Head Injury 3 years ago

[mand00]

Had a accident on a bus and suffered a head injury,whiplash and concussion. I am getting really frustrated because i look fine on the outside but family and friends don't seem to relise how much im struggling with day to day jobs and memory is getting worse, tired most of the time with bouts of insomnia to (compressed vertebreas in the neck with cronic migraines and cronic vertigo), Doctors don't seem to be listening and just would like to hear how over people are affected to because it feels like im on my own with this, and just came across this site on facebook xxx Would love to hear from any body with there experience and how they are because i feel alone on this one xxxx

[Bards]

Exposing others to any 'drop-in awareness days'/contact days/social events whether Headway or Nhs (if available!!!) may be good. I bought quite a few the Cracknell book for Christmas (other examples available) and that's definitely helped. Support/info for 'others' is extremely important and dismally lacking in most cases. I've been v fortunate with family and a few friends but would have been easier (and less need for luck) if they'd been up to speed.... I hope there are some resources other than t'internet you can marshal...

All the best.

[kellysuriol]

Hey, sorry to hear that you struggling, but you are not alone!

I hit my head last year, coming off my push bike. I have constant head aches and also suffered from whip lash, but all was diagnosed later as at the time they didn't think that my landing on my forehead on the road at 20mph was serious. I didn't have anytime off work and just tried to carry on as normal, to my fault. Now, nearly a year on I am about to go and get signed off for a while. As it is too much, I can't concentrate, which has got worse with, I get easily confused, and lack patience. And motivation. Did I tell you, I had just moved into my dream job a month before my accident? :o/

I am going to the chiro for my neck and head, I am receiving dry needling and cranial adjustments. Progress is slow as not treatment was not started till 8 myths after the fact. I have a neuropsychologist assessment, booked but still to be cleared by my health insurance.

One thing I have found is that no one can help, my chiro's have been more help than anyone, although the headaches are still there, my neck is bad but improved. But doctors can only seem to suggest meds. Last year I was told this would last 6-12 months. In the last two months I have been advised it is probably a forever condition. which if honest had caused a bout of depression. Had I known this before I may have approached my treatment differently. I have had to drive my treatment , and literally go to the doctors and tell them what I want done, as meds is not an optio, especially as it is a 'forever condition'!

I was recommended a book by a friend that has also helped, not directly about TBI, but about managing emotions - the Chimp Paradox by doctor Steve peters, this has allowed me to reign in my frustration, and if not recognises that I am being irrational and turn it around more quickly, I have also started to meditate. When I can focus. Which is a great help, not for headaches but general well being. Which I have found to be paramount.

All that said, it has made what was a confident and successful girl (in her 30's) a rabbit caught in the head lights who is scared for the present and the future who cries a lot. Everyday is harder than it should be, but a positive mental outlook is paramount, clear communication is key, and setting expectations, which I have found most difficult as I have the best of intentions , but it doesn't work out that way

A situation like this is a true test of friendship. Yet we are the ones thst have to be more patient than ever as, as much as we are suffering those arounds are as they would like to help but can't! And others I am sure are there just to try us.

[Hidden]

Hi mand00, some of the ongoing symptoms caused by the injuries are similar to Post Concussion Syndrome. I started a blog post here,

headway.healthunlocked.com/...

From Gina.

[Allsorted]

Hi mand00

Your situation sounds all to familiar to a fellow brain injury survivor, for a long time i almost felt i had to tell the family the worst parts every time i saw them to magnify it and make them aware how hard it is.

Headway had some really helpful leaflets etc for family explaining subtle differences that have huge impact.

i completely relate to the looking the same, i look in the mirror and see the same person, but i know things aren't right. its like looking at a fantastic book cover but the pages are empty or missing, with the judgemental world we live in its all to easy to think it would be easier to explain if had a injury thats visible.

Which area do you live in as there are some great sources of rehab and support available across the UK.

Best wishes x x

[Allsorted]

Just read this blog headway.healthunlocked.com/...

i found it really helpful and supportive, it may be helpful to print it and take with you to the doctors, i may be completely wrong, sorry if i am x

[BaronC]

oh, you're far from alone. I know precisely how you feel. Eighteen years on and although I've now come to terms with and learnt to live with my 'condition' I still feel as if I have to explain myself on an almost daily basis.

The only difference now is that I really don't care. You see, I came to understand a very long time ago that the problem is not my own. The lack of awareness and understanding falls solely at the feet of others, including on many occasions, the medical profession.

If you need to talk to people who do know exactly how you feel, there are many people here, myself included, who are more than happy to help. In the meantime, keep your head high, and keep smiling.

All the very best,

Andy

[sandi07]

You are not alone......it was only 9 months ago I had a Brain Haemmoredge and suffereing from fatigue, tiredness, sleep disturbance, debilitating headaches, not to mention problems with memory ad all the other day to day things...I cant even explain or understand myself never mind trying to explain to anybody else............but the you have come to the right place...headway has loads of information ..

[Puffle]

Sorry to hear you are having a tough time. To copy others, you are not alone. I suffered tbi last yr, infact my '1yr anniversary' has just come and gone. My injuries were as a result of a prolonged assault which have left me with a lot of problems. I'm also struggling with the looking fine on the outside, it is so very frustrating to say the least! I don't cope terribly well with it but find coming on here helps me feel less like a freak (not to offend anyone thats just how I feel. ..) as I can see that others are having the same issues. I hope you find it a comfort too and I wish you all the best in finding a solution that helps you. Just don't push yourself too hard, from experience I know that only hinders recovery.

[bikerlifestyle]

everyone has already said about being in the same boat, i am too, so you are amongst those who understand, we all pretty much have these problems, even now 17 years on i find it hard to explain to others how it affects me, because people find it hard to imagine what it would be like. so i have all but given up trying to explain to others

[Danslatete]

I echo what the rest ae saying. One thing that used to drive me mad was when you tried to explain and they would reply , well i always forget things, or i always get tired and headaches at the end of a busy week.

I dont think anyone who has not experienced the sheer total brain fatigue for themselves will ever understand that when you say tired it means, i cannot function i need sleep this very second and i dont have the energy to care where i am or what im supposed to be doing.

I had severe headaches that felt like a metal rod being pushed thru my head. I would litterally fall to the ground in a strangled scream because it hurt so much, sometimes it would make me sick othertimes it would be just a few seconds of intense pain. Sometimes i would have headaches like this for days. I truly wished i was dead due to the pain. One gp said he would give me paracetamol... i also tried everything possible. Altered my diet, made sure i slept enough, had accupuncture, walked everyday etc etc.

Now days i feel ill when the weather changes, i can taste snow and i feel prickly and a huge pressure when it is going to thunder, I cannot function in thunder storms. Now i know its the new normal for ,me i dont worry because i know it will pass.

I hope in time you will be able to look back on this posting and realise that things are different.

Kind regards

x

[bikerlifestyle in reply to Danslatete]

am with you there, my dad is terrible about the way he belittles my problems, especially my memory by saying well everyone forgets things or that happens to everyone. i have to bite my tongue.

I just don't know how to explain so people understand that its just not forgetfulness normal stresses

[Aelfwyn]

Firstly, poor you. It sucks, doesn't it. But secondly, hey, thank goodness you found your way here! As you can see there is plenty of understanding and support here.

GPs do not seem to be very clued up about the impact of 'minor' head injury, sadly. What you could do is to go back to yours and ask to be referred to a neurologist. For me this was a huge breakthrough. The neurologist was the first doctor who actually took me seriously and booked me in for sessions at the nearest Brain Injury Rehab Clinic. Just to speak with professionals who understand is a great help.

Other stuff that helped me: phoning my local Headway group and getting a few meetings with the coordinator there. Sending off for Headway leaflets through their main website. Going to a cranio-sacral therapist, who made a miraculous difference to my pain levels.

Good luck.

[dek22]

things will get easier for you , you must get suppoert to help you. good luck

[Flumptious]

You poor thing.

I got my TBI back in 2005. I have gone back to work (I needed 18 months off, though. I was really lucky that they took me back). I am most definitely still 'disabled', but people can see it. I am visually impaired (officially 'blind'), and I speak in a funny blurry voice.

I most definitely yawn more often than I did before the accident, but then I lie in bed for hours thinking "Why can't I sleep?".

It is a good thing you found this place, isn't it? You are very welcome here, and feel free to talk about your injury, however you want.

[headwayuk Partner Headway]

Hello mand00,

Thank you for your post. I'm really sorry to hear of the continued effects you are experiencing. It's great to see the support you've had from our members here - you are certainly not alone with this.

We have a number of booklets that I think could be useful to you, and also local Headway groups that can provide face-to-face support. If you send me a private message with your full name and address I can get something posted out and give you further details. Alternatively, do contact our helpline on 0808 800 2244 or [e-mail] to discuss things with them.

Best wishes,

Headway.

[mand00]

So sorry i have not been back on here for a little while and have not got back to you all, thank you every one for all the support and sharing your experiences with me it does feel good to talk about this, after reading all your messages ive confronted my family they looked at me very puzzled they did not understand but by peoples experiences you have shared i have learnt that this is down to them i can not expect them to understand how it is so now i have found this site has helped me understand your not on your own its early days still at the moment but trying to look at one day at a time and hoping to go to a support group soon xxxx

I will send messages to all soon just i find it hard to concentrate for to long please forgive me, just so apreciate everybody's imput that you have sent will contact you all soon sending all lots of love and thank you all ever sooooo much xxxxxxxxxxxxxxxxxx

[AimeeParker]

Hi my dad suffered a serious brain injury after falling 350ft off a glacier 8 months ago. He was in a coma for 3months and is lucky to be alive. He just came out of hospital on Friday and is making a remarkable recovery. However I can empathise with some of the things you are saying as he has spoken similarly. Since his accident I have done a lot of reading/research etc as it has helped me to try and understand more about his injuries and what he might be going through. Luckily we are a very close and frank talking family and this has helped a lot. I think it's fantastic that you have been able to confront your family and I would encourage you to keep talking! Headway are also a massive resource and support so do call them too for advice and a shoulder if you need it.

Someone previously mentioned about post concussion syndrome in their comment... I don't know how helpful you'll find this but it was such a wonderful film and I found it to be very inspirational and informative... It's called "I Am" by Tom Shadyac. After suffering from post concussion syndrome following a serious bike accident his life was changed and he made this documentary film. Check it out!

Wishing you All the best. Aimee.

[rosemariemyria]

Hi I have similar experiences to you, I find it difficult to remember things and the more frustrated and anxious I become the less I can remember, then I panic, the thing I have learnt is to stop, breath, concentrate on my breath to calm myself down, and use self-talk such as 'when you calm down, you will remember and the situation will not seem so bad'.

I have found the strategies that people use with people who suffer from anxiety, are helpful; I find the frustration and angry outbursts more difficult to deal with at the moment so I stay in doors when I am having 'angry' days.

[Luzern61]

I can fully understand what you have and are going through. Medics in general don't understand or can't point to any empirical evidence to provide a diagnosis. Regrettably, it therefore tends to be ignored or dismissed. But for the patient the effects are all too real. If you wish, read my account of experiences of 45 years under Luzern61.

The best arrangement is to seek counselling - it may need to go on for some time but it's better than keeping everything to yourself. Do bear in mind that you will have better days, and despite what seems an eternity a large proportion of head injuries do eventually clear up. So do rest in hope. I wish you the very best of luck.