I’ve made this website because I got a concussion a few years ago, am taking a long time to recover, and would like to share the resources which have helped me and the things which I wish I had known sooner. Hopefully they will help you too if you’re recovering from a concussion or if you know someone who is. They may also be useful if you’ve had any other kind of head injury or brain trauma.
THIS IS NOT MEDICAL ADVICE!
I am not a medic or health professional of any kind and have no medical background. The contents of this website are based on my own experiences and those of other concussion sufferers I’ve met, on advice from doctors and other health practitioners I’ve seen, and on the websites of health services, concussion clinics and brain injury charities. I hope the information here is helpful but it is no substitute for professional medical advice.
Prefer to read on paper?
You may find it easier to read this on paper than on a screen so I’ve tried to design this website in such a way that it will be easily readable when printed out directly from your browser.
This website isn’t written in a particularly concise way. I’ve written it like this because I got tired of reading dry factual websites and was curious about the experiences of others. You can see the websites listed below for basic information in a simpler format.
General information on concussion, post-concussion syndrome and brain injury
Here are some good websites to get you started. There are many more and if you find other good ones, feel free to let me know and I’ll list them here. These are just the ones I have found, and found helpful.
(You’ll probably come across the term ‘mTBI’ or ‘mild traumatic brain injury’. Note that ‘mild’ in this context is a medical term and doesn’t mean that the injury can’t thoroughly wreck your life.)
Headway – a UK charity supporting head injured people – this is a good leaflet with basic information and coping strategies which you can download and print out and they also have in-depth information on the different types of symptoms you might be having and strategies on how to deal with them
The Brain Book – my GP printed this out for me right away and it’s a useful guide to what a brain injury is and what you might experience – this is an online version but each section is printable and you can also download the whole thing
NHS Inform (Scotland) concussion info
More detailed information and advice
You’ll notice that most of these websites are American. Concussion research and treatment seems to be more developed there than here.
Cognitive FX USA – an American clinic which treats concussion and also has a lot of detailed information on concussion and post-concussion syndrome
Dr Heisig – an American naturopathic doctor and concussion specialist who offers a paid online ‘concussion reset’ course but also has lots of free information via his blog and email list – this video is very useful in outlining how long concussion recovery may take and what can be done to hasten recovery
Subtle Brain Injury – this website has a wealth of detailed information on brain injury and post-concussion syndrome and is run by a brain injury law group (in the US) – it’s one of the best resources I’ve found for really getting into the nuts and bolts of what’s going on – it includes up-to-date information on recent research into brain injury and related problems, and explodes some of the commonly myths about brain injury (such as the assumption that if you didn’t lose consciousness then there’s no serious long-term damage)
Living Well with Brainlash / MTBI – this website is by an American doctor who suffered a whiplash brain injury and her blog has useful information on recovery, including tips on eating well, supplements and other therapies – she also offers personal life coaching for maximising your recovery
Brain.rehab – a website for brain injury and stroke rehabilitation started by an entrepreneurial concussion sufferer and a chiropracter and which offers a free brain rehabilitation course online
Concussion Alliance – an American organisation supporting and advocating for concussion sufferers with lots of useful information, including information on post concussion syndrome
Resources for friends and family
How to help someone with a concussion or TBI – this page (from the Cognitive FX concussion clinic) outlines a number of practical ways in which you can support someone with a brain injury to recover and also explodes a few more myths about brain injury
Relationships after brain injury – good overview by Headway on the ways various relationships can be affected by a brain injury as well as advice on how to navigate them
Top tips for friends and family – also by Headway, practical advice on how to best support someone with a brain injury – note that there are some excellent leaflets at the bottom of the webpage which you can download and print out
Other accounts of brain injury recovery
I’ll post articles and blogs by others with brain injuries as I come across them. If you know of any more, please let me know as I think the more we can share our experiences, the better. I personally find it very helpful to learn about what others have experienced with brain injuries and how they have adapted and recovered, both in a practically and emotionally.
Headway online forum – the British brain injury charity, Headway, have an online forum where you can have discussions with others with brain injuries, and read about their experiences.
Jill Bolte-Taylor – a Harvard neuroscientist who had a massive left hemisphere stroke and wrote a book (My Stroke of Insight) about her long but impressive recovery and the exceptional insights into the nature of the mind which she gained from it – interesting and inspiring
Laura Schmidt – an American therapist and racing cyclist who fell while mountain biking and injured her brain writes an intermittent but detailed journal about her lengthy recovery, which includes informative explanations of brain injury by her husband – her symptoms have been wide-ranging yet her tenacity and emotional openness are quite humbling – it’s on a website called Caring Bridge and you need to create an account to access it (it just requires your email address and a password)
Contact / contribute
email: alison at concussionrecovery.uk
If you’ve found this website useful, please let me know, so I know that it’s worth continuing with it. Also, if you have anything you’d like to contribute – your own thoughts and experiences or any resources that have helped you – please contact me and I’ll add them here. I want this website to be a good resource and welcome any ideas for improving it. Also feel free to just get in touch for the hell of it. Recovering from a concussion can be very isolating.
I did not create this website to make money. However, it has taken some time and effort, both of which are precious commodities when you have a brain injury. So if you’d like to make a donation to the website’s ongoing maintenance, you can do so here, and I will appreciate it:
If you would like to donate but don’t wish to do so via Paypal, contact me and we’ll arrange another method.
My concussion
I’m a keen hillwalker and usually have no trouble navigating rough terrain. However, one morning in the autumn of 2020, I was out walking on rocks by the shore where I live. It was wet, I was a bit tired and inattentive, and I slipped and fell, bouncing the right side of my head off the rocks. I sat up feeling a bit dazed but I thought I’d got away with it and walked slowly to a friend’s house to get a pack of frozen peas to put on my growing lump. A few hours later I felt sick and saw my GP who checked me over and said I seemed okay. She told me to not be alone for 48 hours, to ring them if I started vomiting, and reassured me I’d probably be fine in a few weeks.
I didn’t vomit but had frequent nausea, heavy-headedness, and terrible short-term memory and concentration. After two weeks it wasn’t much better and after four weeks a rehabilitation medicine consultant told my GP that it sounded like post-concussion syndrome. I didn’t know what this was and researched it only enough to find out that it was a slow recovery from concussion which happens to about 20%-30% of concussion sufferers (Long Concussion, you could call it). Apparently it’s most likely to occur in those who are female, older (especially over 40 – I know, that’s not that old), have had previous head injuries and/or a history of mental health problems, ADHD, seizures, etc. Being a woman in her forties with a previous head injury and being bit of a stress monkey, I suppose I fit the bill.
I didn’t do any more research then as my concentration and retention were poor and I felt sick when reading screens. I wish I had, however, as there are things I wish I’d known sooner, such as the importance of exercise (especially in the early days), of taking care of other concurrent injuries, and of therapies which can help.
It took a further two months to see the consultant and then it was only online, this being the period of NHS Covid ‘demobilisation’ (genius idea). He realised I had inner ear damage as well and, when my nausea got worse a few months later, I was referred to a vestibular physiotherapist to get a precise diagnosis and rehabilitation exercises. My GP had to go to some effort to chase up my referral and, upon discovering I would have to wait two years to see the physio on the NHS, the physio offered to see me privately. This was a game-changer. She figured out the problem and gave me daily exercises to force my brain to adapt to the damage. Within weeks I could see an improvement and within six months I had very little eye movement-induced nausea. So despite being very late starting the physio, thankfully I seem to have adapted sufficiently.
My post-concussion syndrome is not resolving as quickly. Most of my symptoms have been improving steadily, if slowly, and my memory and concentration are better than they were. However, at the time of writing, it’s been over three years since the concussion and I still have poor mental stamina and memory and some nausea. As such, I’m not yet able to resume my pre-injury lifestyle of gigging and teaching, work regularly or cope with big groups of people or background noise (no pubs or parties then).
On the plus side, my experiences have rekindled my interest in neuropsychology, the brain and healing (I have an honours degree in psychology from Edinburgh University). As a result, I’ve recently found some treatments which have significantly improved all my symptoms, giving me renewed mental strength and a sense of re-connection after two years of feeling disconnected and detached. I also now have more confidence that I will continue to recover. Onward and upward….
I occasionally write about my experiences with post-concussion syndrome in my blog (notes on a head injury, waves, abroad) and I wrote this article about getting back to hillwalking as part of my recovery: ‘Stone’ – Scottish Mountaineering Press
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