I suggest a campaign about ...

Post Concussion Syndrome (P.C.S & P.P.C.S) Awareness in the UK - This hidden Epidemic is REAL!

Having had PPCS for 4 years following an accident, I realised that barely nobody in the public health services (NHS) or public arena is taking notice, or ready to tackle the hidden epidemic. Over 75% of cases are misdiagnosed & treatment is only available privately at great cost. We need to change something! Please invite friends so we can spread awareness & get action for the forgotten sufferers of this 'Hidden/Invisible Disability' by getting confirmed action on a wide scale from Government & NHS... Although this is also an international issue effecting people worldwide! Please vote & help us?

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    Dave BottomleyDave Bottomley shared this idea  ·   ·  Flag idea as inappropriate…  ·  Admin →

    46 comments

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      • John TempertonJohn Temperton commented  ·   ·  Flag as inappropriate

        Hi all.

        I fell on the back of my head onto a concrete path Christmas Eve. I went out momentarily I think, felt very sick and very tender at the back of my skull. Neck also felt week and head felt heavy. Went to A&E checked for eight hours then discharged. I really felt bad for about 2-3 weeks. Felt tired, sensitive to noise, especially to road noise, had a strange detached feeling, and a kind of fuggy pain that travelled round the skull, and some more intense headache behind each ear.

        I generally rested, took three weeks off work, and started feeling a lot better.

        Between mid February and late March I've felt pretty much back to normal. However In the last ten days, 4 months later headaches and some dizziness have started coming back again. It's a weird creeping feeling and soreness that goes from the base of the skull and tightens up to the crown, like a hood being pulled over my head. It generally comes and goes throughout the day, but is worse if I'm tired or had a bad night’s sleep.

        I'm really hoping it won't last because I’m being made redundant in a month and looking too set up my own business soon, and could do without the extra distraction all this causes.

        I’ve tried to get some advice from my GP but other than signing me of work for two weeks and giving me a leaflet about PCS hasn’t offered much more advice. It does play on my mind alot because supporting a family and going it alone is no small undertaking.

      • Ursula Broom MetselaarUrsula Broom Metselaar commented  ·   ·  Flag as inappropriate

        I haven't worked out how to reply yet but just saw Frank's note about attending family parties and how it brings on the killer headaches. That's exactly how it is for me, and I am so fed up with people looking at me as though I am making a fuss and talking down to me as if I should just pull myself together, because \i am doing the best I can do be part of life. Recently I drove 3 hours to see my sister and stayed for a couple of days as I am looking for a house in that area. I worked so hard to take part in everyday life, missed out on sleeps and drove back home, and boy did I pay for that. It is nearly three weeks now and I have been feeling awful ever since, with extra pain and fatigue, which brings miseries and eventually I had to give in and admit defeat, which means I do as little as possible. The pain is constant, like having my head gripped in a vice which tightens when I take part in anything resembling activity, and stress levels are already so high that any more means I am opting out and taking as many painkillers and migraine pills as I am allowed. And that is on top of the preventative medication. Why doesn't anyone care?

      • Ursula Broom MetselaarUrsula Broom Metselaar commented  ·   ·  Flag as inappropriate

        I also was diagnosed with PCS after a head trauma in 2007. As no damage was detectible on the MRI scan (which I had to request a few months later) I think it has been assumed that there is nothing wrong with me and that I am simply suffering from what they call 'headaches'. I am in constant pain and have been since my injury. I also have not been able to sleep more than two hours, yet I am tired all the time. I have labyrinthine hypofunction and now walk with a stick or I stagger around looking like I am drunk and I don't even drink. I have other symptoms including memory and cognitive problems too, and nobody seems bothered.

      • Kevin BottomleyKevin Bottomley commented  ·   ·  Flag as inappropriate

        Dave as done well to bring attention of P.C.S. into the limelight, and works tirelessly to get the situation addressed, and to be recognized by the NHS.
        as a disability.

      • cindy4Godcindy4God commented  ·   ·  Flag as inappropriate

        I was severely rear-ended in an accident on December 9, 2010. I was diagnosed w/ PCS by an ENT about 3 months later. I have seen a Neuro who says it will get better...I have had 3 breakthroughs in my recovery where I suddenly feel as if a layer of fog has lifted in my brain and my thought processes are able to connect much more quickly and clearly. i have less memory glitches and headaches as I go along. I am SO GLAD you are bringing this issue into the light, because it definitely needs more time and attention. I was working fulltime as a Substitute Teacher before the accident and have been unable to return to work more than a day here and there without setting off all this wooziness (like I just got off a cruise, but didn't get to enjoy the ride - ha!) and making me exhausted. I do laugh at myself (or else I might scream or cry too much otherwise!). I do thank God for all the progress I have experienced and trust Him to bring me all the way through this recovery process and lead me to the right Docs/Physcial Therapists who can truly help. I have had to hire a lawyer and get a lien because my insurance ran out due to the longevity of my recovery, but am very hopeful of total recovery - in Jesus' name AMEN! :) I was just at the mall w/ my family earlier today and my PPCS (Prolonged Post-Concussion Syndrome now that my symptoms have lasted more than a year) started going off -- way too much stimulation. I sat down for about 15 minutes on a bench in the mall and my brain settled down, so I turned around to walk out of the mall - the PPCS started up again, so I rested on a bench again for about 10 minutes. I will return to do 'mall shopping therapy', no worries, as my PT said any activity that sets me off needs to be confronted a little at a time in order to retrain my brain that this activity is OK, but it is quite a lot of time and effort. I thank God for always sending me encouragment and refreshment along this journey just when I need it and for giving me such a supportive family and church. I hope and pray everyone who is suffering with this condition will get better - in Jesus' name AMEN! :)

      • Shez KingShez King commented  ·   ·  Flag as inappropriate

        I have a dear friend who has had his life blighted by this syndrome and getting the help he needs, and deserves, is proving very trying. Lets get something mving here folks!

      • MonMon commented  ·   ·  Flag as inappropriate

        Important cause to vote for this petition. Make sure you all vote if you can?

      • RitaRita commented  ·   ·  Flag as inappropriate

        my husband was in a terrible accident, the things that happened to us as a result of this was earth shaking.

      • Ness HNess H commented  ·   ·  Flag as inappropriate

        1. I hit my head on Dec. 31, 2010. Was told it'll go away in about 3 weeks. uhh nope! Finally got a refferal sent in by a dr. that actually LISTENED to me, but got denied. Apparently normal brain function is not a medical neccecity. I have low income medical ins. And I understand times are tuff. But as soon as I get the tools to get better, I can go on with my life and pay for my OWN ins. That’s all I ask. But I'm going to keep trying, and pushing. And laughing cuz it helps... like I told my mom, "They haven't heard me stutter when I get frustrated, or that I'm 26 and already get senioritis haha!!" Dark humor, yes, but if I don't make fun of myself a bit I'll go nuts... Cuz no answers yet. :( So I know more awareness of this is needed EVERYWHERE! And everyone that suffers from it, stay strong! Never give up.

      • Carol McCarol Mc commented  ·   ·  Flag as inappropriate

        This needs more exploration for sure. Many people suffer from this and little to none is known about it.

      • ralph ryanralph ryan commented  ·   ·  Flag as inappropriate

        yea i agree,there is not much health care for people who have pcs,i live in toronto,and they sent me to toronto rehab.The doctor i see just tries to comfort me by saying everything is going to be alright,i have an appointment with this doctor once every three months because supposivly she is busy,but when i do see her she jus sits on her computer.i was 17 when i was diagnosed now im 18 and 19,its been almost 2 years now.i went crazy and coudnt deal with the pain,so one day i literally went crazy and started robbing people,then driving away in a car.pcs is very serious and ruins your life,it made me wana die,my temples hurt like hell every minute of the day .im writing all this to telll all the ppl with pcs out there that it will get better.i realy didnt beleive it wud heal.3 weeks ago it started to get alot better,now i am feeling good ,but not back to normal yet .

        PCS DOES GET BETTER,IT IS TRUE,LEARN FROM MY STORY

      • Sandra SwiftSandra Swift commented  ·   ·  Flag as inappropriate

        Yes thank you for bringing this to our attention - it must be so hard for those who don't have their illness understood - we do need more research

      • St CSt C commented  ·   ·  Flag as inappropriate

        .....If I am not for myself, who will be for me? If I am for myself only, what am I ? If not now- - when? (Talmudic Saying Mishnah, Abot)

      • Glad4GraceGlad4Grace commented  ·   ·  Flag as inappropriate

        After years of suffering with nausea and vertigo, I was finally diagnosed with PCS by a Neurologist. He concluded it was from a subsequent series of past head trauma. It's made me aware to let others know not to take a blow to the head lightly. Everyone always tells me I look fine, yet on the inside, I always feel like I'm standing in a rocking boat. One needs to focus on what they can do: in my weakness, I am made strong through God's strength. Thank you for bringing this to awareness...

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