In learning how to deal with the life altering symptoms of PCS I have read much, spoken to many Drs, nurses, and individuals who have contacted me regarding their own personal situations. What I’ve found is a shocking diversity of wholly different people, from all walks of life & from every continent.
Some people are happy to tell of their struggles, their losses & even reveal how the illness has changed them on the most personal level. It is clear that whatever background these individuals come from, having PCS has been the greatest leveller of them all. The following stories are word for word & some of the participants’ names have been altered so as not to reveal their real identities where particularly sensitive issues are concerned…..
A BIT OF MY STORY WITH PCS – Wednesday, Nov. 23, 2011 – Was exactly a year ago yesterday that I realized that my what was going on 3 months of constant fog and pain was not getting any better and that I had to go to the Drs. He checked my strength and agreed it was a concussion. Said I would need to be off work, doing nothing for at least a week then we’d see where I’m at. My life changed that day in what feels like an instant today. I was SO EMOTIONAL, and the Doc., although gave me the right advice was a total dick (maybe he had a bad day??) anyway I went home to call my parents crying when I heard my doorbell ring, it was my ex, showing up out of the blue, after we had a horrible break up in Dec. 2010. After ALL he did (Stole, lied, broke into my house taking our cat I was caring for, my things like clothes, boots, shoes, etc.) here he was, like nothing had ever happened. I cried saying “You’re ok Ari, you’re ok” I had so many nightmares about finding him….He said “Of course he’s ok” Anyway he eventually left as all we could do was argue as I was crying.
I haven’t really seen him since. I did twice in public incl. once last week – I’m hoping they were accidents but God knows as I know he was stalking me for a while.
I had to deal with all this on top of my concussion. I also had to re-live it all over again, including other horrible things that happened to me in previous years. I would wake up in the middle of the night as if I was going through things for the 1st time that had happened years before. I live alone and my family is out of town. All I had was me, myself and I and I found out who my real friends are. But I still had my cat Neko – he lost his buddy too, so he was out of it for a while but we had each other.
As time passed I would still notice things missing that he took. After all that time, I would go to wear a certain item of clothing or want something in particular and I would realize that it was gone and that he probably took it. I would break down and re-live all those emotions again, as if they just happened because technically they were as I hadn’t noticed these things go missing when they actually did.
As if that wasn’t enough, money started to run out as I had no benefits and was living off of Unemployment which wasn’t much. For the 1st time in my life I felt what it was like to be on the other side. I never made it to the streets thankfully as I know some others have. But I had times where I was starting to worry that I wouldn’t have a place to stay as I was getting behind on my rent. I looked horrible, was barely eating and I didn’t care. I did not give a fuck what I looked liked, I just wanted to feel normal again.
I stopped listening to music and singing and dancing which I love because I was feeling horrible and couldn’t do that great anyway, I just wanted to do what I could so that I could feel better as soon as possible so I could get back to doing these things
I will never forget these two times. One was when I danced as I sang again for the 1st time in months, I preformed like I never did before, and the other I sang my own version of White Christmas in the shower and it felt so awesome. I never belted out like that and this was all me, I could not believe what I was hearing and it was so beautiful and it was coming from me.
I had and still have my faith and music which is my whole life. As hard as this has been, it’s been the BEST thing that has ever happened to me. I have a totally new outlook on life and a fearlessness with my music that I never had before. This is what I indirectly prayed for. This is what I needed to live my life the way I’ve always wanted to, without fear and I would not trade it for anything.
If you are in the beginning and feeling low and restless, just know that we’ve all been there and I can promise you that it does get better!
I’m looking back to how I was then and how I am now, at my most favorite time of year and I feel so much more like myself (new and improved though ;) ) and I wanted to share this ‘cause I’m excited for the Holidays as I will be able to enjoy it more than I did last year.
I’m thankful for this group and everyone in it. I hope most of you are having one of your better days and if anyone wants to ask me anything at all or maybe has something similar they want to share, feel free :) xo
I got my head bump on holiday last year, me & my mates had gone to Crete for our holidays we weren’t going wild like most youngsters do, things just happen though & then they’re done! I was 19 then & the 6 of us all travelled together, shared a villa & had the intentions of having a chilled out time. My trouble started one evening when we were walking down the main road into town, I was near the back of our group, a guy & girl on a quad bike were speeding along the roadside, they were going too fast & weren’t even wearing helmets. I think they were drunk! The girl must have been on the back of the bike, she was yelling crazy drunk stuff, I looked back only to see something hit me in the head & then I went down on the road.
When I came round my friends were standing around me ready to phone for an ambulance, they said the biker girl had whacked me with something but they’d driven off, they weren’t British so I had no idea what they were shouting, my friend Matt said he knew they were Polish, he understood some of the words. I didn’t care but I was dizzy, spaced out. I’d been whacked before playing rugby & cricket but never had I been walloped like that before!
I got up eventually despite the crowd growing around us & we got a seat, I must have been out of it for a good hour or so, I said to my friends to go on & go out without me but they insisted on all going back home & we’d have a quiet night instead. I felt angry, so very angry about what happened that some drunken idiots had no idea how they’d spoiled my day, I didn’t know then that they’d caused me to have a concussion & if I could have chased them down, believe me they would have got it, Polish or not they would have had a mouthful.
The next day it was so hot, I felt like I had the world’s biggest hangover yet I hadn’t drunk anything! I lay in bed groaning at the pain & my left eye felt like it was gonna pop out the pain was so great, I had to ask my friend Shaun to take me to the local medical centre. We got a taxi there & waited about an hour to see a Dr, he said I had a concussion & that I had better be very careful to rest & reduce any stimuli for the next few weeks, he also said that a small percentage of concussions would not recover, this worried me but he was only telling me for my own good. He explained that they see many sports people & that I was lucky to have come to that clinic as they had treatments available to aide recovery. I was glad to be with a Dr who knew so much, I don’t think I would have had that much information if it had happened & I’d gone to an NHS hospital at home.
The heat was a pain & I had to rest for the whole remainder of the holiday, I knew I was unlucky but my friends took it in turns to stay with me each day, I am lucky to have such good mates. I found that after a few days my speech went funny, I had difficulty remembering what I’d started saying & sometimes I’d open my mouth & just nonsense would come out! My headaches were worse with the heat but I had some pain killers, I also went back to the clinic & had some holistic cranial massage which helped as well as a scan to make sure it wasn’t more serious. They were great to me & I was surprised to get this sort of treatment in what is quite a poor country, better than at home for sure.
On getting home (I slept through the flight back) I was met by my girlfriend, she couldn’t understand despite my explaining what had happened, she seemed very cold towards me. Later I found out she had planned to break up with me on my return as she had been seeing someone else, someone with a larger wallet! She decided to wait & it didn’t end well I just fell into a horrible depression, the guy she went off with was her ex, he used to treat her badly, he’d hit her before & was a real prat he just wanted to split us up as soon as he found out we were together. I guess that some people are just very lonely, messed up & spiteful. She said it was nothing to do with his money but she was soon driving around in a new convertible car!
The depression was hard & I still suffer now, from being happy & healthy I was now down & alone. She left me with lots of debts too & to add insult to injury she turned people against me in order to ease her own guilty mind. PCS & depression with break-up blues is a rough combination & I found it harder & harder to cope, even on antidepressants, my mind was lost at sea. I tried to get follow up through my GP to see a neurologist like the Greek Dr had recommended but they just weren’t interested! I went to see 4 more GPs but they all just offered me stronger medications, I was starting to lose hope until I found that I was covered through my sports insurance for treatment. My dad brought it to my attention that he had gotten treated after hurting his back playing county football years before. I made a claim & got into a private clinic in North Yorkshire, they were great, even better than the Greek clinic & I had some physio, cranial therapy & hyperbaric oxygen therapy within a few months I started to get back to a bit of my old self.
Those months were the worst of my life & I don’t really know how I could have coped without the private care. The only other option was to sit at home popping pills all day, going crazy. I later learned how many people there are out there in Britain who are abandoned because of concussive illness, that the only money is spent on severe brain injuries & coma patients, so why? If people are really suffering but not in danger of dying from their head injury, why can’t they still get the same level of care? I agree with David’s campaign to spread the word & he is doing a good job with all the people who support & help him too, each one of you deserves a medal in my opinion!
I knew nothing about all this before yet now I am going to try help make a difference maybe by starting a charitable cause, I will definitely avoid drunken Polish quad bikers in future & gold-digging girls who dump you as soon as they get a better offer! If I have one piece of advice for anyone suffering with this PCS it is that you are not alone, there are so many more like you but they are suffering in silence until this country gets its act together. I mean if they can provide that care in Greece (the poorest country in Europe) then why not in Great Britain? Thank you, Barney.M.
I was at college studying fashion & design before I had my concussion. Now I have a hard time writing. This is best if I write in short sentences. I am 19 years old, I live in Sheffield.
What happened is I was hit by another girl, she was messing about with the tailor’s dummies. We used them for fashion design, this girl was being silly, pretending to be dancing with the dummy. She was trying to be popular, to get attention from the rest of the students. The tutor was away for 15 minutes, we were trying to do our projects, mine was to use cloth to make floral garments with modern looks.
What happened was I was kneeling in front of one dummy fitting and pinning cloth to it, the girl was dancing past me and the dummy slipped out of her grip. It hit me hard on the back of my head and I fell on my face! I passed out for a while and came to I was on my side, in a recovery position. I went to the college’s nurse who gave me pain killers and a cup of tea. I had to go home.
The girl who was mucking about never said sorry or got in trouble. My Dad took care of me he is a porter at hospital, he took me in to see a Dr but they only gave me more pain killers to take. My Dad kept a watch on me every day after that. I had migraines, I got dizzy and lights and sounds hurt my head too! After a while I would get upset and this would freak people out a bit. I didn’t know why I was always sad but I didn’t like it.
After 3 months I was turned out of college because I had missed so much work, I got into a fight with the girl who ‘dummy’d’ me on the head. I abused the tutor when she tried to tell me off so they excluded me. I was made to feel like it was me who was in the wrong. Nobody except my Dad listened, he kept taking me back to our family GP to try get some help with my problems. It was like a growing pile of trouble and I couldn’t cope. I started to cut my arms one day not bad but to stop all the demons. My head was full of pain and nothing else helped.
Twice I ended up in casualty for cutting and I had to see a psychiatrist. My problems were at a crisis, my moods bad, my relationship with my Dad was shaky. The shrink said I had ADHD and possibly borderline personality disorder because of what happened at college, I knew he was wrong but nobody would listen. One night I tried to overdose on the meds they gave me, I was sick all over my bed and ended in hospital. The nurses were kind to me but the doctors were not! I told one about my concussion. He said I had long-term concussion problems. I eventually got told about Post concussion syndrome and it made sense.
I felt relieved that I knew what was wrong, but it didn’t get any easier for me. One night I fell out of bed and hit my head again, I cried out and my Dad found me on the floor crying. The next time was when I got drunk at a friend’s house, I fell down the last three steps and hit my head on a wall!
Now I have stopped taking the ADHD meds and I feel less spaced out. I have to live with this pcs thing, no one will or can treat it, the doctor said I will recover on my own, but I have been like this now for 14 months. I wish I could feel better, its much worse when I have to spend time alone, now I try spend time with my Auntie and her kids, they don’t judge me at least.
Who ever reads this if they are my age then watch out. Psychiatrists don’t do anything but try twist things around. Mine tried to blame everything from my Mum dying to my Dad and my behaviour AFTER my accident. Be very careful about what meds they give you they can make things worse! Most of all be kind to yourself cos not many people will understand. I knew I wasn’t crazy like the shrinks said and now I have found this website I know more about why I have this trouble, Dave told me about places like headway and showed me where to go to get help. If I could use my time to help others through pcs I would. I think things happen for a reason, but I might get through this and work with people who have brain injury problems one day. Fashion seems pointless now. Love Mica x
I was a victim of an assault which left me concussed and bruised. It was the weekend of my 18th birthday and my friends and me had gone out to celebrate in Newcastle. As I was the last of my group of friends to reach 18 it was supposed to be a special night, my first proper lads night out!
The trouble started outside the toilets a stranger started arguing with my friend Francis and they were screaming and shouting at each other, ready to come to blows over who knows what. The next thing it all kicked off and they were locked together fighting. The other guy was very stocky, obviously into body-building or even steroids he looked like the Hulk! Two of us tried to separate them and the fight spilled through the door of the toilets, I was clinging to Francis trying to separate them, next thing I knew I was on the floor and my head was wedged in the door which was then slammed on my head! I’ve never felt such pain all at once, it was enough to almost knock me out and I haven’t felt anything like normal ever since.
The security must have charged in to split things up and we all got chucked out, myself included despite being totally out of it I think two bouncers carried me out, one holding my legs, the other my shoulders. The nightmare had begun and I sat outside on some steps for maybe an hour or so with another friend before he called for a taxi, we went home and I went to bed, dazed and in agony.
The next day I had the worst headache of my life and it wasn’t from drinking, I hid under my bed covers and relived the night before over and over again until I thought I was going mad. I started taking paracetamol but it didn’t last long and by Monday morning my Mum was telling me I should go to see the doctor. I had some bruising on the sides of my head and neck but I wasn’t cut. The doctor looked at me as if I was a trouble maker and he was clearly judging me because of how and where I got the injury, I almost wish I had lied about it but he did give me some cream for the bruising and some better pain killers. He said that I should rest up and see how I was over the week or I may need a scan if there were any problems like passing out or memory problems etc..
I had a week off work but when I went back in I couldn’t work the computer properly or even remember what program did what or my passwords, so they put me on tea making duty and opening the post. My boss was a sarcastic kind and seemed to take the view that I deserved what happened to me, I felt things were getting worse and my moods would change from hour to hour, one minute laughing at anything, next almost in tears or exploding with anger over what happened. My friend Francis who was in the fight got a black eye and a broken rib but otherwise he was okay, I had this invisible thing going on in my head that nobody knew about…
My moods got worse in time I had managed to piss off all of my friends to the point where they were starting to avoid me, we didn’t ever go out on the town again and I was feeling bad, I mean depressed like never before. I started drinking in secret, sometimes in my room, sometimes I’d just disappear and find somewhere quiet to go and drink, lots of spirits and basically anything I could get that helped me forget. At this point I still didn’t know what post concussive syndrome was and I was just self-medicating my pain and depression but it meant my life was really on the slide big time, I hadn’t any real friends left and the girls wouldn’t come anywhere near me either!
One night in the Summer I went to the park to sit out with a bottle of absinthe and all I remember is waking up the next morning freezing my backside off, a pool of sick next to my clothes and the nearly empty bottle! That was the low point for me and when I got home I broke down and cried in front of my Mum, she didn’t judge me and her instinct was that there was something very wrong still after the incident at the club. I told her everything and she agreed to go with me to see a doctor. My doctor had a field day with it all and sent me to a rehab centre for addicts and alcoholics, this made me feel like a criminal or worse! It was by going there that I found out about PCS and that just because I hadn’t been in a coma or to hospital I still had suffered a long term problem.
My care worker at the centre told me about his problems with head injuries from drinking and fighting (and playing rugby) which led to him being diagnosed with PCS, he later went on to cocaine and marijuana before being arrested for assaulting one of his old friends. It was a wake up call and I said to him and my Mum that I would stop drinking and try get help to get better. I tried to find out what I could do with the help of my care worker to recover but it wasn’t easy there was so little information and there were no doctors or specialists who specialized or knew about PCS.
In the end I had to give up my job because my boss said if I didn’t he’s fire me, so now I’m signing on and volunteering in a community project where we work with young offenders doing street art and music performances. I still can’t manage to work a whole day without problems and at 19 now I have so little energy I feel like it will never go. I would like to find treatments but realize that I will probably have to pay for them myself and I can’t go on self-medicating either. Going back to the doctors I just end up picking up new tablets every time I go for depression, tranquilisers for my moods and painkillers, they say they can’t do anything more other than put me on a waiting list for psychotherapy which is about 6-9 months wait. I don’t know how that will actually help me as the problem isn’t in my mind it is a neurological one?
I want to warn people about the danger of self-medicating after a head injury because it nearly ended very bad for me and if I’d have carried on I am sure I would have been using stronger things like drugs and getting into more trouble. I also want to warn people not to just trust what their doctor says if they try to fob you off because if they don’t know about PCS then they won’t tell you, they will keep trying to refer you on to someone else and even try and make you believe that it is all in your mind! Someone needs to get the facts out there as this is a big problem, especially in Newcastle with head injuries. People need to know it can happen to anyone and anyone can have their life turned inside out in seconds. Keep your groups going and keep telling everyone about PCS so then one day the doctors will have to listen. Thanx
My problems began when I was rear-ended by an uninsured kid driving his Mum’s car without permission! I was on my way back from work one evening; I had just finished a late shift & was fairly beat. My only warning of what hell I was to enter was as I slowed down at a junction, looking up in my rear-view mirror I saw headlights approaching way too fast… And then whack! My airbag failed to go off but luckily my head didn’t make contact with the steering wheel, otherwise I would probably been out cold for a while, or worse in a coma.
I literally had the sort of stars & little birds flying around my head, cartoon type of black out & some nasty whiplash afterwards. I remember the police & ambulance turning up just as the sirens seemed to shock me out of the blackness again, my neck hurt so badly & the headache was incredibly painful. I went to hospital, stretched out & was kept overnight, it was all a bit of a blur looking back & I can’t really remember what was said, nobody seemed to know what to do even up until the point I was discharged. One thing I did get was some very strong, very addictive pain killers, and this is where my problems began to get compounded.
5 days of work & then back with a collar-thingy, I was just feeling lucky to have my car been quickly repaired & the young man (a 15 year old) who rear-ended me was charged with dangerous driving etc…
I had these horrific headaches every morning which seemed to last all day, despite the pain killers, I would take more than the prescribed amount because they kept me on the straight so I could carry on working & providing for my kids at home. I did the worst thing I could have; I went to see my GP & got some even stronger pain killers, which she happily issued without so much as a blink of an eye! Every month or so that went by I would have to go back & have the dosage increased & I seemed to be getting a sort of physical high from them which put my pain & slowly creeping depression from the accident to one side. I realise now that I had never even allowed my brain or body to recover, I was simply plastering over one crack, then another & feeling worse day by day…
Things came to a head when I had a massive panic attack (my first ever) driving to work one morning, I had to pull over & felt so trapped in the car I was trying to scream, eventually I got out, collapsed onto the pavement & before I knew it I was being greeted by ambulance men yet again! They took me to A&E where I was checked, my blood pressure etc. & various tests for several hours before sending me home. Still I had no real clue about the fact that I had PCS, I thought that only happened to people who were concussed. My brain had been violently shaken in the initial crash & that had caused such subtle, undetectable damage that I was in the worst mess now. I had no idea how long this thing would last, I worried about my job, family & soon I was a bit of a wreck. I tried hard to hide my new handicap from the world but it was like a vicious thing stalking my every move, my memory got worse & the pain increased. What’s worse was I was hooked on painkillers, I wouldn’t admit it at the time but I guess nobody ever does, you get dependent & think that it’s okay & that you’re fine & can stop taking them anytime… that ain’t the truth!
Skip forward 7 months & I still had no diagnosis or any treatment, I was coping on pills alone. It wasn’t until I saw an article on a website by another lady in the USA who was rear-ended like me, she got PCS & was being treated by a world leading clinic, special programs of exercise & Cranial therapy for her PCS, it made me sit up & realise that I had to get help. I booked in to see my GP again & told her that I had a problem with the pain killers, that they were just masking my pain & that I wanted to try some remedial therapies such as acupuncture or the therapies I’d read about from America. This was met with a blank response of “None of those therapies are proven scientifically to work, let alone help you with a concussion.”
I felt like I’d failed because I only came away with more, stronger pain killers & I went home & cried through sheer frustration, it seemed this PCS thing was like some invisible phantom & even the Drs wouldn’t admit to being unable to help me! I made enquiries via the internet to private clinics in London & the south for treatments & therapies but when it came to the prices they were into the thousands of pounds for a series of consultations & a course of effective treatment to rehabilitate PCS sufferers.
My cousin lives in America, she has a good job & home over there in medical insurance business & I decided to contact her, pick her brains on this. She said that most states have one or more clinics, sometimes universities who have special rehabilitation programmes that are available privately. I had to consider this but the costs were still a lot with travel, even staying with my cousin wouldn’t have allowed me to afford what was on offer…
So now I am just trying to live with this PCS thing, I still take pain killers & also am now on a kind of antidepressant designed to help me sleep because my mind is much disrupted from the experience. I am currently looking into local holistic treatments after speaking to David, he helped to outline all of the places I could go to get help with different aspects of PCS symptoms, I think I will try a course of Bowen Therapy technique as this deals with multiple symptoms & I want to try more Reiki after a few sessions I had were very relaxing & left me virtually pain-free for quite some time afterwards. Why my GP couldn’t help me with this? I simply don’t know how so many people must cope with it. It has been great finding someone else who has been through a similar experience & who can then help others to find a way out of the mess of drugs-based NHS way of just keeping people managing after a concussion or brain injury, so a big thank you to him he’s had 4 brain injuries & still has the time & energy to start up these websites to involve others on a personal level, that takes some determination, so thanks for persuading me to write my story David. :o)
I want to tell people how I coped after being diagnosed with Post Concussion Syndrome 3 years ago, and to warn those who have more recently been diagnosed about the problems you may face. I live in the north west or England where I used to work for the Fire Service. I was forced to take a desk job because of my PCS & later I left to take up a less challenging occupation in terms of technicalities etc (I’m a gardener now!) My whole life I have kept myself fit, eaten healthy & been active. Now I collapse after a half day’s digging weeds or mowing a lawn, desperate to get back to how I used to be or at least a fraction of who I used to be!
My trouble started one day at a kids party of all places. It was Summer & I was looking after my sister’s two kids who were then 5 & 7, they were trampolining in the garden to make sure they were safe on there. Well after much pleading for me to join them I gave in & joined in the chaotic fun. It was more fun than I’d expected to be honest, from what I remember we all laughed & had fun. One split second later I felt my knee give way under me, I guess I must had hit the edge frame of the trampoline? Well next thing I was on my back on the ground, world spinning, my vision went & the next I remember was my youngest niece standing over me crying…
I got up after a minute or two but I felt drunk, dizzy & like my head was about to implode in on my brain! I’d had blows to the head before but always whilst wearing a helmet so the shock of it really sent me sideways. My sister saw what had happened & drove me to A&E to get checked out. It was a Saturday evening so we waited for about 7-8 hours to get seen, I think I snoozed some of that time as well. I found I could not keep a thought still in my head & this worried me because I was never used to not being in control.
By the time I was seen it was the early hours of Sunday morning & the nurse who tended to me said that I looked shocking! She did a few tests & asked me about the time I went down before sending me back out to wait for a CT scan, this meant another 2 hours waiting. I was not sure what they were looking for but nobody seemed to be able to give me any answers, although the staff were very pleasant & professional, I felt like I’d just arrived from Mars or somewhere & they’d never seen a martian before! I guess the tiredness & shock had started to play tricks on my brain, the pain was intense but they didn’t give me anything to relieve the pounding in my head.
After the scan they just said that I had some brain swelling but they couldn’t see any permanent damage so I could go home. I agreed, exhausted & fried as I was. Next few days were spent at home, in bed or with curtains draw listening to soft ambient music. A friend brought me some pain killers & I must admit I had a few drinks too because it calmed me down & masked the pain temporarily. Two weeks on I was still off sick & was seriously depressed, I mean badly. My wife had passed away four years earlier & that was my only previous experience of such depression, this was a different sort it had no seeming foundation but it did bring up so many bad memories from various stages of my life. Next stop was my GP to get a sick note & to find out why I wasn’t improving, she told me that concussions heal themselves usually within 3 months & that I shouldn’t worry & maybe I needed to take a holiday, relax etc..
I did take her advice, I booked a golfing holiday in Portugal with one of my oldest friends to get away & feel better. When we got onto the golf course it was like I’d never played before, I couldn’t hit a ball straight or judge the distances, my head was fried from the heat & I lasted about 4-5 holes before I had to quit & go back to the club house & lie down, cold wet towel over my face. It was then that I realized that something more was going on. Not only was my vision off key but I was struggling to red words properly, to do simple tasks that anyone would take for granted. Also when I did drink it was hitting me 4 times as fast & hard as before!
On returning home after spending the rest of my holiday lounging in the sun I decided I would have to force myself into an effort to go back to work. On my first day back I had a long chat with my boss & he sent me for a sight test/eye test before he would let me resume any duties. The optician said that I would need glasses to read but that other than that I was probably okay & should see a neurologist anyway because of what I told him. I was working again but doing clerical work & answering phone queries etc, I waited about a week or so & went back to my local GP to be referred to a neurologist. I was told that they could not justify sending me to see a neurologist on the NHS, she said it was like “shutting the stable door after the horse had bolted!” her exact words! I was bemused & told her about my on going problems again hoping she would see sense this time. It was a waste of time, she also said that cost had to be taken into account too & that they were struggling to fund the NHS, the service she said was straining at the seams.
I was mad at what I heard but they weren’t going to budge so I went to see another GP, and another who each came up with a number of objections as to why I couldn’t be seen by a neurologist, including one inferred that because I was a single man with no dependants I did not warrant referral! I was outraged by the blanket response but did not give up, I spoke to a patient liason department to complain & find resolution. I was led around in circles by them too. They were clearly unable to do much except advise me to make an official written complaint to an independent body which would have tied me up for months. The pile of forms & papers alone was overwhelming, I just felt they’d done a number on me!
I struggled on with life & work for another 6 months before anything changed with my situation, then it was work that gave. I was unable to meet the minimum standards for the service & cutbacks were being made, so my situation meant I was near the top of the list for redundancies. Sure enough they let me go, I worked a month out & then was on my own with a financial pay off for my years of service. It was then that I decided to go for private consultation & see a neuropsychologist, get treated despite having been refused as an NHS patient. My Dr was a middle aged Swiss gentleman who spoke immaculate English, he listened to all my concerns, asked questions that my GPs & the hospital had not & tested me rigorously before recommending I come off of the antidepressants & anti-inflammatory tablets that I’d been eating for months. He said that after all the stress my brain had suffered during the impact of the fall I needed to let my brain cope on its own for a while but also under regular care & supervision. He explained that nearly every one of his PCS patients had been declined/refused NHS treatment before coming to him, nothing amazed him about my story. I felt safe in his hands & confident I would make a recovery sooner rather than later.
I had a course of treatments which I booked privately again, first some acupuncture for my headaches, some hypnotherapy for my depression & anxiety, then a course of a treatment from Australia called bowen therapy. I also had a friend who was a Healer, a sort of spiritual & holistic approach. She was a professional & gave me a course of Reiki (hands on healing) which brought up a lot of issues for me to deal with. It was a long but sure process of a combination of these that really helped me & if it weren’t for my neuro Dr & my friend I would not have known about any of these therapies, because wherever I looked on the internet everyone was on a list of medications which seemed really heavy. Some it seemed were just taking one thing after another for each symptom, so say if they took painkillers they would get bad gut/stomach problems, then they’d have to take something like mebeverine for that too; then the stomach drug would make their skin come up in rashes so they’d take something else for that etc & son on until they were spending all day long just remembering when to take what!
I knew I was so lucky, for having my redundancy money which was more than sufficient for me to cope on & get treated privately. I felt bad that other people with PCS had to give up work, their homes, some managed on benefits of less than £100 a week & had no option to get treated so I guess they really had not much option other than to take all the medications from their GPs. This is partly why I wanted to tell about my experiences, when David asked me to write about my experiences good or bad I felt I had a responsibility to do so.
Now I am virtually symptom free & although I’ll never be quite the same again I am working & enjoying my life again. I would support a charity or cause for PCS for definite but it still seems as if nobody wants to talk about it at all? I mean the people who are in charge of the health services & medical research are just burying their heads in the sand with what should be understood & treated just like any other illness. I know that PCS isn’t immediately life threatening directly but I know now that many people (including sports stars) have ended up committing suicide after have one or more concussions & that the rate is higher with teenagers & young men under 25, it seems that a lot of the problems associated with PCS aren’t actually being recognized & that in my opinion is an even bigger problem for society to deal with!
I am one of the lucky few in a way. I could get treated but most Britons cannot because PCS sufferers are majority younger males from lower social background, the type who can’t get their voices heard or their condition treated. It is shocking how we are told that this condition is untreatable, it just stinks that people should have to not only suffer in silence but also be accused of imagining their illness simply because it is unseen. Thanks for reading my story, Edward.
My name is Suzanne & I have Prolonged Post Concussion Syndrome. My problems all started 2 years ago when I was working in the city as an office worker. At that time I was still happy together with my long-term boyfriend, we’d been together for 12 years.
One day I’d finished working & was leaving the building, it was Winter & I couldn’t see the ice on the pavement, but then I wasn’t exactly looking for somewhere to fall over! All I remember now is that I’d not even gone more than a few steps from the front door of the building & I felt myself going, then whack, I lost a while after that & when I came around I was back inside the reception at my work.
Nobody knew what to do & I felt embarrassed more than anything else, I guess I must have been out for only a minute or two. Because no one had seen me fall they all thought I had fainted or something, so in the reception 3 or 4 people were fussing over me asking if I needed a Dr or a drink or whatever? I felt as if my head was not properly connected with the rest of me somehow & nothing seemed to make sense. Thinking back now that is about all I remember of that day, I must have gotten a taxi home & gone straight to bed.
My boyfriend was away working at the time so I just slept, the next day & the day after I called in sick because I felt so out of it. My boyfriend called me & asked what had happened, I said “I think I fell on the ice?” he said he was coming straight back that afternoon from where he was staying with his work. The oddest thing was there was no cut or bump on my head, it was just like a sore, tight feeling & a band across the back of my head made up of extreme pain. My vision was verging between blurry & okay, when I tried to do something simple like make a cup of tea or some toast I couldn’t recall how to do it properly so it took me a long time (by the time I got to drink the tea it was cold).
On the 4th day we went along to see my GP Dr X who I’d seen for over 10 years, he was an older gentleman & always very knowledgable. He said that I was concussed & should rest for a couple of weeks but if I felt able to return to work earlier that was fine too. I wasn’t concerned then as he seemed confident that I’d be okay it gave me confidence too.
On returning to work I had to have an interview about my absence & my boss interrogated me, I started crying I could not believe it, my accident happened right outside work & because nobody saw me fall they were treating me like I was lying! I was told to go back to work & that my absence would be passed onto HR to deal with, I couldn’t concentrate & felt as if others were staring at me all day, in other words it was hell!
Eventually my headaches got worse the more I tried to concentrate on computer screens & phone calls, documents etc, nothing made it any better. I was taking too many paracetamol each day that I just started to feel constantly exhausted. Eventually I crashed & fainted in the toilets at work, when I came round I knew something had to change. The next day I went back to see Dr X who prescribed me codeine based painkillers and anti-inflammatory tablets to try ease my pained head. I asked him how long this was likely to go on for, as it had been almost a month?
Dr X replied that he simply didn’t know but that he was confident I would be okay if I just got enough rest but kept a routine. I left the surgery thinking that there was more to this, that I couldn’t be normal if my symptoms were getting worse & worse rather than better. It would take me losing my job to finally be told months later that I had PCS, my boyfriend was supporting us both as I didn’t have insurance & the strain meant that our relationship was stretched to the limit!
Bills piled up at home each week getting worse as I became depressed at not being able to get my act together to be able to find work; matters were made worse by the death of my boyfriend’s Father, he had suffered for many years with Alzheimers disease & he took the death badly, eventually we had to make the decision to part as he had to move in & care for his mother who was now alone & struggling herself with illness. Things were such a mess & now I had to find somewhere to live as we couldn’t afford the situation we were in. I don’t blame anyone for us splitting up it was just our time was up…
After 1 year I was taking antidepressants as well as pain killers & was still not able to get any treatment for my PCS. I had heard of several different types of therapies that all would help but my GP refused to refer me saying that they were unavailable first, then too expensive, and then not guaranteed to work (I later found out this was all nonsense!). I was told I could see a psychiatrist if things got worse with my depression but that was it & I wouldn’t be allowed to see a neurologist or a specialist either…
Well, I was left to rot in a situation that wasn’t any good simply because nobody knew what to do, this was when I started to discover more about PCS & I soon found others who were also suffering in silence, left without help & often labelled as fakers or benefit cheats. It was infuriating for someone who had worked all their adult life, paid their taxes & NI to then be treated with no respect & all because the National health service had no guidelines or treatment plans to help people suffering the long term effects of post concussion. Now almost 2 years later I am still struggling after a 2nd concussion (I fell again this time in the bathroom!) that has left me even worse off, I struggle to get out of bed & now the prolonged effects all from a slip on the icy pavement have cost me my job, relationship & my sanity almost. London is a lonely place to live if you’re alone & ill with something like this, an illness that nobody can see or quantify, you feel like a ghost some days & the medicines are making me worse I am sure of this. I wish I could stop taking them but I’m scared to not have them to prop me up in case something worse happens!
If I had the money I would get private help but my money’s all gone & my health insurance ran out when my job did. PCS stinks for me but not as much as society’s denial of PCS being real!!!
I wonder if I’ll ever get better or if things will ever change? That is all I have to say about it for now except that if Dave B hadn’t let me tell my story (I’m told this will be read?) then I’d have nowhere to release the frustrations of my situation, so thanks again :o)
My name is Adam, I am 17 years old and I have been struggling with living with brain injury. My problems started when I was 14, I had a collision during a football match after school. We were winning and I went up to head the ball, instead I hit heads with another player.
I don’t remember how long I was down on the ground but people were stood over me all looking. I remember sitting up and feeling dizzy, the world was spinning. I went to sit out the rest of the game and when I got home I just wanted to sleep, my mind was full of flashing images of the accident and I carried on the next day as if nothing had happened.
The next day my Dad took me to see the family GP, she examined me and said that I would be okay within a couple of weeks and that I just had a minor concussion. My Dad asked if we should goto hospital to get me checked out but the GP said that concussion just sorts itself out in time and not to bother!
I was off of school for 10 days before I decided I should go back, I convinced my Dad that I was okay and to let me go. When I got to class it was hell! I could not concentrate, my head kept hurting, aching as if I was being kicked there again. My friends said that I was different, I didn’t join in sports again or have as much fun. Gradually my school friends didn’t talk to me much and I had frequent absences from school. My work and homework seemed pointless and my behaviour at home got worse. My Dad said I was being a pain in the arse because I was moody and quiet all the time and didn’t go out.
3 months later my Dad took me back to see the GP and I was referred to see a psychiatrist, this was hard for me I did not want to be labelled as crazy or loony and I felt like an outcast from my family and friends! When we went (it took 2 months to get an appointment) I had to take time from school and tell the teachers why, my Dad took me. We went to a place out of the town near a psychiatric hospital, an ugly looking place where nobody smiled.
I had to fill out forms there but couldn’t understand why and the psychiatrist was not friendly he just kept asking about my childhood and relationships at school. I was more unhappy than ever and then we had to go back again 2 more times to see him. The 2nd and 3rd times were more similar questions about all kinds of rubbish and I felt like crying, the psychiatrist treated me like aliar, when I said I was okay before the accident he made me feel stupid and said there may be nothing wrong with me. I knew this was not true, I had headaches, I was sad and moody all the time, I didn’t want to see anyone and then at other times I was unable to sleep or calm down at all so it would drive my Dad insane!
At the end of the 3rd visit to the psychiatrist he told my Dad that I needed to start taking medications, I was given Ritalin to take and told to come back in 4 weeks…
I had more problems taking that stuff and my moods got worse I was dumb and spaced out the rest of the time so it did not help. Eventually I had had enough and I started to hurt myself, I would bang my fists and sometimes my head on the walls when my Dad was not there. It made me feel better.
After months I missed most of my GCSE coursework and so much time off school that they put me back a year in school. My teachers had no idea of what I was going through and it wasn’t until much later that I found out that I had never healed properly from the concussion and that the GP and Drs had no idea why I was misbehaving. A friend of my Dad’s was a nurse in the A&E at hospital and she said that I might have something called Post Concussion Syndrome. She said I should go to see a different Dr she recommended and get another opinion.
I went on my 15th birthday and the man I saw asked me every detail of what happenend in the accident, he also asked and wrote down all my problems and symptoms and when we’d done he ordered blood tests and a follow up appointment. When we went back he said that I should not have been given Ritalin and that I had suffered a Mild Traumatic Brain Injury and had PCS. When I went back again they said that there was nothing that ANYONE could do to cure my PCS and that I just had to live with it until it went! That was all they said and I was abandoned again.
From then on my Dad had to struggle to look after me and things didn’t get much better. When I was 16 I had not taken my exams and couldn’t work. I had started to drink vodka and was taking ecstasy and smoking skunk without my Dad’s knowledge. When I got wasted with my new friends I could forget about the two years of hell, the time in my life I call ‘My Nightmare’ and I had 6 months of sheer wasted life. Since then I have tried to be more sensible because I met a girl who had been through problems too. We now live together and I look back at what the NHS did they let me down so much I trusted the Drs and they drugged me and made me worse. If I hadn’t had that I probably wouldn’t have gone off my rails later. I will never trust them again!
John writes :
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.