Concussion syndrome

[carolyn_me]

Hello, this is my first post, though I came here a few months ago to search for help with concussion symptoms. I found that there generally wasn't much information or personal accounts available about concussion and post concussion syndrome (apart from Headway's excellent publications). So I've come back to tell my tale just in case it helps anyone who finds themselves in my situation in the future. Sorry, but it's going to be long!

I had a fairly unremarkable fall off a bike in May this year (somebody opened their car door into my cycle path). Had a few bruises but felt the main impact was to the back of my head as my head hit the grass verge with a whiplash style impact. My helmet didn't crack, I fell on grass - I can't be sure if I lost consciousness - but if I did it would have only been for a second. I was a bit stunned but was OK and even continued my commute to work and completed the day (didn't feel right but put it down to the shock). The next morning I had a fainting episode when I got up (not like me at all) so I went to get checked out at the hospital, by the time I was seen I had recovered so they didn't do any tests and sent me home. I realised that I should take a few days off after the knock to the head and to let the neck and back muscles mend themselves from the whiplash.

All pretty standard so far. It was when I tried to return to work that I realised things just weren't right. All I could seem to describe it as was 'a foggy head' or 'a hangover that won't go away'. I couldn't concentrate for the fog and any slightly loud noises/commotion just stopped me in my tracks. I felt slow and found it difficult to think and make decisions. I felt like a complete outsider to my team and as the week went on I became easily upset and emotional and was very tired. By the end of the week I was distraught and was crying even before I got to work - I ended up taking annual leave just so that I didn't have to go in. I didn't understand what was going on so felt too guilty to be off sick again.

I visited my GP the following week, explained my accident and my current state and was given a 2 week sick note and was told I needed mental rest with nobody asking about the accident; after that he would consider ante-depressants and counselling. He encouraged exercise though (I run swim and cycle and asked if I could still do these things). He suspected post traumatic stress even though I thought I was fine with the actual accident - I was still cycling. I accepted the note though and agreed that I needed a break from work but I suspected that maybe one week should do it then I'd be fine.

After a week there was no improvement - I wasn't so tearful but there was no pressure on me so life was a bit easier to cope with the fogginess. Then (in the fourth week after the accident) I developed severe back pain which meant that I wasn't sleeping and was pacing the room in pain, even breathing was painful. I was suddenly very tearful again and with the lack of sleep even speaking was becoming a problem.

I visited my physiotherapist (whom I knew from previous injuries) - after telling her my story she recognised that I was in quite a state and really wasn't my usual positive self. She carried out a concussion test (Sports Concussion Assessment Tool 3). This revealed that I was actually still concussed (15 out of 22 symptoms, a severity score of 52 out of 132, long term memory and concentration affected). She gave some direction for the back problem but the main issue was to address the concussion and she instructed total rest - mental rest and physical rest for two weeks - do absolutely nothing and certainly no exercise (she suggested watching gentle films but keeping screens to a minimum, she also suggested meditation, relaxing in the garden, etc. - oh and no alcohol!). This sounds wonderful when you're fit and healthy but at that time it was very difficult to contemplate. However, I think this was a turning point for my problems, I finally had a reason for how I was feeling and I had a plan - these things really help!

So I got another sick note and went to stay with my parents for complete rest. I did exactly as I was told and by the end of a week and a half my speech was much better and I wasn't so emotional. I did however still have the same fogginess and was still not myself (I attempted a visit to a supermarket but couldn't cope inside and had to leave). So almost two months after the accident I still had not returned to work, I had no life, I wasn't seeing my friends, I wasn't exercising, I still wasn't coping with the fogginess, with loud noises, busy places, the radio being on whilst trying to have a conversation etc. and I had work on my back trying to arrange Occupational Health and Human Resources appointments. Luckily I recognized that I was in danger of depression & anxiety so I tried keeping a diary, I took up meditation, I started some gentle walks and I did some (limited) research into concussion.

This is when I found 'Headway' - I called their helpline and chatted to a lady who listened to my problems and symptoms and she assured me that this was all normal. I just need to give myself time for my brain to recover. She explained why I was unable to cope in busy places - that all the sensory input was just too much for my brain to deal with at the moment. She suggested things like allowing my brain 'shutdown periods' - cat-napping (before 4pm!), wearing earplugs in noisy paces, going shopping at night time when it's less busy (to stores open 24hrs). All great suggestions but again, the main thing was her understanding of my situation and the relief to hear that it is real and other people have gone through it and have recovered.

So I continued the recuperation with my parents (I was very lucky to have this option available to me and it worked a treat). To cut a long story short (sorry, it's already long isn't it?!), I gradually introduced activities and I finally managed to return to work on a phased return (10weeks after the accident). It was very tiring and difficult but I managed with lots of naps! My four week phased return is now over and I'm back full time and I can also finally say that the fogginess has cleared and I feel myself again. So for me, the whole concussion experience lasted about 3 months but felt like an eternity. There are so few people out there that understand it and tried to convince me that I was depressed/anxious - I'm sure that I was in danger of depression taking over but I feel like the concussion symptoms are so under-rated and ignored - I saw four different GPs and only one of them acknowledged its existence! Constantly attending appointments and having to contact work to explain myself didn't help matters at all.

Anyway, that's my story and I hope that the little tips that I picked up along the way are of some use to others, here's a quick list of the things that really helped:

Rest - properly -, turn screens off and accept any help you can get from friends and family (but accept the fact that you must rest!)

Sleep well and eat well - look after yourself and allow your brain to heal

Be aware of depression/anxiety creeping in - try meditation, BUT ,remind yourself that you are suffering from a brain injury and it will heal and you will recover (don't let others convince you that you are 'just depressed about the accident')

Phone Headway helpline - they can reassure you, you're not alone and what you're experiencing is very real (show your friends/family and GP their leaflet 'Minor Head Injury and Concussion'.

Good luck and be kind to yourself

x

[SAMBS]

hi Carolyn-me,I understand totally where you are coming from with your Post Concussion syndrome tale and I am glad you are beginning to feel a more positive outcome from it, even suggest that it was Frustration with and not depression from, the unrecognised after effects. if you have watched som of the recent TV programme 'An Hour to Save Your Life' you will no doubt have heard the comments and concerns Paramedics and hospital doctors have about the effects on the brain swelling and the potential for Brain Injury in whatever shape or form, blunt trauma is involved!

I'm so pleased you have found Headway and contacted them yourself, as well as following the advice your Doctor gave you, but also sorry to read they seemed pretty unaware of the implications from your accident. Did you take your concussion test - (Sports Concussion Assessment Tool 3). This revealed that I was actually still concussed (15 out of 22 symptoms, a severity score of 52 out of 132, long term memory and concentration affected). - and give it to your Doctor, it might be worth asking for an MRI brain scan.

As for Antidepressants, I found they made me worse neurologically and I stopped taking them! In fact, unless absolutely essential for different health issues, I refuse to take any meds prescribed or otherwise, because they end up in the liver, entering the bloodstream and being carried to the brain, often with some quite undesirable effects.

I had an aneurysm/brain haemorrhage, in 2013, followed 2 months later by a fall backwards on a ceramic floor, and was hit in face by exploding airbag in a car accident 6 months after that! these things often take time to manifest the after effects, just as they take time to settle down again after recuperation.

Stress, caused by frustration as well as after effects you had also takes it toll. so yes, it's good you also came on here, I'm sure you'll find several other replies will follow, because we understand your story and know how long it can take to recover from what initially may appear to be an almost nothing incident - when in fact it it's never that simple and we all know ourselves better than others. I wish you well and hope your recovery continues smoothly and speedily. S xx

[carolyn_me in reply to SAMBS]

Thanks SAMBS, I think you're right - frustration definitely came into it (and is probably still lingering now!), and I'm glad I managed to avoid any mind altering drugs - like you say, it's the last thing your brain needs if it's trying to fix its injury (unless of course other health problems require them more). I feel lucky that this was a short period of ill health for me as I realize that most other users of Headway are suffering with so much more for so much longer. I just wanted to plug the gap and tell a story with a good ending (complete recovery) for those who might have had insignificant accidents such as mine but who are just at the beginning of their recovery journey.

Your accidents sound horrid and I think you've had your fair share and hope you can recover speedily and fully too.

x

[StrawberryCream]

There are others on here who have post concussion syndrome so maybe they will respond to you (not my bi though). Thanks for giving a very helpful explanation.

[cat3]

Nice work Carolyn in documenting your issues so clearly ; I'm sure this information will be very reassuring to others who've suffered long term effects of concussion.

Many doctors still don't recognise Post Concussion Syndrome, so the more people who highlight the problem the better for all those affected.

Glad to hear you're so much better ! Regards, Cat x

[angelite]

Brilliant post, Carolyn : )

I'm sure that many post concussion sufferers will instantly recognise the symptoms and duration, sadly also the ill informed attitudes of GP's ! So glad you are feeling much better and are managing back at work now. It is surprising how much chaos even a seemingly 'minor' head injury can cause to the brain. GP's would do well to read the NHS info:

nhs.uk/Conditions/Concussio...

My son's second concussion after a blackout/ head hitting metal filing cabinet manifested as anxiety and lasted 3 months. He didn't want to see GP and get 'labelled' as having psychiatric issues as he put it, so we worked through it togetther. I was able to explain and calm him, as I had experienced similar during a suspected brain infection : )

Wishing you all the best and safe journeys ! Angela x

[louisele50]

Hi Carolyn

Thank you for sending in your story , it's nice to hear that that you have recovered from your injury and this gives me hope that one day I will also fully recover.. I'm 6 months post concussion but suffered another relapse 5 months in as I tried to get back to work too soon! I wish I had taken more time off at the beginning but like you say GPs don't recognise PCS and so failed to give you the right advice also as I only get 15 days sick pay and have no one to support me I was forced to go back to work.. I'm planning to go back to work again this Thursday , with a phase back to work plan! I'm still not 100% but I'm hoping this will continue to improve with time..

X

[Elenor3]

Hi

Thank you for posting, and good tips for recuperation. I have a brain injury but the concussion symptoms are just the same. I agree with others, it does get better but it's a slow process. Take care and let us know how you're progressing. x

[Whitleywoman]

Hi, great post. I agree there is a lack of easy to source information and support for people with post concussion syndrome. I fell in May and am starting back at work next week on a phased return. The thing that struck me most was the lack of understanding from people I thought of as friends. I got so fed up with people assuming I would be well a few days later, because they knew someone who had a knock on the head and felt ill for a couple of days. Lucky them, how I wish I could say the same. It is really reassuring to read of other people taking months to recover, and to share the bad times as well as the good news of getting better. Thank you

[Lemon_Pie]

Hi Carolyn_Me, reading your story is very reassuring. I was in a similar situation 2.5 months ago where I was in a seemingly mild car accident. It was raining and my car lost control on a turn, did a 180 degree spin and crashed backwards into a brick wall. I do not remember blacking out (if I did it would have only been for a fraction of a second) and had no post-traumatic amnesia; I remembered everything before and after the crash. I did not feel disoriented but my system was full of adrenaline and I remember being in a state of emotional shock. My body did not physically hit anything, and I had no broken bones or bleeding. I had a slight bruise from the seatbelt as well as a mild headache and neck pain.

I went home and watched TV for a bit, but 4 hours later I realised my headache had gotten worse and I felt sick. I was rushed to hospital where I was given multiple health checks to see if I had any serious injuries. Every reading was normal and healthy. I was then diagnosed with mild whiplash, but no concussion. Good. However the doctors did say that there was the possibility of a concussion, but that it would go away in a few days and would leave no permanent damage. I was discharged around 4 hours later and managed to walk all the way home without any disorientation.

The next morning at around 4am, I woke up in a state of panic; I became more and more disorientated, I could not speak properly or understand conversation, I found it difficult to find words, I couldn't remember things well; I did not feel like myself. Every time I moved my head I felt severe pain; as though my head was pressurised and in a vice. My personality felt different as well; it almost like I was funtioning at a lower level of consciousness than normal. Because I had felt fine the day before and the hospital staff thought I was well enough to go home and rest, I concluded that my symptoms were as a result of acute stress disorder or PTSD and did not go back to the hospital.

My accident happened at the worst possible time: at the end of my academic year. I was forced to go back into college and finish off work while I was in such a state. I could not rest until my work was done; I was told by my lecturers that I would fail if I took time off, so I pushed forward and somehow managed to pass with the highest obtainable mark.

But I had noticed that simple tasks such as crossing the road had become difficult to achieve. I knew that something was not right.

Three days after my crash I rested for 3 entire days and ate nutritious food. I was also taking supplements such as omega-3 fish oils, B vitamins and zinc, as I knew that these were good for the brain. I went to the doctor the next day, 6 days after my accident. I told her my story and she gave me a neuropsychological evaluation and looked at the back of my eyes to see if there was any residual brain damage. I was happy to hear at the time that I would make a full recovery within 3 weeks and that there was no signs of permanent brain damage. My whiplash had healed within a week of injury, so my injuries did not seem as serious as previously thought.

But I did not feel as though I was entirely back to normal; prior to my accident I was a Straight-A student, had an extremely high IQ and was very creative and imaginitive. My biggest strength was my ability to feel and understand music. I was a composer, and was very naturally good at writing music. Since my crash I feel my musical abilities have been comprimised and I can't feel as immersed in music as I could have been before. I am now at university and my future career relies heavily on my ability to emotionally connect with music. I don't know if this is a psychosomatic problem or as a result of physical head injury, but it is the one thing I want back, as it was central to the core of who I was as a person. I am aware that PTSD can cause emotional numbness, but I sincerely hope my issue did not occur as a result of my (undiagnosed) concussion. I have read a recent study that states that music-listening can change in post-concussion syndrome, but I have also read that post-concussive syndrome is psychosomatic and might actually be post-traumatic-stress-disorder. But there are so many conflicting medical studies, and doctors say entirely different (more positive) things than the internet does. I don't know what information to trust.

Additionally, I experienced severe brain fog from the day after my accident to just yesterday, when my "fogginess" began to clear and I started to feel more like myself. I hope my symptoms are temporary. I hope that within a few months I will be just as fast a thinker as I used to be and that my intrinsic sense of musicality will return to pre-injury levels. Reading your article gives me so much hope.