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Severe TBI and Social Anxiety

Hello everyone,

I am new here and I thought i'd say hello. I am a 35yr old male who had a fractured skull and subdermal haematoma when I was 11. It was classed as a Severe Traumatic Brain Injury. 3 weeks I was in hospital and I recieved no form of help particularly targeted on my brain injury after.

I have had a lot of issues with social anxiety and depression ever since and it's only until a couple of months ago my current doctors even knew I had such an injury. That detail 'slipped through the net' - I just assumed it was in my medical records all this time. Turns out i should have received a lot more help than I got. Does explain the frankly awful treatment I have had over the years, from doctors screaming in my face to 'get off the playstation and do some exercise' to doctors insinuating that I am making it all up. I actually thought my anxiety issues were unrelated to my injury since no doctor ever linked the two. I have found it very hard to start a job because of this, its cost me 5 jobs and 3 places at higher education overall.

Now however, after wondering if my injury was behind my issues, some internet searching and a visit to Headway, I am about to have a 'neuro psychological evaluation'. I was wondering if anyone out there had a similar experience and if there was any treatment received after that helped? Its ruining my life and I need some sort of hope that things after this evaluation will help. I don't think I can go on for much longer without help.

Thanks for any advice you can offer

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Hi monkey. The information below is copied from the 'Walton Centre' website and gives comprehensive details of a typical neuropsychological assessment :-

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Neuropsychological assessment and testing

What is a Neuropsychological Assessment/Testing?

Neuropsychological assessment is a way of helping the doctor or other health care professional to better understand certain problems you may be experiencing. For example, you may be finding it difficult to:

Remember things

Concentrate

Carry out activities that you used to find easy to do.

This is a non-invasive assessment. This means that it is NOT a medical assessment and DOES NOT require any type of electronic or mechanical equipment. No treatment or medication is required.

What does a Neuropsychology assessment involve?

You will be asked to complete some tasks. These may include memory tasks (remembering things), answering some questions, solving a few problems, making some simple drawings and reading. REMEMBER: Most people DO NOT complete all tasks. This is simply because they find some tasks easy and others more difficult.

How long will it take?

After the initial consultation with the clinician a further appointment will be given to complete the neuropsychological assessment/tests. This appointment will take approximately two hours and you may need more than one appointment for the assessment to be completed.

What will happen after I finish my assessment?

It will not be possible to let you know how you got on with the assessment on the same day. Your performance on the tasks will be evaluated. A report will be forwarded to the person who referred you to us (for example, a neurologist or neurosurgeon), and you will be invited back for a feedback appointment to discuss the results.

Do I need to bring anything with me?

If you use glasses for reading, please bring them with you, because some of the tasks may involve you reading or looking at the pictures. If you have hearing difficulties and you utilize a hearing aid, please remember to bring it with you. Please bring your appointment letter. Any medication and/or special dietary requirements to cover the time here and the length of the journey each way.

Who carries out the tests?

After reporting to the Neuropsychology Department reception desk, an assistant psychologist will show you to the room.

Often, they will ask you some background questions, as well as details of the problem/s you have experienced, or that you are still experiencing. They will then explain the procedure and take you through the tasks, remaining in the room with you throughout this time. Feel free to ask them questions and to tell them about any concerns you may have at any time. For example, you may be getting tired after a while.

Will anybody else be in the room?

Sometimes there might be another person observing the assessment for training purposes. However, should this be the case, your permission will be asked.

How often will the tests be undertaken?

Often the assessment is only done once. Sometimes the Psychology Department may be asked to re-assess you after a certain period of time, for example 6-12 months later, to test for any improvement or deterioration

Can I bring someone with me?

Yes you can. It can sometimes be helpful to hear from someone close to you how you are coping with your problems and if they are affecting people around you. However, this is up to you, you can come alone. While you actually complete the tasks it would be ideal for the friend/relative to wait for you in the waiting room where there is a television, or in the café on the ground floor. This is because you may be distracted by their presence, or you could feel uncomfortable talking about certain issues in front of them.

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Hope this helps !

Best wishes, Cat x

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PS Don't be surprised if you feel you under-performed. During my assessment my concentration lapsed periodically (though I was only 2 months post-haemorrhage and I recognised there were deficiencies).

It might not be so daunting to someone whose injury dates back to childhood & whose brain has had more time to regenerate.

The environment is quite relaxed and the exercise is conducted in a none-judgemental manner. I hope the assessment will weed out any issues and lead to a firm diagnosis and the back-up you so bady need. Good luck. x

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Hi I am Mehran from Iran i had sever TBI about two years ago.i was in coma for 3 months and so on.stell there is problem i my right side they call it spastcity .and I feel very tired when i walk or doing some sport.but i found that every thing is in our mind !

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sorry i forget this is my email mhsoha@gmail.com

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Hi monkey

I had this test after my illness (ME and FND) about 4 years ago. I was going through a period of physical remission where I had regained use of my legs and my exhaustion had lessened significantly - but my cognitive functioning was still shocking. I have always suffered with social anxiety too so know where you are at with that. Sorry this is a bit of a ramble as it turns out!

The tests were pretty much as Cat described above. I remember stuff with cards with different dots on, a board with a kind of map on (I think it was a zoo plan) where I had to get from one point to another passing something on the way. There were tests around words (mixing words up is a problem at times) and general memory tests where they ask you to remember 3 words then ask you later. Oh and a story which I was asked to recite back to them 3 times over the time of the test and which for the final time I had only the scantest of detailsl left in my head...

It was a shock to get the results tbh, as they showed that based on my word use ability, previous level of education etc. I would previously have been expected to be in the top 5% of performance but was now between 50 and 75%.

That is still better than your average Joe of course, but in some areas it represented an almost 50% loss in function for me (particularly around memory and planning as I remember) and it did explain why I was finding it so hard to adjust. I think it did help, psychologically, to have some tests that revealed that I wasn't imagining this problem, or exaggerating how hard it felt. There were indeed major cognitive defects, and I felt it.

In terms of therapy I was lucky to be working with a neuropsychologist at the time who was helping me to adjust with the emotional impact of having lost health, job, home, etc. because of my sudden illness, and from the evaluation we were able to target therapy - but a lot of that was about basic coping strategies and simply accepting that I was not as cognitively able as I used to be and that that was unlikely to change.

Unfortunately I had a major relapse physically soon after the tests so being unable to walk or sustain any physical activity rather took my available, limited attention span for some time, but I do remember that we focussed a lot on trying to avoid reliance on short term memory, by writing everything down (my house used to be littered with Post its!) and accepting that there were some tasks I shouldn't try (I had to decide that it would be best to stop cooking for a while, for example, after I burned all our pans and left the gas on and nearly blew us all up twice)...

Fast forward another 4 years and I have over the last year gone into remission from my physical symptoms again (as long as I manage my life with care and don't overdo things). My cognitive function has also improved, as would be expected - as FND in particular drains your brain of energy as it tries to constantly work out how to do stuff like walking that it shouldn't need to figure out. But it is still not where it was pre-illness. I still rely on post-its. I still struggle with processing things in order. I still burn pans and leave the cooker on (we switched to electric!) I still say to people 'see you next week' because I don't remember that 10 minutes ago we were talking about what we would do together tomorrow...

I cope with it by making sure that everyone I am with understands my limitations and knows to check with me that I mean what I say. I tell people that it is ok to remind me about stuff. I tell them that I might forget to come to things or come and not have the stuff they were expecting me to bring or to have prepared what they wanted me to prepare. That has helped a lot with the social anxiety too - I don't have to be perfect and I know that people have to take me as I am. I am a lot less under pressure in social situations now than I used to be.

I try to keep active and function at the highest level I can because I feel it is a ,use it or lose it' situation. The brain is an incredibly resourceful and elastic organ so if I keep trying it will, over time, get better at these things. But I don't beat myself up about my mistakes - that is part of the reason for being so open with people about it. If I get it wrong, I will be very apologetic but only on the basis that it is understood that I can't actually help it. I am not forgetful or illogical on purpose or because I don't care, just because my brain struggles with that these days.

For the last year or so I have been doing some part-time study again. It is really hard. I read books, write notes and stuff just evaporates. I have had to change how I study. But again, I am coping, using various strategies, lots of highlighters and post-its, and by adapting how I do stuff.

So I guess my message to you is that if your cognitive function is impaired then that IS a real difficulty, but it is a hurdle you can get over - just that whereas before you might simply have jumped and been done with it you may now find you need a series of step stools, a handrail or willing supporter, and possibly a set of instructions too...the key thing to remember though is it is all do-able. Just differently.

Very best wishes for 2018.

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I suffer from anxiety due to a brain injury.

I have been on different meds escitalopram diazepam etc. Currently taking venlafaxine.

Anxiety can be difficult for anyone but add the brain injury and it multiplies by a million fold. Try to eat well, cut sugary foods, don’t drink alcohol and get exercise. This will help but I feel meds especially in my case are a must

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hey monkey back then once you were ok you were ok you were out, on your own to lose friends because of your behaviour, inappropriate behaviour noise intollerance, aggression and mood swings and stranger phobia.

you be a pain in the ass and get all the testing you deserve, youve waited long enough for it.

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Hi

My son had a Subarrachnoid Brain Haemorrhage 6 years ago when he was 40. We had no real understanding of issues that could arise as a result of this until he saw a neuropsychologist.

He helped so much with understanding changes that had taken place, no filter, lack of empathy, OCD tendencies (lessened now), repetition, fatigue, quick tempered, impatient, feeling overwhelmed, unable to cope when a lot is going on etc.

Then I found this site and discovered that people on here feel the same way and have so much in common which is reassuring and so good to share with people who understand.

This knowledge helped us both so much with understanding and things seemed to slot into place. We both talked a lot, and still do at times, about how we can misinterpret and misunderstand each other.

When my son was due to leave hospital a leaflet was left by Headway, if only I'd looked at that leaflet and contacted Headway earlier, it would have made such a difference to our knowledge and understanding.

We were ignorant of changes that could happen, even subtle changes, but it was after seeing the neuropsychologist that we wanted to find out more.

Headway has been invaluable and I recommend that people look at their website time and time again in the hope that it will raise awareness.

I hope your appointment helps you as much as it has us x

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