A year of post concussion syndrome

[PaulScotland]

I had a cycle accident a year ago in which i incurred concussion. Now, while largely recovered I still get headachey and very tired. I wonder if I will improve further or if I am stuck with these symptoms.

[Painting-girl]

Hi Paul, yes things can improve - even though the one year mark is indeed a disappointing milestone to get through - these anniversaries are hard. Things are unrecognisably better for me now, compared to how I was at the one year mark. Everyone's brain injury is different and has a different time trajectory though.

I saw that your injury was caused by a cycling accident, have you ever been concussed before though? (My prior concussion affected my outcomes this time round.)

What input have you had from your medics? If you haven't had any support, perhaps now is the time to ask your GP for some neuro referrals. The Headway helpline ( 0808 800 2244 ) might have some useful advice on where to go with this. Possibly the most practical help I had, was from a neuropsychologist who worked in brain rehab in a local hospital trust who coached me on practical strategies to cope and improve things, based on the results of my neuropsychological tests (which had pointed out where I had difficulties). Plus I had physio from a sports physio who specialised in concussion who worked on my neck, gave me repetitive exercises to work on my oculomotor and vestibular issues from my accident, coached me on managing the fatigue, and supervised graded exercise on a stationary bike - based on John Leddy's work with concussed athletes at Buffalo University in the States (the Buffalo Treadmill Protocol)

Even so, while all this helped enormously, it's taken me quite a few years to get back to nearly normal - but I did manage to faceplant the pavement and possibly give myself a mild concussion when my first lot of symptoms were beginning to drastically improve. Which with the benefit of hindsight was a bit of a setback.

Hope you go on ok, but meanwhile do try and take regular ( hourly ) brain breaks from light, noise and screens of about ten to fifteen minutes long - it seems odd, but does help with fatigue and headaches enormously.

[PaulScotland in reply to Painting-girl]

Dear Painting-girl

Thank you very much for your prompt and really helpful reply. 🙏 You have given me encouragement and some sound advice. Here in the UK we rely on the National Health Service but unfortunately since the pandemic the waiting lists for treatment have become depressingly long so I’ve funded my own and by that I mean physio, acupuncture, etc. Again I’m ok but wake every day feeling like I’ve got jet lag or a hangover when no planes or alcohol have been involved and I’ve lost my nerve for urban cycling. I will keep your message and take on board your suggestions. Again a very big thank you, it’s very kind and thoughtful of you and much appreciated. Best wishes from Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Painting-girl in reply to PaulScotland]

Hi Paul, glad it might be of some help. I'm actually in the UK though, but had the luxury of my firm's medical insurance, which is why I went private here in England - in a very strenuous effort to get back to (my quite demanding) work - which unfortunately I didn't achieve, and had to retire early ( I'm 66 now, the accident happened when I was 60)

But if you're used to cycling, do have a look at Leddy's research - apparently raising our pulse rates too high triggers PCS symptoms, so the trick is to exercise for twenty minutes watching your pulse rate and symptoms like a hawk - and keep yourself below the pulse rate that exacerbates your symptoms - typically getting a feeling like a tight band round your head, or quite bad nausea in my case Stationary cycling is best if you have any vestibular or oculomotor symptoms, because your head doesn't move up and down as it does on a treadmill and increase PCS symptoms - the physio got me up to my max bpm without symptoms that way, by slowly edging up the pulse rate I exercised at week by week. Good for the effects of deconditioning too.

Do ring the Headway helpline in office hours for support and info too.

By the way your waking up with a jet lag/ hangover feeling is absolutely typical of mild traumatic brain injury - it's the dreaded fatigue - in my experience working on managing your fatigue helps all the other symptoms.

[Ideogram in reply to Painting-girl]

Just to say that what you mention about raising pulse rate triggering symptoms was interesting to me too thank you - I keep finding that when I'm feeling a bit better I try to exercise a bit more, then feel worse the next day (unfortunately I live surrounded by steep hills so walking without raising pulse isn't really an option!). Good to know though, thank you.

[Painting-girl in reply to Ideogram]

Oh good, I'm glad Ideogram 😊 What you're describing is a typical boom and bust pattern - which means you need to manage your fatigue levels a bit more. We pretty well all find this. One helpful strategy is that on the days that you feel better, try only doing what you would do on a 'bad day ' (i.e. not much!) Once you have a fairly stable, if boring week, of not getting worse, just choose one activity to increase by thirty minutes a week. The following week if you haven't had a 'bust' or crash just add another thirty minutes of activity. It's a bit trial and error, because what activities are particularly tiring for you are very personal. But the Idea is to gradually build up a sustainable level of activity, and to keep on going ( later on in this process I started successfully adding extra social activities and art lessons to my week). What I found hard to get my head around in the early days was that it's still ok to do a one-off something that will give you a mental boost, but might still cause you to have a bust few days , ( like a good family gathering like a wedding for instance) and the trick is to plan for this by having a couple of restful days beforehand and afterwards which does help. ( I always hated the 'afterwards' time, even if I expected it...)

On exercise, you'll find that there is a level of raised pulse rate that doesn't trigger symptoms for you, which may seem ridiculously low at the moment. The idea is to work for twenty minutes within that for anything for a week, and then try working out (walking in your case, by the sound of things) at a higher pulse rate and see if you can maintain that without symptoms for another few days - and then repeat the process by increasing each time by 5 bpm. With the proviso that if working out at the higher pulse rate brings on any PCS symptoms while you are walking / working out, that you go back to the previous level of pulse rate that didn't bring on symptoms. So the idea is to work up to your personal maximum heart rate over time (there's calculations for this online) I found that initially my pulse rate was bizarrely erratic during exercise, and this controlled process (of trying to keep within a set level that didn't cause symptoms) made it stabilise over time. Be super careful about going up to your personal max bpm though, I'd only do that if I was in a gym or being supervised by the sports concussion physio - not if I was on my own, as I've never been a sportswoman, so am not used to training as such. A cheap smart watch and a second hand static bike or cross trainer are your friends here. (Walking or running can be a problem if you have any complications like ocular motor or vestibular problems from the concussion, because of the head movement involved - because you're likely to trigger headaches and /or nausea at some point, or whatever, just from moving - going into supermarkets or large shops was a nightmare for me originally because of these )

What I'm doing here is just sharing the tips from the rather expensive coaching I received from the UK concussion specialists that I was lucky enough to be referred to on my company's medical insurance ( and I think it was luck - as not all neurologists specialise in post concussion). I realise that not everyone gets a lucky break like this for just PCS, but the ideas are so simple, and help so much. I do wish GPs were more aware of fatigue management and concussion generally. Thank heavens for Headway though!

[Ideogram in reply to Painting-girl]

This is really helpful thank you. I've had absolutely no advice like this whatsoever from my GP or neurologist so honestly no idea where to turn for any of this.

[Painting-girl in reply to Ideogram]

It's really difficult, Ideogram. The Headway helpline is helpful and informed, and it really helps to talk to someone who 'gets it' (like on here). It may also help to try and get a referral to a neuropsychologist because they have great practical strategies for coping -( mine was great) perhaps talk to Headway about how you might get a referral?

[Ideogram in reply to Painting-girl]

Thanks

[pinkvision]

Hi it will improve, Painting girl is spot on with her advice. My health authority were useless so I decided to follow advice from YouTube which suggested similar exercises Painting Girl went through and they helped so much but you got to work at it. I also came across Clark Elliott who is an artificial intelligence professor who had a concussion, his story (written in the book 'The Ghost in my Brain') inspired me to go to a neuro optometrist to help with visual issues. It solved most of my visual problems after about 2 years of wearing tinted lenses. Then I tried all sorts of cognitive training exercises and reprogrammed my brain. I also went to university to do a master's research degree in meditative techniques that help rehabilitate brain injury symptoms etc. I've pretty much solved all my issues except for spinal injury effects and a sleep disorder called narcolepsy.

So it's doable you just got to find the right things for you. It took me 7 years, so you also have to be realistic and just keep going, never give up trying.

[Painting-girl in reply to pinkvision]

Painting helped me too, because it was the only thing I could concentrate on for ages.

[WonderingWanda]

I am also a year after my bicycle accident and the headaches and hangover feel are still with me amongst others.

I learned the hard way that I can make it worse by doing too much on the days I feel rested. I was doing it all wrong and trying to do my indoor cycling at too high an effort as I had previously been such a keen rider.

I now try a daily ride in zone 1-2 of my heart rate and it gives me no ill effects at all. I sleep better and fell better for it. I will follow the advice to increase slowly over the coming months.

I have days where I feel almost “normal” but these are only after a run of several days when I have been very careful and consistent in my activities. They can lull you into an overdoing it day when it’s all back to square one!

The improvement is glacial. But it’s there. Hang on in.

[PaulScotland in reply to WonderingWanda]

Dear Wanda,

I’m very grateful for your post and your insights. I have overdone things in the gym on the bike machines far too many times but am learning to be more sensible and keep my heart rate under control. Thanks again 🙏

[Nemo24]

Think that's prob

[Nemo24]

Think that is the big question we all ask and continue to ask. Fatigue and headaches are my worst symptoms. They did improve with help from GP. Stress can worsen them though. Alot has to do with self managing them and knowing that planning gets affected when your health dips. Have a look at Headways website, lots of helpful information in there. Good luck.

[PaulScotland]

thank you Nemo24 🙏