movements ) uh , yeah , i think i already figured that out for myself. Hey G.P. i get tired easily , " well you should rest more ..... ( about like playing word games with the 3 stooges )
Don't be discouraged , this is a time problem , i think everyones family and friends discount the injury because you arent visibly damaged . so, they cannot understand what it feels like. This group is made of people that know exactly what it feels like . Keep Hope. Actress Sharon Stone survived a massive brain bleed that they told her for days wasnt happening , a normal headache. After they finally decided she was having a hemorrhagic stroke. they told her, she would likely have only a 1% chance of living . anyways, she did and recovered greatly , she complained of feeling like someone else but not herself .. i think a Buddhist Monk told her that she had died and was reincarnated into the same body . ( strange and interesting way of looking at the problem)
I asked a friend of 43 years if i was acting any different he said no..... , a lady i have known for 35 years just looks at me oddly when i speak to her and i get the feeling she is waiting for me to start clucking like a chicken or flapping my wings ( an no i have never done that before ) , another guy i know stopped talking to me altogether. i guess their reasons are their reasons . i do respond differently sometimes to extremes ,such as rooms full of active children just burn my head out . i have to leave . Sometimes i dont feel like talking , so i am very sparing with conversation . I wasn't like that before . But, not much to be done , its just the way it is .
i know my story is long and boring , but its the one i have (lol) ... all i can say is Keep Hope, stay tough and tomorrow is another day !
Yes same experience. The only people that really understand it are those that have had a head injury. I think you should tell them and explain what it feels like to have a brain that functions in a worse way that before. Ultimately, very few care about the walking wounded. 'You seem fine'. Would be interested to see where your journey heads in the medical world. What issues were highlighted in the tests, if you are willing to share?
I'm sorry to hear you've had the same experience. It's tough, isn't it?
As a background to the tests, I have had tests of my mental abilities before (11-plus, MENSA IQ). On both, I was in the top 2%, so I think would have had to be in the top few per cent across everything.
On the recent tests, I was still in the top few per cent for a couple of things (planning, verbal reasoning). These are the things that make me seem too clever to have a brain injury.
On most things, I was much more average. Average is fine, but it still takes getting used to - that feeling that you can't quite do things the way you used to.
The two things I was at the bottom of the scale for are spatial reasoning (I think that's what it's called) and working memory.
I remember on the test there were puzzles where there was a grid with coloured squares arranged in a particular pattern. The four more grids at the bottom and you had to pick the one that was the same but rotated. I was really good at that. Then there was one that was basically the same idea, but you had to visualise more of a 3-D relationship. Suddenly it was like asking a toddler to do algebra. I had no idea what I was supposed to be seeing. I just guessed at answers.
Early on, I did have some odd experiences - suddenly feeling a bit lost just round the corner from where I lived; going to visit a friend I'd visited often and not being able to recognise their house, then after a phone call eventually working out I wasn't on their street at all. I don't really get that any more, but do find I can't do what I used to - just rely on my sense of direction to get somewhere. I do a lot more fiddling with Google Maps and getting a bit confused. I also can't give anyone directions. Even if it's somewhere close I know I could walk to easily, I just can't picture the route in order to describe it to them.
None of that at has such a big impact on me, though. What does have a big impact is the working memory (keeping things in mind while I'm using them mentally, at the same time as filtering out the irrelevant stuff). This makes simple conversations difficult sometimes, and situations where there's more than one demand on my attention very stressful and tiring. I get reactive (although I've got much better at controlling this), and also can't really take anything in or process it or respond. And people expect you to respond, and sometimes get annoyed with you struggling. I guess they don't realise you're struggling, maybe they think you're being difficult. I don't know. I find even explaining it to people doesn't really work. I guess because most people find those situations a bit stressful and tiring. So, when you tell them what you're experiencing, they think they recognise what you're talking about. But they don't realise it's not the same - that you can't function at all, and that you might have to go and sleep for three and a half hours afterwards, and still wake up feeling wiped out.
When i was in the hospital , i scored above average on the cognitive tests . which had them wondering how badly i was hurt ( fractured skull,concussion, brain bleed) . so they just sent me home after 3 days . with no restrictions and i could return to work the next day . they should have factored in my balance or lack of it .
Hi , I am in a similar situation and have been told “ you’re just being lazy and it’s just very mild “,I understand how I appear normal but had hoped the fact I told them how I’m affected would be enough. It hurts to feel I don’t have the support from the people I most needed it from and at a time when I’m struggling to accept and understand things myself. I find myself not telling people and trying to hide my symptoms to try and fit in with their expectations. The one place I can talk openly is at the local Headway group it is well worth seeking it out if you haven’t already.
Yes, I totally get what you're talking about. It's the hardest part for me, the lack of acceptance of the problems, and the lack of support. For me, it feels worse than the problems themselves.
I've looked for a Headway group, and I really like the idea, but unfortunately there doesn't seem to be one in SE London. Unless somebody knows different? I think they all have a catchment area you have to be in.
Hi Suwariwaza, welcome and sorry that you find yourself here.
Sadly, I can relate to your experiences as I’m sure many other people on here can. For me, it’s been less about family members and more about colleagues and friends - I have actually lost friendships as they just don’t get it. Still can’t believe it as I’m typing that.
At the time of my accident (slip fall on a wet stone tiled kitchen floor, hit head on industrial sink and then the floor, knocked unconscious, had amnesia etc), my employers totally minimised what had happened to me - because I was walking and talking - and did a very poor job of taking care of me. Things were tricky as this happened abroad on an island with no hospital (but British colleagues). I did get basic hospital care a couple days later, but no scans. This was 7+ years ago now. Anyway, I think because of this attitude, I didn’t seek NHS help for 5 years, despite significant life-changing effects, I just tried to get on with it, failing miserably over and over again. After yet another breakdown a couple of years ago, I’m now in the system to get officially diagnosed, but also now being treated for PTSD that arose due to what happened and how I was dealt with at the time of the accident.
Headway have some leaflets on their website that lay out the effects of brain injury. A bit of a long shot but as and when you get diagnosed and wish to tell your family members, you could always just hand that over and don’t say too much, let them read it or digest it.
I don’t want to excuse anyone’s nastiness but sometimes people get scared when others close to them aren’t well or have problems. Rather than have to deal with that, they’ll try to minimise it by getting annoyed nasty etc. There’s the thing too, of someone having attention, and I don’t mean that in a horrible way, but if that other person is hurting or struggling themselves, they might find it difficult to see someone else who’s really not well getting ‘attention’ or help.
I’m not sure if any of that is useful or helpful in any way but as usual I’ve gone off on a tangent!
Either way, there’s always support here on this forum from people who get it.
Look after yourself and hopefully you’ll get the support you need and that your family members see it as you asking for their support and understanding too.
Thank you for your reply, TreesMTBI. I'm sorry that you've had a similar experience, and your own difficulties. Yes, losing friends because of it is hard. I'm glad that you're now getting some help. I'm hopeful I'll get some kind of plan, and just getting the support somehow means more to me than any hope it will change my symptoms much.
I think your observations are probably spot on. People kind of want to think you're ok, and that doesn't all come from a bad place. They want you to be fine. I think your insight about people finding it hard to be supportive when they're struggling themselves is also very relevant, and good to keep in mind.
Thank you for your support. It's been very helpful, and not off on a tangent at all. I think spot on.
I’d also keep PTSD in mind as maybe affecting you too. I’m seeing a specialist neuro therapist who is treating me for PTSD, who deals with a lot of brain injured people and the incidence of PTSD is really high in that population - and doesn’t often get picked up, as everyone focuses on what ‘brain injury’ symptoms might be, but the crossover is staggering. Not to say that all symptoms are only PTSD, of course.
All these replies are valuable and interesting, and I didn't know about dysautonomia. I haven't had a head injury myself (thank God!) but my son had one as a child, and I think suffered the after-effects of it until he died by suicide at 31. I cannot bear now to think how unsympathetic I was, and how, somehow, cross with him that he couldn't seem to be happy. I can understand your family's lack of support, though I absolutely don't condone it. After Chris's death I learnt so much, and I'm passing it on here in case it helps you, and James, GCS3 and Headlag.
A quarter of head injuries, and 16.8% of concussions, cause damage to the pituitary gland, which then doesn't produce some/all of the vital hormones your body needs to function properly. The first of these to go is growth hormone. If you don't have enough growth hormone you can have problems with your heart, bones and liver, you suffer fatigue, may suffer loss of muscle, may gain weight. All these are terrible, but the worst problems are with your mind. Depression, anxiety, memory issues, social isolation. Your libido can be affected too. Your relationship may break up, you may lose your job. The risk of suicide is x4 after severe head injury, doubled after concussion. BUT if it is treated and you get regular GH replacement you may feel fine again.
It is a scandal that head injury survivors are not routinely tested for this. If you go to your GP and ask to have pituitary function tests, you are likely to get basal tests for most of the pituitary hormones, but you will not routinely get the proper tests for growth hormone deficiency (GHD) or cortisol deficiency. You may get an IGF-1 test for GHD and if your level is normal you will be told you don't have GHD. However, this isn't true! If you google you'll find that 65% of GHD patients have normal IGF-1. (To test properly for GHD you need a stimulation test, which is most likely to be the glucagon stimulation test or the GHRH + arginine test. The glucagon test has the advantage of diagnosing cortisol deficiency as well as GHD.)
After the GP has done the simple basal tests he is likely to say 'All your other pituitary hormones are normal, your IGF-1 is normal, so there is no need for a stim test'. This is where you have to stand up for yourself. Concussion survivors are likely to have isolated growth hormone deficiency. If you need support to fight for testing come to us at christopherlanetrust.org.uk and we will do our best to help.
You are fabulous Head, the work you are doing is extraordinary, and I am sure your son knew you loved him to bits even if you didn't fully understand then.
Might you repeat this as a main post? It contains so much valuable info and many don't read down.
I have tried to raise this over on the osteoporosis forum too.
Have you looked at Headways website? Think they have information sheets for family to explain post concussion syndrome. I show info to my family and close friends. The best of friends are still with me, helpful and been great support. Go back to your GP too to check if there's any services that could help too.
Hello again. I've just read through all the posts and certain aspects stand out for me.
The common thread is that because you "look fine / look normal" then there can't be any problems, therefore you are attention-seeking or just making a mountain out of a molehill.
Another common thread is the loneliness, loss of friends and the (seeming) lack of interest or empathy for the fact that you're now different to your old self.
And yet another common thread seems to be the fact that medically there's a lack of understanding of the need for information, education, advice, support ... the list (shamefully) goes on.
Yes, we've been through all of this, and that just seems to be how it is!!
When my son had his accident in 1990 my husband and I read as much as we could. Guess what? Nothing much has changed, and I'm reading experiences on this forum which echo what I read 35 years ago.
But if I play Devil's Advocate, then it may help to understand the "other" side. Most people shy away from things they don't understand. The initial sympathy fades quite quickly, partly because life doesn't change for them. Their daily "norm" largely continues, and ultimately they just get on with their lives. This eventually leads to the different aspects of distancing.
It helped me to try to put the shoe on the other foot. What if it hadn't been me, but it had happened to ??? (friend or other family member). Would I have put my life on hold? Would I have tried to focus on that person? Would I have made it a priority to learn more so that I could understand? Or would I actually have reacted pretty much the way that my social group did, and just got on with my life? No matter what our initial reactions may have been, and no matter how good our intentions may have been, I believe that we, too, would actually have just got on with our lives.
No solace there, but it adds an extra dimension to the saying "Ignorance is bliss" - not for us, but for our families and friends, whose support would be so meaningful to us.
Let's hope this forum will continue to reach many more people and provide the caring support which every person needs. In the words of A.A, Milne "You're braver than you believe, and stronger than you seem, and smarter than you think" x
Hi , I had the same problem with friends and family after I had a TBI with subdermal hematoma. Since I looked normal they think there's nothing wrong.My last MRI was clear . The Drs . can't do much except tell you to go home and rest. My symptoms were severe anxiety and depression,mood swings , feeling off balance, poor short term memory the neurologist said that those symptoms were caused by my brain healing itself . So I was pretty much left to fend for myself. Please research this book , When Brains Collide it was written by a former military Dr Michael Lewis, he has a protocol that uses Omega-3 fish oil and CBD to heal your brain. I can tell you from my experience it works, all my symptoms are pretty much resolved . You may want to check this out. Good luck!
I was v lucky (!) because my family saw me soon after my being knocked down 13 steps to a tiled floor (3 bumps, brain sloshing about).
My adult son heard me scream and found me lying on the floor with a shattered wrist and concussion. He has been very supportive. My husband saw me an hour after (the ambulance never turned up - never fall downstairs on a Saturday evening, silly me). He saw and heard me broken and unable to process more than 3 minutes memory for several hours - where am I? What happened? On and on in A&E.
So they both know its real. If you weren't there it would be harder.
BUT friends who weren't there get it too. Because being friends they trust what I say.
unfortunately, family doesn’t understand. It’s difficult for them to get their heads wrapped around it , as you said you are an intelligent man. We all are intelligent, creative, blessed with a talent, a career. It’s the toughest on the family. Our behaviors can be embarrassing and very frustrating to them. Even friends will shun you. I guess they weren’t friends anyway .
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( an no i have never done that before ) , another guy i know stopped talking to me altogether. i guess their reasons are their reasons . i do respond differently sometimes to extremes ,such as rooms full of active children just burn my head out . i have to leave . Sometimes i dont feel like talking , so i am very sparing with conversation . I wasn't like that before . But, not much to be done , its just the way it is . 
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