"See I was right all along": It's an odd feeling... - Headway

Headway
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"See I was right all along"

It's an odd feeling, why should I feel happy being diagnosed with a minor brain injury. One part of me thinks 'see I was right all along' where the doctors are concerned. I'd been thrown out of a doctors surgery, they thought I was drunk and on drugs. The doctors there treated me like a mental health patient and did not believe anything I said.

Was removed from the nhs eye clinic for being 'over reactive' and was called 'a difficult patient' when I went white blind and could not see, they literally led me to the door and pushed me into the corridor.

Was laughed at, called a weirdo and a difficult patient in the abdominal clinic because I said the lights were affecting me and making the walls and furniture and patterns in the carpet move in my head. I had to sit in the waiting area because of short blackouts, the nurses sniggered, laughed and joked about me until one came over and shouted over and over 'you have to leave now'. I left having to hold onto the walls and go onto my knees when blacking out. One of them said they should'nt let people like you in here.

I could rant on and on.

Well I found a good doctor in another practice. He took me seriously and arranged all the right appointments and tests and now eventually after nearly 2 years post head injury a diagnosis has been made.

PCS/ minor brain injury. Many of the symptoms have cleared up and what remains is memory problems, information processing issues, communication problems, auditory issues and extreme light sensitivity and visual distortions.

These all act on eachother and can cause extreme physical and neurological events like blacking out.

I think life will settle down now, but it seems strange to think that I'm oddly happy to have a minor brain injury, I think it's just a thing like saying 'I told you so'. Reality will dawn soon enough and my smug feeling will disappear when I have to adapt and move on in life.

If you read it all thanks, needed to get this off my chest. Thanks.

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I understand how knowing you have a brain injury is preferable to wondering what the hell is wrong with you, and how long you'll have to struggle without a diagnosis. I hope you'll get the hang of managing your symptoms better now you know what you're dealing with.

Best wishes going forward Pink..... Cat x

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Hi Cat3, thanks for the reply. I was in 2 minds whether to put the post online but thought yes do it. Other people may be in a similar situation and struggling on and all I have to say is keep fighting. I suppose fighting on every single day trying to understand what's happening kind of becomes a never ending job and takes over your life. Then the day comes when a diagnosis is made and bang there's a strange feeling like 'see told you so'. I think because fighting on takes over your whole life and then you get to the end point in that battle there's an out burst of winning, but there's also a feeling of being lost, a bit like now the battle is over what happens now. I suppose it's a time to rationalise and make sense of the battle itself. I'm currently thinking why did this fight even take place and how did this catalogue of errors by the medical services begin. What I wrote in the post about how I was perceived and treated by hospital staff is only the tip of the iceberg. I'm going to inform the nhs trust, I think, and suggest that staff especially the patronising attitude of the nurses needs to be addressed and some awareness training may be needed. I think also in my nhs trust this type of treatment is rife throughout the system, it's institutional. Not all the staff are the same and some units are really professional, but there's just this air, this nasty feeling brewing in many of the medical staff like they are all infected with a bad attitude. It's like the nurses in the eye clinic when I went white blind after a procedure, I told them and they just said 'no that can't happen you're making it up' then to go on and make a decision that I was a problem patient and physically push me into the corridor. I mean where does this attitude come from, why are they thinking and acting in this way, surely they must be trained in how to deal with unusual cases. I must be the training, this type of attitude is endemic here and there's an institutional problem. This culture is bad, the ambulance crew after my crash refused to take me to hospital because they said the rules state that if the injured person gets out of the vehicle then they don't take them to hospital. What kind of a stupid rule is that. So it's rule makers and how staff are trained that maybe the real problem, as I said it's institutional.

Oh dear I'm ranting again, that's the rationalisation process in action.

Apologies.

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Vent away Pink ; no apology needed. It's often the only form of therapy we have access to. But now, with your PCS diagnosis, you can apply for a Headway card to silence the cynics in future...…

Take care m'dear, Cat x

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Will do thanks.

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Sounds lie you were treated very badly. Shows us all we must not judge on first appearances. Shame on those nurses. I think a label is important. Not only something to woread with but an announcement to the world. I hope you make improvements however small every day. T C

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Gosh what an awful journey.

Headway issue a brain injury identification card that you probably don't need now but was designed to help people past the kinds of experiences you had. Very sadly being accused of being drunk or taking drugs is a common occurrence.

Now that you have been diagnosed I am just wondering is you get any support from your doctor. Have they referred you to occupational therapy to help with the remaining problems you have?

If you haven't been referred you should ask. Occupational therapy can help you manage the problems you have.

You should also talk to your doctor about these blacking out episodes - they could be a form of seizure. You should also ask for a referral to an optometrist who can look at the vision problems you are having.

I did read somewhere recently that noise and light sensitivity can be caused by free radicals - this is one of the many biochemical outcomes that happen as a part of the secondary injury. The best way to tackle this is to eat as much fresh fruit as you can as they naturally provide the nutrients you need to overcome the free radicals.

Please let me know how you get on.

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Hi Annie, thanks for your concern and information. It's kind of funny because I was trying to get the headway card form signed when they thought I was on drink and drugs. At first they said I had to pay £200 for the doctor to sign it, so I asked why and they stormed off to see the practice manager then came back and said 'who is headway, we don't deal with people like that'. Then they began accusing me of being drunk. I left that day and registered with another practice who have been better than amazing. Everything has worked out since then.

I know quite a lot about the visual element, have found plenty of information and have been tested and prescribed blue lenses which take off the really bad edge. The person I saw though said she was not trained for treating brain injuries however I have found one near Manchester. I will go in for the full hog when I can get the dosh. I may even go to the States.

Optometry for brain injury is not part of the NHS and it's all private as the BMC has not cleared it as a practice. In fact they actively discourage doctors from even mentioning that this is an option, my neuro-psychologist told me so after I asked her why it's not part of the treatment program.

I think that I was on my own so long that I had no choice but to find answers on youtube mostly. There's some brilliant information coming from the US (a lot of crap too), it's all about seeing the bigger picture.

I really like the sound of neural restructuring, plasticity, via meditative practices along with 'experience, repeat repeat repeat. I will hunt down someone in my local university who have active research in this area. On youtube somewhere there is a documentary following a skeptical scientist investigating this process. Now he's a total advocate for the practice after changing his brain form and function.

Anyway thanks again, now I need to deal with the DWP who say there is nothing wrong with me at all. Wish me luck

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Hi Annie must mention the blackouts, they are caused by sensory overload which trigger a hormonal and chemical cascade that causes all the blood to rush from the intestines and the brain to the muscles, the heart beats like mad and you just blackout. Panic attack/flight response mixture. It gives you stomach ulcers and a moving hiatus hernia (hence the abdominal clinic) really painful. My cardio tests show the heart rate is triggered via the brain not the cardio system itself.

Oh it also causes the release of choline, dopamine and DMT in the brain which make you experience fantastic imagery when you are blacked out but conscious inside.

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Hiya. I had my accident in '98 but was just released from hospital the next day with painkillers. Apparently. I have no memory of the cycling accident, Helecopter flight to Hosp, or the following week or so. It took me 6 years to get a diagnosis. 6 looong years. Marriage down the tubes, lost my dogs, new house I'd just built in Australia, all my friends... And STILL the DWP won't accept my brain damage. Got ANOTHER ESA Capability For Work Form to fill in last week. I've been to Tribunal twice already. Here we go again... I wish you well x

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Jeez that's mad, I was going to my MP next if nothing had changed, have you had a diagnosis, if yes go to your MP and stir up the pot. Have you tried the citizens advice or the adult services

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The CAB used to be good but they seem to have lost funding an now only have volunteers. I was under the Mental Health Team in Wiltshire but I've now moved to Wales and there seems very little support. I have letters from people saying that it is LIKELY that I suffered a moderate to severe brain injury but it is always going to be an opinion. I mean, how the hell do I PROVE brain damage. Add to that Frontal Lobe Paradox, where I appear and sound OK and it causes them to disbelieve me even more. It's been over 20 years now yet I still feel that my benefits could be taken away. I had an anxiety problem BEFORE I had my accident and it interacts with the cognitive problems caused by the brain damage. So to have to deal with the DWP going for me again is a stress inducing nightmare. AND my Wife/carer recently had an Op and is now unwell again and awaiting an urgent Gynae Op to test for cancer so I feel that I am struggling to cope. BUT the DWP said that that isn't sufficient enough for them to allow me an extension to the date on which I must return their form. Then prepare for another medical assessment (with a 'Healthcare Professional, ie a nurse, FFS, then I have to ask for another Mandatory Reconsideration if and when they try to put me back in the Work Group, THEN I have to prepare my Case to Appeal at Tribunal. Again. I feel like i'm sinking. Sorry. I seem to have had a rant. And this Post should be about YOU pinkvision. Yours is a terrible story too. I well remember my EUREKA moment where I discovered that the problems that I'd been describing for 6 years was brain damage. On the one hand - YES, i KNEW there was something seriously wrong with me. But on the other hand I was horrified that I was brain damaged and I didn't know. So I do empathise and sympathise x

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Hi have you tried to get diagnosed by a clinical or neuro-psychologist, forget scans etc these people can assess you over a few months and then do 2 sessions of test and identify the areas that are affected, ie memory, concentration, language, processing etc. Is this what you did to get assessed?

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Here's what I think. Dwp and doctors in the UK are working together. Doctors are either being forced to say nothing wrong with clearly to everyone else very unwell/disabled patients, or there might be, could be, etc or they are choosing to not give correct diagnosis making out people are lying or nothing wrong with them at all because it's easier on the NHS and easier for the DWP. I am currently in the non search for work group on ESA. I was on ESA in the work group before my illness and coma as before illness and coma had depression and anxiety. I have that now, though in the search for work group then I was never called in to search for work as judge told them to back off and give me space before I cracked up completely. Then I had bad asthma attack, ended up intubated in induced coma and wasn't expected to survive. Finally got out of icu to a ward told I had heart failure and now brittle asthma plus having to learn stuff again and my weight went down to only 4 stone, plus my muscles had seriously wasted away. Got transferred to ward and the DWP were calling me in hospital trying to arrange a health assessment date. I was all wired up, couldn't leave my bed incase my heart stopped, couldn't walk properly without a Zimmer frame, had heart failure, couldn't hardly talk due to damaged vocal cords from having been intubated and was extremely ill and extremely weak still having only just come out of icu after almost dying twice and not being expected to survive, and DWP thought this was acceptable conduct to ring somebody "me" in hospital whilst wired up to heart machinery when they knew why I was in there because my mum had told them due to a mountain of letters from them arriving daily to my house from them, and her collecting my post. They thought it acceptable to harrass a heart failure coma recovering patient with brittle asthma, who could hardly walk and who suffers with depression and anxiety. Harrassing about health assessment, asking for private information knowing I was on a ward surrounded by other patients who could hear every word. I told DWP that I wasn't talking to them now that I was a patient in hospital on a ward surrounded by other patients and wasn't going to discuss my private business with them whilst here, and did they actually think this acceptable behaviour to harrass people in hospital. The woman's response to me was well we have given you leaway and you did fail to attend a health assessment! I told her are you insane, you think that makes it justifiable to harrass people who have almost died who are in hospital do you? Are you nuts? I only want to ask you a few questions, she said, can you not go to the day room to answer them? I said in my nastiest tone I could muster with my voice so weak - Are you thick? I have heart failure, I am not as I have already told you allowed to move off my bed incase I have a heart attack or collapse, I cannot walk hardly and I can tell you now I won't be answering any of your questions or putting my life at risk to go to the day room to answer your questions, and I won't be answering anymore of your calls until I am out of hospital and well enough to answer them. How bloody dare you call me in hospital you cold thoughtless completely rude woman! Don't call me again, I will call you, and if you do call me again I will be making a very big complaint against you, especially as you know already I am in hospital, have been in ICU in a coma fighting for my life and that my mum explained that to you all, and as you know you haven't given me any leaway or compromised with me, and as you also know I didn't miss a health assessment, I called up from a&e explaining I was there having an asthma attack so wouldn't be able to attend, and the person I spoke to was amazed at my courage and honesty for ringing when in such a dire situation on oxygen and having a asthma attack in a&e! I told that awful woman who called me on the ward not to call back again unless she fancied losing her job, and told her as I ended the call on her that she needs to go and seek help and that she's a thoroughly thick headed evil cow! They never rang again for weeks until I was finally home. And different woman and gobsmacked when I told her about all the letters and phone call in hospital, she was mortified and most apologetic. I went to a health assessment, it wasn't a proper one, just one to check I had really been in a coma. I was then placed in the non work group, but I feel constantly ill at ease and on edge unable to recover fully as always in my mind is the stress and worry of another health assessment looming and a possible tribunal, it's on my mind constantly and so unhealthy for my fight towards full recovery eventually. My symptoms now are hidden ones, poor memory, exhaustion, can't walk far or stand for long, my voice is weak, stomach problems, fatigue, vision problems, low weight, muscle weakness, racing heart, brittle asthma, breathlessness. Sleeplessness at night waking with strange dreams, poor concentration, not feeling I'm really here. And loads more symptoms. Today have been referred to a neurologist as I shake and my walking is messed up. It's now 17 months since my coma, and hoped by now hospital and doctors appointments would be all done and dusted but here I am still struggling, and still not discharged as an outpatient from cardiology!

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That's an epic, I'm really burnt out, will read again tomorrow and get back.

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Oh dear that's distressing to read, must have been horrendous to experience. Have you contacted any agencies like the CAB to help you out. I've discovered that many of these agencies are limited to what they can help you with but they can point you in the right direction to find the ones that can help you, you've just got to keep going and be polite etc.

A friend of mine works in middle management in the DWP, she says the whole process has been dehumanised for a long time and most of the staff hate their jobs, but most do the best they can within the rules that govern them. Like she says 'I got to feed my kids and keep a roof over their heads'.

Where GP's are concerned there are better options, finding a good GP is the first task, change practices until you find the right one.

Anxiety and depression that's a mental health issue, have you seen anyone for that. A lot of the time doctors see what's in front of them, ie anxiety and depression and treat you for that. Mind you having a mental health issue can help you too, check to see if you have a community care solicitor that works in your area, you can get free representation for dealing with government and local government services to make sure you get the correct support.

Life will get better you just got to keep going and eventually you'll get there.

Good luck, message any time.

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Yup. I did that up in Lincoln. Saw a Neuro guy in, I think '04,who did tests over two days. He came back with a report that said sumut like 'Yes, the tests show sequelae of brain injury BUT not enough to explain the problems he's having.' But he would not take the pre-existing anxiety disorder into account (not his area of expertise). THEN I see shrinks who say 'Yup, chronic anxiety disorder and he FEELS that he has brain damage.' (but they won't RECOGNISE THAT as not their area of expertise.) And the two strands of Medicine won't talk to each other. Maddening. I've seen more ' -ists' , Psychiatrists, Psychologists, Neurologists, Neuropsychologists... than you can shake a stick at BUT it never seems to get me a letter that will get the DWP to give me a break. Sigh.

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Have you tried to get your GP to find a definitive answer by getting reassessed, 2004-2019 things have changed in the thinking behind brain injury. Try again and again and again. anxiety disorders and brain injury can show the same symptoms, it's either one or the other or a bit of both. See if you can get assessed again where they can separate one from the other and maybe find an overlap if there is one. If you say you have anxiety they will treat you for anxiety and if you say you have a brain injury they will treat you for that. A brain injury can cause anxiety disorders. so which is it, you need an answer, you need to find out. Show the GP the commitment to find the answer and get a referal. Keep fighting and get what you want don't take NO for an answer. If the GP won't do it change practices, you really have to convince them that you want to find out to get the right treatment to recover as best as you can. You sound swallowed up by all this, you got to believe and fight.

Hope that does not sound harsh, I'm trying to say sit down think about it, grab it, believe it and go get it.

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I KNOW that my pre-existing anxiety disorder interacts horribly with the brain damage that I suffered in '98. So I have both. A Psychiatrist once even found a piece by a Dr or Prof Leishman or Leishman that said that if you suffer brain damage, the worst pre-existing problem you can have is anxiety. But I sent it off to the DWP by mistake (brain damage innit) and I now can't find it again on t'interweb. And the Psychiatrist has moved on. Grr! I've been battling for over 20 years. I ain't giving up. I went to St Mary's Hosp London to see Prof Sharp, Consultant Neurologist, and he was really helpful. But NOTHING seems to satisfy the authorities. And now that I've moved to Wales Prof Sharp won't see me again. Out of area... Right. Sorry to moan. I need sleep. Keep fighting pinkvision.

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Hope you find an answer, just ask anytime and I'll put my opinion across as would most other people. Write a post and highlight all these issues. Have you asked headway or other charities like MIND or disability charities for help. Some one mentioned adult services to me in another post ask for an advocate. Too much screen time for me now will catch you again.

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It is sad that there are people in the health care field who are so ignorant and rude. I hope they never have to experience their own care or lack of it. I'm Glad things are finally working out for you.

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Thanks, like I said it's institutional, down to poor training, which ultimately leads to lack of funding and management.

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I even had a GP in Wilts ('06 I think) say to me in a letter sumut like' I've been asked to complete a DWP form, seeing as you didn't mention prior to 2004 having a brain injury, I'll need you to prove it. ' Well of course I didn't mention it - I didn't KNOW. I just knew things had changed and I had problems with higher anxiety, fatigue, planning, sorting, organising, instigating action, motivation, concentrating, staying on task, light and sound sensitivity... but nobody picked-up on it. I'd been describing these problems for 6 years. The Neuro report that I had done in Lincoln and the shrink reports didn't satisfy her. Oh, I was even talked into having an 'anxiety reducing' operation in Melbourne, Oz, that cost four grand. A bilateral endoscopic transthoraxic sympathectomy. They deflate each lung in turn and go in with an endoscope then snip nerves either side of your spine, cutting nerves that make you blush and your face sweat. Didn't cure the brain damage that I didn't know I had, obviously. So, to satisfy the GP AND DWP I had to track down my ex wife to find out what Hosp I was in after my accident (Brisbane, Oz) as I couldn't remember. Then I had to jump through the hoops of getting lots of forms authorised at Swindon Court by a JP to send to the Hosp to get them to release my records. Did the GP apologise when she got the forms? Don't make me laugh. It isn't just you and me pink view. How does ANYONE who has brain damage prove it? Not all damage shows on a scan. And brain damage can interact horribly with pre-existing problems like anxiety (like with me) or OCD, etc.. My brain is like a laptop that has been dropped. It looks OK and even sounds OK. But some of it's functions are really slow. And the batteries run-down very quickly and take a long time to charge.

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Yep I get that, but mate just say this to a GP and ask to get a modern assessment. If this does not happen you need to see your assembly member for the medical side and your MP for the DWP side. Just keep going don't stop, if you know you are right just keep on and record everything. Have you tried getting free legal advice, this is not the CAB, someone mentioned a charity or group of solicitors and law students etc that give time to help people solve issues. I'm sure if you searched you'll find them.

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I'll read this again tomorrow. Thanks. Right now I'm out of mental energy and need to sleep. I ain't doing too bad. 20 years + and I'm still fighting. THAT takes some doing. Sleep well.

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What dreadful treatment you have had to put up with. Sadly its all too common with non-visible disabilities. So I completely understand what you mean when you say you were glad that a BI was found. Thanks heavens you found someone to take you seriously.

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Thanks for your comment, time to straighten out now and move ahead

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