Post Convussion Syndrome

[Muzzyfoxster]

Has anyone any advice on recovery from post concussion syndrome?Had for about eleven months since a fall where i also sustained a minor brain bleed

Any advice gratefully appreciated

[Painting-girl]

Hello Muzzy, sorry to hear that you had a concussion. Welcome to the forum though. Can I ask what your symptoms are at the moment please? And what help have you had from your GP so far?

If you haven't already, as a start, I'd try and get back in front of a neurologist who specialises in post concussion if at all possible. A neuropsychologist report is also a useful thing to have done - it's a couple of hours of testing questions where they work out what's working and what isn't so well on the brain front - they can give you practical sessions explaining why some things are more difficult to do now, and practical strategies on how to cope with the brain glitches. I went to mine privately but she did brain rehab work with a local hospital trust.

Talking to the Headway helpline in office hours is also really helpful if you haven't already.

[Muzzyfoxster in reply to Painting-girl]

Hello Painting girl , I have just competed a neurological referral via my GP. Just learnt my brain injury has healed. Currently, my symptoms are:

Tiredness on 20-30 mins physically exertion

About 30-45 mins then tire mentally on reading etc

When the above occurs i get pain in the rear of head..not sure the gp poking it last night was necessary as has indicated where it occurs

Im getting a portable chair/ walking stick to assist the above

Struggle to focus on activity for more than 30 mins

My memory has largely survived..few issues on short term..but often will recall mins later..maybe sign of healing

I play quizzes briefly and word games..anything else you can suggest pls

Hope you are faring well

No idea yet if i may/ may not return to work

If i stay like this am i entitled to PIp or other benefit?

[Painting-girl in reply to Muzzyfoxster]

I had 24/ 7 headaches originally by the way. With the huge benefit of hindsight, learning how to manage fatigue, for me helped to manage all the other symptoms. If I start overdoing things day on day (loads more capacity to do more now of course) I first get a one headache, then another, then if I'm still pushing too far the headaches just join up again and then might take me a week to get rid of. You've done well to identify your tolerance/ limits to different activities. The trick is to stop and take a ten fifteen minute 'brain break' before you reach your limit. I was told if I wanted to walk beyond my capacity, to stop halfway, eat and drink something, and break for fifteen -twenty minutes before carrying on.

Work out what you can do over a week in different activities without triggering symptoms. Stick to that and modify downwards if necessary till you can manage consistently. Work out what works best for you - either short ten- fifteen breaks every hour from light/ noise/ screens/ reading, or a half hour morning and afternoon ( I started with ten minutes every hour and eventually was able to shift to morning and afternoon breaks/ naps - I don't need these anymore, but if under pressure for any reason, I'll go back to that regime to cope - it's invaluable). Once you have a routine that is stable and that you can cope with, just increase your activity levels by extending the active time you spend by half an hour a week - keep going like this, and if you overdo things, cut back the time again. Fatigue is often bi-directional between physical and cognitive activity. Reading was particularly problematic for me, when I complained to my neuro team, that I could only read for ten minutes, the advice was to cut back to five minutes and only increase gradually - also which turned out to be great advice was to re-read old books - it is indeed a lot easier. I'm up to around at least one new novel a week now, thankfully!

Otherwise headaches can be caused by trapped nerves in your neck - a concussion specialist sports physio worked on mine ( totally different treatment to the ordinary local one I tried first) headaches also can be triggered by ocular motor and vestibular issues post concussion, or autonomic nervous system issues where we get problems with our pulse rate going high. Look up the work John Leddy does in Buffalo University with young athletes. The trick is to exercise within a pulse rate level that does not exacerbate any post concussion symptoms like headaches or nausea. Find your symptom-free pulse rate level ( usually surprisingly low) and increase your level of work by about 10bpm every couple of days - cutting back to the symptom free level temporarily if you go too far. Only do this for twenty minutes a day - look up the Leddy Buffalo treadmill protocol

Don't beat up on yourself, the visible brain injury bleed may have cleared up on the CT and MRI scans, but you will still be dealing with physical brain effects that only show up under specialist scans like fMRI in research settings. These issues have only really showed up in relatively recent research since about 2014 with improved technology.

The trick is to not to exacerbate symptoms if you can help, and to build up all cognitive and physical activity gradually.

I went over the three year mark on PCS - I have adapted to what I manage, but am coping with so much more now than even a couple of years ago - so gradual improvement can keep on happening. My memory is loads better, but the way to support this is to consistently use aids like desk diaries, phone calendars and alarm reminders. Alexa is jolly useful for this!

Hope this helps

[cat3]

Hi Muzzy. Depending on the injury site and the seriousness of the injury, PCS can linger on for weeks, months or, more rarely, years. And your bleed may have complicated things further.

Most of us here have lifelong issues from our different brain injuries as the brain is much more complex and delicate than any other organ, so treatment is far less straightforward. It's often more a matter of adjusting lifestyle and expectations than getting our old selves back.

But, as Painting-girl suggests, there's help to be had.

I suggest you ask your doctor for a referral as soon as possible to allow for the long waiting lists. A neurologist can help with understanding, and coping with new issues such as fatigue, balance, memory (and any other).

But, lastly, your PCS might gradually resolve itself, with more time. There are no precedents for timeframes ; everyone is unique, as is their injury.

Get a referral anyway ; just in case....

Best wishes, Cat. x

[Muzzyfoxster in reply to cat3]

Thanks for the advice Cat and Painting-girl. The good news is have had it confirmed that the brain injury has healed. Have completed a neurological referral via my GP.

My major concern now is keeping active but not aggravating the CPS, to enable it to heal. I guess I am lucky that the brain injury had only a limited impact on my memory etc. which i believe may heal in time?

Im fighting the physical fatigue. Have just ordered a mobile portable seat/walking stick as im finding can walk just about a mile with breaks currently.

[Muzzyfoxster in reply to cat3]

Hi Cat..i did think it had cleared up around the end of May..but think in hindsight just the brain injury had healed..tried to go back to work twice..in June and September but found focussing imposdible and both times had to end work within a week of starting .

[cat3 in reply to Muzzyfoxster]

Yes it's often a case of one step forward ...then 2 or 3 back !

We know it's important to keep things in perspective, according to ability, but sometimes the frustration of things starting to slide can lead to us taking on implausible goals leading to exhaustion and depression.

It seems you've clued yourself up on the strategy of little & often exertion. Exercise is vital for physical and mental wellbeing, and testing boundaries is healthy so long as you avoid pushing too hard too often !

Your injury is relatively recent in brain terms, so keep up the exercise and brain training, and talk with the Headway team about eligibility for benefits. You can reach them on freephone 0808 800 2244 during office hours... x

[cat3 in reply to cat3]

ps.. The 'Benefits and Work' website is good for information and advice on claiming PIP etc.. x

[Leaf100]

Hi MuzzyfoxsterI was diagnosed with PCS about 15 years ago, well first it was concussion and the old school gp said 6 months, then it became PCS after I got a referral to a neuropsychiayrist.

There were no indications of anything being amiss on an MRI..but I couldn't walk well, parts of me didn't work, I had massive headaches non stop, felt like I was literally in flames sometimes, had issues with speaking - both mechanically and word finding, and few other things.

If you have the money and are near somewhere where it is possible that has a good reputation, I would try a brain rehab place. Ask Headway about them and what is available through the NHS. I live in Canada and the brain injury rehab available through universal medical coverage is not great. There is a massive shortage of specialists, and some have set up private clinics because if the demand and the fact that sports teams will pay. The tricky part is knwing what and how much to do. I couldn't travel at the beginning and so couldn't get to one, but if I had known at the time what I know now and it were possible, I would have done something to get the money or at least done what I could afford.

You don't sound at all as far gone as I was in the beginning so that's a good sign, though one never knows.

I one on a disability pension back then and have not been been to work at anything. Even with all the Coping strategies I have learned and tried I still.have disrupted sleep, fatigue easily, and don't multitask well.

So, the answer is no one knows.how.long or exactly what because everyone is different.

I can tell you that healing happens relatively fast the first 2 or 3 years and that sleep happens during sleep. So, sleep as.much as you can. Do not consume caffeine - coffee,tea, chocolate -.they don't help. Do get a good quality fat - the brain is mostly fat. Hemp hearts are good, assuming you have them there - they have the right omega 3 balance for heart health. (No hemp and the other thing are not the same...they make rope , paper, and livestock feed, out of hemp, for instance.) Bone broth is also good, eating unflavored gelatin. Eat healthily. Get fresh air. Gentle exercise. Sleep. I know I said that already - forget the sleep hygiene idea and listen to your brain- if it's tired, sleep. Plan on a nap every afternoon.

Get a referral to a neuropsychiatrist because you will need someone like that to help you with work and also benefit claims because you will need that soon most likely and if you sont you were prepared. Ask headway and let them know it's time sensitive. A neuropsychiatrist has studied the brain and is also a psychiatrist and has the clout with insurance etc. Bi diagnosis can be by observation, not just by physical test like MRI. They can also say your issue is not psychiatric and you likely will need that as many insurance companies try to say that because then they tell you to take pills.and get back to work, and if you can't they may try to say you are malingering when you are not. Anyway, benefits need a doc being you to get anywhere and that's the one you want since they neurologist says the bleed part has healed. (Some damage may be really small and it doesn't show on the tests they have.)

You have to cover your bases.

Oh, I will also mention your brain is like a factory that had 100 employees and 75 of them left -the other 25 are doing their best. No procedure manuals, and they have to figure it out as they go. They have a preference for the job they know. This is why some days some things will work and other days not. Be kind to yourself. It's much nicer to work in a factory with a grateful and cooperative boss than one that criticizes when you are flat out.

I will also mention that reading is a skill that takes a lot of workers. So is talking on the phone and watching TV. So, none of them count as resting. Resting is actually talking a nap or sitting still doing nothing with lights off or low. You will have to educate your family and yourself that sitting still doing nothing is actually a needed activity for you, and you actually are busy when you are doing it - healing.

Anyway hope some of that helps.

Oh, try eating frozen fruit when you have a headache and see if it helps.

You can also try asking Headway if they have some sort of myofascial injections/ sugar injections...I don't know what they call them there.. basically a sore spot is identified and ab injections of sugar water is done - often many in one treatment session - as they found it effective to inject something into painful areas - the thing is the injection itself more that the substance being injected - somehow it resets the area. I had several sessions of that , and it was the only thing that helped some headaches. It's well accepted here in Canada and available through the pain clinic and some other specialty clinics and is covered by the medical plan with a referral by a doc.

I have likely already overwhelmed you !

Keep us posted.

Leaf

[WonderingWanda]

there have been some really great answers from Painting Girl and Leaf. I learn a lot from the people on here.

To be told “your brain injury has healed” because the bleed itself is no longer visible is risible. Unfortunately it shows the lack of understanding from so many health workers! It’s actually not helpful or reassuring since the inference is that you should a) be pleased and b) be asymptomatic!! Since this is not the case you can end up thinking it’s you making it up or imagining it all.

I was so grateful to be seen by someone who was honest about the difficulty was having and was able to explain why these things are linked to each other etc. I felt heard. We do need to know the truth so we can plan our life.

I am approaching a year since my injury and if I manage the fatigue all the other symptoms are like a radio on in the background that I am aware of but can ignore. However I cannot function cognitively nor multitask so work is out of the question.

Daily life quality is what I am after now. I just need to negotiate early retirement so I can move on with my new life.

I’m sure that most people will recover. But as a woman in her 50s with a history of migraines and a big set of symptoms and a high powered job, that’s not for me and I have accepted that.

Good luck with your recovery. Let us know how you get on.

Wanda

[sca2013]

You may want to do an internet search for Silvie at theconcussioncommunity.com who is conducting a free class "The 2 proven methods to drastically reduce concussion symptoms by 50% within 3 months" She is a fellow PCS Survivor who has successfully improved her quality of life post event.