About Post Concussion Syndrome & Our Mission Today…

“mTBI & the often resultant PCS alters so much within you that you become unrecognizable, even to yourself. Sometimes we lose hope due to others’ misunderstanding or denial of what we’re going through, and often we pay the heavy price for our inability to cope. I was compelled to build a network of websites & support groups because of the injuries that befell me, firstly 8 years ago, then again in 2008 & 2011. If you read to the end of this page you’ll have a better idea about Post Concussion Syndrome, you will also see how much more positive the outcome has been & even what is yet to come!”- David Bottomley – PCSAWW

>>>CLICK HERE FOR OUR MAIN FACEBOOK GROUP<<<

“Recently we have seen some coverage in the UK media, in national papers such as The Independent, Daily Mail, The Guardian & Mail On Sunday which has raised the issues of Concussions on-field in Football & Rugby. During & immediately after the 2014 FIFA World Cup in Brazil there was an outcry which echoed that which was also heard in The USA over recent years in relation to brain injury in contact sports such as NFL, Baseball & Hockey leagues. Why were players allowed to continue in games after being knocked out in play? Who was responsible for their welfare and what should be done? As we know there have been high-profile cases of suicide due to repeated mTBI in NFL & many more have been forced to retire early, their lives altered forever. Action became inevitable & both Senate & Congress became compelled to change the laws; that was progress as a ripple-effect further afield was well overdue – Especially in the UK, and also in Europe.

It seems like something is about to change here in Britain after years of apathy, although as usual the changes will be stimulated for financial reasons (e.g in USA $490,000,000+ was recently paid top the NFL players who weren’t protected from mTBI & concussions). We are also seeing some action now in the form of a UK parliamentary enquiry into some of these issues led by MP Chris Bryant…. Although:

Barely anyone in the UK’s public or health services are seriously taking notice of, or ready to tackle the hidden epidemic that is Post Concussion syndrome. Instead charities & private organizations like Headway are the only points of help & support for brain injury survivors. Over 75% of MTBI cases are misdiagnosed, only 1 in 10 Mild Traumatic Brain Injuries (MTBIs) receive hospital treatment or follow-up, this puts them at significantly greater risk of developing Post Concussion Syndrome. Treatment is only available privately at considerable financial cost to the sufferer who may not be able to meet the price; as we know most MTBI victims are in the majority younger males of lower social standing.

Together we can spread awareness & get action for the forgotten sufferers of this ‘Hidden Illness’ & regain our dignity in the face of misunderstanding, discrimination & denial of basic human rights.

Retrograde, Anterograde & Post Traumatic Amnesia, Depression, Suicidal thoughts, Chronic/Breakthrough Bodily Pain, Anxiety & Panic Attacks, Severe Headaches, Mood Swings, Insomnia & other sleep problems, Personality changes, Irritability, Loss of Co-ordination & Concentration, Emotional Lability, Nausea, Confusion, Hallucinations, Fatigue, Social Behavioral Problems, Partial/Temporary Bodily Paralysis, Vision & Speech Problems & more besides are ALL symptoms of P.C.S & P.P.C.S which are not medically treatable (only some symptoms are). Imagine several of those symptoms at any one time throughout your day & at random? This is partially what has led to Society brushing this complaint under the carpet or labeling sufferers as Fake!

For nearly 200 years this serious & life altering disability has been generally completely misunderstood or ignored by health services, medical science, media & the majority of the public. It is however a serious disability from which sufferers encounter extremes of discrimination from all directions.

P.C.S & P.P.C.S (Prolonged/Persistent Post Concussion Syndrome) were formerly known as ‘Erichsen’s Disease’, ‘Railroad Spine’ & ‘Shell-shock’ in the past, but now research has widened in progressive countries into ways of treating this previously untreatable condition.
However in the UK most GPs, Doctors, Specialists, Psychiatrists & Psychologists etc have NO idea of what P.C.S & P.P.C.S are let alone how to treat a patient who has suffered 1 or more mild concussions (MTBIs). In fact many are still in the dark ages & believe that PCS is an imaginary illness.

P.C.S & P.P.C.S can end careers & alter lives drastically within seconds & last anything from 3-6 months to a lifetime! Professional sports people will tell you about friends & team mates whose entire careers were wiped out with one blow to the head, never to return. Until recently treatment was thought to be non-existent & is still generally unavailable (especially in the UK). However holistic & physical methods such as Bowen Technique Therapy, Cranial Release Therapy & Hyperbaric Oxygen Treatment etc are being used successfully in more progressive countries such as the USA.
The standard NHS approach to P.C.S is to ply patients with increasingly high doses of class ‘A’ pharmaceuticals & leave them uninformed on long waiting lists for therapies such as CBT etc that are of minimal use to someone who suffers the many serious symptoms. As the old saying goes “When the only tool you have is a hammer, then everything starts to look like a nail!”.


Two Sides to Every Concious Brain!

10 years ago I had little idea what Post Concussion Syndrome (PCS) was, apart from that ‘Shellshock’ was something that had affected many soldiers throughout wars down through history. I NEVER thought in a million years that I could be affected by it…

9 Years ago I was affected by Mild Traumatic Brain Injury (MTBI) myself & had my world turned upside down. I couldn’t get treatment or advice anywhere, in the process losing my health, confidence, friends & home etc…

8 years ago I had been forced out of my job & was suffering the worst depression of my life, taking every medication the Drs said I should be to get better. The truth was it didn’t help I was just being drugged to keep me quiet, the fall-out was horrible…

7 years ago I was mis-medicated, drugged as is usually the case with PCS sufferers & as a result of mistreatment, incompetence, lies about my health records & mis-medication I ended up homeless….

6 years ago I was still struggling, subject to discrimination & even denied rehabilitation or a voice until one day, after the death of a dear friend (also suffering from invisible illness) I vowed to make a difference somehow…

5 years ago I had educated myself about my own illness, knowing more than any of the Drs I met. I realized that there was nowhere on the worldwide web where people could go to find information, support or advice from people who’d been affected by PCS.

4 years ago I had another MTBI which left me in a deep dark hole & I hit rock bottom! I had to start yet again, no home of my own & no money or belief in anything other than that I was completely alone, yet from that isolation came Hope. Spending time to rebuild my life once over was hard, yet it was just the beginning of a new life which was an amalgamation of the ‘Old ‘Me’ & the ‘New Me’…. I left medications behind as their prolonged usage had worsened my condition beyond belief & regained much of my former self but there was still lots to do & so many people to reach…. The fight to spread the word of ‘Awareness’  got more serious.


3 years ago I was helping to provide hope for many more people by sharing my own experiences & that in turn helped empower others to start their own Blogs, Websites & Groups; some even wrote books on mTBI & PCS!
2 years ago I could return gradually to work, a goal which had eluded me for some time. Now I would continue to learn & share the skills gained on my own healing journey, as well as other life & spiritual skills I’d learned down 20+ years such as Reiki, Kotodama & Meditation…

Today I can look back & learn from that roller-coaster ride, enough to give others hope & an ear to listen…

Since then our cause has reached out to members on every continent, informed both the newly diagnosed & those who’ve struggled for years. we’ve been taken as a point of reference for professionals & proposed national petitions for greater awareness in the public arena. Most importantly we have given much-needed support & comfort to sufferers all over the planet.

Since 2010 a steady surge in action began via the internet & free social sites such as Twitter & Facebook, this led to people coming together to share common experiences & problems associated with having Post Concussion Syndrome (P.C.S) or Prolonged or Persistent Post Concussion Syndrome (P.P.C.S). These people are spread out across the world in locations from Canada, USA, Caribbean, Europe, Africa, Australasia & the Far East to name a few.

>>>CLICK HERE FOR OUR MAIN FACEBOOK GROUP<<<

It became clear that some countries were well ahead of the game, USA, Canada, New Zealand for instance where heavy contact sports such as NFL had led sports universities to develop & research new effective ways of handling this far from new condition. Some countries like the UK on the other hand were behind the rest of the world & were even regressing backwards in both attitudes to sufferers & willingness to progress towards treating people through the N.H.S.

Well, I can say from first hand experience that I am in one of those unlucky enough to be suffering in the UK, where we P.C.S sufferers fall through all the cracks in the system, not even clearly labelled (we British love to label things black or white, good or bad, a dualistic heaven!) as a ‘Mental Health’ problem, undermining the seriousness of P.C.S as a complex Neuro-Psychological disorder that ruins & often indirectly ends lives!

All this has to change & our health authority’s denial of the size of the epidemic must be left behind in place of progressive new treatments which ARE available & DO work for patients in many countries. Denial, ignorance & excuses are helping nobody to tackle P.C.S & P.P.C.S long term, but sadly that is all that is currently available.

My information comes from inside the N.H.S & directly from its own employees, doctors, nurses & specialists among others. Since 2006 I have learned of shocking practices, neglect of care & tragic countless stories of people left to rot on sickness benefits system, simply because the system refuses to admit that it needs patient driven opinion on how best to implement the right treatment paths & procedures to ALL P.C.S patients.

I’ll reveal through personal experience & that of others simply how things are with P.C.S in the UK & share with you much more positive stories of Hope, Inner Strength & Survival, as well as sharing news & developments in modern treatments available, where to find help if you need some, how to cope with British Beaurocracy & much more….

Thanks for reading & don’t forget to tell a friend about us also please?

Namaste, David Bottomley (Founder Post Concussion Awareness Worldwide)

Disclaimer…
 
PLEASE NOTE: To reiterate some basic & very important information about all of our site’s posts & our groups on Facebook; These groups are not Support Groups & are not run by healthcare professionals but by ordinary sufferers of MTBI, PCS & PPCS. We DO NOT provide medical advice or therapeutic advice, all opinions expressed by Creators, Administrators & members is purely opinion & should never be taken in place of professional advice!
We bear no responsibility for advice or recommendations given by members whom express their opinions here, whether they be healthcare professionals or not.
We trust that you will understand that in this day & age of blame & legality it is important to spell out theses points. We have always maintained that we provide only information & opinion and so the onus is with members to research any opinions they may find here & to make appropriate checks before assuming any measures relating to their MTBI, PCS, PPCS or ANY health or personal matter, all medicines & over the counter remedies carry legally binding care instructions, warnings & limitations as a matter of course…

 


 

>>>CLICK HERE FOR OUR MAIN FACEBOOK GROUP<<<

 

 

 

 

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54 thoughts on “About Post Concussion Syndrome & Our Mission Today…

  1. Thank you David, I too am surviving MTBI after being in a car accident where I struck my head on the steeringwheel and the head rest. In that second, that blink of an eye, that beating of your heart ~ My life has never been the same, sometimes it’s very hard for me to even remember what I use to be like and what I am now. Today is tough day, “headcake” the size of Huge Rock and it somehow just keeps blasting away. Hope runs very thin some days, and other days it’s ok to exhale. Thank you first of all for your story and for sharing that with us, also for the facebook page that you started to help us all join collectively and thirdly for you being who you are today (not what you were, but what/who you are today). I’ll keep an eye out for more entries, I learn from what others share, I will be watching.
    Kindest Regards,

    ME Payne, Minneapolis, Minnesota

  2. Thanks Marie this is the continuance of an ongoing passion for spreading the true word about PCS, in fact there are vast difference between sufferers experiences from one continent to another. In learning to understand our opposition in those who challenge our rights, we must show our true strength in (as you say yourself) banding together to show solidarity for all of those who suffer PCS. I’ll keep the groups updated as often as I can because I’ll be sharing things here which I can’t on Facebook. Namaste friend :o)

  3. I find it amazingly mysterious when talking about human brain. This post is beneficial for my reading. Thank you and would like to re-post this on my blog.

  4. That topic has really started to take hold here in the U.S. The NFL has taken the lead, and I have seen some PSA promoting awareness. My father actually had brain tumors and had this problem. When I hear of someone going through any traumatic brain injury, I do try and bring awareness of this. Keep up the good work, and I look forward to following your work.

  5. Thanks for your comments, I follow events around the world with keen interest & especially in the US. I’m sorry to hear about your Father, we who are mos affected can do the most to change attitudes towards brain injury. This is a lifetime mission for me & I will continue to spread the word ever day. :)

  6. Very kind of you to take the time to check out what its all about Pheonixgirl, it makes the whole thing seem much more worthwhile with everyone who sees the purpose in what is here appreciates our cause.

  7. Hello David, Kudos to you for bringing awareness to this subject. Thanks for stopping by my blog and following. Now this might sound a bit strange – I found the photos you have on your blog very interesting, artistically speaking, I’ve been thinking of ways to express creativity/brain activity in paintings, also how to express dull against “exploding” artistic outbreaks (coming from the brain) – guess there are no coincidences in the universe – again, thanks for stopping by – Namaste – Jutta

  8. Well thanks very much Jutta, I find images which I like & then play around with them until they speak a lot louder & fit with what’s being conveyed in the text… or at least I try!
    I’ll try keep updated on your blog & many others, as this is only my 2nd week working in the Blog-o-sphere I’m finding it all quite mind-blowing…. Namaste :)

  9. Thats great I’m trying to make it as stimulating as possible, I’ll maybe steal a few of your ideas if thats ok? Can you invite some friends to follow & I’ll return the favour? :o)

  10. David:
    Thanks for following my blog-and thanks for this information. I did some research after reading and I believe my son suffers from this. He had a concussion playing football about 8 years ago (he also broke his arm)-he got great treatment for the broken arm but no one ever mentioned or even asked about the concussion. I looked at the brain injury checklist on braininjury.com and see many of his symptoms. I will encourage him to take it!
    Thanks again,
    Valerie
    ps-also like the art! :)

    • Hi am glad you found this useful & I love your blog too! I try to point people in the right direction through providing clear info, if you get chance look up our groups “Post Concussion Syndrome Awareness Worldwide” on Facebook? We have around 800 or so PCS sufferers all find it good to share & have somewhere to let off steam etc… :0)

    • Wow that’s amazing thank you I will have a good look through all those nominees & hope we can return your kindness sometime soon… 80)

  11. Thank you David for creating a site like this. its so good to read and see that im not alone. I’m currently recovering from a MTBI. I has an a consent last year where I passed out at my physicians office, fell off the exam table and smacked my head on the floor. It’s been a rough road and I still have more healing to go. Just wish I could get rid of these damn headaches and get my short memory back to the way it was… But alas it seems I’m going to be dependent on my smart phone and Advil for awhile lol. Thanks again for bringing more attention to this silent injury. There’s so am y people that know nothing about post concussion syndrome and/or don’t understand it.

  12. You’ve heard this a million times heh heh, but I just wanted to say it’s good that you’re telling people about this. I didn’t even know about it until I read your post! May I re-blog this?
    By the way, I love your blog. I like the colors you use, the background is so pretty. And your picture at the top looks so cool! :)

  13. Reblogged this on Outside Teen and commented:
    Please read this post about Post Concussion Syndrome, & why it’s important to get the word out about it. Feel free to re-post it, Share it, & tell friends about it. This is a serious disability that people need to know about. Thank you :)

  14. I was a victim of a crime involving a drunk driver in 1993. I spent 31 days in the hospital. 3 yrs later I was stuttering badly so I went to a nuerologist who informed me i still had a concussion and had severe depressive disorder which was causing the stuttering. I began therapy, but every anti-depressant left me feeling more hopeless. I am looking for other accident victims to talk to because noone understands. My family relationships have been destroyed because they all think I should be happy and are not liking the angry me. They fail to recognize the pain I live with and they pick on me leaving me very emotionally sad and alone. I am so depressed for so long.

    • Hi Lisa, there are many members in our Facebook groups/forums who’ve experienced similar PCS related trouble down the years.. Many of us have not recovered properly for various reasons, if you’d like to talk with others then please join us?
      Links are all over our main page & site just click & join. :0)

  15. Hi Mina,
    First of all I’m glad you found our website as it links into our private groups on Facebook (I took the liberty to send you an invite, it’s upto you if you’d like to chat to more positive PCS people?) As your injury is fairly recent there is a chance that you may not go on to develop full PCS or PPCS (Prolonged or Persistent PCS) at all!
    I’m presuming you’re in the UK? Well its clear from what we know that our NHS knows absolutely ZERO about PCS, MTBI or anything about the complications of concussions, they will mislead you, they will not treat your MTBI with anything but drugs. It is not recommended by any of nthe world’s experts on PCS to use drugs so early after concussion & it is also admitted that persistent & over usage of medications can & will worsen any PCS!

    Your Youtube video was excellent considering what you’ve been through but you needn’t automatically fall into the category of ‘sufferer’ just because some ‘know-nowt’ NHS GP told you that’s what it is…. In fact you should have been given a CT & an MRI scan to rule out worse problems firstly (quite normal procedure) & told to get TOTAL REST, cut out all physical sports & activities, stimuli like TV & computer games etc….?? I know this sounds awful but it will be the only way your brain will start to recover from the shock.

    I had my first MTBI 7 years ago & like you I knew very little of the real truth of PCS then but by self-education & research I found that you will not get the truth from Drs or the NHS in fact mostly just misinformation; instead try contacting Headway { https://www.headway.org.uk/home.aspx } for good sound advice as they will most likely have a branch near where you live.

    Ok I won’t go on any more but feel free to accept our invite it will help you feel less isolated & anxious if nothing else….

    Regards, David B :o)

  16. Namaste David, I am so pleased to find your site & fb group. So sorry to hear of your experiences and pcs-tbi. I am suffering 3 weeks, I think not sure. Although I had concussion a couple of years ago but only for 1-2 weeks.

    After a terrible experience at one Gp changing. However as a health practioner myself – mindful yoga therapist for mental health I have used some techniques but really rest is best! Tried to do things this morning in phone & exhausting! Also a single parent so you can imagine. Am plannig to sell up & move to France for a quiet, cheaper life & to offer to others but don’t have the energy yet!! Hope it gets better. Usual 2 steps forward 1 step back. Hope you are recovered. Thanks for your blog & support group. Namaste Nathalie

    • Good to hear from you Natalie, sounds like you’re strong enough to deal with the long term effects of pcs if indeed it does take you long term. Don’t hesitate to get in touch via Facebook 😃

      • Thanks David for replying. Well, need to be strong. My main worry is how to make a living as a lot outgoing. Hope I can from writing but need to see how. Yes, think I have joined on Facebook. Wish you well.

        • Glad you found us on Facebook there are worldwide around 2,300 of us there so it can help greatly in coping. You will probably have to change quite a bit in terms of lifestyle and what you can do, try find something which allows you the flexibility to work when you are upto it.

          • Only just seen your comment as getting to grips with WordPress. Thanks am much better now and since having time to read papars etc getting more into campaigning & writing which is great, as well as standing up for my rights with various cases. I think this pcs was a positive thing all in alll. Wish you well.

  17. Hi David. I am a Cranial Release Technique Practitioner in the NY, NJ area. i have seen some wonderful changes in my patients with long standing TBI’s and PPCS’s. Most of these patients or clients respond very favorably and in a short period of time. i commend you for your work to bring awareness to this subject. some examples: Patient #1 52 year old Female- fell down a cliff, TBI, coma 3months, 35 plus years ago. unsteady walking(falling 3-4 times weekly with use of cane) many years of PT. 1 session of Cranial Release Technique, steady walking strength and balance returned, has not fallen for 6 months subsequently along with weekly CRT as maintenance. Patient #2 45? year old female. Pulling in the head behind right eye inside right ear for ten years fearful of a tumor. multiple neurologists and other specialists, MRI’s MRA’s CT’s etc. cant find whats wrong for 10 years. fearful living, always stressed. 1st CRT treatment( “is it my imagination? The pain and pulling are gone”). Not her imagination. Patient #3: 31 year old male- pulling sensation right eye, right ear, distortion of face right side, swollen cheek with severe TMJ pain to touch, bruise colored skin around rt eye, and right forehead. short rt leg. needs a lift. whole right side distorted. Suffered 10 years multiple specialists MRI’s CT’s. Cant help you. 1st CRT. immediate relief. no more lift, no more pull, no more jaw pain. swelling gone. discoloration 90% reduced. Cranial Release Technique releases pressure on the Dura Mater, The covering of the brain and spinal chord, and allows for return to brain balance and healing to occur. Thanks so much for your blog. A balanced brain = a balanced body.

    Yours in optimized health!

    Michael Sourbis LMT CRTP

    • Hi Michael,

      Thanks for posting we are very aware of the benefits of Cranial sacral for all types of brain injury, we deal principally with MTBI and pcs here as there are enough sites dedicated to TBI & STBI (the American confusion doesn’t help it only deepens misunderstanding sadly through using TBI as a generic term when it refers specifically to a certain severity of brain injury!) yet there are many ways to recovery very varied ways, the more holistic the better.

      Regards David

    • Hi Michael,

      Thanks for posting we are very aware of the benefits of Cranial sacral for all types of brain injury, we deal principally with MTBI and pcs here as there are enough sites dedicated to TBI & STBI (the American confusion doesn’t help it only deepens misunderstanding sadly through using TBI as a generic term when it refers specifically to a certain severity of brain injury!) yet there are many ways to recovery very varied ways, the more holistic the better.

      Regards David

  18. As a 25 year old female leaving in the USA PSC has affected my life now goint on 9 months. There are days that I just want to be “normal” agaian. But I feel hopeless that being able to a million things at once won’t be able to happoen or going for a run won’t cause migrane. I feel handicapped bc no one understands what I’m going through and when you try to explain everyone just looks at you like your crazy. There needs to be more awareness worldwide about PSC and the numerous factors that it associated with that makes PCS so complex.

  19. Thank you David, I suffered a fall hitting the back of the head last July & then a knock to the head suffering from pain to head, sickness, neck, nausea, being in own world.
    Lost work & then tax credits after an inspection. Have been discriminated against by all services, have little sympathy from family or friends. Also tapped into other traumas & decided to report which probably didn’t help.
    Have problems processing & remembering.
    Shouted at by GP’s & counsellors.
    Am a single parent & 6 months on just had another knock to head & lost it in hospital. They want to refer me to a psychiatrist but I think the mental liability shows great skills for acting!!
    I do feel quite sad & tearful a lot as such a lot of change and am very sensitive to things & visual.
    The noise here is too much.

    Am on benefits and trying to work out work can do. I enjoy writing but need some public contact as well but not too much as cannot cope as sure you know.
    Am paranoid about more hits to head!!
    Thanks for this. I have taken myself off Facebook for now but did join the group.
    Namaste

  20. In 2012, i was injured by an IED blast whilst serving in Afghanistan. I was diagnosed with a Severe TBI and was treated for this and the complications that comes with that, recently I have been told that I have Chronic Concussion Syndrome and PTSD, I have found the contents on this site really helpful and others peoples stories reassuring and incite full!! The site is great!! Thank you!!

  21. I’ve just discovered your blog page. I am so sad to hear that the wonderful NHS is far less than wonderful when it comes to concussion/traumatic brain injury. That saddens me. I am in New Zealand and have had great care and support. Having worked in the NHS I struggle to understand the short-sighted approach which sidelines people like me who still have so much to give to society if we just get the up-to-date care and advice that will facilitate a recovery journey. You’re doing a great job for us all, David.

    • Well Julia, I would have hoped that in the 10 years since my first mTBI that they should and definitely could have improved, I reached out many times for dialogue, information and to encourage a different outlook towards PCS but so far this has been utterly in vain.
      I note know that despite all the public furore about the NHS being potentially privatised – it is anyway privately run apart from a very thin veneer of public servants, same as our police, local councils and ambulances etc are ALL run by private companies for profit first.
      With the NHS they are beholden to the private pharmaceutical industry so much now that every healthcare decision practically controlled by the companies that make the drugs, other more effective treatments and options are totally negated or even publicly rubbished because the ‘deal’ between the two is so important and profitable!

      It’s sad that the NHS just doesn’t work any more and I think it will have to be replaced as people are getting wise to the multi billion pound drugs scam now and that means a wide change in healthcare…

      It sounds as though you’re probably better off in NZ?

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