Research/Recommendations beyond the Norm (Bristol area)

[Warmbeetroot]

Hi all,

Looking for links to research, support and advice that I may not be aware of, on the following matters. I'm proactive so any help is really appreciated:

- bike accident nearly 3 months ago, frontal lobe severe impact, MRI after CT showed shearing / contusion, feel very lucky overall, physically recovered great, executive dysfunctions and emotional control messy but improving through awareness and techniques

- massive anxiety, insomnia, depression and anger issues; never had before

- researching current symptoms opened eyes to potential issues on brain from repetitive heading, my previous life as a footballer (last week even more research linking to dementia) sadly I was the classic player known for heading and playing on after serious collisions and playing the next game after being knocked out

- saw Neurolgist and Neuropsychologist too. Unimpressed with psych tests so far, seemed very limited and not push the boundaries that much. Seemed to know more about latest research than the expert, which is not reassuring

- the accident happened 3 months into a new role I had worked severely hard for. I was only on SSPay as a result. Couldn't return until deemed capable of role. Definitely not capable for a good while. Left role. Zero help from government / esa / universal credit in interim; I carry no debts, wife has a good role, have a toddler on our hands. I suppose I am deemed ok in comparison to who they usual help however I have always paid contributions and still have large outgoings to cover. Certainly not aiding the symptoms

A lot of topics but I just wondered if there is anything out there that may help these topics. I am a self helper and have researched tons and changed a lot to daily life. E.g. meditate, eat keto diet, alarm and calendar everything, keep journal, exercise, research to gain knowledge, sleep... All working but want more. VERY keen to help be part some research if anyone is aware of any.

Many many thanks in advance!

[Hidden]

Hi, I went pro active after 8 months and doing ok, nearly two and a half years in now, and have solved many issues. Totally different to yours though. I found the best info comes from the US (decades ahead of NHS) especially the Veterans Association, loads of lectures etc on youtube, in fact youtube has tons of filmed brain injury and neuroscience lectures and talks. You just need to trawl through and find the good stuff, also check out Amy Zellner (I think that's the right spelling), she is a journalist who had a BI and now spends her time researching and informing BI sufferers. You will find good leads in subject areas, then make your own searches from there. You say you are an ex footballer, professional? Why not contact the FA and ask for advice, (if you headed the ball a lot they may feel guilty) the professional sport world will have top end BI psychologists and trainers. Give it a go, you never know. As for benefits just give up if your wife is working. You struggle to get them if you are single with all the medical paper work. (17k in debt). The stress makes you ill and drives you nuts and probably/ definitely inhibits healing.

You say you are 3 months in, that's still early days I think, your problems are still manifesting. My neuro-psychologist said (she was good though) it would have been no point testing me early because there needs to be a settling period to see what heals and find out what you are left with. Good luck anyway.

[Warmbeetroot in reply to Hidden]

Hi,

This is a great reply, thank you so much. I too have headed over to the US and certain people there are partnering some research from Scandinavia and Switzerland research to create products in the US. All the current football research originated from Dr Omalu's USA American Football research - Concussion is not a bad film about it, with Will Smith.

The PFA and FA here in the UK have been a little quiet since research began in 2001 but now it seems they are breaking free from UEFA and FIFA and going a bit stronger. There is very little support currently, as I presume that would be one huuuuge pot of money needed to help those of the past. USA fantastic - they have even banned heading under 12s, and request a time limit of practice at 13. It's a start.

I have one last attempt at financial help from the government tomorrow - but I hear you, and so far I have truly been left wondering what the point of my last 19 years of contributions has been for!

Thanks for the tips! Best of luck

[Hidden in reply to Warmbeetroot]

The contributions pay the MP's for second homes and duck ponds and subsidised caviar and champers in the westminster bars and restaurants. They are all in there, irrespective of party, getting fat and drunk, laughing at our stupidity for paying taxes etc. (Mmmm think I'm a bit jaded). Off to CAB tomorrow to go financially bust, maybe on the street homeless by the end of the month, I phoned the emergency line as advised by the DWP and they sent £50 to save the day. Stay away from them if you can, you too will get evil thoughts if you don't.

Hey good luck with the research, send emails, phone people, just do it, some will get back to you. Oh another thought search for research into ex-footballers, they may take you on as a study case, worth a go.

[Warmbeetroot in reply to Hidden]

Thank you. Indeed I put myself forward for the latest research however as a previous reply indicated, I may be too early into the healing process from most recent trauma. I am scouting a few places that are researching other sports, like boxing and jockeys in the hope. I wonder if there is a uni in the south doing something...

[Hidden in reply to Warmbeetroot]

It may be a good idea to ask if you can have psychological counselling as you are going through this process. I say that because once I started I became a bit obsessed, managed to make a few big jumps but forgot about the psychological side of the BI and also the obsession to get well. I think a balance would have been better and would have prevented the mess that follows however that can be dealt with too. It could affect others around you. Again good luck. check out loveyourbrain.com, they have an interesting story.

[Warmbeetroot in reply to Hidden]

This is cool. Totally understood, thanks. Was definitely in that imbalanced place for a couple of months, obviously without realising. Last month or so far more 'let go' but still a pro active way... feel like getting most stuff nailed on and recovering nicely with it - the best result seems the awareness when i am nailing it, if you know what i mean. I eill check link, thanks.

[sospan]

As I mentioned in a previous post to another forum member - what is the objective of your research ?

I went from an exceptionally highly paid job, highly intelligent with several degrees and many qualifications, spoke 4 languages. I had survived many major impacts in life and broken just about every bone in my body and had to re-learn to walk many times. Each time I was able to carry on with life and continue earning a living.

After my own injury, I went on a long quest to try and find a cure, I had a "brain injury" and injures can be cured ! well not really. You can improve slightly but you will never return to your previous self.

Looking back I would have been better in putting my energies into getting on with life and accepting (as hard as it is) where you are.

All the best

[Warmbeetroot in reply to sospan]

Hi, thank you so much for the reply. I think I understand your sentiment, as at times it does feel like if I go too far on the research which can work against me, building anxiety and fatigue etc. But the purpose of all the research is to educate myslef to create awareness, to understand situations more, understand certain sytems, the why, not to be put in a box, and how to give ourselves the best possible chance. Regardless of whether we will ever get back to our original self, we could get closer, or a different but better version. I am a yoga teacher, so acceptance is paramount, however for as long as we have hope, we have purpose.

Thanks again for your time and your reply.

[sospan in reply to Warmbeetroot]

There is certainly the concept of over research and there is also the phenomena of developing symptoms based on the research - e..g. I have concussion, therefore I must have memory, cognitive problems, balance issues, insomnia etc.

What you also have to be really careful of are compensation claims. I have advised quite a few people over the years that when they do their own research and come fully armed to have arguments with specialists and assessors that they are undermining their own case - i.e. claiming to have memory problems, difficulty processing information, communication problems but can then argue their case ....... you can see where I am going with this

The main problem is that most of the papers written are by people whom have never experienced a HI or lived with someone whom has HI. My wife trained as a nurse and attended to many people whom had concussion and much more serious HI's. It was only when she unfortunately had two concussions within a year did she realise what it was like - completely different than she was ever told or taught.

The problem you will find is that HI symptoms overlap with many physical non brain related issues but also psychological problems. My daughter is a Psychologist and NeuroPsychologist and one of the problems is that when you look at peoples medical history and lifestyle pre injury many of the post injury symptoms could be attributed to previous events. It seems that the injury removes a layer of coping / capability that then reveals previous deficits. My wife was a classic example of this. When she had her concussions, she was struggling to read and bumped into things. After some cognitive tests it was discovered she was dyslexic and dyspraxic and apparent from being a bit "blonde" on times, we never guessed. It was only that drop in capability that meant she couldn't compensate that revealed it.

It is quite an interesting journey ahead

[Warmbeetroot in reply to sospan]

"It seems that the injury removes a layer of coping / capability that then reveals previous deficits."

I would completely agree with this, however isn't that the point - to create the awareness, to understand it's about researching the techniques to increase capabilities / coping mechanisms again. Either way (from head injury or not, is this a bad thing?)

"come fully armed to have arguments with specialists and assessors that they are undermining their own case"

I think this sounds a little blame culture / victim culture. I hope my posts reveals otherwise - I am looking for ways to improve, self help. To fix. I consider myself very lucky not be worse off.

You are obviously further down a road than I am, and I am sure you are trying to be 'realistic', however I can't help but feel it to be more negative.

[sospan in reply to Warmbeetroot]

Not being negative, it is what I have found going through 8 years plus of being on this board reading what other posters have written and my own protracted medico legal claim.

With the majority of HI survivors whom already had issues latent issues, once their ability to mask any issues is eroded by injury, the issues come to the foreground. The way human nature is, very few people will admit or even accept they had issues that they were aware of, therefore hadn't developed purposeful coping mechanisms. For my wife, she would say something was too complicated whilst in reality it was that she couldn't understand the words. Her version of coping was to get me to read it and relay it verbally back to her. So the coping mechanism was a bit of cheat for her.

Each HI symptom is a medical specialism in its own right. Developing a coping mechanism needs knowledge of all topics background and then applying that to an individual and then developing a mechanism. Then trialing and assessing the mechanism and adapting it. If you were to pick something that on the surface is as simplistic as fatique. That could be caused by stress, lack of sleep, poor diet, hormone imbalance, lifestyle and many other physical issues and other issues not included. Many of the contributors on this forum are desperate to find a coping mechanism for fatigue but there isn't one. The usual advice to limit activity or taking rest periods doesn't really work. When you read the post on her, contributors tend to do so much of that they often make themselves unwell, push through it or just avoid doing things.

When I mentioned about the issues of people researching their symptoms prior to seeing a consultant, it is purely common sense. If a person has researched what they have, and the consultant says something different. Where do they go next - argue with the consultant ? or if the consultant comes up with the same diagnosis, people will say, "well I knew that anyway !" Additionally, when going through a medico legal case, having researched symptoms is a negative for both sides of the case as it can lead to embellishing the level of symptoms.

Whilst I don't dismiss people whom want to gain knowledge so they can understand their current situation, it has to be done with some outcomes in mind

[neilhapgood]

Hi There,

I also went down the self research route. I certainly don't have anything ground breaking but what I did learn I put into a website - braininjuryftp.com which may be of interest to you.

all the best

Neil

[Warmbeetroot in reply to neilhapgood]

I will have a good browse, thank you so much. I was so naiive to all the information and passion around this topic before actually suffering myself.

Many thanks again

[Headman]

jumbledbrain.com , is a start

[Warmbeetroot in reply to Headman]

Will check these out, thank you for the sending the links.

[Headman]

tbisurvivor.com

[jayne_h]

Hi, my mum had a head injury and had PCS. If you want to try diet, have a look at Tina M Sullivan Nourish Your Noggin book. You can get it on amazon. Her recipes are nice and she tips you on herbs and spices to reduce inflammation. Lower sugar intake, try Southern European food, Thai food can also fit in with it. How about a coconut milk or almond milk turmeric latte? If you put black pepper in that aids absorbtion of the turmeric.

Perhaps you might like a banana smoothie with some of these herbs and spices?

Here's one recipe I picked up somewhere: oat cookies

200 g oats

2 apples

teaspoon cinnamon

50 g margarine (or butter)

50 g dried fruit like raisins

Baking tray and baking paper

Must the mixture together with a spoon. Roll it into small balls. Push each one down with a fork to shape into a cookie.

Bake at about 170 - 180 degrees for 20 mins.

Healthy snack without sugar.

Dr Diane's book on PCS is also very handy but the first couple of chapters are very scientific.

drdiane.com (Sullivan used Dr Diane's diet sheets to form her book when her own son was a patient).

Hope things improve for you

J

[Warmbeetroot in reply to jayne_h]

Thank you for the advice, I will check out the book and link. I am into endurance events and clean eating and it just so seems that nutrition from that is very much brain food. Really seem to benefit from fasting too and putting the system into ketosis. I have a few things about fatty fish oils, coconut oils, silica and a few other supplements. If you have any more, please share.

Thanks again

[LouBL0u]

Hi

Also had a head injury and PCS - couldn't even count at first (I'm a teacher!) Like everyone did tons of research and self-help. But what I'd like to help with is benefits - to get New Style ESA you have to have two years NI and an unfit for work note. It is not means tested (hubby works) Basic rate is £73.10 a week for a year but they will send a work capability assessment after 13 weeks to see if you go into a different (more money) group. Either way you'll still get the £73.10.

PIP is supposed to help you with your life- I haven't tried for it yet but there's a website caalled c-spec that has loads of info, and an interactive question site that can indicate if you'd qualify...

Sorry brain now tired, end of a long day but good luck everyone

[Warmbeetroot in reply to LouBL0u]

Hi,

Thank you for looking at the financial Q. I looked at PIP, have sent the forms off - hopes not huge as all the assessment questions were physical based. That doesn't mean cognitive issues aren't disabling at the moment!

ESA appointment tomorrow, but certainly more hoops to jump through than I thought the system was there to be there for. I think it's because I have a property I rent out. It doesn't make money and it has been up for sale since the injury but can't sell it. But the computer currently says no, as a result, if you know what I mean.

I appreciate the thoughts. I think I saw Headway release a fund for help with things like transport to appointments which will be very helpful.

This is all just temporary, the second I feel capable / am clinically advised I can do any old mundane job, I would sooner be out earning.

Thanks again for response, please let me know if you think of anything else.

Thanks

[Sem2011 in reply to Warmbeetroot]

Hi, just to add Loublo 's input, I felt it pertinent to add, have you requested a unfit for work sickness certificate from your GP. Once , you have sent to DWP or whoever it is, I cannot remember , it is mandatory for your to receive ESA , no jumping through hoops. I am sure your GP will have discharge letter of your BI.

I am eight years post BI, and although you are keen to improve and a positive attitude, I remember looking for answers and to return to work asap. Like you, I had started a new role, which I had worked very hard to attain, along with completing my MA . My TBI was 4weeks post my new role.. I could not return, to high paced and pressure, long hours, and mentally draining. They sack me anyhow 😊. It isn't probably not want you wish to hear (I certainly didn't accept ), but brain injury recovery is slow, but as another member mention your brain injury currently undergoing manifestation. My neuropsychologist (who is an expert in her field and with her input and advice I would not be the person I am today). In an very early conversation in her clinic I said 'why is it now my left side is weak, 4 months post TBI, and not obvious or symptomatic in early days post TBI. She replied 'it is a house is on fire, but it is not until the cinders are left and visible the extent of damage can be seen. The analogy made sense. I know you wish to work in any role, but the priority is your recovery, and the symptoms you are experiencing will worsen if you put too much pressure to return to work.

Anger, etc, I have experienced, and fatigue etc, but I would try and take a back step and concentrate on you and keep a daily routine. It is very early days, but you are doing everything you can to help yourself. I bought a book 'the best brain possible' by Debbie Hampton, US based and she has an online advice as well. Hope this helps, and there is life after brain injury 😊🙏🏻

[Warmbeetroot in reply to Sem2011]

Fantastic insight and input thank you. I will look the book up too. Certainly more aware thanks to everyones stories and warnings - which has just enabled me to pull the reigns when I realise I may have stretched stuff a little too far that day/week. Before, I never understood why the fatigue happened, or emotionas were harder to control. With time and awareness, things are definitely getting better daily, thanks. I don't know how you can ever measure improvement without gently stretching things

[Sem2011 in reply to Warmbeetroot]

Your welcome! Headway have factsheets and booklets advising and explaining how to manage fatigue, explaining auditory and visual overload,emotions and moods, trigger factors. Another useful booklet is for family and friends information on BI, how they can be supported and knowledge to help you with our journey in recovery. A number of short utube /people with BI injuries sharing their journey, I found insightful.

If I can help you further just shout! 😉

[LouBL0u in reply to Warmbeetroot]

Hi again

Good luck tomorrow and as Sem said regardless of any income you are entitled to £73.10 a week for a year, if you've paid NI for the last two years, your SSP has stopped and as long as your GP has you signed off. That is the criteria You can request it is backdated for when SSP stopped. They will back date to a maximum of 3 months.

I was surprised that I had to do the work capability assessment after 13 weeks but that is to determine if you go into a higher paid (not capable of work, even once fit) group.

Here's the link for the interactive questionnaire for ESA work capability assessment and PIP info c-app.org.uk/

[Warmbeetroot in reply to LouBL0u]

Very very kind. Thanks again.

[Hidden]

loveyourbrain.com

[Annie-GBIA]

Hi,

How are you getting on now? I see this post was written a month ago.

There is tonnes of research on globalbia.org/

The first thing to do is to get to grips with the inflammatory response/biochemical cascade which it sounds as though you are taking steps towards. By doing this you reduce some of the symptoms which leaves you able to focus on those executive problems.

Insomnia could be caused by vitamin D deficiency - get full bloods checked by your doctor as vitamin and mineral deficiencies are very common after head injury and cause many of the symptoms.

Most people are unimpressed with Neuropsych tests and they are widely understood by the experts to be inadequate because of the setting they are done in. The qualitative or lived experience is very often different to the results which is intriguing but also frustrating!

Meditation is hugely important for re-regulating the brain waves - keep it up!

Do you take probiotics? The research shows that a brain injury has a 'significant' impact on the gut flora which in turn can impact the manufacture of neurotoxins and micronutrients. globalbia.org/healing-your-...

This is a good starting point - globalbia.org/about-brain-i...

Let me know if you have any questions and how you get on.

[Warmbeetroot in reply to Annie-GBIA]

Thank you for the message. Difficult to tell. Overall very well, but then get stark reminders. I also can't hugely tell if by 'well' I mean symptoms are healing or capabilities to adapt to the symptoms are better. Prob both. But then every once in a while when I stretch the capabilities as progress is being made, I do get harsh reminders. Real dip your toe stuff. Thank you for the link. I will start browsing now. In a bit of a lull this minute as I am suffering with severe headaches, body acheyness, fatigue, high temp it shivers, waking every sleep cycle at night in pool of sweat. 5 days now. Ordinarily I would think i may have a virus, but I also did my longest run the day before - gentle and felt completely fine. I also fell down some stairs - no impact to head. I have also decided to escape the festive madness at home for a break and hide in GC (vit D lover for sure) - so some symptoms poss point towards heat stroke. But I have been uber careful and it's not very hot, and I grew up in the sun. I am struggling to know what is just normal sickness (not that I ever get sick like this) and what is lack of strength/ capability since fall, or what is a actual head injury. So sorry to burden, nice to write it out.

I have responded well to mindfulness but meditation seems tougher to get to. I end up falling asleep as soon as I feel close.

Great stuff on microbiome. Thank you. My wife is queen here too. We make bone broth daily even!! The family takes a ptobiotic but I haven't yet, thanks. You saw I am a Vit D lover, I also try catch morning sun everywhere.

The Neuropsych tests really frustrated me. I am good at test situations. I have not been good at life, like you say. I told them I wasn't stretched enough but I think that was their limit, or they see far worse off individuals. I do feel extremely lucky not to be worse off, but I also feel there is less support for pre existing high achievers.

How else would you suggest taking care of the inflammatory response?

I am training physically, with a variety of triathlon (trying not to stretch too far) weights and yoga.

I am tending to sleep much deeper and longer too, 10pm-6am ish with a toddler mind.

Right, now to the links. Thank you so much. I am astounded by people's support on this forum

[Annie-GBIA in reply to Warmbeetroot]

Hi again

You are right to take things gently. Research shows that the return path needs to be just that - gentle!- as doing too much can exacerbate the symptoms caused by the inflammatory response. You may feel fine while exercising but later feel depleted as the body isn't replacing what you used as quickly because the brain is using those reserves instead.

It can be difficult to tell what is what which is why it is so important to keep track to watch for signs - you said you keep a journal and this is a great idea. This may be a seasonal bug on top of your symptoms and they often overlap which makes it hard to tell what is going on.

Thermoregulation is a fairly common problem after brain injury and there don't seem to be any definitive studies or answers to this. I did hear that chiropractic treatment helped one person and it was thought that compression in the neck was aggravating the ability of the body to regulate temperature. I would wait and see if you feel better in a few days before looking more deeply into this. Some research links it to the physiology of the brain being disrupted by the biochemical cascade and various outcomes associated with this.

This link takes you to more information about the inflammatory response - globalbia.org/healing-your-...

And this one shares a lot of research about the underlying causes of fatigue - globalbia.org/understanding...

Other things that can add to fatigue and can be tested for by your doctor include vitamin/mineral deficiency (you use up reserves and the brain needs way above normal levels when it is healing), thyroid function, blood sugar levels and dehydration - which can obviously also contribute to headaches. Again, the healing brain needs more fluids than normal so think in terms of taking in as much liquid and nutrients as you can. The bone broth will be doing you a world of good! Good wifey!

If you use guided meditations (CD's or loads on YouTube) it doesn't matter if you fall asleep as the subconscious will still be following it which helps to re-regulate brain waves - crucial to feeling like 'you' again and getting control back over the inner narrator so that you can best manage strategies for executive dysfunction problems. There is some great research being done about this but I am aware is awaiting clinical trial so not publicly available yet.

I read through some of the responses you have had and yes! they are filled with some really great information. The Headway leaflets are brilliant (I used to help make them understandable to people living with brain injury!) and are always worth a look although I do find them hard to search for on the site sometimes.

Neuropsychologists generally refer to occupational therapy for cognitive and executive problems. If you feel you need this extra help it is worth going back and asking for it.

Remember - all things in balance! Brain first and then the rest of life!

[Warmbeetroot in reply to Annie-GBIA]

Amazing. Thank you kindly for the support - I am actually browsing the site as we speak. I cannot believe how naive I was to this all! I suppose pain brings transformation! Wrongly so. Like the "inner narrater" idea because that is on overdrive at times, on all the wrong avenues.

Thank you again.

[Annie-GBIA in reply to Warmbeetroot]

You are welcome. I have never come across anyone in the last 14 years of supporting others who actually was told any of this.

One of the main reasons is that neuroscientists have no idea how long the inflammatory response should be allowed to go on for. It is a fine line between allowing the immune response and halting some of the other responses which lead to cell death. A neuroprotector such as omega 3 or the black seed oil balances these two needs and there is science on that but as yet no clinical trials.

It is all so interesting! The closest comment I have seen alluding to the biochemical cascade was shared by Sem2011 above - "it is a house is on fire, but it is not until the cinders are left and visible the extent of damage can be seen."

[Marnie22]

Hi. Has anyone considered if you have PTSD? I only ask because it took over two years following my BI before a neuropsychologist diagnosed me with it. I realise you have seen a neuropsychologist, but maybe your GP could look into this? I have had terrible anger problems. The difficulty is that there is a big overlap with PTSD and BI symptoms. I don't really know what is what with me but I am currently having EMDR for PTSD. The senior psychologist that I am seeing is very supportive.

I send my best wishes to you.

[Warmbeetroot in reply to Marnie22]

Hi thanks for the thoughts. Anger / Emotions of all nature was my primary focus 2 months ago. I hit a few techniques hard and big lifestyle changes, definitely on top of that symptom now, and have since moved to the rest of the symptom list, with the occasional revisit.