Post concussion syndrome: Hi, I feel a bit of a... - Headway

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Post concussion syndrome

Will393 profile image

Hi,

I feel a bit of a fraud after reading some of the posts hear and I'd like to start by wishing everyone well.

I had 2 nasty concussions last year, and have had a few over the years. Since then I've just not been the same im more emotional less rational. Ive still got a headache and tinnitus i lost 20% of my body wieght. I've really struggled with relationships and find myself being quite impulsive sometimes as well as being unable to make my mind up on decisions. I separated from my wife and have no real friends or family near me. I dont feel myself but no-one is taking me seriously and I cant seem to deal with emotions well enough to establish any new relationships.

Im worried ill never be the same again, the ct was clear but that was taken a month after the second concussion. Does anyone else have any experience?

I think I've got post concussion syndrome has anyone had similar and recovered fully?

Thank you Will

31 Replies

Hi. I can't help myself, but I can highly recommend calling the Headway helpline on 0808 800 2244. Their website is good too. They have helped me enormously since my brain injury five years ago, in fact I only found out that I had a brain injury through them, not the doctors! They will have all the information and advice you need, plus they are really supportive. I wish you all the best.

🙂🌸

Hi Will,

You're not a fraud at all. Last year is pretty recent too - what happened to you?

I have trouble making decisions, and with being more impulsive too. I didn't realise at the time, but my concussion triggered depression and anxiety in me, which is often part and parcel of the post concussion experience - and getting that treated by people that understand concussion really helps - because a lot of symptoms overlap with the concussion symptoms. There are treatments for the headache too.

Post concussion is jolly difficult to cope with. You can get help to get over it - and some people do.

Sometimes you also need support to handle the stuff that doesn't quite clear up. CTs and MRIs are often clear by the way.

As Marnie says, talking to Headway helps - so do try and ring them ?

J 🌸 X

I crashed my motorbike in May I was briefly knocked out, then hut my head again playing sports. I've realised when I'm stressed I used adrenaline to cope. My marriage wasn't good and I was rushing around on the bike then I was stressed because of my marriage breakdown and a stressful event at work when I hit my head playing sports 6 months later.

I shouldn't have been training but I didnt realise a lot of my symptoms over summer were concussion my family were telling me it was stress because of the divorce but when I figured it out on the second one because the knock was slight and the reaction quite big. I lost all the hearing on one ear and had proper suicidal ideation which is massively out of character. Ive never felt so bad i didnt think i was gonna get through it at one point.

Since then I've been saying and doing things I wouldn't normally and been highly highly susceptible to emotional stimulus which again is out character. People at work have noticed but are putting it down to divorce noones taking the head injury stuff into account. People who used to talk to me are avoiding me which is making the depression worse. Im thinking of moving away i thought it would make things easier but I cant make my mind up.

Im 6 months past the last hit and things are improving but its not linear. Its the emotional stuff I struggle with most I cant seem to think clearly when there are any feelings involved.

How long have you been suffering with it?

Thank you so much for responding ive felt so alone with this

Hi Will, certainly sounds like concussion / MTBI I'm afraid - from a layperson's point of view anyway. I can see you're worried about your mood swings and depression, and decision making, but if you're coping with tinnitus and a headache as well, that can't help things there either. It sounds rough.

I'm sorry about your marriage breakdown as well - that can't help either ( I've been there too, but a long time ago now).

I would try and stay put if I was you, because moving and changing jobs is going to put a lot of extra cognitive strain on you, which you don't need right now. Likewise I would stay put after a relationship break up - if at all possible. Just leave off the sports for a bit till this clears up eh?

Brain injury is weird, and at some point I think we all feel pretty alone, it must feel really tough for you at the moment. This forum is a huge help and I certainly wish I'd found it sooner.

What medical input have you had so far? The sooner you get some support and rehab in place, the better really. Headway can help with an informed listening ear, and some advice on where/ who to get referred to. Neuropsychologists are usually good - they can do cognitive testing to work out what you might be having difficulty with, and can provide psychology appointments to coach you on coping strategies. I found mine to be very helpful indeed - good support and insights.

It's good the CT was clear at least. My MRI was as well. What doesn't show up on scans ( except the fancy FMRI research ones for example) is the disturbance to the white matter in the brain after a MTBI. Every brain injury is different, and takes a different trajectory and timescale. Six months is still decently early on ( though I appreciate it won't feel like it from your point of view) so you have some good recovery time ahead of you. (I had 24/7 headache with migraine-like add-ons every couple of days at that point).

Unfortunately, although I'm on a fairly even keel now, and largely headache: free, I've basically been left with chronic fatigue to manage, I'm two and a half years down the line from the last concussion - but like I said, everyone really is different. Plus I was totally chuffed last week to find I can suddenly write down phone numbers ok now - which I really couldn't do before - it's a silly thing, but a nice bit of improvement in my working memory all the same 😊.

Keep talking and posting - lots of useful insights come from people here too 😊

Jen 🌸

Reading through your reply and the phone number bit stopped me in my tracks. I can’t get my head around doing that! I’m all over the place having to write things down, especially a number!! I didn’t even associate that with my head injury. You still learn things no matter how long ago your injury was, mine was just over 2 years. Thank you 🙏 x

Hello forty-something , so glad it was useful to you 😊. There's so many little things like that I've picked up from other people here too, that make me feel sort of normal and reassured, that I wouldn't ever think to explain to anyone who hasn't had a brain injury - I usually just say 'chronic fatigue'... Mine will be three years in July since the TBI - so similar to you I guess?

Funnily enough I was talking to the neuropsychologist about it on Wednesday ( my penultimate appointment - I'll have been seeing her for just under a year - she's been brilliant on the fatigue front - we only agreed to extend it a little because of some other stuff I've had going on). The neuropsychological tests the neurologist sent me off for six months after my accident, showed up that I have working memory problems. I have awful trouble making decisions ( I think either it was worse originally, or I'm learning to handle it more now - but every so often it catches me out quite badly) and having someone tell me a phone number (or even trying to copy it) to write down was a nightmare. Crossing the road was really hard early on too.

What's been happening to you?

It's very reassuring to find that things do carry on changing even if it's in mini steps - this feels like a big win actually anyway! 😊👍 x

Yes similar time frame, was 2 years mid December. I already have fibromyalgia so all of those symptoms have increased tenfold. The fatigue is unreal, u really can’t explain it to anyone can u. The memory issues too, makes u feel ancient doesn’t it. My anxiety is through the roof, same with the depression. Irritability, can’t think straight, say the wrong thing, can’t make a decision, so many issues. Take each day as it comes tho, all we can do. Enjoy the good days x

Must be awful having it on top of fibromyalgia - that's really not fair...How were you coping with your fatigue before the BI? Have you had any extra medical help since your BI? Totally agree on the ageing thing X

It’s always been up and down, have good times and bad. The winter months are always the hardest with fibromyalgia anyway. But it’s increased badly for the past two years, I can sleep 19+ hours easily and it can go on for weeks like that. It’s been hard to see which problem is from which thing. X

Yes, it must be really difficult - it sounds like you're not in a good place, so sorry. Have you had any joy getting to see any of the different neuro specialists yet - or had any treatment for the depression and anxiety? Sounds like you might need a bit more support? X

Thank you for your concern. The GP did mention seeing a neurologist before covid came about so obviously I’ve not heard anything since. I take meds for the other stuff but it’s all part and parcel of Fibro I’m afraid. I get lots of help from my husband and children, youngest is 16 this year so thankfully old enough to understand everything, and I have a few friends with fibromyalgia so we have each other for support too. I’ll chase up the GP tho I think, to be honest I’d forgotten till you said 🙄 xx

So glad you've got lots of support around you 😊 that's really good. Certainly wouldn't hurt to find out what a neurologist says - though I found their role seemed to mainly be to refer me onto other people. For me, one of those was a neuropsychiatrist - and he was a lot better at finding a helpful drug than the neurologist was (but as we know what drugs we can tolerate varies dramatically from person to person to be fair) and he and the neuropsychologist were the best people for explaining about the fatigue from the brain injury, and how to handle it. I'm not fixed, but I'm better than I was, and better at handling everything now than I was. So I would say you have nothing to lose by following up? 😊👍 x

You really are so kind in giving me great advice. I will definitely sort this. Wishing you well 😘 xx

Hi Will

I’m sorry to hear about your situation- there’s been a lot for you to deal with. I can highly recommend contacting the Headway helpline. They understand the complexities of post concussion syndrome and can help with information and advising you where you can get help.

I’m helping my sister who has post concussion syndrome. One of her biggest issues is fatigue but what has been so challenging is getting people to take her seriously and understand how the fatigue affects her daily life. That just adds to the difficulty of the situation - so it can be a bit of a vicious circle. It certainly isn’t a linear progression.

I’m not sure moving is a good idea either - it will add a lot of additional stress which could set your recovery back.

But don’t give up - I’m sure a conversation with Headway will put you on the path to some help and support.

Good luck.

Hi Butterfly, how're things been going? I'm beginning to think that hardly anyone except the people that either have it, or work in neuro stuff, truly get fatigue - I was just talking about it again this morning to a friend. I think even I feel somehow that I could push past it with 'a bit of effort' but I so can't!! That's what leads to a crash ... I suppose we're trying to unlearn the habits of a lifetime.

I think if I hadn't had the combination of lockdown and a new neuropsychologist, I'm not sure I could have got back to anywhere near my current relatively low levels of fatigue? Still a work in progress too! x

HiYes - very much work in progress but this has been a slightly better week so far. My sister has been able to get outside more - short walks around the garden - and was able to sit outside for half an hour one afternoon- all of which have helped a lot. As a result her mood has lifted which is a plus.

So, on the straight and narrow a day at a time. Next week is going to be difficult as her good neighbours are moving. They have been very supportive both now and when her husband died. I hope the impact isn’t going to knock her back again.

Hi Butterfly, oh that's hard for her. I expect just knowing they were there helped too.

I agree, anything that helps her get outside is good. Lockdown and a lack of social contact can't be helping. At least early on I could go to a cafe even if the noise / movement was difficult.

I think you said before that her GP wouldn't engage. Has there been any movement on that front yet? What did Headway suggest as a next move?

Meanwhile, the two things that make the effects of TBI fatigue worse, are depression and de-conditioning. Taking an antidepressant might help her to gradually build up her physical activity. It was explained to me that it's basically not good for human beings not to move, and a response to TBI fatigue is to rest more, which produces a downward spiral.

I don't know whether it is financially possible, but you might be able to track down a neuropsychologist privately for help?

Jen x

HiFinally the GP is being far more supportive which is helping albeit this is outside her experience. There is a local Headway contact who I’m going to speak to again this week- the neurologist locally who does private work doesn’t really specialise in post concussion. The one who leads the neuro-rehab clinic doesn’t appear to do private work. Going to the ENT clinic really knocked my sister back she can’t face another hospital visit at the moment.

After a fairly ok week yesterday was difficult for my sister and it was mostly to do with the weather- it was too wet to get outside. Deconditioning is definitely an issue - she has been feeling the benefit of short walks. Being outside also makes her feel less isolated. A conversation with a friend yesterday also tired her - it’s funny how something like talking can be so tiring but it’s the concentration required I guess.

I just hope the steps forward we’ve made will continue this week- if we can get outside I’m sure they will.

I hope you’re having a good week.

x

Hi B,

So glad the GP is getting interested - definitely a step in the right direction.

The weather hasn't been great - hopefully we're moving towards spring now, which will help everyone I think?

I've done all but one of my (private) neuropsychologist appointments on Skype this year - which cuts down a lot of fatigue/strain involved. I found her online and went to her direct with the support of the London based psychologist my neuropsychiatrist worked with - to reduce my costs (they halved...). She's been miraculous at making me focus on managing my fatigue and getting it to the point where I've got some quality of life back. She didn't do my original neuropsychology tests and report (like doing brain training exercises really) but has used it to explain to me why some things are particularly hard for me - and so why I will get more fatigued doing them, and finding me strategies to do things I want to do, and how to manage around them or make small modifications to make them possible. She does BI rehab in a local hospital trust. Honestly, along with the emotional support from the appointments, it was a game changer for me. I think this might be because it puts me back in the driving seat of my life - instead of being the victim of the post concussion. I get to choose how I feel. ( I'm nowhere near perfect by any means, and have been struggling a bit this year since getting too tired over Christmas - but am now gradually getting back into a better/ more sustainable routine. Though on the plus side it was the first Christmas that I managed to do all the present / card/ cleaning thing on my own without help, since before my TBI - a big quality of life change😊 ).

bps.org.uk/public

is a good source to look at

Chatting is really tiring - but I noticed early on that it seems to give me a bit of a cognitive uptick afterwards. At the start of lockdown when everyone was ringing everyone else - mainly at weekends - it knocked me sideways.

My first local neurologist wasn't a concussion specialist, and was quite limited in what he could come up with, so it wasn't helpful really, except for getting an MRI and neuropsychology testing, but he did refer me to neurologist number two - who is a concussion specialist - and then things improved a lot for me.

Neurologist number one did however tell me to get a treadmill on eBay and just do 10- 20 minutes every day on it - or whatever I could manage. My mum got me a crosstrainer for free on Nextdoor - and that has also been instrumental in my recovery. So I'd recommend that - even at 60- odd!

Hope things go on alright with you and your sister - if she has trouble taking an interest in trying new things, don't be worried about trying a low dose antidepressant, they can help directly with TBI, and don't deserve their bad press.

J xx

Hi will, I’m exactly the same as you. I had a fall with a small bleed and concussion too. My scans were clear but over 2 years on I’m still not right. I told my GP I had post concussion syndrome and he agreed. I’ve changed so much, my hubby tells me I’ve changed and opposite to how I used to be. I can see it more and more as time goes on. It’s a horrible feeling and there’s nothing to help. I contacted Headway and they were very helpful, and the people on here are really a fantastic support, great at answering all those questions you feel too silly to ask. Speak to your GP but with a list of everything, look up post concussion syndrome online, and it’s surprising how many other issues you will have and not realise it’s related.Sending you best wishes and keep posting xx

Hi Will,

The injuries sound significant and the brain is a complicated piece of Mother Nature's handiwork so you'll definitely be affected.

The Brainline website as well as Headway is a good source of info. Pass some headway leaflets on to your family but if they're like mine, then they'll probably stick to their own narrative. There's a big enough community on here that will understand what you're experiencing.

Recovery is always slower than we hope and stressful events slow it down further, be gentle and patient with yourself. Some aspects of pre concussion will have been 'lost in the fire' I'm afraid but there are coping strategies aplenty out there. Make sure what goes in your mouth is good for you and rest when you have to.

As for feeling like a fraud/imposter syndrome, you can put that down to a drop in self confidence which always seems to follow a Brain Injury. I've felt that too at times when I start comparing with others but the effects are real and gaslighting myself ain't ever gonna help.

I wish you well on your new journey.

Hi Will, forgot to say last night, that there's a crossover effect with BI and depression. Sometimes the BI directly causes depression ( that disturbance in the white matter) and sometimes it's a reaction to coping with a BI.

Now there's a couple of things going on, firstly depression does cause a lot of similar symptoms to post concussion, so it is actually worth getting treated with drugs. Secondly the antidepressant SSRIs and SNRIs have been shown to 'iron out' the disturbances in the white matter in the brain, if taken for long enough - so they have an actual therapeutic effect.

Because of this borderline thing in neuro problems - neurologists or GPs will often refer you to a neuropsychiatrist because they are the specialists in how drugs affect the brain. It's really very important to realise that a referral like that isn't because anyone thinks it is 'all in your mind'. I felt really quite freaked out by it, but my neuropsychiatrist has been the most blunt with me about the effects of fatigue and so on being the effects of a brain injury - and how to best manage fatigue to get as well as you can. Hope that's helpful?

Jen 🌸

Glad to see ur here with all of us.Been there,done that 4 plus times and then some.:(

It is frustrating BUT...u gotta stay positive,make sure u have good people around u and lots of distraction tools.

Ive got all ur symptoms unfortunately.

For me..I just try to laugh as much as I can,because otherwise Id be in a ball in the corner.

I recently tryed chiropractic for my tinnitus..fyi..didnt help for me,but Ill try anything at this point.

What has helped me enormously for ALL my stuff,as Im a med disaster,LMAO..is def medical marijuana.Doesnt cure any of it,but really helps get thru the tough moments.

Best to u...

Welcome aboard :)

Thank you so much.

Ive been finding it so hard, ive tried talking to people about it but because I'm getting divorced people keep just putting the symptoms down to that.

I know its different though its hard to explain but i can tell which is expected from a difficult life experience and which is something out of character.

The reason I was thinking of moving was because I have a good friend at the destination. I dont really have anyone where I am who knows me very well. I thought maybe its be easier to recover around a familiar face.

Any further thoughts?

Has anyone heard of people taking growth hormone? I did some reading and it may help speed recovery.

Hi Will, not sure about growth hormone - I think that's when the pituitary gland is affected. If you think you might be having hormone related issues, there's no harm in seeing if your GP will do some blood tests and refer you to an endocrinologist.

Have a chat with Headway about who it would be useful to get referrals from your GP to go and see. A good appraisal by a neurologist who specialises in concussion would be a good start

I see what you mean about moving - have you no-one close by at the moment?

The only thing is, I would still counsel some caution, because the TBI and a relationship breakdown, don't really help us to make great decisions - and it would add to your cognitive load. But on the other hand,you shouldn't be dealing with this alone really. Have you got support from your family?

Jen 🌸

Hi Will,

CT scans don't show the miniscule damage caused by a concussion. They are more for showing if there are any 'large-enough-to-see' brain bleeds.

Sadly doctors often dismiss people like this but they shouldn't. No one should be dismissed after any head injury and should at least be given a follow-up appointment.

Have you ever had an specialist help or assessment?

I would say go and see your GP but often they don't take any notice! I know Headway have a great leaflet you can take with you called, 'could it be a brain injury.'

If you suspect post concussion syndrome (PCS) and can't understand why you aren't getting better there are lots of things you can do to help yourself.

I struggle with reading and understanding and know other people do. I like to know the cause behind what I am struggling with and want to understand whatever I can in a way I can relate to.

You might find this interesting - globalbia.org/understanding...

Teresa66 profile image
Teresa66 in reply to Annie-GBIA

I'm new to this site. The website you recommended is so good. Thank you :)

Annie-GBIA profile image
Annie-GBIA in reply to Teresa66

Hi Teresa, Thank you so much for the feedback!

I hope you get a lot out of the site! Give me a shout if you have any questions or need any help.

We are thrilled that the site is also being used by neuropsychologists alongside their treatment programmes!

If you find and follow me on facebook - 'Annie Ricketts' I will also be posting about a new brain injury solutions group being set up.

There will be two monthly webinars and lots of other videos to include information from many experts. We are in the process of setting this all up and there should be info on my page over the next day or so!

Teresa66 profile image
Teresa66 in reply to Annie-GBIA

Annie - I'm not that keen on Facebook, but I have joined a couple of groups on there. It sounds really interesting though - I will look you up. Thank you again

Annie-GBIA profile image
Annie-GBIA in reply to Teresa66

I'm not keen on it either, but it gives us a platform. As long as your personal settings are 'tight' you should be safe Teresa.

Which groups are you in?

Teresa66 profile image
Teresa66 in reply to Annie-GBIA

I did find you this morning - I am Tess, on there. Joe Wicks, crocheting and National Trust lol I'm a wild girl lol.It looks like you have done a tremendous amount of work - 'understatement' .

I can't believe how much I didn't and still don't know. The website is great - I did get a lot out of it!

I fell over at home in January - my doctor was aware of concussion and identified it straight away - I didn't seek medical help for a week! After 6 weeks I felt 98% and went back to work, against his advice :(

My symptoms came back and some more....accompanied by a snus infection! I now find walking difficult, headaches, neckaches and am wobbly. Find it difficult to walk and talk. I hit the front of my face on the sofa and my head left top side on the radiator - thus my neck had twisted, as I tried to avoid the radiator. I had a private CT scan - obviously didn't show anything apart from inflamed sinus's apparently. I appear fine, but after 3 months am anything but... don't really know what to do next and obviously my doctor isn't impressed because I went back to work against his advise - I won't be working for a while yet I don't think. I haven't been seen by my doctor since before the scan. He has experience of concussion from the rugby pitch...

The lack of education and publicity is criminal in this area. I feel so lucky to have found this forum . I went to your website yesterday - it is clearly set out and the information was really helpful and easy to understand. One of the best I've seen and I'm not just saying that!

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