Post Concussion 8 months on. (Newbie here)

Hi, just thought I would share my tale as I thought I had got the PCS beaten,but seem to be having a relapse.

In February of this year, I was involved in an RTA on black ice, early one morning.Not overly fast,as I was aware there was ice around and was driving slow. However, I span my Suzuki Jeep twice, broke 6 ribs and banged my head on the door pillar and head restraints quite severely. Got ambulanced into my local A n E dept, where they checked me over and assessed my pain. Mainly from the rib injury and a headache, but nothing which seemed severe. Sent me home and told me to rest up, signed of for 6 to 8 weeks to let ribs heal. No advice ref headaches. Over the next 8 days my headaches increased in severity and I returned twice to the A n E dept. At no time was i given any form of x ray or mri scan, but eventually I presented my symptoms to a young consultant, who said "You have post concussion syndrome"! After he explained it to me, the jigsaw of symptoms fitted and I went home, advised to rest, but excersise, cycle and keep my stress levels down. Sadly due to my accident and losing my transport etc. I was forced to resign my job and concentrate on recovery. Over the next three to four months,I had suffered from a general "woolly" feeling, headaches and a feeling of being "dis jointed" or just "vague". At one time I described it as feeling like I was in one of those B Movie martial arts films from the 80's with bad dubbing. I felt all "out of sync" with my life. Luckily I had some savings,so did not need to stress over money. After 4 to 5 months, I felt better, but not 100% , though my safety net was running out and I needed to start job hunting. I was still suffering from bad headaches and sometimes in certain locations I just felt an urge to "get out" especially big crowds and supermarkets. I started looking for jobs and got some temp work driving, this was when I started to notice the problem was still haunting me. If I had tasks to do,which were simple and "mapped out" I was fine, doing the same route, same customers,ok. Change the route,the customers or any other variables and I was having almost panic attacks and savage headaches. My concentration, my sharp wit and my ability to be clear and concise, was deserting me. I finished that temp role and progressed into another, yet lasted three days, before the stress of the politics and the way the job was looking freaked me out. My belief in my own abilities seemed to be draining from me. Through this time,I had been taking over the counter headache meds (not working) and trying to cycle,which seemed to give me some relief. I am now nearly 8 months in, just seen another GP, who has prescribed me Amitryptaline and signed me off for another month.Plus is going to get me a neurology appointment. So I am back to square one and shortly will be financially ruined as my savings have gone. "Stay stress free" says the GP lol. So I feel light headed, have trouble in busy places or with bright lights, I have savage headaches and I seem exhausted. My memory seems shot and I just feel "vague" and "disjointed" from reality. None of which are traits I normally have, Thanks for listening. Any tips gratefully received. Ian

6 Replies

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  • Morning Tenere Rider,

    Judging by your name you ride enduro. I used to ride a lot of enduro 6-7 years ago but got into Moto X due to my son racing. Daughter races too now so we a re a proper MX family. As you can see from my description i too suffered a abi last year from a MX accident which was from a long concussion (4:8 minutes)it was awful but recovery is slow and acceptance is the key.

    I too remember the feelings of memory loss and just feeling awful and completely detached from recovery. You are in the right place for friendly help and advice. May I suggest to that you speak to your local headway group as this has been fantastic for me. Have a positive day matey and good to hear from you on here. Nick

  • Morning

    Shortish reply as I am very tired even though slept about 12 hours and have to go to work this afternoon.

    Yes, as mentioned Headway would be good place to get more info/support. Also community neuro rehab team - ask GP for referral. I found Remploy good people to help with employment issues - they helped me negotiate with my then employers.

    I try to cycle most days - didn't bike before my stroke mind you - even if only 2 miles ( about to do 5 before work today). This does seem to help me - along with any other exercise ( I swim , yoga and badminton).

    Yesterday was an extremely "fuzzy" day for me - wonder why ( late night at cinema) but noted an extreme improvement having spent all afternoon chatting to an old friend - never underestimate the power of just chatting to someone else - doing nothing much and concentrating on someone else's issues for a while...

    Best crack on - good luck ! :-) K

  • Hi there

    From your post it seems that you haven't actually had an MRI scan?! That would seem to be a pre-requisite to rule out a bleed or fracture surely? Sadly Neurologists cannot see much else that they can understand in these scans and so it is a case of wait and see. Keep pestering your GP for a referral to a neurologist but don't neglect what else your brain is battling with - what is your blood pressure for example? There is a mechanism at work here causing the pain (which itself is the major stress in your life by the sound of it!). Hopefully others here will report similar experiences and their longer term outcomes. I was lucky in that headaches have never been a feature of my TBI. Best wishes.

  • Hi TenereRider and welcome.

    Ring the Headway helpline they are a lovely group of people.

    Download the leaflets that headway had produced about life after a brain injury.

    By the sound of it you should take the amitriptyline for at least 3 weeks and probably keep taking it at least until you see the neurologist it will help if the pain is neurogenic.

    Other things that might help are

    Avoid caffeine

    Drink plenty of water

    Take an Omega supplement

    Make sure you get plenty of good rest.

    Prepare for the neurology appointment by

    Listing the history.

    List your symptoms and the way you feel

    Write down any questions you have and ask for an MRI scan.

    Hope this helps

    Love n hugs

    Xoxo

  • Thanks all, just got a Neuro referral form through,so on the phone tomorrow. Fingers crossed.

  • Hi all, just an update. I had my Neuro referral last week after a pretty crappy fortnight. I had been back to see my GP and as is the way with our local health centre,I got to see yet another GP, I explained my symptoms and informed her that the Amitriptyline her previous colleague had prescribed had not worked at all, just knocked me out and then made me feel "Stoned" until about 2pm the following day, along with nausea and disorientation. She informed me "They should have worked"! Then decided to take my blood pressure. Bearing in mind over four previous hospital visits by blood pressure is fine, she said my blood pressure was high and that I needed to be put on "Beta Blockers". So I got prescribed Propranolol, which she informed me,although classed as an anti depressant, had the side effect of slowing you heart and decreasing your blood pressure.

    I had noticed when she took my blood pressure,she used a "Small Cuff" when all other medics have always used a large?? Took the Propranolol for two weeks and OMG! Thought I was going to die. Headaches still the same, more nausea,dizziness,feeling faint and giddy. Stopped taking them and in to see the nurse,for a blood pressure check.....with a large cuff=blood pressure spot on. The nurse told me when questioned that the small cuff would show high blood pressure, so I have had the joy of beta blockers for no reason. Not happy.

    Anyway, finally got to see the Neuro lady who was lovely, went through everything and is referring me for a scan and also to see a psychologist ? She said as far as she could diagnose,I have got Post Concussion Syndrome and it could take some time to resolve. So still more waiting , still got the continual headaches,frustration, slight nausea, panic attacks and feeling of being disconnected from reality and generally trying not to get depressed about it. (Not easy)

    As I am not working, I put in a claim for ESA which I have been awarded temporarily until they assess me, so my finances are in the red a long way! If any of you are in a similar situation, I can thoroughly recommend. Step Change Debt Charity. They are a proper charity who have a great website,online help and advisors. They charge you nothing at all and they are actually supported by many of the big banks. So if times are tight,they are worth looking at.

    Will update once I have had my scan, wishing luck to all of you.

    Ian

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