Post concussive syndrome-The long road ahead!!! - Brain health

Brain health

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Post concussive syndrome-The long road ahead!!!

4 Replies

Who would have thought - i would never recover!!!!!

I mean-they say after a bump to the head-the concussion will subside and one will return to normal, wether that be in a few weeks or a few months!!!!!!!!!!!

Its been 7 years!!!!!!!! 7 years - i can't believe it!!!!!!!

Apparently after a knock to the head, the odd random few can have concussion for years, then theres the ones who never recover from it!

Well its been 7 years, is my concussion/brain going to heal or am i going to be part of the ODD few that never recover from it!!!!!!!!!!!

Im told my condition is named "Post Concussive Syndrome" which to me doesn't do the damage any justice - as i feel Brain Dead, i feel Brain Damaged, I feel Traumatised, i feel my whole life has changed and not for the better!!!

7 years of non stop pain - non stop global pain, constant pain in my head where my brain feels like its crushing out of my skull, no, not like a migraine - its like 60 migraines at once non stop! 24 hours a day - 7 days a week for 7 years and counting, i can't believe i even made it to 7 years, everyday you think "How am i going to get through today" !

Ones simply LOST! Lost in my own Brain, unable to make sense of anything around me or within me!

I ended up with PCS after enduring 2 motorbike accidents, 2 weeks apart from each other, The 1st was on the way to visit friends, the second was on the way home from visiting those friends.

I mean-how the hell could that happen, 2 weeks apart, on the same bike, making the same journey, it was out of this world, what are the chances of that happening eh!!!

The 1st accident, i couldn't even stand up for those 2 weeks, i couldn't See, Hear, Speak, Move, Walk, Crawl, Think!

All i done was lay on a bed, clutching at my head with cold towels wrapped around the eyes, ears and forehead - no this wasn't hospital, i never even made it to the hospital, i couldn't do anything other than lay down and not move my body, even moving from side to side to get comfortable felt as though my head was in a vice being crushed slowly.

I stayed with my friend for 2 weeks - not out of choice, but for the reason i could not move, i could not find the strength to move. Just moving my eyes around their sockets left me with excruciating pain and i would vomit everywhere. Just laying still on a bed made me vomit everywhere-the pain was constant and i had no idea what the hell was going on!

Day after day i thought and hoped it would go, but each time i awakened all i felt was severe pain, there is no words to describe this pain, pain isn't even the correct term, death wouldn't describe it, torture seems a throw away comment, NO, this was a lot more than all those put together.

If there was a hotel named HELL - well ive just checked in and it seems i aint checking out!!!!!!!!!!

This was HELL..........This is HELL!!!

when it become unbearable to be at my friends house for more reasons than 1, that feeling of being in your own space, in your own house, in your own bed got me up and dressed and ready to go home, with no other way of getting home-i had to again go on the back of my friends motorbike.

Then BANG, another blow to the head on the motorbike, but how did these 2 accidents happen within 2 weeks of each other, on the same road, doing the same reversed journey, POT HOLES!!!!!!!!

YES, POT HOLES in the road, who would have thought some pot holes in a road could destroy a humans very being!

After the 2nd blow to the head-i spent 3 months in bed, eventually went to my GP, explained what happened then given the diagnosis of PCS, sent for scans but nothing showed up as being damaged or swollen or anything.

My brain felt swollen to the point where i would hold my head to see if it had grown, i would take photographs to check to see if my head had grown, as it felt as though it had doubled/tripled in size.

When i say my whole life changed-i mean my whole life changed, the way i walked, talked, ate, spoke, socialised, everything changed.

I become aggressive, annoyed, desperate, seemed to repeat myself over and over again, i would find myself telling random lies (LOL) not much, but saying things that simply were not true, i said i had a friend from Bulgaria-ERM......nope, i do not have a friend from Bulgaria---so why the hell would i say such a thing!!!!!!!!!!!!!

i could not tolerate people, friends, family, could not watch TV (not that i did much zoning out to the hypno box anyway-step away from the TV people) could not stay on the computer, couldn't bare music, hardly went out in the day-due to the sunlight being so strong it blinded me, the noise from the streets, cars, buses even birds was like being inside a massive speaker at the highest level-frying the brain with noise!!!

I now know this is the side effects of Brain trauma, damage, concussion - it took a few years to actually believe it, another few years to accept it, then another few years to adapt to it, then another few years to live with it-its my life now.

Its been a struggle-battle with thyself, changing my lifestyle, everything has gone downhill from that day-the day i had my 1st accident i have never been the same person, how i long to meet the old me again, even if its just for coffee, i almost forget who thy is or who thy was.

im constantly changing and adapting coping strategies - when the whole time, nothing that you do is ever helping, your trying to trick your brain that everything your doing is helping - but you know its simply a facade that you hide behind-but you need a focus, difficult when its utterly impossible to focus on anything else again!

My eye sight has deteriorated, my hearing has been damaged, my nervous system is no longer a super highway of smooth manoeuvre, its more like the POT hOLEd roads that created the damage, my nervous system has been shattered i think beyond repair!

I could go on and on about everything - but i want to end by saying, when you think your alone-your not! seek others who are feeling the same way. Seek help with massaging the brain/head/forehead/neck/spine. seek out a good reflexologist, have a quiet place to go to-away from all the noise, speak out and tell everyone what your feeling, and how your feeling-as most do not see your pain - turn to herbs and spices, change your diet and lifestyle, focus on whats important and let go of all the baggage, let go of your old life and embrace the new one, keep your memory working but don't over think and don't over work your mind, its ok to relax and let time pass.

take it day by day, minute by minute, laugh, cry, scream do whatever you need to do to release the anguish inside, these words mean nothing when your in pain, but for me-they're a reflection on how long ive managed to sustain my life, health and being.

So find your place within yourself and be content, fight for life and never stop looking after yourself, take time to be alone, take time to be with others, i'm still alive - i'm just a different version of myself, although at times-i wished i wasn't alive-just to have a few moments of peace without the pain, in my darkest days i found my strength, and i wanted to share this with you, if you feel there is no hope then please just keep going, one day things will get better somehow someway xxxxxxx

4 Replies

Side Effects, Tinnitus, depression, anxiety, panic attacks, global pain, eye pain, blurring of the eyes, lack of appetite, annoyance, anger, frustration, unable to express yourself, coping, caring, walking in a straight line, going on a bus-due to movement causing pain, nerve damage, unable to taste or smell, severe headaches, hot flushes, sweats, confusion, dizziness, loss of balance, lack of interest, difficultly focusing, insomnia, loss of memory, unable to learn new skills, difficulty in concentration, fatigue/tiredness. amongst a lot more, each person may experience different side effects from another.

Marnie22 profile image
Marnie22

Wow! Just joined the community today. Your post was so amazing and moving. You have had an insane time. It is incredible that you have kept going.

I suffered a brain injury in hospital three years ago and received NO support or care as the doctor who operated on me denied what happened. The best help I have had has been from the national Headway helpline and I now go to my local Headway group every week which has been really good. I had to battle for over a year to get funding from my local Adult Social Care to be able to attend Headway. I only succeeded once I got my local MP involved.

Why does everything have to be so hard?

in reply to Marnie22

Hi Marnie22........first of all - Hi, welcome, Yes, Headway are great - they must be great-as they let me rabble on their webpage....lol.......They also stopped me from losing my mind at times-they were at the other end of a telephone for as long as i needed to talk away my troubles.......No words can express the gratitude to The Headway organisation and those who work within the organisation. Headway staff recomended this website to me and its been so emotional finding people who are going through the same things - its a comfort for sure, and we all have one thing in common most of the time-thats either damage by the hands of another, or unable to recover properly..........Marnie22 you said no-one was helping you within the NHS etc...........whats your symptoms???? how are you feeling?????? what does your headway group offer and is it helping you??????

Do you mind sharing what your operation was for and how your health was before the operation, and what its like now??????

in reply to Marnie22

Also, have you considered physiotherapy, yoga, meditation, swimming, floatation tanks, aromatherapy, salt healing, body dettox, gong baths, sound healing, diet changes, head massage, healing through tapping, cbd oil, herbs, spices....

Also, it took me a lot longer to get the help i needed, so your battle of 1 year seems amazing to me, im only now after 7 years being referred for help... i can imagine that (Year) for you felt like (10)........... yes, we battle for everything in life........so sad-begging for help-its cruel !!!!! never give up searching for help ok, never stop battling to find treatments, maybe later you can look at proving malpractice, for now-find a way of looking after yourself.

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