New to the site .... trying to finding people to t... - Headway

Headway

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New to the site .... trying to finding people to talk to with ocular hypertension, traumatic glaucoma & post concussion syndrome

Clare1929
Clare1929

I turned and hit right furthest side of forehead on the edge of a concrete wall. I had the usual flashes and headache you'd expect for a day or 2 and lump. Nothing then for a week then unbelievable pain behind right eye and up right side of forehead in early hours. I called 111 they advised I saw my doctor I called 3hrs later and I was sent to our local minor injuries unit. They took one look at me and saw my balance not right and couldn't focus and he called Burton hospital for immediate ct scan that came back bruising and swelling to right temple and frontal area and my doctor signed me off work for three mths in total with all symptoms of post concussion syndrome.

I've had balance issues, nausea, confusion, bad forgetfulness, headache over right eye, emotional; happy one minute then crying the next, feeling down on and off, feeling of zoning out and ringing in both ears over the last 3 mths from Feb to May.

From May I started reduced hrs at work I still have constant headache over my right eye and behind it to to trauma I've got high eye pressures I'm on permanent drops every night to try to get that down as it will turn into tramatic glaucoma if it doesn't or surgery maybe an option. I've just been told mri scan I had a mth ago has no abnormalities but still have fogginess and bad forgetfulness and ringing in ears also I developed a stutter and can't get words out properly since June I think I'm going to to see gp again even tho mri come back.

Can I speak to anyone that has same or similar experiences? It does make u feel alone trying to explain things to people who haven't got it

13 Replies
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Hi Clare1929,

I am not going through exactly what you are, but I do have post traumatic concussion. It’s like a fog in your head isn’t it? I liken it to having a headache but I haven’t enjoyed the drink. For me it is only 5 weeks since my brain injury so things are new and very raw. I have only just started to show emotion. It comes in waves doesn’t it? I also have some resentment and blame issues going on because I shouldn’t have been in the situation which caused my accident. I see you went to Burton- just down the road from me. Perhaps you can take comfort that there are other people going through it. Not even contemplated going back to work yet. As I have other injuries which need dealing with. Take care, you are doing amazingly well. Thinking of you

Clare1929
Clare1929 in reply to cath2727

Hey cath yeah I wasn't expecting it to be going on for this long. I hit my head a week later it all kicked in .... rest up cath. ... I find it hard to be okay one day and not another as I'm used to be if on the go all the time. Luckily my boss is understanding I work full time but she said to take regular breaks if I need them. I was signed off three mths on total ... 2 fortnight ones ... 2 months .... yes I agree it's like a permanent hangover headache but I've got stabbing pain over the re hats damaged too.

It's good to talk to people going through the same issues ... its hard to explain it to people that aren't going through it as there are no scars now to show where I hit my head so you feel some think you making it up, making it worse than it is .... I've hit a point I don't care what they think I know what's going on and that's it. I get the odd bit of off balance still now. And for three mths to had to wear sunglasses in and out doors as it was too much to look at primary colours and lighting. How did you do your head hun? X

cath2727
cath2727 in reply to Clare1929

Bless you. It’s good you have an understanding boss and you were able to take some time off. I work for the NHS and am entitled to full pay at the moment so that’s not a worry, but I imagine it would be for some. I can’t even contemplate work at the moment, which is strange for me as I love my job. I fell at a team building day in Derbyshire ( that’s a whole other story for later) 😡😡😡. I fell down a steep ravine from the top field about 20-25 feet. According to colleagues I fell full length face down and was unconscious for 15 minutes. Strange as I have no scars there, only on my leg and arm. I was airlifted to QMC in Nottingham and was discharged he next day. The GP reckons I have had concussion for weeks 😔😔 I know it early day but I am struggling. Have you had any follow up at the hospital? At a head injury unit? How do your family and friends cope? So they treat you differently. Have you seen a difference in yourself? I certainly have . So many questions I am sorry. I hope you are going to do something nice today x

Can’t stop crying tonight what’s that all about?

Clare1929
Clare1929 in reply to cath2727

You have to keep resting and go with what your body is telling u ... The more you ignore it the longer recovery takes hun. .... its been 6 mths nearly since I banged my head and I still get emotional .... I've recently had to put my pet rabbit to sleep and she has been my rock through these mths I feel a bit more lost again as she was my focus. .. I don't think having these brain injury symptoms helping me grieve for her which has made me feel down. I'm trying to think positive to get thro and if I need to talk on her to you lovely people who understand as you going though similar. .. I do feel different to person I was before .... I'm still me but different; quieter and put a front on at work a bit as don't wanna come across down all the time .... my family have said they can see a change in me ... I'm still bubbly but nowhere what I was .... don't be sorry asking questions ask away I will reply when I see a message .. I'm trig to keep talking about this don't bottle them up remember you didn't ask for this and talking will help u ..... and emotions will go from happy and laughing to sad and crying very quick that's how it can affect you .... no one's head injury will be the same everyone will have some high different to others as we are all individuals hun but I can say symptoms you having atm I've had and still having. Have you checked out what are common symptoms from leaflets or my Burton consultanthe told me to look at post concussion syndrome on patient.info.com as it gives the patient common symptoms to look out for so you can be slightly prepared. Worth a look it helped me when he gave me it so I understood a little better.. but only look at that one as it's for patients information. ... Other sites not work looking at I don't think.

I am sorry about your bunny. You miss that unconditional love. I like your phrase “you didn’t ask for this” and no I didn’t. I wasn’t even supposed to be at the place the accident happened, but that’s another story which is complicating things. We share a lot of symptoms and as you say not everyone’s brain injury is the same. I have been given lots of patient care leaflets and read a couple and I know my symptoms and how I feel are inherent in this illness. I spoke to a member of staff from Headway and she got my symptoms straight away. At last someone who understands!! I do like the headway material. I know we are going to have ups and downs- that is part of the recovery and the trauma. Thank you for listening and replying - that is very comforting. What did you do in the recovery period? I find it hard to switch off. I have developed a love for the radio , but my big love of reading and walking have had to take a step back due to lack of concentration and being unbalanced. I wondered about doing a jigsaw?!?!

Clare1929
Clare1929 in reply to cath2727

I had to be listening to one thing at a time like I'd have TV on very quiet and colour low for short bursts after first few mths and if anyo called on the phone I had to pause TV and listen to one thing at a time. I listened to acoustic music or dolphins they relaxing and had family round to sit with sometimes just sitting with company gives u a lift. I coloured paint by numbers book as could do as much or as little as u want. .... I also wrote a diary of my experiences from start of it it helped write anger down and read back on symptoms as it made u feel u have made a little progress if something u had before isn't there as bad or at all now mths later.

What symptoms you got now you didn't have when u did it? Have any got less or more since u did it? Have u got family visiting u regular?

cath2727
cath2727 in reply to Clare1929

Hi Clare, I have been keeping a diary for a few weeks. I record what I have been doing and how I feel. I also note who has visited as I have accused people of not calling and they have visited- I just don’t remember. I did think about a colouring book.’I have one somewhere and I did consider doing a jigsaw. I have also started doing some word puzzles. My concentration is so poor, I start something then get distracted very easily- do you? My family are wonderful, they visit when they can. I have friends visit most days which is wonderful. It is important isn’t it? They are wonderful. Just waiting for my referral to the head injury department. Do you get support from a similar service? I also need to see a specialist about my shoulder and arm , as my left one isn’t working well and is very painful. At least the headaches have started to subside. Ah well, another week and let’s both hope it’s a good one. There is always cake to be eaten isn’t there? X

Here's another resource: There is a Facebook group: Post Concussion Syndrome Support Group - that you may find helpful for you.

cath2727
cath2727 in reply to sca2013

Thank you for this. I have found a lady who works where I do and has had a similar head injury. Hopefully we will meet up one day- we will recover together

Clare1929
Clare1929 in reply to cath2727

Awe that's fab news cath

cath2727
cath2727 in reply to Clare1929

We have a mutual friend who is going to take us for cake 🍰 - sounds good !!

Clare1929
Clare1929 in reply to cath2727

Lol yeah sounds good

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