I'm new here... and suffering with Post concussion... - Headway

Headway
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I'm new here... and suffering with Post concussion syndrome

headhurt
headhurt
37 Replies

I'm two weeks into post concussion syndrome. Struggling to be honest, any advice on how to recover but also get on with things?

37 Replies
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pinkvision

Hi, from experience I'd say do nothing at all except sleep and rest, wait for all the symptoms to manifest. Then you will find out what you have got all round. I'd say take 3 months to start with. If you try to fight it it will get worse. Good luck keep posting, plenty people here with experience, PCS is complicated and various.

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headhurt
headhurt
in reply to pinkvision

Hi,

Thanks for replying so quickly. When you say take 3 months. Do you mean take off work? What can I do in those 3 months? Two weeks in I'm getting down over not been able to do a lot already.

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pinkvision
pinkvision
in reply to headhurt

Do you feel well enough to go to work? what are your symptoms at present?

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headhurt
headhurt
in reply to pinkvision

Hi, not ready to go back to work and I have initially being signed off for another week. I don't expect to be able to go back soon that's for sure. This is all new to me but im not recovering quickly that's for sure and I scared of doing too much too soon. Equally, I want to try things to help recovery. Symptoms are headaches, fatigue, insomnia, dizziness mostly in the morning and anxiety when in prolonged conversations.

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pinkvision
pinkvision
in reply to headhurt

Ok mate that is not mild, you better prepare yourself for a possible total life changing experience. Don't get me wrong you may recover in a few months or you may never recover at all. I think if you look after yourself you could recover but may have issues that you need to be aware of and you have to adapt. I wish someone had given it to me straight at the beginning that's why I'm saying this. Feebie8 is spot on in everything. No TV, stay away from lights, noise, basically everything and just sleep. Your brain is the same as the rest of your body, it is programmed to repair as best it can. Get down to your GP and get referred to a neurologist and more importantly a neuro-psychologist asap. You'll have to wait a long time so get on the list now and if you recover you can cancel the referrals. It's really important to do this.

Another important thing is to stay in touch with this site, just write anything you want, everyone has had a wide variety of experiences and someone will have an answer or suggest ways to help. This site is probably the most informed all round, it's an important resource.

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Feebie8

Yea...I don't believe you can just get on with things...getting on with things implies you are still "ok" and who you are "normally"...PCS takes that away from you. I agree with pink vision. Take time off work, if I had to do this again I'd start with taking a month off then take stock of symptoms and assess it from there (if you can, my cognitive issues left me completely unable to recognise or acknowledge my injury). Rest, rest rest for a few weeks avoiding what aggravates symptoms then slowly dip your toe back into the world outside. The biggest mistake I made was ignoring it and trying my best to get on with things. A year later after vestibular physio and new glasses (part of behavioural optometry - vision therapy) I'm still struggling. I don't believe it gets easier...I've just gradually got "better" than what I was.

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headhurt
headhurt
in reply to Feebie8

Hi Feebie8,

Appreciate your response. A lot of people are talking about resting, but Im struggling to understand what that means. Does it mean just not going to work? or no reading, no TV, no computer time, no exercise? Is there any advice about what activities are advised in the resting period?

Thanks again for responding so quickly.

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Feebie8
Feebie8
in reply to headhurt

Basically everything you say there I'm afraid. What are your symptoms? Is your GP knowledgeable about brain injuries? What treatment are you receiving?

Every brain injury is different so how I suffer you may not. I'm headaches, light/noise sensitivity, balance problems, anxiety and depression, vision problems, cognitive slowness, memory problems, sleep disturbance, I'm getting anger issues again...it all makes life overwhelming. I couldn't read because of the headaches, blurring vision, words jumping, my eyeballs flicking and not comprehending what I was reading, I couldn't go out because light/noise sensitivity was aggravated by people, traffic. I had to stop training because even bending down aggravated my symptoms terribly...there's so much that has been affected but hey if you can read then read but take it one page at a time and stop if symptoms are aggravated.

Don't go to work. If you have vision issues, light sensitivity balance issues etc you are going to aggravate everything by trying to live your normal life.

If you can recognise what aggravates your symptoms write it down so you can identify what you can and can't do without too much bother. Trial and error is the only way and it will cause you a lot of issues so go slowly, I'd take the first few weeks to literally do nothing though. I became a fan of staring at the wall eventually (staring at the tv was overwhelming) and it was a little bit of peace through the chaos.

You need to let your brain rest and heal. Your brain is involved in everything your body does that means thinking, moving and even the physiological, automatic things that you don't realise you are doing. It's a lot! Adding in the extra stress of brain injury will overload the simplest of things in your body putting you under immense mental and physical pressure and trying to do things your brain isn't ready to do will extend your recovery period.

I'm sorry I got distracted and I've forgot where I was going... 🙄

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headhurt
headhurt
in reply to Feebie8

Thanks Feebie8,

More staring at the wall it is then. Going to take your advise and log off for the rest of the day.

Thanks again,

Matthew

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cat3

Headhurt, it's literally a testing time...……. as in taking a break from work, resting as much as possible and testing out your limits gradually/gently. Depending on the extent of injury your recovery could be quick or it could take many months ; it really is a 'Watch & Wait' situation.

Keep yourself well hydrated (preferably with water) and take regular light exercise such as walking. Eat healthily, and don't push too hard trying to get back to normal ; overstretching your capabilities will only set your progress back.

Any activity, whether exercising, doing chores, social media, tv etc., is fine up to the point where you're tired ; then it's time to rest. Listening to music is probably the most therapeutic.

Sorry to sound negative but the more seriously you take your recovery the sooner and surer your recovery will be. Good luck and all best wishes.

Cat x

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headhurt
headhurt
in reply to cat3

Hi Cat3,

Thanks for replying to my post. The activities you have described are essentially what I'm doing at the moment, so that's reassuring. Thanks for the advice.

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cat3
cat3
in reply to headhurt

You're so welcome ! Take care...x

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sethbovey

Hi there. As said above, every injury is different. I was told to go out walking as soon as I could. So I did. Every day for hours. I didn't work for six months and when I did I worked reduced hours (and still do). Otherwise I couldnt drive for 6 weeks. That was the only thing I was told not to do. I slept really well but lost a fair bit of weight as off food a bit. I have always been sensitive to lights and noise, so all that was amplified and I often had to get out of "closed" stuffy rooms.

That was 16 Mmonths ago. I am so much better now but not 100%. There is nothing I cannot do though.

Good luck

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headhurt
headhurt
in reply to sethbovey

Thank you for sharing your story

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sospan

Your fatigue and advice to rest goes hand in hand but not how your would expect.

Any "brain damage" can't be repaired. Once it is damaged, it is gone. The only thing that can heal is any internal bruising which like a deep bruise on a bone can take a long time to ease.

However, as we know the brain itself is quite smart and as you probably know we only use a small part of our brain capacity. This is quite usefu, as the brain recognises there are some problems and re-routes itself around the problem areas and develops new pathways.

Essentially you have road works in your head - keeping the traffic flowing whilst trying to resurface the road. We all know what chaos that causes.

So this is why you get tired and confused. Your brain cycles are being used up in the re-routing process. This is where the advice to "mentally" rest comes in, the more you tax your brain the less opportunity it has to repair.

With all the behind the scenes activity the brain needs fuelling to keep up the work. The main source of fuel - protein. The old saying "fish for brains" is so accurate. Any good source of protein pork, chicken, fish is excellent fuel.

Sleep is important because it is only when we sleep, do long term memories form. This is another aspect of why people with a BI suffer memory problems.

This is a little snippet of information to start you off.

All the best

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headhurt
headhurt
in reply to sospan

Thank you. I really appreciate your message

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Sapper1965

Hi There..Just read your post and all the replies and words of advice that you have had from all the other forum users. First off just to say sorry about your head injury, and as previously intimated by all the other members ,just take one day at a time , and try and relax your body and mind if possible. Worrying about work or other life circumstances will only delay your recovery..

I had a bad fall at work about nineteen months ago and was diagnosed with PCS after three months. I was then on sick leave for six months and went back to work on a phased return for a further three months or so. I continue to have most of the symptoms that you are describing as well as some more ,but have learned the hard way about the importance of having to adapt to my present Physical and Psychological symptoms..

Knowledge is the key thing here, learn from others in similar circumstances to yourself, engage with all relevant professionals to get the optimum care to enhance your recovery .

Time ,patience and support from family and friends can make all the difference in your recovery and well-being.

Hopefully you will come out of this with out any major long term issues, but if how ever there are lasting deficits to your health then all of the previous advice you have been given will prove to be invaluable to aid your recovery and focus for the future

Best regards

Mick

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headinjuryhypo

In all these replies I'm surprised nobody's mentioned the possibility of pituitary damage, which can cause dizziness, fatigue and depression. Your pituitary is a small fragile gland dangling from the underside of the brain, just behind your nose. The risk of damaging it after serious head injury is 1 in 5, and there is research that suggests that the risk may not be much less after concussion. Read the British Neurotrauma Group's guidance on post-traumatic hypopituitarism . . jnnp.bmj.com/content/88/11/971 This paper gives the list of blood tests you should ask for. Your symptoms may be caused by your body's inability to manufacture the hormones you need, and if you're diagnosed these hormones can be replaced on a regular basis, and you may feel as if you've got your life back. I wish you the best of luck.

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headhurt

Thank you for mentioning this. It has crossed my mind after reading the headway advice. I have already got blood tests scheduled, so we will see what happens there. Thanks again

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headinjuryhypo

I'm glad you've got the blood tests scheduled. Do provide an update when the time comes!

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headhurt

Bloods are normal and 4 weeks after the accident I am feeling in a much better place. Still not great though. Insomnia has gone away. Struggling with screen time, mild headaches and still a bit tired but only needing 30-60 minute nap after lunch. Walks are definitely making me feel good.

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headinjuryhypo

I'm so glad you are feeling better. All the best for continued improvement!

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devonsurfer

Sorry, I just read this after I posted- I'm glad you are feeling better. I feel more positive most of the time, but I have a job that I have to 'think' alot for, and I'm so nervous I won't be able to be like usual, but there will be alot of pressure from returning to work to be 'fine' again- I have an hour commute each way too. If you are back at work, how have you been getting on? Thank you :)

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headhurt

I have been dipping into work from home to keep an eye on what's going on, but definitely not back at work. I think you have hit the nail on the head. Dont go back until your are fine. Returning to work too early will delay your recovery. When you do go back are you looking at a phased returned?

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devonsurfer

Thanks Headhurt- I’ve been wfh for the last few days, it hasn’t gone too awfully, my concentration span is about 30 seconds long though. Is yours any improved when you’re working at the moment? I wasn’t looking at a phased return, I was just hoping to go back as normal but as the day approaches I worry I’ve been a bit too hasty. I’ve found it a very difficult choice to make, especially as I am quite new to my job.

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headhurt

I would really encourage you to call the helpline 0808 800 2244. It sounds like you are trying to get back to work, which I respect, but that may delay your recovery and impact your performance at work. Right really need a nap now.

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headhurt
headhurt
in reply to headhurt

Hi Devonsurfer,

How are you getting on today? I've being feeling a bit better and at times I feel like a fraud not going to work but then I'll have a bad patch and realise that I'm still not well and do need to take it easy. Managed to do I but more today but I'm scheduling regular breaks so not to over do it. I'm trying to string a few days of being 'good' before considering returning to work on a phased return. Did you manage to contact the helpline?

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cakes58

I would like to add something that helped me during the first few weeks/months was mediation. It reduced the fullness feeling in the head and helped me feel less anxious. You can get some apps for free for a week or if looking at screens inflame your symptoms then sit or lay down eyes open or closed and follow the breath. Put your attention on how the breath moves into and out of the body. Allow a natural nasal breath, in and out through your nose. If your mind strays bring it back to the breath. I used to do this sitting in the park.

Good mediation apps are headspace, calm. Also yoga international 14 days free and you can do their mediations.

Good luck!

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Warmbeetroot

Hi,

Rest is a tough one to accept, especially if you are a self helper or Type A person. I don't usually walk but in the end I found walking a huuuuuge rest. Hours of random walks in green outdoors.

Other tips;

- listen to humour on radio/podcasts, keep light hearted and positive

- read info like post concussion manual and these forums, gain as much insight without scare mongering yourself. Knowledge creates understanding. Like mindedness makes it easier.

- meditation

- high good fat content nutrition

- hydration

- ring headway support for same as above

I made huge mistakes of working too soon, just wasn't that insightful. Everyone is different but you truly truly need to listen to the symptoms and the more honest clued up ones around you.

Best of resting luck!

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sethbovey

Yes! I forgot to mention breathing. I sometimes feel odd or faint and measured deep breathing gets me out of a difficult situation

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cirrus

Late to the thread sorry. Hope you are feeling not too bad Headhurt, and are not straring at the wall. It is a tough time.

My advice like others, is to stop thinking about achievements or goals. It can be hard to switch that habit off but the quicker you can, the better you will recover and/or learn to adapt etc.

Also to cut down on choosing and decision making wherever you can. Simple food and routine. Write things down. I think that we recover better the less we try to force it. The roadworks analogy is a good one.

Take time between tasks. Sleep a lot. Take naps.

Walking or being outdoors is fantastc therapy. I would be outdoors all the time if I could. Just watching birds and naure, or sitting looking out the window. Gardening is great too. Can be simple weeding. If you hve a garden.. I don't now.. :( But I have some indoor plants which are in my general eyeline when on the sofa etc, and I find these really soothing. Makes a huge difference to my wellbeing. More than I thought it would and I already knew I loved plants. They are really great for indoor air quality too which can also help with headaches etc.

Listening to music, I listne to classical mainly, but nothing too complcaited or jauntry or it can be tiring! or nature sounds.

Eventually maybe do jigsaws if you like them, but the key with jigsaws for PCS is not to try too hard to complete them, dont be in a rush to achieve or do too much at a time. Just sort of dreamily look at the pictures and let it happne. Nice simple ones with big pieces.

Find a box set maybe and watch one every day for the routine. I did all of Inspector Morse then Lewis, but whatever is that is your thing. I like slow TV.

I cant focus and keep up with audio books but they are soemtimes nice to listen too if i dont exepct myself to remember, same with reading.

Patience and simplicity is the key especially at the early stage. I wish you lots of healing.

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devonsurfer

Hey Headhurt

I hope you are starting to feel slightly better now. just so you know, you are not alone- just over a month ago now I got hit by my surfboard on the side of the head and it as absolutely wiped me out. I have been off work for a month (I have tried to go back 4 times, but have been super over-emotional and lack concentration). My symptoms sound like yours- headache, dizziness, problems focussing and following conversations. I have never had anything like this before (despite being concussed a few times, it has always gone away after a couple of days) and it has knocked me for six- my confidence and everything because I'm used to feeling capable and busy.

How are you feeling now? I definitely feel better than I did, but I don't feel myself yet and still have a headache every day and struggle to work from home. Have you been able to go back to work yet? I'm nervous to go back tomorrow in case the same thing happens again- my employer has been so supportive but I want to go back now, as I feel 'unjustified'in having more time off. Who knew that concussion could last this long eh!

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headhurt

Hi Devonsurfer,

I have been signed off work until late December, so essentially I am due to go back in the new year. Work have been supportive. Everything you have said above rings true. Whilst I feel better in some respects I know Im not ready to go back yet. Have you called the Headway helpline for advice?

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devonsurfer

Hi Headhurt

Thank you for replying so quickly. I’m glad they’ve been so supportive- it has made me feel so much better knowing I don’t have to worry about it.My work we’re supportive of me taking more time off, but I have been so keen to go back this week (as I have been going slowly mad at not doing anything- I’m sure you know how that feels!) I haven’t called them no, thank you , I’ve sort of felt like I just need to get on with it now and go back- did you feel anything like that?

I feel better in myself too- more energetic, but today I have a banging headache and dizziness again (which I thought had passed). It’s such a frustrating time, isn’t it.

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headhurt

That's exactly how I am at the moment. Ive been feeling more like myself in the last few days, so I thought great lets start thinking about going back to work. Today feeling quite tired and the headache is back. I would wait until you have 4-5 days feeling normal and then start to consider going back to work. It really frustrating! The way Im trying to think about it is... I want to have a speedy recovery time and the only way to do that is rest, and then slowly get back into things when I feel normal. it doesn't feel 3 steps forward and 2 steps back sometimes. I need to rest now so going for a nap.

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