Post Concussion Syndrome?: Hi All, I suffered a... - Headway

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Post Concussion Syndrome?

Bb1878 profile image
Bb1878

Hi All, I suffered a concussion injury 6 months ago where I banged my head and was knocked unconscious for about 3 or 4 minutes. Since then I've had (and continue to have) a host of health issues, including extreme fatigue, tinnitus, vision issues, sensitivity to light, sore eyes, dry eyes and mouth, bowel and bladder problems, sleep problems/occasional sleep apnea. I had a CT brain scan of the day after the accident which was clear. My gp has since been treating me for some of the issues e.g. ENT referral for tinnitus, optometrist referral for eye issues, various blood tests etc. I read recently about PCS (thanks to Headway) and I could instantly identify with many of the symptoms mentioned with condition. My gp has never mentioned this condition to me strangely enough. I just wondered if anybody else has suffered with this condition? And if so, for how long? And was there any additional treatment which helped at all? I've had this for 6 months now and dont seem to be getting any better at all. Whenever I think I am making progress i just seem to get knocked right back to square one a day or 2 later. I'm starting to think I'll be like this forever.

Any advice would be appreciated.

Many Thanks

38 Replies

Hi. I wasn't sure from your answer if you had called the Headway helpline. If not, do ring them, they are great for information and support. Their number is 0808 800 2244.

From my experience, (I had a brain injury 5 years ago,) very many GPs don't really know much about concussion and brain injury at all. I mean no disrespect to them, but that's my experience and the experience of others I have encountered with similar problems. Even some neurologists are limited in their knowledge. I found that I had to do my own research and rely on Headway to get anywhere.

I wish you all the best.

🙂🌸

Bb1878 profile image
Bb1878 in reply to Marnie22

Hi Marnie, thank you for your reply. Yes I have rang Headway and they were extremely helpful and informative. They have provided me with an information sheet for gp's which I am going to show to my gp and hopefully get a referral onto a neuro specialist for further tests. Your comments about gp's lack of concussion/tbi knowledge is very interesting, and does also appear to be the case for me as, given the information I now know I'd have thought my gp would have 'connected the dots' and at least raised the possibility of it being PCS, rather than treating each symptom as a separate unrelated issue. Hopefully I can get the proper support and treatment going forward. Thanks again for your comments, much appreciated.

Marnie22 profile image
Marnie22 in reply to Bb1878

Will keep my fingers crossed you get the proper help. 🙂🌸

Hello Bb,Welcome to the forum. I'm here because of concussion too. Sorry to hear about the symptoms you have.

I'm glad you've spoken to the Headway helpline - I found it was a huge relief to talk to someone that wasn't surprised by my symptoms.

Okay, a few facts for you (you may have picked these up from the Headway literature, of course - but remembering how very at sea I was at the six month point, I'm re-iterating them, because I think it helps to know you're definitely not imagining things). A concussion is a mild traumatic brain injury ( MTBI). It's worth saying that the 'Mild' part is also a bit of a misnomer, depending on how it affects you, because it basically just means it's not life threatening - the CT didn't pick up a bleed. The brain injury part is difficult to quantify, because every single brain injury is different, and has a different trajectory of recovery.

It is 'normal' to have a clear CT scan, and it's even possible to have a clear MRI, and still have all the symptoms of the MTBI. And, as you've found, they don't all magically disappear at the three month mark, or the sixth month mark, as a lot of literature on the web rather annoyingly implies!

So, that said, what can you do?

First take some steps to manage your fatigue - it's the last thing to go, and getting even a slight handle on it, is a big help on all fronts. What you're describing is a classic 'boom and bust' pattern - being knocked back to square one after a day or so. It is key to get yourself out of this pattern. Now, it's tedious, but your route out, is to work out what you do when you're having a bad day (I'm guessing not much) and don't be tempted to do more activity than that on the following days. Then, once you've kept your mental and physical activity at that low level for a week, try gradually increasing one activity by only about twenty minutes, on a two or three days a week.

Plus, take a ten minute 'brain break' from anything you are doing once an hour - set a timer on your phone, and go and lay down, in the dark and quiet for ten-fifteen minutes.

Keep a fatigue diary, of what you do during the day, and score yourself out of 10, three times a day (meal times are good) where 10 is the worst imaginable fatigue, and 1 is no fatigue at all. It helps you to spot what your patterns and triggers are - and it's a useful document to use to talk to your doctors as well..

GPs are good at identifying urgent stuff, and ruling out serious things, but aren't always great in stuff like TBI. Plus many probably trained when less was known about MTBI - there's been more understanding in research situations using new FMRI scanners in recent years. However it is legit to try to treat the individual symptoms you have, and it's one of the steps to managing your TBI.

So you do need a neurologist who specialises in MTBI / TBI - they are then able to refer you on to others for further help - often a neuropsychiatrist. Try not to freak at the 'psychiatrist' bit - simplistically, they are just the experts in the brain chemistry that goes awry after an MTBI. You'll find more stuff in my bio on here too.

Hope this helps you for a start at least.

Oh, and the best advice I had early on, was to get an exercise bike or crosstrainer on eBay or local social media, and use it everyday - gently at first and very gradually build up - but stop if you get any increase in symptoms - or any new ones like nausea - and do slightly less the following day.

The whole thing is not to do what you would do normally, and push through things - it's more likely to knock you back.

Keep posting, and let us know how you get on? 😊🌸

Bb1878 profile image
Bb1878 in reply to Painting-girl

Hi Painting-girl, thanks a lot for your reply, and for all of the very useful information you have shared with me - it's much appreciated and I will definitely be trying those techniques you mention. Its reassuring to hear from people who have been through similar experiences, makes me realise I'm not going crazy! I will post an update over the coming months, with hopefully positive news on my progress (wishful thinking maybe!) Thanks a lot and take care.

Painting-girl profile image
Painting-girl in reply to Bb1878

No, you're definitely not going crazy. Sorry it was such a long-winded post! Glad if it helped a bit though👍

You take care too, and see if you can get referred to a neurologist that specialises in MTBI ( all neurologists are not created equal).

Will be good to hear how things go 😊

Hi I also had a TBI 7 months ago, am having some of the symptoms your describing. Your dr probably doesn’t know much about it , there are a lot of things you can do for yourself to get over this , exercise , nutrition high in good fats , supplements I’m still having symptoms also but have managed to keep some of them in check. I’m new to this site and look forward to learning more. Just talking to someone who knows or cares is good ! I’ve put my wife through some stuff !

Hi Gordo, welcome to the forum too - it's really helpful to talk to others here 😊

Take care to balance out the exercise carefully - cognitive and physical fatigue are usually bidirectional, in that physical fatigue can impact cognitive fatigue and vice versa.

But it's also really important not to get de-conditioned too of course.

Have you read about Leddy's work on concussion and exercise at Buffalo university?

pubmed.ncbi.nlm.nih.gov/300...

Are you in contact with Brainline in the US as well? brainline.org/resource-dire...

Hi painting- girl , thanks for the support and info , I’m going to get on Brainline in the US. My physical condition before my injury was good I was a martial arts instructor. So I’m used to working out, I started walking a few days afterI got out of hospital and yeah was so fatigued I could barely walk or even talk on the phone for any length of time. I found that I had to eat something about every 2 hrs to keep my energy up. Also found that the more omega3 the better I felt it’s good brain food! Everyone who reads this should research Omega3 for brain health!

Hi Gordo,

That's a perfect example of both bidirectional fatigue, and the exercise intolerance that happens after concussion. As you're used to training, check out the Buffalo treadmill protocol. It's what my concussion specialist sports physio used on me post concussion - the theory is it 'resets' the autonomic nervous system. It's better known in the US than here I think. Though if you don't have exercise intolerance (concussion symptoms like nausea get worse on exercises) post concussion symptoms and headaches, can also be caused by neck( cervicogenic headaches), oculomotor, and vestibular issues.

Yes, omega 3 is good - I eat a fair amount of oily fish a week.

Have you come across the impact of BDNF on the brain? I've upped my intake of green tea.

psychologytoday.com/gb/blog...

Keep checking in here anyway, you're not the only American on this forum!

Hope you get some useful support from Brainline too.

Hi painting- girl , yes I will check out the treadmill protocol thanks, I was lucky as I didn’t have any headaches as of now. I drink green tea also , I take L Theanine supplement also it really helps with sleep and anxiety , I’ve read about BDNF , psychology today has some great info. I’m having a hard time finding a dr that knows about brain injury in my health plan . Thanks for the talk I appreciate it!

Bb1878 profile image
Bb1878 in reply to Gordo6500

Thanks Gordo6500, yes I'm going to try and gradually build up some gentle exercise, I think the issue I've been having is the boom and bust syndrome, that Marnie described above. I feel ok so and up doing too much (well what would have previously been normal activity)..then I'm useless for days after..then the cycle repeats. Im going to stop that, as I now realise my energy levels are are now like a currency that needs to be managed well and spread out more over the course of a day/week. I used to love jogging (regular 5k). I'm a little way off going back to doing that obv but hopefully by taking things one day at a time i will get me there again. Many Thanks and best wishes.

I'm almost sure you have post-traumatic hypopituitarism, see Headway's page about hormone imbalances (why they don't have joined-up thinking enough to mention it on their post concussion syndrome page I don't know). See symptoms on Pituitary Foundation website pituitary.org.uk/informatio... plus the Mayo Clinic website mayoclinic.org/diseases-con... See also our website christopherlanetrust.org.uk and this excellent website cognitivefxusa.com/blog/pos.... The best of luck in your quest for treatment!

Thanks headinjuryhypo - I will definitely have a look into this, I do have a lot of those symptoms mentioned (many of which overlap with PCS it seems). Many thanks for the information. Best wishes

Sorry, I didn't see your reply 9 days ago, computer issues. Did you manage to explore the hypopituitarism possibility?

Hi headinjuryhypo, yes I checked out those links u sent, I identified with a lot of the symptoms, as you mentioned. I spoke with my gp and asked about hypopituitarism to which he relied "that's very rare" followed by " your thyroid test was normal so it's very unlikely"... I've now been referred to a neurologist however so I will follow this up with them also. Thanks again for the info.

Sorry, I didn't see this, again. I only seem to get notifications on my upstairs computer, which I don't switch on often enough! Your GP is of course completely wrong about it being rare. Can you brandish the 2007 systematic review by Schneider in JAMA that says hypopituitarism occurs after 16% cases of concussion (called mild TBI in the article). I think that figure must be too high, but anyway, it might shock him. I hope the neurologist is helpful. Good luck, again!

Thanks hypo, I dont think my gp is very knowledgable about PCS at all. He struggled to give any advice regarding my possible sleep apnea symptoms. I am just hoping the neurologist can help. Looks like I may have a long wait tho theyve said could be anything from 3-9 months, really dont want to wait that long. I may look at private options, do u know if theres a specific type of test I could request for hypopituitarism ? May see if can get this done privately. Thanks a lot for your help

There is no "treatment" as such for PCS. There are a few treatments for individual items that have been affected by the concussion e.g . an inner ear problem.

The main thing is just time. The younger you are, the better the chances of improving and the shorter the time to get back on your feet will be. Just take things easy and not push it too much.

Painting-girl profile image
Painting-girl in reply to sospan

I'm afraid I don't think what you have written there is accurate Sospan. I think research has moved on. I was told by the consultant that if you maintain the boom and bust pattern on the fatigue that they do know you don't improve.

Given the stuff that my medical team addressed, not least the fairly ubiquitous depression and anxiety that kicks in with brain injury, there are quite a few areas for intervention, that produce improvement.

The ultimatum I had from the neurologist at 7- 8 month mark, was that I could stay as I was, or go through his whole programme of interventions with the specialist physio ( exercises for oculomotor, vestibular, and autonomic nervous system issues, and de-conditioning, specific neck manipulation for headache, and detailed support to manage fatigue). Plus antidepressants from the neuropsychiatrist for the anxiety and depression I insisted I didn't have ( but actually did) plus advice on how to manage fatigue, plus talking therapy and fatigue management from the neuropsychologists to handle everything else.

The thing is, I would have been a lot worse off if I had just sat and waited for it to go. I've learned an awful lot of strategies to manage fatigue, to the point where though it's something I live with, I now feel ok for a great deal of the time - which I didn't before.

The team I went to said they frequently didn't see people until the three year point, when concussion / MTBI was harder to treat. The sports physio the neurologist sent me to, started to specialise and research when he saw how little was done for young sportspeople with concussion, and the effects of that. He certainly didn't accept that it was untreatable.

The consultants both discounted the hormone disruption thing in my case, and no- one suggested an optometrist. So as I'm officially discharged back to the GP now, I suppose the question is whether I look at those as well or not now.

Basically I've still got the fatigue to manage, I'm still seeing small cognitive improvements, but have issues with my working memory - decision-making can be difficult. I manage short term memory issues with a diary and smartphone. I'm not great in supermarkets - though the oculomotor exercises made a huge improvement in that. I couldn't go back to the day job. A lot of stuff is a lot better than it was though - and I can walk across a room without getting unbalanced.

sospan profile image
sospan in reply to Painting-girl

Respectfully, what I said is correct, there is no treatment for PCS. There is treatment for the individual symptoms 1 by 1.

Again the younger you are the better the better is the brain plasticity which all the research points to being the key factor to recovery

My final point is also correct, In all injuries be it a physical or mental, pushing things too quickly increases the chances of failure and set backs. In the near decade of being on this site, there have been so many stories of people returning to work to soon not being able to cope and compounding the issues over employment.

Similarly, with physical and mental exertion, too much, in too short a timescale can put too much strain on a persons physiology.

Very few people have been fortunate to see as many specialists as you have in a relatively short period of time. Many people have undiagnosed conditions even at the 2 year mark which may pose a risk to the persons. My wife for example had her first MRI 18 months post injury. It has revealed a white spot on the brain which wasn't revealed on a CT scan. Only last week (2 years after the incident) did she speak to a Neurologist over a video call. Until the MRI is resolved, she has to take it easy and avoid shaking her head !

Painting-girl profile image
Painting-girl in reply to sospan

Yes, I know I was lucky - it was just a fluke that my neurologist was stuck, and happened to know neuro number two . So having basically just stopped seeing any improvement at a pretty low level of function - I then did have a very fast improvement with the new team for the following nine months, after which it slowed down a bit. But family and friends also noticed a marked improvement over the period..

I think they've proved plasticity carries on now. (But then I went back to university at 40, when it was supposed to be more difficult for older people to learn, turned out to be great fun and I went off with a first and a college prize).I think my point was that just that assuming that you are young and waiting for it to clear up without intervention won't work for everyone. Hence the sports physio being unhappy enough to do some research and dig into what was possible when he was seeing young athletes going on the scrapheap. I know that getting intervention on the NHS is difficult from the stories here, but it must help to know there are interventions?

Some people have no option but to work - it's really hard. But yes, pushing through the fatigue isn't a good strategy - it's really difficult to get the balance right between sufficient activity to not go into a damaging downward spiral of de-conditioning, and avoiding exacerbating fatigue and other symptoms. The consultant pointed out that doing nothing isn't good for us - the only time it is remotely 'normal' is at Christmas!

My wishlist had been to walk to the sea and back ( when I wasn't driving) but if I did that, I keeled over for a couple of days afterwards. The solution from the physio was to walk down, then sit down and eat and drink something for 30 minutes to rest up, and only then walk back. Which worked. I can now do the round trip without the break without knocking myself out.

I hope the neurologist can give you both some reassurance on the white spots on your wife's MRI - hopefully they will turn out just be something benign like my migraine white spots on mine - shall keep my fingers crossed.

HiI’m on this forum because my sister has post concussion syndrome- we’re 5 months on from 2 knocks to the head- and she has suffered from similar symptoms as you. Her gp doesn’t have much experience in this area and at best is indifferent if not downright unhelpful. Like many other people I’ve had to look elsewhere for help and advice. It’s good that you have had some specialist referrals and they will help with some of your symptoms or to eliminate possible problems.

The staff at Headway are very helpful and have lots of information .

As others have said key to this is managing fatigue. My sister has found the hourly brain breaks extremely helpful. They have helped stabilise her day.

Another thing to consider is the balance been physical activity and mental activity - all of which deplete your reserves. You might want to consider cutting back on how much you use electronic devices and watching television all of which is draining for the body.

A fatigue diary is useful especially if you are going to have to get into discussions about returning to work and possible adaptations to your work pattern.

A healthy diet is important- cut out processed food if you can, Mediterranean style diet. I think there’s more information in the Headway leaflet.

This must all seem very difficult especially if you were used to living a very active life. Try to take each day at a time and work out what is good for that day.

Good luck with everything.

Bb1878 profile image
Bb1878 in reply to Butterfly28

Hi Butterfly28, thanks a lot for your reply. I'm glad to hear your sister has made progress with her condition. I will definitely try out your suggestions regarding brain breaks, fatigue diary etc - im really amazed to realise how many ppl are coping with this condition, I had no idea this was even a condition until very recently (I thought I was going crazy tbh). Thanks a lot and best wishes

Hi! I had a head injury 5 years ago and suffered really bad with post concussion syndrome. The worst was the ground suddenly moving and dipping. The best way to describe my feeling was if someone went up and down in a lift continuously and then tried to walk normal.

I suffered for about 14 months but I would have days I felt ok, it was a long process and I just remember one day realising it had been weeks of feeling less wobbly and it was amazing.

I know it is hard but try and focus on the small improvements, it will get better but unfortunately it does take time.

I hope it is sooner rather than later for you.

Chloe.

Bb1878 profile image
Bb1878 in reply to ChloeES

Hi Chloe, thanks a lot for you reply. I'm glad to hear your sumptoms have improved over time. Yours and other ppls responses have given me hope that I'm not going to be like this forever. Thanks a lot and best wishes.

Teresa66 profile image
Teresa66 in reply to ChloeES

It gives me hope reading your reply. Thank you.

Hi. Its great you're having support from Headway. I also have sought their support and they have been brilliant in reassuring and advising me and also my GP. I empathise with what you're saying and have experienced similar symptoms and frustrations. I also self referred to a physio after a few months, who advised that I had also sustained whiplash with the fall and i have an exercise programme to support me, which I'm finding helpful. Another area that helped was being treated for vertigo- BBPV, helped resolve dizziness and nausea. - specific physical interventions performed by GP and then exercises for myself. It has taken along time and quite a process to find interventions that help. PCS is such a blurry area, that needs more research. Good luck. Headway have been a real lifeline for me.

Bb1878 profile image
Bb1878 in reply to silverbirc

Hi Silverbirc, thanks a lot for your reply. Strangely enough, for all the symptoms I have, dizziness isnt one that effects me much. Nausea, feeling sick, headaches, fatigue are part of every day life for me now (along with other things) I will have a look at that BBPV you mention. I've not heard of that. Headway have been brilliant with me, really glad I came across them - and this forum! Thanks and best wishes.

Hi, here's another resource which I think is useful. Developed by clinicians and people with persistent pain. Lots of useful advice and tools, including pacing, goal setting, keeping active etc - my.livewellwithpain.co.uk/ and I think Breathworks offer really useful advice and tools to support mindfulness practices :breathworks-mindfulness.org... . I understand how stressful the uncertainty of symptoms can be. Go gently.

sorry I do not really know enough about pitury hormones when I asked a gp she said my blood test for pitury was normal, is there anything I could do is there a more specific test available, I would like to get better and feel I could have more test4, gp often want to refer me for things but what I would really like is tonot have migrianes from tbi. tia

I am currently being treated for post concussion syndrome as well since July 2020. My medical team includes a Neurologist, a Neuropsych, Neuro Opthalmologist and a Physical therapist who specializes in concussion. The first two months I had difficulty walking and slurred speech. I still battle daily with headaches, tinnitus, dizziness, fatigue, blurred vision, light sentiment to name a few. Even writing this puts a stress on me mentally; makes me fatigued. I was very irritable, that has improved. I have anxiety since the incident. I have days when my mood is very low and all I want to do is cry. I try to get out and walk which is tedious but also helpful. It’s a rough journey. I am still out of work and that in itself is another struggle. What I’ve found is that when despair sets in it makes the symptoms worst. Peppermint oil from Doterra has been helpful with the headaches along with Botox. Symptoms will improve but it takes a while. Keep your head up as hard as it is

Bb1878 profile image
Bb1878 in reply to Kind345

Hi Kind345, thanks for your reply. Your symptoms do sound very much like what I am going through, since August 2020. I've now been referred to a neurologist, thanks to this forum and the information I received from headway which I gave to my gp. I'm also completely up and down from one day to the next, simple things beforehand are now really difficult for me, I can't plan anything in advance as I dont know how I'll be, some days are complete write offs.

I had an ENT appt last week for tinnitus, which was basically useless as I was just given leaflets on the condition and told ive got it for life.. thanks for that! I also have an opthamologist appt next week (which I've been waiting 4 months for). I'm hoping they can find something as I'm suffering massively with my vision now and all that I've been told so far (by optician/optometrist) is I have dry eyes..which I've had for 20 years but irt never been like this before my accident. That, along with the constant fatigue are the biggest issues I have (altho I also have many other issues like yourself - I call it my shopping list of medical problems when I spk to my gp..).

I also really struggle overnight with sleeping problems, and occasional sleep apnea symptoms, which has been very frightening.

I hope you continue to improve with your treatment and I'm hoping I too can get the proper help I need going forward.

Best wishes

Kind345 profile image
Kind345 in reply to Bb1878

Have you started any type of physical or occupational therapy with a concussion specialist? I’ve been doing convergence and vestibular therapy. Look up some of these on YouTube. I use a Balance foam as well plus a slew of vitamins such as Coq10, Vitamin B2, Magnesium and fish oil that were recommended by the Neurologist. Sleeping for me is a task in itself. I can fall asleep, however it is difficult for me to stay asleep. As we know sleep is imperative for restoration. Lack of sleep also increases the fatigue. What I’ve also learned during this process is you have to be extremely patient and try as hard as it is to remain positive. Lengthy conversations are a trigger for me hence some calls I do not take. It is hard but I’ve seen others who had massive traumatic brain injury recovery so I try to remain optimistic as hard as it is. Daily walks help and deep breathing exercises

Bb1878 profile image
Bb1878 in reply to Kind345

No, I haven't actually been officially diagnosed with PCS yet. My gp has been treating me for the separate symptoms (fatigue, vision, tinnitus etc) but has never mentioned they could all be connected to PCS. It was only by finding this forum and speaking with Headway that I discovered this condition even existed. Youd have thought the gp would have ',connected the dots' and mentioned it, but no. I've since downloaded the gp information sheet on PCS from headway site and showed it to my gp, who has now referred me for neurologist assessment. I'm hoping this will now help me get on the right treatment path. Thanks for the info on the therapy you've been doing, I will have a look on youtube (when my eyes are upto it!). Many Thanks.

Kind345 profile image
Kind345 in reply to Bb1878

For YouTube I was only able to listen to it. One guy said to make sure you rest, walk, hydrate and try as much as possible to avoid stressors. This forum along with listening to Youtubers has made me feel less isolated. Thank you all

Thanks, I will try that. I meant to say also...I now have a complete intolerance to alcohol - im ill for days after even a small amount so dont drink anymore. Plus spicy foods - my mouth/tongue burns at the slightest bit of heat nowadays, whereas I used to love hot spicey food, another few things to add to the ever growing list..🤣

Thanks again for all your help, and to everyone else on the forum. Best wishes.

I had a concussion related to a whiplash in January 2020 (I had another whiplash in 1996). Moreover, I have a rare syndrome, called Eagle syndrome, which affects almost all the main nerves in the neck and the face: I am waiting for an intervention for this problem as soon as it will be possible, given the COVID stop for "non urgent" surgery in the conuntry where I live, Italy.It is difficult for me to make a differential list of symptoms with respect to Eagle syntrome but ,since my concussion, I have probelms of concentration and emotional problems. I feel less involvement in events, less plasure, for instance, in music, I was used to like a lot.

I am supported by a psychologist and an osteoparth: no real supprt from my GP and nuerologists, since I have a negative CT scan!

After surgery for the Ealge syndrome, which is major surgery, I hope to be able to better understand what it is happening to me.

Let us keep hope!

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