Hello everyone. Hope I'm doing this right... - Headway

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Hello everyone. Hope I'm doing this right...

JDC1 profile image
JDC1
18 Replies

Hi all. I've resisted this forum since I didn't feel I belonged: my head injury wasn't life and death - it was a concussion. However, a year on and I'm still struggling badly so here I am. I hope that by reading about the experiences of others, I may pick up some tips. I could desperately do with some help!

Please be gentle with me, I haven't a clue how this all works yet! :)

JD

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JDC1
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18 Replies
moo196 profile image
moo196

Evening and welcome.....what sort of thing would you like tips on ? What are your symptoms/frustrations..? ... lots of good advice and empathy here...just need to tell us a bit more perhaps? :-)

K

Kirk5w7 profile image
Kirk5w7

Hi JDC, just because your brain injury wasn't life or death it doesn't mean it was any less important.

Everyone's illness and experiences are different, we do tend to share some common ground though, so whatever questions you have ask away, I'm sure whoever can help you will.

Don't forget the Headway helpline, they are invaluable also contact details are pinned on here.

Take care Janet x

cat3 profile image
cat3

Hi JD & welcome. What caused your concussion and what issues has it left you with ? x

Alexakhan1990 profile image
Alexakhan1990

I find the only time I am happy now is when I am in the gym training. It feels like a zone where I release everything and forget about the outside world. Another thing that helps is doing something to help others, it's great for the soul as well. I've had to deal with mine for 7 years. How did you get your injury?

MXman profile image
MXman in reply to Alexakhan1990

Hi Alex, Totally and utterly understand what you mean here. I still train but no where as intense as I used to. Used to compete in powerlifting and got pretty good (3rd in the world in 2001) loved it but now its trying for moto cross.

When I'm riding MX the whole capacity for stress disappears even when I'm driving to the track it seems the stress and problems just go away. Love what you said and so relate to it. Have a great day. Nick

JDC1 profile image
JDC1

Thanks all. I was a passenger in a car hit from behind. I had the obligatory whiplash - pain and stiffness and three prolapsed discs. But apart from a killer headache, tinnitus and wanting to sleep permanently, I had no obvious signs for a few days. Then dizziness, loss of balance, confusion, memory problems, blurred vision, nausea... basically a whole raft of things had my family insisting I seek medical advice. A concussion was diagnosed but the MRI scan was clear.

I'm an author. Many if the symptoms have lessened but they're still there. Instead of sleeping a lot, although I tire quickly, I suffer from insomnia. Lack of sleep is undoubtedly exacerbating symptoms. I've also been diagnosed with depression after ending my relationship and staying in bed all day. My children say I never smile and that I'm irritable.

I had neuropsychology tests (6 hours with with one twenty minute break) the results show dire weaknesses across all areas but the accusation is that to score so badly, my MRI wouldn't be normal. I was accused of not putting effort into the tests. I wasn't feeling great at the start of the tests. By the end I was a wreck. Sat in a tiny room with fluorescent lighting, sat facing a window with bright sunlight streaming in, not to mention a considerable car journey that made me feel nauseous before I began.

Everything has been put down to stress. A physiological response. I pointed out that I wasn't stressed when all the symptoms manifested themselves. I am now since no treatment has been forthcoming. I asked about the tinnitus and balance problems etc that don't seem like they'd be affected by stress and he said he didn't deal with physical problems. That was the end of the line for me as far as the NHS is concerned.

However, a private appointment with a neurosurgeon in Nottingham today gave me some hope. He recommended the tests be repeated in the correct environment and that they be broken into short sessions. He also said I should have my inner ear and eyes checked properly because of the dizziness and tinnitus. And that rehabilitation may be required but that it won't be forthcoming on the NHS.

I live in Staffordshire where Headway sadly don't have much of a presence. The NHS trusts aren't renowned for their brain injury treatment (I'm under Stafford Hospital) like neighbouring trusts in Derby and Notts for example.

My career is in tatters. My relationship in ruins. I'm treated like a child by my teenagers - I leave the hob on, forget to set timers, leave doors unlocked, forget what I'm doing, throw temper tantrums... I guess they have a point!

susie100 profile image
susie100 in reply to JDC1

I am sorry to have to ask this but are you claiming compensation through the insurers? My daughter went through a similar experience but after being offered a settlement of only £20,000 we found a fantastic solicitor (through the Headway website) who organised private medicals and then obtained an out of court settlement MANY times higher. It was not easy but at least the financial worries are lessened for her and we obtained more information about her condition on the way.

Scans do not always show subtle traumatic brain injury, we were eventually told. Do not allow medical people to fob you off with the psychological diagnosis if you suspect more. This neurosurgeon sounds like a good start to finding answers.

summercalling profile image
summercalling in reply to JDC1

I find that part of the problem is that nobody around you knows how you feel, as they would if you had a cold, and there's nothing to see, for example, a broken leg.

Rehabilitation sounds like a good idea, as does seeking legal redress if you can, and the Headway helpline is excellent.

Best of luck. You are not alone.

ClareO1986 profile image
ClareO1986 in reply to JDC1

This sounds very similar to my experience. I bumped my head at Easter and sustained a minor cut that was glued at the local minor injuries unit. I had the obligatory headache but thought nothing of it. Picked myself up, carried on. A few days later I started to get neck pains that I was later (because I was on holiday at the time of my accident) was told was whiplash. All fine.

A few weeks later I came down with what I thought was a cold that later turned into the flu and knocked me out for nearly two weeks. Cue visual disturbances, dizziness, irritability, fatigue, muscle pain, joint pain... some of which I still get.

Various doctors told me that the fact I'd had a recent head injury was probably making it worse. That is... all except my own doctor, who wouldn't admit there was anything wrong with me. On the advice of the Headway helpline, I asked him about the possibility of post concussion syndrome. He wouldn't even confirm its existence, let alone even contemplate that I might have it. I also had a similar experience of a test run by the same doctor where it was blatantly obvious that he thought it was pointless. He even said that he didn't know what else to do with me, at which point I told him that I wanted to see a neurologist...

I'm still waiting...........

I hope you get some answers soon.

Candace8 profile image
Candace8

Bless you. Doesn't matter what degree your injury was, if it's bad to you your welcome here. Hopefully we can help you. Glad you have joined us, we all up and down. We all suffered a form of bi and all at diff grades. We all have up and down days and you don't need to struggle alone

Candace8 profile image
Candace8

Just read your last comment. As said it doesn't matter how it happened or there no signs on the Mri ect tests. The brain is different for everyone. I do exactly the same things and am treated the same by my daughter who tells me off in public and totally embarrassed me often, very often. I had a serious brain injury but we are just the same. A bruised brain as I call it. I hope you get help but you really need to push for it then push more and more. The brain is expensive to treat as there not enough known. Fight for help. Really fight. If you don't give up they will treat you. I'm nearly 6 years on and am still getting help. When I ask for it they know I will learn and do it. Sometimes it's just teaching your brain how to do things. I have recently had expensive braces made and they have really helped my balance. Can still only wear trainers and still have a bad limp but it's no where near as it was. They can help and if you keep pushing they will eventually. Don't give up x

cat3 profile image
cat3

The lack of aftercare is one of the biggest issues for us when struggling with the after-effects of brain trauma. But please be assured JD that after one year there's still a long way to go in terms of rehabilitation.

It's common to see improvements years on from a BI but it's such a slow business and can be a source of great frustration.

The neurosurgeon you saw today sounds like he means business by improving conditions for the neuro re-testing, and the investigation of your symptoms. So fingers crossed he can suggest a way forward when all results are in.

The memory deficits are usually permanent but there are ways of compensating and/or working around this issue. It might be that you're expecting too much too soon JD and that, with more time, you'll develop techniques and short-cuts to overcome your present difficulties ; most people do.

Let us know how the tests go ; see you later. x

MXman profile image
MXman

Hi JD and a warm welcome,

You are in the right place for general help with brain injury and some really good advice too.

As Cat and others have said the after care is a problem in this country and we are very fragile especially in the early stages of brain recovery. I completely understand and identify where you are coming from as I too went through this. You may have read my profile to get an understanding of why I'm here but quickly hear goes.

Moto Cross accident last year in May and came off suffering horrendous concussion (out for 4.08 minutes) 3 brain bleeds on the frontal lobe so not good. 8 days in Basildon hospital then home and felt like a child. 12 weeks no driving and no warning of what was to come. Tried to go back to work that week, idiot kept falling asleep at midday due to brain fatigue that I know nothing about. Took that week off but eventually pushed myself back into work, us builders are good at that but not too good at taking advice.

Came across this forum and its been an absolute God send for me as iv learnt so so much here from all you lovely people. Things like Brain Fatigue thinking and acting like a child sometimes and finding my 14 year old son is may best friend. My consultant never warned of any of these changes so they were and still are awful but iv learnt to accept them and so have my immediate family. My parents and my sister I find very difficult to talk too so just don't, well not much anyway. Acceptance is the key for me and I'm sure you will find this too.

Stick around here and I'm positive you will find this forum really helpful as I did and still am.

Have a fantastic Tuesday. Nick

BaronC profile image
BaronC

Hi, JD, nice to see you here. It doesn't matter how serious your injury was, if you feel the need for help and advice then you need it. And we're all here for you.

Baron/Andy

Ro_76 profile image
Ro_76

Hi JD nice to meet you. Please don't feel you don't belong...we all have our different problems and each is very important in its own way. I have found as my time moves on from my injury in July last year, where I think I am getting somewhere I am suddenly not. That is how it goes, and being on here really does help I find. Everybody is supportive and understanding. I totally understand when you say about memory problems and temper tantrums. I get these... It's just frustrating isn't it?

suemoff profile image
suemoff

Hi JD

I'm just over 2 years since my accident, I fell off my horse and had a bleed, but like you I thought headway was for people with worse injuries than me. I only got in touch after going back to the doctors about 6 months after my accident, probably feeling similar to how you feel now and it was another year before I found the forum. You're in a good place here, there is lots of support and people in a similar situation to you, so it helps you know you're not going mad. I did and still try to push myself too much. I remember my first visit to the doctors after being discharged from hospital and he wanted to put me on a phased return to work, I really thought I should be able to push myself to do it and beat myself up about not managing it.

Sue x

Dory2016 profile image
Dory2016

Hi JDC, I've just join today as well and much like yourself didn't feel right seeking help with what I was told was a concussion.fast forward 5 years and my family and I are only now starting to understand to complexity of subtle brain injuries..I'll share any tips. It's actually a relief to find that I am not alone, sad to say.

Superwoman2020 profile image
Superwoman2020

I've had thoughts of possibly not belonging, don't be hard on yourself,my injury was 9th June 2018,I'm still adjusting to what I can do

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