can anyone tell me what post concussion syndrome i... - Headway
can anyone tell me what post concussion syndrome is like and some of the symptoms? Thank you
Do you mean strictly PCS or the other forms of head/brain injury ?
Not being rude but why ?
I was in a coma due to low sodium and because by MRI was clear my GP says I have not got any brain injury. I have terrible symptoms like headache, balance problems, dizziness, loss of motivation and still muscles. The coma has clearly had an effect on my life as I wasn't able to go back to my job as a secretary but I'm getting no support from GP. Only referral was to a community psychiatric nurse and I feel left in the dark with some of these symptoms.
I forgot to say welcome to the board and also like most of us confused - either through the injury or what the heck to do next.
A common theme is that GP's don't understand Brain Injuries and that the MRI's generally used over here don't show the miniscule injuries that can cause a lot of our symptoms.
In terms of symptoms, what you are experiencing is quite common of a head injury but could also be something else. So what would I do next ?
a)Ask your GP for a full blood test including Thyroid to check
b) Contact your local adult service in the local authority quite often they have access to a lot of community services. Mine put me in touch with a local neurological service and that opened up a lot of other doors. If you have a partner ask them for a carers assessment as well
c) Get in contact with a local headway group to see how they can help
d) If the firm you are working for has a HR function see what they can do for you as well
e) keep an eye on this board .....
Hope this helps
Hi thanks for your reply. You could say I'm very confused both with the injury and what to do next - so thank your for your help.
I feel that my symptoms are quite common for brain injury but my GP will not have it. The psychiatric team say it's psychosomatic. Considering I never got headaches before and these last all day every day and are pretty unbearable I know that these symptoms are not psychosomatic. They are genuine physical symptoms.
I contacted a private hospital called The Huntercombe Group who specialise in brain injury and other disorders. After hearing my symptoms and realising the distress they are causing me they have been extremely helpful (and free of charge) are telephoning my GP on my behalf.
Headway are helpful and I have used their helpline and will continue to do so.
I will ask my GP for a blood test for thyroid. My GP has been really quite horrible to me saying things like 'give yourself and shake'.
My work contract run out a few months ago so I cant go to the HR department as my job has now terminated.
I will try contacting my adult services to see if they can provide any help.
Thank you once again for your help
No problem a lot of us have been there especially the struggles with GP's. The acceptance of head injuries by GP's is so poor Headway ran an awareness campaign last year for them.
I posted on another thread that despite turning up with two black eyes and a dent in my head, my GP asked my wife if I was having a mid life crisis as my injury happened after my 50th birthday.
It is good news from Huntercombe group talking to your GP as specialists have a lot of sway with the "Generalists"
You will inevitably come across a number of tests that the practitioners give you. Many of us find these incredibly trivial and belittle our injuries. The MMSE test the one they give to Alzheimer's patient is a favourite one - do you know where you are ? What season are we in ? However, a lot of them rely on it and if you pass - there is obviously nothing wrong with you grrrrr!
There is something ironic with head injuries, the symptoms and system make it difficult for people to understand what is wrong with them and then to try and get it fixed. Then when you find out what is wrong with you , they tell you we probably can't fix it, which is then difficult to understand ....
Hope you find some answers soon
Hi Thank your for your reply. My GP seems to be the one who is holding my recovery back as had a call from my local Headway Group this morning saying that they cant help me as my doctor says there is no head injury.
Anyway, I still have the Huntercombe group who are trying to help sway the GP's way of thinking. She is purely going by the initial MRI scan.
As you say the symptoms and system make it difficult for people to understand what is wrong and again they usually say to me "there is no quick fix".
Thank you for listening in the meantime. I can hope that "time is a healer" too.
If you do an internet search you will easily find lots of information on PCS. There is a whole website dedicated to this.
There are people here who may be able/willing to share their experiences but it often helps if you introduce yourself and give some background as to why you are looking for this information... For example if /how you are affected by or interested in...
Hope that helps
Thank you. I was in a coma in January 2013 and as my MRI scan was clear my GP dismisses any symptoms that I have are due to this however I have severe headaches, dizziness, low motivation and stiff muscles and balance problems. Only referral I have had is to a community psychiatric nurse. I referred myself to a neurophsycologist who did a test and it was slightly below average. However these symptoms are very persistent and I feel very left in the dark.
There's lots of symptoms that are attached to pcs. But given that you werr knocked out for metabolic reasons, that's surely not what happened in ur case. Unless you sustained a concussion as you were falling unconscious.
Hi Negeen Not sure if is sustained concussion on falling unconscious. I just feel in the dark with these symptoms. I think I need to change my GP and get a referral to a neurologist who can maybe shed some light on this for me. Thanks for your help
GP's are generally not the most well informed when it comes to BI matters, but wowee your GP sounds like a proper sweetheart (not!) Is there someone else within the practice you can see?
I noted that you said "The psychiatric team say it's psychosomatic. Considering I never got headaches before and these last all day every day and are pretty unbearable I know that these symptoms are not psychosomatic. They are genuine physical symptoms."
It is important to understand that headaches with a psychosomatic cause are still headaches and they hurt just as much as headaches with an organic root cause and they ARE "genuine physical symptoms". A psychosomatic illness is still an illness, it is real and can be devastating to the sufferer. So...having diagnosed this, have they suggested any treatment/therapy to help with this aspect? If so it may be worth taking them up on their offer of counselling/CBT - not because you believe they are right but because it will do one of three things...and they all can benefit you.
1. it will help because there is an emotional/psychological element to the symptoms you are experiencing and that will be great because obviously you do not want to feel this bad.
2. It will help because it will give you the opportunity to address the wider issues - many of us have benefited from some kind of therapy/counselling input when dealing with the effects of life with after BI
3. It won't help at all because they are completely wrong - BUT this will also help you because they will then have a better understanding of the issues you face and will have to look at the bigger picture and you will have complied with their (albeit ineffective) treatment plan.
and of course in the meantime you can continue to pursue all and any other avenues available to you.
Even when we know we are right (and often times after BI we doubt ourselves as much as others may doubt us) sometimes we have to go through the motions, rather than fight against the system. It shouldn't be that way, but sadly it often is and when (thanks to the very nature of BI) we have limited cognitive and emotional resources, it can be our best option.
Its all very frustrating of course, but do know that there is support out there and when it all makes you want to scream we are here and will hear you and understand.
Thank you for taking the time to reply with your very informative information. I appreciate that.
My GP doesn't seem well informed at all. I had a call from my local headway group and as my GP wont refer me as my initial MRI was clear, they cant offer any help (so this avenue is closed for me at the moment).
I will keep on with my Community Psychiatric Nurse. she is open to what I am say about my symptoms at least so I am able to share my concerns with her about my GP. I am also waiting on the Huntercombe Group getting back to me as the specialist nurse said she would talk to my GP on my behalf.
As you say even when we know we are right (even although we doubt ourselves) it is maybe easier to go through the motions rather than fight the system with the limited cognititive and emotional resources we have.
It is frustrating, but I will take the support I have and try and make the best of it. It does make me want to scream so I appreciate this site for being there to hear and understand. Thanks again
Please contact Headway. They will help guide and direct you.
I will thank you Negeen
Perhaps it's time for a different gp?
Yes I think I will have to change my GP
Dear lorrainedickson2,
In this instance we would suggest that you speak to another GP in the practice, if this is possible. If you wish to discuss this in further detail please call the helpline on 0808 800 2244.
Best wishes
headwayuk
Thank you headway for your information.
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