POST-CONCUSSION SYNDROME SUPPORT
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MY STORY SO FAR....

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Post by Admin Tue Feb 24, 2015 9:57 pm

Hello everyone,

My story started when I suffered a head injury in July 2014 whilst at work. Immediately following the accident my head was bleeding and swollen from a horizontal gash, I was disorientated, dizzy and extremely nauseous. However I carried on my work that day the best I could. I kept having to take breaks throughout the day as I was feeling unwell. Looking back now I don't remember much from that afternoon at all! That night when I returned home I still felt really dizzy, sick and had an excruciating headache and struggled to sleep.

The following day due to the pressure I was put under from my employer I went to work again however, it became apparent after my first appointment I was struggling to work as I felt so unwell. I phoned my head office to explain that due to the accident I had suffered the previous day that I was struggling to continue. To my amazement they informed me that they had no idea what I was talking about as they had been told nothing about my accident. This came as a great surprise to me because when my accident occurred I was being audited my one of the companies top manager. He was well aware of my accident (as he was stood right next to me) and my condition following it but failed to report it to anyone and then left me an hour later, he did not bother to even check on my condition throughout the day via telephone. Once head office were aware of the situation and realised that no protocol had been followed after my injury they started to panic and I received numerous phone calls from various staff including the manager who was present during my accident begging me to now and go get myself checked out medically, so he would not get into trouble!! Well this was all well and good but I was currently ninety miles away from home and felt I needed to get home in order to seek medical advice, because if for example they kept me in overnight in the local hospital where I was then my wife could not get to me ninety mile away as she does not drive. I phoned my doctor and made an emergency appointment for first thing the following day.

The next day I visited my doctor and was told that I had concussion and whiplash. He examined me and said to keep an eye on my symptoms and to return to see him in a weeks time. To be honest I suffered in silence for the next week as I didn't want a fuss and did not want to upset my wife or children, and to be honest I had convinced myself that I would be cured within a few days. However, my symptoms had gradually got worse. I was extremely dizzy, had excruciating headaches, ringing in my left ear, and was forgetting even simple things like how to make a cup of coffee. I returned to see the doctor the following week and after examining me again he seemed more concerned than during my first visit and told me that I was to go to A & E straightaway, he wrote me a letter to take with me and told me to give it to the team when I got there.

I had a CT scan and lots of tests done and was informed that indeed I was suffering from concussion and that my brain had hit the top of my skull causing a small build up of fluid, which would resolve itself over time and was nothing to worry about. I was given some tablets and told to go home and do nothing at all for the next few weeks except lie down and take it easy as much as I could and that my doctor would be contact with me.

The following day or so I heard nothing from my doctor and as I felt worse, headaches, dizziness, memory loss and started to suffer from outbursts of anger over trivial matters, I made an appointment to see the doctor for the next day. The doctor I saw was not the same one as my previous two visits, she was not happy after examining me so she booked me an urgent referral to see a Neurologist.

I went to see the Neurologist the next day who after examining me and putting me through various tests asked her colleague to also have a look at me as they were concerned that I may need an MRI scan. They diagnosed me with Post-Concussion Syndrome and Post Traumatic Migraine. They said that they were not happy with the CT scan results and decided that indeed I needed a more detailed MRI scan to try and give them a clearer picture of what was going on and to also check for any other abnormalities. I was given more medication and told to go home and rest and wait for my appointment.

My appointment came shortly afterwards and I had my MRI scan done which seemed to be clear however, I was still suffering terribly, I had now started to get very depressed as my work were being very unpleasant and constantly phoned me and giving the impression that I was making it all up (even though all the information I was giving them was backed up by medical reports). They had even lied to the Health and Safety Executive on the report they issued to them regarding my accident which I found out later as they compiled the report without even asking me anything regarding the incident, the report was a joke.  As I could not work my financial situation started to get worse by the day as did my employers attitude. My doctor was keeping in close contact with me and I started to see her once a week for her to check on my progress. As I now had slipped deeper and deeper into depression and was still suffering from the effects of Post Concussion Syndrome she now also put me on anti-depressants. As she had also noticed how my employers were conducting themselves throughout my recovery and how this was hindering my recovery greatly she wrote them a personal letter explaining how I was suffering and how their current attitude and actions were extremely out of order and unprofessional.

Anyway with medical help and family support I started to feel better over the next six months. I arranged to have a meeting with work in order to inform them that the doctor had agreed to let me go back to work gradually, three days a week to see how I got on. Although the company had treated me so badly from the initial accident and up until this point I was determined to be loyal and was just so excited that I could start to rebuild my life as I had lost so much, my health, friends, independence and I was in financial ruin. The meeting went well and they said that they would arrange for my gradual return to work and that they were happy to have me back, they told me that they needed to sort out a vehicle for me to use and that they would be in touch over the next few days.

Well a week went by and I heard nothing from them so I phoned them to see what was going on. I was now informed that HR needed to have a meeting and that I might not even be welcome back. As you can imagine this came as a big shock to me as I had always been a exemplary worker and they had never had any issues with anything I had done whilst working for them and the fact that I was willing to still work for them after the way they had treated me during my recovery and initial accident.

Another week went by and I finally received an email from them requiring me to attend a meeting with them, I assumed that this would be my back to work meeting, well no how wrong was I! They now stated that they needed to ask me questions regarding issues that had arose during my time off work. Well I could not understand what this could possibly be, and with the way that they had acted previously with all the lies they had told and tricks they had played I figured it must be some kind of witch hunt or indeed something that they had fabricated in order to get rid of me. So as it was getting towards 5pm and I was getting so upset my wife told me to phone them and explain that I had been through so much over the past six months and could they at least shed some light on what these issues were as I could not spend the weekend worrying myself to death. They refused to divulge anything and just said that I was to attend the meeting. I phoned my manager about an hour later but he did not answer so I left him a message explaining the effect this had had on me but he did not return my call.

As I came off the phone I broke down in tears (this is not easy for me to admit to as prior to all of this in my adult life I have only cried when my children were born) and could not stop shaking and had chest pains and I felt as though my mind had gone, I could not think straight, could not eat and didn't sleep a wink that night. The following day seeing the state I was now in my wife told me that after all I had been through and the way this company had treated me throughout my illness was a complete disgrace, they constantly lied, disbelieved everything I said (even though all I said was backed up by doctors and Neurologists via reports and letters) members of staff had spied on me via social networking websites to a point that I had to close my accounts and that now feeling so bullied that this was the final straw and that I should resign with immediate effect, which I did.

I heard nothing for a few days from my employers regarding my resignation however, I then received a letter from them saying that they had taken advice from an external source and that they now needed to apologise profusely to me for the handling of the meeting and that they were sorry for the untold stress and worry that it caused me due to their inappropriate approach. They also stated that they should of in fact told me what the meeting was about and apologised again. This to me said that the "external source" was more than likely solicitors and they had been informed that they had treated me badly.

As I was now in such a state my wife made me an appointment to see the doctor the next day. The doctor firstly could not believe that they had done this to me and had continued to cause me constant stress after she herself had written to them expressing her concerns about how they were currently treating me. She examined me and decided to conduct an immediate ECG and also took blood samples. She made an instant referral to the Mental Health Crisis Team as she was very concerned about my current mental state and also prescribed me some tablets to try and help calm me down until the Crisis Team could get to see me. She advised my wife that I had suffered an acute mental trauma and that as my state was so fragile that she was to stay with me constantly and hide all medication.

The following day my wife received a call from the doctor who was currently on leave and was at home checking on my welfare and informing her that the blood tests results had been rushed through within 24hrs. She advised that one of the results was extremely abnormal and that my wife was to pick up a prescription for me that day and she would schedule a re-test of my bloods shortly.

During the next few days I was in turmoil I was having constant suicidal thoughts. Sat for hours upon hours not speaking and rocking back and forth. Not eating and not sleeping.

A few days later two members of the Mental Health Crisis team came to visit me at home to do their initial risk assessment. They advised that I needed to see a psychiatrist and that they would arrange for him to come and see me the following day. He came to see me the next day and spent an hour or so asking questions and talking to us about what had happened from the start. He said that it was clear to him having initially suffered from Post Concussion Syndrome and Post Traumatic Migraines and then having to endure such treatment from my employers this had culminated in me suffering a break down and as a consequence I had developed severe depression. He said in his opinion there were two options for me, one was to be admitted to the psychiatric unit, or to remain at home for the next few days on a course of treatment prescribed by him but a member of the Mental Health Crisis Team had to visit me daily. I chose to stay at home for the short term as my anxiety had got so bad that I had not left the house so I knew that this would be too much for me too quickly to be hospitalised.

Having had daily visits and having spent a short time on the prescribed medication I was advised that in their professional opinion was now time for me to attend the psychiatric unit daily for a period for at least six weeks.

WHERE I AM NOW

I have just attended my first day at the psychiatric unit. I have also just learned that as I resigned from my job (my employers have just accepted and processed my resignation yesterday) that I am now not entitled to any financial help or benefits, even though I have paid tax all my working life and never once claimed anything before. I have no idea what I am going to do, I have a wife and children to support, I feel like I have lost everything, my independence, my career, my friends, my mental health, I just don't know where to turn, my life has been completely turned upside down.

(Due to my current mental state it has taken me four days to compile this post thus far)

MORE TO FOLLOW AS IT UNFOLDS......
Admin
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Post by Pierre1 Sun Mar 22, 2015 4:17 pm

I know how you feel and it's like going through hell. However, I'm a year on now and am definitely getting better. I feel positive about the future although I think it has been a case of two steps forward, one back. Looking at other cases it seems a complete recovery in eighteen months is quite common. I realise it's a long time but I have learnt so much over the past year I am sure that if I knew half of it from day one I would be recovered by now. I'll post my full story as a separate post shortly Including those things that have helped or hindered but just keep going for the time being. It does get better and there are things you can do to help yourself if you know how. For the time being I would suggest sensory deprivation. An eye mask and ear plugs do work.

The way I look at it I have been through hell but it would be worse if I broke my neck.

Pierre1

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Post by Admin Sun Mar 22, 2015 4:47 pm

Thanks for your reply and kind words Pierre 1, and welcome to this new forum. The main thing i struggled with at the beginning was the lack of info out there via medical professionals.
I started to feel a little better after about 7 months but what with the way my work was treating me, money worries etc due to not being able to work I took a nosedive and then the depression set in and then I had a mental breakdown. It was just like someone switched a switch and my mind had gone. So now I am dealing with getting over my PCS and now a breakdown.
I think people forget that having PCS is bad enough but they fail to realise the financial, family consequences that transpire from the actual condition besides the health changes. With help I am getting better, well I hope! and setting up this forum has helped me as I do not wish people to feel as alone and isolated as I did as it can spiral out of control very easily.
I look forward to reading your story and having you onboard to help others like ourselves.
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Post by Pierre1 Sun Mar 22, 2015 6:30 pm

I agree completely about the lack of info. I am sure that had I received the correct advice from day one I could have avoided lots of big mistakes and been better long ago. It is a very lonely time and easy to feel isolated without the correct guidance. It is also easy to panic when you think the Doctors are not treating it with the correct attention as you worry that you have been misdiagnosed and that you could be far worse than they tell you.

I think the best thing I have done is to read Hannah Andrusky's book "The Hidden Disability". It made me realise that the symptoms I have been experiencing along with the intensity are shared by others with PCS. It also made me realise that there are others with far worse symptoms. When I was first diagnosed with PCS I googled the condition and found lots of internet posts of people suffering but none of people recovering. This was quite depressing as I worried whether I would ever improve. I decided then that IF I ever recovered I would make a point of posting my experience to try and give others some hope.

I am now pleased to report that I am seeing big improvements and look forward to a full recovery soon.

Pierre1

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Post by Admin Sun Mar 22, 2015 7:42 pm

Thanks Pierre, I will be sure to put that book in our interesting books on the subject on here.

I myself live in the UK, i do not know what Country you reside in but I had to go away and get information on PCS to give to my Doctor after I had been diagnosed with it. Whenever i mentioned PCS to anyone they had no idea what it was, so found that I was explaining myself to others all the time, therefore felt like others felt like i was making it all up.
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Post by drjoanny Sun Mar 22, 2015 10:25 pm

Hello! I would like to add that there is a way to recover from PCS. It requires an open mind because the way to healing is a thoughtful path. It doesn't happen by accident. Other modalities focus mostly on the physical symptoms, but what you must understand is the connection between your psychological well being and your physical well being. When you heal the emotional state then you heal the physical state. This is a trend in Western medicine, however it is a trend and they just don't have the know-how to bring a person to a happy empowered level in their life. So most of the time, there really isn't a set treatment and they will guess what works for someone. Instead each person must be looked at for their own unique set of circumstances. This means that you have to work on the things that were bothering you at the time of your concussion - because the same niggling problem(s) are still there. Every illness and accident has a reason why it happened. Therefore an accident is not random. Your own self-analysis and deep consideration and then taking the action steps to do something that will take you to the point of happiness is the treatment. That is what medicine should be about. Guiding you to feel good about your self and your life. Then the physical symptoms go away and that's exactly what I've seen over and over in my clinic.

drjoanny

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Post by drjoanny Wed Apr 08, 2015 11:31 pm

You know, you didn't need any of the scans, tests or any of these visits to those doctors. It's easy enough to diagnose concussions without all that expensive and they didn't know how to do that or how to help you even though they'd diagnosed you. That's the problem in most places. the latest research says NO to total rest because they've found they it actually makes symptoms worse or prolongs them, too. I see that it's actually better to decide how you feel by yourself before you try to go back to do something. The functional changes in a person, such as all the symptoms you had were a clear indication of a concussion. As far as treatment is concerned, you will have to retrain your brain. Anything that happens to you is not an accident. As in my son's case, he had to deal with a situation in his life that he wasn't happy about. He was stressed out and upset about it. He had to really stretch himself and assert himself. Because the cause was psychological which resulted in his physical affliction (the concussion). Until he faced the situation and started to take control of his part in it, he was going to suffer. He chose not to continue suffering, before it could impact his career and the rest of his life. If he hadn't done the things I instructed him to do, he wouldn't have won those tickets to the World Cup some 15 months later. He wouldn't have such a positive outlook at life, that is full of promise and joy. I only wish the same for all of you! Understand how the brain works. You may be able to figure it out. But don't do any of the silly brain games. You have to target the emotional parts of the brain and eliminate the stressful thoughts and emotions - anger, frustration, fear, worry, etc. Stress is suffering and it is real.

drjoanny

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