Post concussion syndrome

[sbs15]

I had a fall off a ladder in late 2019, had a CT scan in the hospital, was told to rest but after days of feeling dizzy, nauseous, lacking energy and being not myself, went back and was told I likely had post concussion syndrome. As time went on I noticed my anxiety levels were much higher, I felt generally unsettled, more emotional and the healing process seemed like 3 steps forward/2 steps back, in that it didn't feel linear. I would think I'm feeling better, do something marginally physical e.g. a bit of DIY, and then it would feel like I was almost back to square one for a few days after that. It was a deeply unpleasant experience with the worst part not knowing how long it would take to resolve/if it would resolve.

It took nearly 3 months for me to get 95% of the way there and about 6 months for the remaining 5% (I was ok to work during that last 5% but definitely felt more "settled"/calmer as time went on). That might seem a long time but I guess everyone and every injury is different, with a lot of people seemingly reporting significantly faster recoveries.

I'm posting this to try and help anyone else who is going through something similar. These things helped me personally:

1. Every GP/neurologist told me it would heal in due course but as time went on I started to doubt this. But they were right and after almost 3 months of thinking I was improving and constantly going downhill again, I started experiencing a return to what felt like normality. Should say that after that initial 3 months, that last bit of the healing process DID feel more linear.

2. Avoid or minimise mobile phones, computers and tv for as long as possible, they seem to put a lot of stress on the brain (I didn't do this initially as hadn't been given/cannot recall receiving this advice). Phones were the worst for me, followed by the computer, loud/action films on tv were a no-no too.

3. I had cranial osteopathy on my head about a week after the accident. That got rid of the dizzy/unstable feeling I had but didn't help with any of the other symptoms.

4. I started doing meditation for the first time on a daily basis after being recommended it and found it to be invaluable. For me it feels like this had the most positive effect, especially when I felt anxious, skittish or could tell I was going back into a slump. I used an app called Sanctuary but there must be loads of good ones out there. Start with the beginner meditations, as time went on I got into it more and getting into that relaxed/switched off state whilst still being awake became natural plus seemed to provide me some relief.

5. After 2-3 months I started doing very light exercise. By that I mean a short walk every other day or two. Looking back at it now it's scary how this affected me physically but it was encouraging to see how I was able to walk further as time went on (initially it was literally about 20 metres before my body started making me feel it was a bad idea). Once I did start walking, the progress with distances was reasonably fast but it felt like I shouldn't push it too hard so I upped it slowly.

6. If possible, take time off work and stay at home doing NOTHING. Most people think concussion is something that heals after a week or two and probably won't have heard of post concussion syndrome or really understand how it affects people. I found a PDF online which explained the symptoms and sent it to my employer. I needed nearly 3 months off work, there's no way I could have done the daily commute or got through 8 hours of work before then. My body told me when the time was right. That was the biggest external stress factor for me and possibly contributed to feeling worse with the worry, knowing I may not have an income/be able to pay the bills. Hopefully you can get sick leave, or support from family or maybe the council if you need extended time off.

7. I was obsessing over vitamins etc, thinking there was something my body was lacking and this was the causing my symptoms to hang around. In my case it was possibly me being over-analytical and brought on by health anxiety, which in all honesty I probably had a bit of already before my accident. The neurologist I saw said my brain was fine after an MRI, it just needed time to slowly recover and told me the list of vitamins I eagerly showed him wasn't likely to help. Maybe there's stuff you can take to help with your body's physiological side generally but I personally think the greatest healer for me was minimising all stresses on the brain for as long as possible - reduced physical activity, socialising, noise, artificial lights, music, device displays, gaming, no going on holiday, no big life events etc.

Anyway, that was my experience. If you have PCS I wish you a speedy recovery and hope that you can keep positive (I failed at the latter!). It's really unpleasant at times but all the medical people I spoke to during that period said it would resolve itself and it DID!.

[PointOfFact]

This is good advice.

I’m three years in and regret not taking things easier. I feel that I’m not getting much better, or going to get better and regret that I should have done more to minimise the impact “normal” activity was having on my recovery.

[sbs15 in reply to PointOfFact]

Hope you feel better soon PointOfFact. I too had the tightening sensation in the back of my head as you mentioned in one of your posts, most commonly when I was on my computer and feeling the stress from work, such as presenting in a meeting. Also had stiffness in my neck, shoulders and upper back for a very long time.

Forgot to say in my post that I had acupuncture too. At first it didn't seem to do anything as she was focusing on my anxiety symptoms but then the acupuncturist did some research into PCS and started putting needles in other places including some points in my scalp. That was about the time I started to feel better but I can't with any certainty put the improvement down to that, it could have been coincidence. The neck stiffness then went away after a session with my osteopath who focused there rather than on my back. Before then, I did find that massaging my neck myself helped a bit but only temporarily. I had a MRI on my neck as well, maybe worth exploring if you haven't already.

[Leaf100]

Hi sbs15,That's good advice for newly injured people.

It's also a great reminder that recovery is possible for some.

Thanks for sharing your story.

Leaf

[Obigeezus]

Hey sbs15 that's very sound help and advice personally never had no help or advice with my recovery there should be some sort of an after care or advice sessions for head injuries took me 3 years to get diagnosed with PCS and been living with it for a further 5 after the diagnoses it's a very hard thing to come to terms with and to live with my heart goes out to anyone who has suffered with this but wether its short or long term there is hope things either get better or manageable so anyone who is going threw this please keep your chin up and moving forward .

Hope this helps

Obi

[PointOfFact]

My injury was at the beginning of 2020. I recall a period towards the summer where I thought the symptoms had gone. Around the autumn I remember I seemed to also be okay, although I recall a bad day here and there.

However, from around that time, my symptoms have persisted. I saw an osteopath from September 2021 for around six months. This appeared to help somewhat, but I see that it was only providing temporary relief. I still have bad neck stiffness as a result of the injury.

I had 2-3 days last week when I was feeling normal. Then the crash occurred at the weekend. I started to feel a little off, then I hit the wall, perhaps the most sudden I’ve ever had it. I slept for a couple of hours and had to rest again in the evening.

Yesterday I didn’t feel good either and slept for a few hours in the evening. I hit a point where I was feeling nauseous and light headed - it does feel that if I don’t rest I will be pushing myself until I pass out. My neck is still very stiff and I woke today with backache - although this does clear quickly, so I wonder if it’s related to the condition or not.

I am going to try and get some further support - I’m not managing this well and admit that I am finding it a struggle. Just the impact of the variable nature of the condition is starting to impact my mental health.

My short term memory is now also very poor.

[Meneage]

Thanks for your post. I’m 5 months into post concussion syndrome and what you described matches my journey so closely. I’m just starting to plan my return to work but am concerned about dealing with inevitable stressful situations (I’m an NHS manager 🤦‍♀️).

[PointOfFact in reply to Meneage]

Stress very much exacerbated symptoms for me. I am now regretting not taking things easier earlier on. Perhaps those periods of 2-3 months were I was feeling better was indeed healing time and I ended up just setting myself back. Perhaps that is the risk with PCS, jumping back in when you think you are ready, but find you really aren’t.

From experience, if you think you are feeling better after a prolonged period, it may well not be the case. I’ve read of people being triggered and “relapsing” years after recovery. It may be prudent to monitor your activity and stress levels and continue to pace yourself.

The temptation is there just to get on as normal when you feel fine, but from my own experience, I would say that it might be a mistake to assume you are/have healed.

I’m currently going through the most protracted period of crashes and downtime that I have in the past three years. Some of the symptoms I’m experiencing are the same that I had in the early days and weeks, which is both disconcerting and worrying.

I’ve now reached a point where I accept that this may not get better. I’d like a prolonged period of doing as little as possible to see if it helps, but that never seems practical.

I see this now as something I absolutely need to manage better. I need to pace myself and avoid triggers, which again, is not always practical.

[Letsrock]

Hi sbs15 thank you for your thoughts as this does describe the way I feel. I have had PCS since June 2021 and never received any advice to be off work or stop using screens or watching TV until Dec last year. I started feeling the stress at work and am now off for 2 months and only getting to see neuro next week. Rest does seem to be good but then you feel there is nothing wrong and want to do something that seems to set off the dizziness and back lying down. Point of fact, sorry you are not feeling good and hope you have somebody to help you?

This does seem to affect mental health first and then you try to get dressed and go for a walk and then it affects your physical health as you try, you realise how unfit you quickly get resting trying to not move your head. Big circle that we all need help and support to push us along. Keep your brains busy like using puzzle books like crosswords, sudoko, jigsaws etc. Exercises that don't require the head to move too much or PCS exercises that make you move your eyes up and dien, side yo side 5 times repeat 2 daily and then same with head slowly.

[Nemo24]

Thank you for this. It's really helpful.

[Teazymaid]

great post 😁so pleased your doing well and yes can recall a lot of your words sue x

[Nick7766]

hi,

Really interesting post, I’m back on here ad I’ve got symptoms back 7 years in, so I go through all my old resource, books, notes, treatments, it’s a total pain as I thought it was gone, but I think it’s stress or just assuming it had gone so overdoing things.

[Sunsailor]

I'm almost two and a half years into my recovery. I actually don't think it's necessarily a good thing to rest and do nothing for too long, although I agree it's critical to avoid being too busy and/or stressed.

From what one consultant said and from what I've been reading (now I can concentrate again), the thinking on concussion recovery now is that you should stay physically and mentally active as much as possible, to keep your brain adapting, but that you should take breaks/rests/stop BEFORE you bring on your symptoms, or at least those symptoms that aren't there all the time.

So this will almost certainly mean that you have to take lots of breaks and that you can't do as much as before, and you should make sure to get plenty rest and not overdo it... but not drop out of things completely unless you need to. That's just my take on it, anyway.

[Painting-girl]

So very glad to read about someone who got the shorter textbook-style recovery, thank you for posting such a positive outcome, I'm sure it will help people reaching out to the site with new MTBI - and the good points about the effects of screen time, and using meditation apps (I used Headspace). My first concussion was over and done with in a couple of weeks, but this second one has been more complicated. But every brain injury is different, and the trajectory of healing is different for everyone.

I agree about possible neck involvement, particularly with headaches - mine were helped greatly by a concussion specialist sports physio.

I was told that we are more sensitive to stress - I think this is still the case for me. We also have an ongoing increased risk of depression which can overlap the PCS symptoms.

Exercise is a tricky one - cognitive and physical fatigue are often bi- directional, so either can wipe us out. However there's been interesting work in the States by John Leddy at Buffalo university on graded exercise - particularly for young concussed athletes, where exercise is actually prescribed - provided it doesn't exacerbate or precipitate concussion symptoms. Because I had vestibular and oculomotor problems the physio substituted a stationary bike for the treadmill protocol, so that head movement on a treadmill didn't trigger symptoms on its own.

If you do absolutely nothing there is a risk of adding deconditioning to the mix, which isn't good ( I write this realising that in trying to manage my fatigue, I have become more deconditioned than I was under my original neurologist/ physio regime, which makes it harder to deal with fatigue).

Certainly if I get a (thankfully pretty rare) bad crash, if I do nothing for a week or so, it is harder to get back to my 'normal' level of functioning again. ('Normal' - while being pretty satisfactory in terms of mental and social content - is still less than my peer group of non-concussed friends unfortunately).