What effects of brain injury do you experience? - Headway

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What effects of brain injury do you experience?

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Suicidal thoughts.

Marnie22
Marnie22 in reply to Leonard68

Hi. If you are in the UK try contacting Maytree. They changed my whole life. They have a website and their number is 020 7263 7070.

Best wishes. ๐Ÿ™„๐ŸŒธ

Leonard68
Leonard68 in reply to Marnie22

Thank you Marnie22, I will! try them , and thank you very much, much appreciated.

Marnie22
Marnie22 in reply to Leonard68

I do wish you well.

Marleyboo
Marleyboo in reply to Leonard68

Hi i too have recently being having suicidal thoughts. I get down quite quickly and have a lot of extended family issues that im dealing with too plus all this coronavirus stuff. I will have a look at Maytree thankyou Marnie22

Marnie22
Marnie22 in reply to Marleyboo

They were so amazing to me. I wish you all the best. ๐Ÿ™„๐ŸŒธ

Leonard68
Leonard68 in reply to Marleyboo

Dear Maryleyboo, I know EXACTLY what you mean,my family live a few yards from me,have not spoken for nearly two years

Social and work problems. Real problems. No help. Problems in my life . I want to end it .

Marnie22
Marnie22 in reply to oliver1234

Hi. Just wanted to say if you are in the UK try contacting Maytree. They have a website and their number is 020 7263 7070. It doesn't matter where you live in the UK. They were amazing and changed my life.

Wishing you the best. ๐Ÿ™„๐ŸŒธ

Ability to hold down a job despite being a postgraduate speaking 5 languages...

Misty4
Misty4 in reply to Anthonymd

I canโ€™t even get a job despite having post grad degree ๐Ÿคทโ€โ™€๏ธ

Anxiety, agoraphobia, relationship breakdowns, fear, confusion, over and under eating...increased libido! So it ain't all bad ๐Ÿ˜‰

Living perceptions became an issue & complex PTSD has become part of my conditions. Another symptom is all relating to my mental strength due to ignorance of an invisible injury.

Marnie22
Marnie22 in reply to Tony-Muzzy

I read your post with interest. My brain injury happened in hospital when a surgeon disregarded proper procedure during a minor operation. I had terrible anger after this and (eventually,) a neuropsychologist diagnosed with PTSD. After a very long wait I started EMDR therapy with a wonderful psychologist. This actually completely sorted the anger problem, but through it I discovered I had Complex PTSD. My psychologist recommended Bessel Van Der Kolk's book, 'The Body Keeps The Score.' There are lots of videos with Bessel Van Der Kolk on YouTube. I am only just getting to grips with this, but I finally understand why I have had the problems I have had and where they originated. I am also learning that there are things to help heal these things.

Have you had any support with all of this? You are welcome to private message me if you like.

Take care. ๐Ÿ™‚๐ŸŒธ

Attention, visual processing, emotional lability, and initiation, planning and organising - ie. actually doing stuff! - also feature.

Yes, doing stuff is very tough. ๐Ÿ™„๐ŸŒธ To think that I used to just get on with life.

Hidden
Hidden

One of my main problems are asking the same question numerous times over the space of a matter of weeks/months as I often forget what I was told. This really annoys my wife.

Marnie22
Marnie22 in reply to Hidden

I understand that. I have a problem where I can't remember what I have told anyone, so most of my sentences begin with, 'Let me know if I have already told you this, but.....' ๐Ÿ™„๐ŸŒธ

Difficulty with social situations

Delayed information processing; confusion and disorientation for over an hour on waking; cannot see something that's right in front of me; sensory overload and shutdown; emotional lability; hyperacusis; difficulties using keyboards; word finding problems; cannot remember faces; lack of empathy; cannot multitask; concentration and attention problems; feelings of loss.

Just needed to add - I am SO impatient now - just the opposite of before.

word finding, stuttering, confusion

I have a much better long term memory than a short term memory.

I would have added FATIGUE to my problems because I used to have problems there but as I have got older, my diet has also changed for the better. I feel a lot more healthier because of the things I eat and also do not get so fatigued.

Headaches was something I used to get a lot but I don't get so much of those now either, just the odd one on occasion but I would never treat it with a paracetamol, like I used to. No, I rely more on nature now. Yoga will fix it or frankincense essential oil.

I can get irritated by a lot of things, especially when it involves the government :).

Definite balance problems. My cerebellum has been damaged by my 2nd brain tumour.

sine 96, I have always had speech problems but it has got more understandable over the years.

Doctors told me I have a right-sided paralysis in 96. I don't see it as a paralysis as such but more weak muscles in the right side of my body.

Paralysis suggest that I can't move the right side of my body when I can.

Anyhow, so I have weak muscles and it is especially noticeable in the right side of my face.

My right eye is stuck, looking inwards like it is permanently cross-eyed.

My smile is not as strong on the right side.

I cannot naturally press my lips together.

I have found it more hard to hear as well, especially on the right side.

Marnie22
Marnie22 in reply to Matt2584

You have been dealing with such a lot of stuff. I liked your but about getting irritated - then you mentioning the government! I know that feeling. I try to laugh about it, but it's not always possible. ๐Ÿ™„๐ŸŒธ

Matt2584
Matt2584 in reply to Marnie22

Sometimes the things the government say or do will make you laugh in utter disbelief.

But I suppose no matter what outlandish and greedy things the government might do/say , you shouldnโ€™t get yourself too angry with their actions as getting angry or worried about the situation degrades your health.... itโ€™s easy saying it but can be hard for a BI survivor.

I can only read/hear what they say/do, laugh it off in disbelief or say โ€œFor godโ€™s sakeโ€ and hope that what I heard/read was misinformation... it likely wouldnโ€™t be but one can hope :).

Iโ€™m surprised headaches are down so low . I would say this would be the number one problem with my sons brain injury

Vast spending, emotional lability , depression, anger and anxiety, confusion, inability to organise, lack of empathy, fatigue

Marnie22
Marnie22 in reply to Misty4

Oh, I forgot spending! That's so true. ๐Ÿ™„๐ŸŒธ

Misty4
Misty4 in reply to Marnie22

I gaily spent everything I had on 3 static caravans, didnโ€™t read anything or really look into the consequences just signed every legally binding contract that was put in front of me x

Whilst there are many symptoms and that we will all have a selection of them at some point during our journey, there are many simple ones that are often overlooked but can be treated very easily, especially at the outset:

Understanding: Many of us have heard of concussion, brain injury etc. but really have no understanding of the injury and how it will affect us and our families, work etc. And how to alleviate the symptoms

Acceptance: Many of the injured and surprisingly that of the family and friends are in denial that anything is wrong. Many of the injured chase around month after month, chasing the "miracle cure", read up on research, do this / do that. etc. When they could be diverting their energies into acceptance, work with what you have got and move on from there.

Frustration: One of the causes of negative behaviour (anger, mood swings, depression etc.) is frustration. It can be due to lack of understanding, acceptance, getting treatment, isolation or where you are now compared to pre injury.

Resolving these doesn't require expensive medication or resources but addressed at the right time by an experience practitioner would ease the "recovery" and lifestyle of the injured and families

Marnie22
Marnie22 in reply to sospan

Very well said. I think the main thing that caused me real distress and still isn't fully resolved after over four years, is that the surgeon who caused my brain injury subsequently lied about it so none of the doctors would believe what happened to me. It took years to find a sympathetic GP. ๐Ÿ™„๐ŸŒธ

In addition to all of the above - Epilepsy. Anxiety. Tinnitus. Weakness down left side. Confusion. Facial disfigurement due to poor quality cranioplasty. Could go on!

Anxious about almost everything!

I was having balance problems. My primary care physician gave me Vitamin D. 50,000 IU once a week. I am much better.

Marnie22
Marnie22 in reply to BobJensen

That's very interesting, thanks. ๐Ÿ™„๐ŸŒธ

BobJensen
BobJensen in reply to Marnie22

You're welcome. Google the effects of lack of Vitamin D. There are many.

Dizziness, vertigo, extremely poor word recall, low to zero motivation, zero libido, low to zero attention span, constant head pain for many years, extreme exhaustion & mental fatigue, confusion, huge loss of personality, lost ability to learn new things i.e. snail pace brain processing skills, social anxiety, loss of desire for passions especially my job that I used to adore & lost desire for learning i.e. courses in my industry, feeling of being soulless.

The worst is the near permanent nausea brought in by balance problems. Yet to know exactly what causes it.

sospan
sospan in reply to Cornishboxer2

Hi,

West Wales General in Carmarthen has an excellent balance diagnostic facility. Just need to get a referral to them - long timescales before Covid, longer now !

Although sort of embarrassed my self in one of the rooms. The consultant asked me what my symptoms were like. One of them I stated it was the ringing sound like the noise from the air conditioning in this room. He smiled and said this was an acoustically silent room where the only sounds were coming from me and him ! He said, lets put a tick next to tinnitus !

One test which was really amazing, I had never seen it or experienced it before. They darken the room completely and tell you to hold your arm out in front of you. They very slowly raise the light level. Slowly, you arm comes into focus but has an aura around it like you are one of the "ready break" kids. really fascinating.

Cornishboxer2
Cornishboxer2 in reply to sospan

Thanks for the helpful suggestion. Sounds fascinating! I used to like the idea of the ready break glow ๐Ÿ˜€.

Am waiting for a video chat first with vestibular lab at Neath Port Talbot. May then get a physical referral if Iโ€™m lucky I hope.

My brain injury was a completely unexpected stroke. As I didn't have FAST indicators, the ambulance crew talked to me for an hour before realising that I needed a blue light run to A&E. When I returned home, I didn't know where the bathroom was in our bungalow although we had lived there for 25 years. Although I had driven up to 30,000 miles some years, I had no idea how to get to even the local hospital. That has mostly returned. I have permanent right-side hemianopia (loss of peripheral vision on the right side) that meant my clean driving licence of 50 years was revoked. Although the DVLA promised a junior minister and Parliament that drivers with hemianopia would get training before a driving assessment, that never happened. Therefore like thousands of other car drivers whose licence was revoked as they had less than 120 degrees horizontal field of vision, I have to rely on my wife to take me to places. On the other hand, I was lucky as the stroke could have been far worse.

Surely if someone who only has one eye can drive, I would assume that they have less than 120ยฐ field of vision, they just have to demonstrate that they can recognise depth of vision. Worth a try.

A person with one eye can drive if they have a minimum of 120 degrees horizontal field of vision without moving their head. In 2010 when the Government evaluated the effect of implementing the EU Third Directive, it was thought that a maximum total of around 600 Group 1 (car drivers and motorcyclists) licence holders would be affected. Instead it's thousands of drivers every year. Although the Independent Complaints Assessors recommended that the DVLA publicise the "exceptional case" procedure for getting your licence back, the DVLA haven't complied and won't give a date when it will be published in the medical guidance document. I could bore for England on this subject so I'd better stop there.

Strangely, the Stroke Association don't have a policy on this and, just about all organisations keep well away from it. Equally, I know someone in their 80s with an inoperable tumour on their aorta who is aparently safe to drive.

That is mad. I'm sorry John. Thought that would have been a way to go. And don't worry about bore for England, I thought I held that one ๐Ÿ˜‚

I know every government body seems to either not have a policy for x, y, z, which is usually in breach of an Act of parliament. I'm sure this probably falls into the same scenario.

Really gets my goat, considering the amount of legality I was bound by when I was a RN(MH). Didn't have the option to ignore the law in any aspect, not that I ever felt the need to hide. Now I am disabled, the same blooming law's can work against you.

I hope that you win through in the end.

Anxiety, loss of confidence, weight gain (constantly hungry) and less likely to go out to socialise

Suicidal ideation (not currently active), double incontinence, difficulty sequencing, motivational difficulty, loss of general living skills, hypersensitivity to noise, tinnitus, inability to find pleasure in normal pleasurable activities, general concentration in simple tasks, over concentration in complex tasks to the detriment of other needs, neglect of self, inability to work, loss of relationships, inability to create new relationships, difficulty tolerating 'professionals' who are just treading water until retirement, or been promoted sideways to reduce their dangerousness. Others have more problems with my problems than I have. North/South device inequalities in availability/quality of care services.

Symptoms of vitamin D deficiency can include muscle weakness, pain, fatigue and depression.

BobJensen
BobJensen in reply to BobJensen

It makes a big difference.

Nausea during or following bad bout of fatigue.

Sleep problems

Left side weeakness

no sense of smell or taste.

Also a lot more that I had not remembered until I read the above messages.

The effect which I find the most irritating is faceblindness! Fatigue and memory are far worse and my knocked vestibular, quite apart from vertigo attacks, is potentially more risky as I am at risk of falling if dark and busy etc.

But itโ€™s not being able to work out who people are, who apparently know me, I do find really frustrating!

"faceblindness" - oh yes I forgot that. I get that with people I've met infrequently or from the distant past. People can speak to me and I've no idea who they are.

Saying wrong words. Afraid to go out (fear of covid) Confusion. Brain fog. Feel like I'm in a dream. Vivid & disturbing dreams.

Nausea and vomiting, forgetfulness falling asleep really deeply and wake up not know where i am, even in public, low vision. Inability to multitask

I was getting my words mixed up so started using Omega 3 Fish Oils and found this helped

on behalf of my partner, no taste or smell.

I only have a small scar on my right thalamus and cerbral peduncle and I have all these symptoms:

Stiffness, weakness and pain down left side (spasticity), excessive blinking, bruxism, urinary frequency, apathy, cognitive impairment, tinnitus, anxiety, sensory overload, no motivation, no enthusiasm for anything, cant tolerate noise, nausea, impaired smell and taste, olfactory hallucinations, nightmares, unrefreshing sleep and the need to sleep more than normal, daytime sleepiness, extreme mental fatigue almost like brain wants to shut off, walk like a drunk, bowel problems.

And to top all that off the GP thinks I have Fibromyalgia too. When I wake up my hands feel like they have been crushed, I have stabbing pains in my feet and I ache everywhere.

I have a neurologist who didnt seem very helpful last time I saw him, so I put a complaint in and asked to see a different one. Now I have an appointment next week with the same guy and dont know what to do. All I want is for him to listen to what I am dealing with on a daily basis and get me the help I need. Sometimes I think we are just a slab of meat with a number, not a human being. They have their scan, that's the results, now off you pop...........Next!

Oh yeah, I missed anger and frustration off the list!

Inability to control emotions. Behavioural problems. Sight and hearing problems. Impulsivity. Intrusive and Suicidal thoughts. A multitude of deficits which are 99% invisible.

Vision and hearing problems, pain, behavioural and impulsivity problems, intrusive and suicidal thoughts, lack of control of emotions, insomnia,

Intolerance to noise/ screens

Poor attention

Difficulties processing information

Unable to multi-task.

Cognitive downturn

Also Eye sight defects, personality changes, anxiety, PTSD,

Sense of loss, confidence, self esteem. In the 40 years since my RTA that was never understood/addressed & I'm now left in a social isolated, lonely, emotional mess.

After a bad head day, I get a day or two of bad TBI gut.... itโ€™s not really an understood issue in UK.

Had a TBI 12 years ago. was unconscious for days. I had a fall from height, broken arm and head injury. I can recall nothing from about a month prior to the fall, and nothing following it for 3 months. I was paralyses down my righthand side I had a CT scan. My Glasgow Coma Scale score was 5 or 7 out of 15, depending which hospital letter you read. I was on a ventilator, a C pack, and finally Oxygen. I didn't speak for 8 days, but even then it was only one word and it wasn't decipherable. I initially couldn't walk, but it didn't stop me trying, and fell frequently. I had to re-learn how t do everything. It has been a long arduous battle. I was formerly a firefighter and they paid me for six months before reducing me to 1/2 wages. I left hospital after six months, and started on non operational work at the station, so back to full pay! I had return to work training, attended the Fire Service rehabilitation on three occasions, and attended a recruitment course in an attempt to regain operational capacity. I was unsuccessful and retired on ill health in 2012! I now work as a support worker with autistic adults. I have gained a BTec in social care post accident. I run 1/2 marathons, completing my first just under 5 years of my accident. I walked the 95 mile Staffordshire Way in three days on the second anniversary of my fall, and cycled 120 miles from Stafford to Barmouth (Wales) five years after my fall. I am holding a responsible job, my employers and colleagues know about my history and I am open about the mental challenges, memory difficulties and balance problems I have experienced, and very occasionally still do. People are not too disappointed if it takes a couple of weeks after starting with us for me to remember their name! My negative behavior in the past 12 years has been erratic, unpredictable and overwhelming, but increasingly, controhave been known to apologisellable, and not immediately discernible. I have become more normal, but it has taken effort, training and practice from me, and patience understanding, compassion and a hide like a Rhino from those around me! Hauling me from out of the depth that TBI had dropped me was a team effort, I owe so much to friends, colleagues and family; but more than anyone to my long suffering wife. I have heard that 75% of people split up with their partners after TBI! I am not surprised at all. I am a very lucky barstward! At the time I might not have seen it,! However I have become more aware when my behavior or response is unreasonable, and have even been known to .......... apologize!

Here is to the next 12 years, a consultant once told me, 5 moths post accident, that my recovery would probably halt after 18 months post accident. BILL HOOKS! I'm still making progress today, but as I have said I have so many people to thank!

Epilepsy and hemianopia came with my injury!

Short seizures or absences

Epilepsy

When I was diagnosed with SREAT around 4 yrs ago, I had no idea what it was, I just thought hey it's not terminal, I will get over this..I will be fine in a few months, how wrong .. my life has changed massively, Its been a long journey, and by making some changes in my life, and focusing on my achievements, and not so much on what I can no longer do, have helped me along my journey..I feel I'm in a better place now x

I find I also swear a lot more, and uncontrollably, when I am very frustrated and angry. I also start tasks and then move onto other things, forgetting the original task I started.

Body temperature regulation is way out of kilter! Either bloody freezing or sweating!

Oh and a thorough feeling of disconnect from reality.

I need 'Support', when away from home, as I can 'Sometimes' become Confused/ Lost. I now live in Supported Living, which means that there is always 'Someone' Available at ALL Times. I do however 'do' my own Cooking, Washing, Cleaning (Who an I trying to kid!) and Personal Care.

I also belong to this 'Forum', along with 'Other' ones, on Health Unlocked. I use 'Email', some On Line Shopping and I also write Stories, and Prayers, for my Church- which I haven't been able to attend recently.

Considering, that Twenty-Two- years ago, My Mother was told that I wouldn't survive the HOUR! I had a Kidney Transplant, in July 2013......

AndrewT

After my first TBI in 2004 I was left almost completely blind & with very little mobility (two neighbours took baseball bats to me just because I'm gay!) Over the years a lot of my sight & balance has returned. I now have a very talented & beautiful guide dog called JJ & he is doubly trained to both guide me & help prevent me from falling. The brain injury was to the left side of my brain so I fall to the right; JJ is trained to counterbalance me to the left; I'm a heavy man these days, so JJ is one very strong doggie! ๐Ÿ•