Just a quick hello, new to the group

Hi there my names Chris and I'm new to this group and would like to see how people manage with there head injuries, I've not had much help if any in the 6 years I've suffered from mines so would like to know if and how people manage Day to day with theres and see if we have similar probs, I don't see my probs but everyone around me does and when it gets pointed out then I begin to notice and become really down and then it's as if I switch back off to the way I've been because I forget being told if that makes sense, I'm really angry and snappy and I tell people straight if I like them or how they are acting but can't see it in myself, I forget things especially half way through conversation, I suffer from tinnitus, I've not got a sense of smell or taste, I'm constantly tired but can never sleep and there's other things but I just can't think of them at the moment

16 Replies

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  • Hi Chris, I don't think anyone gets much help after a bi - at least I don't think anyone on this forum has. I think the most important thing is not to get too exhausted - I notice my husband's symptoms are much worse when he is tired. Could you ask your doctor for a referral to a neurologist where you can discuss these problems. You could also ring the Headway helpline next week and they will have lots of good advice for you.

    Nice to chat with you, keep checking in here it's full of good advice and lots of help.

  • I'll look into a referral, I went to my local headway a few years ago and didn't find it helpful at all because they just played dominos and chess and stuff, it was good hearing there stories of how they ended up at headway but didn't want to go just to play games I'd rather find out how I can manage or fix the problems I have as I've been told I'm not the same person I was before my accident but family are glad I'm still here, thanks

  • I don't mean go to their meetings (although ours aren't like that). I mean phone them and talk to them about the best way to deal with the problems your are experiencing. I am sure they have come across all of them before and will know ways to help.

  • Oh right now I get you, thanks for taking time to read this and guiding me in the right direction, much appreciated

  • I felt like that about Headway when I went after getting my head injury in 1996. It didn't help me back then as my patience was non-existent but 20 years later I have been to another one as I need to get back to doing proper work. They have advised me to go to get employment support, gave me the numbers etc and that has really helped me as I struggle mentally with organisation!

  • Hi Chris welcome to the forum, you sound like you have some classic symptoms of a brain injury. In 6yrs have you ever had any assessments or help through any units or groups? I have a brain injury and it affects my short term memory, smell and taste and I don't cope with noise. But I also have a partner with a more severe brain injury. He has rapid mood swings losing his temper very quickly, saying shocking or inappropriate things, memory loss, communication and emotion problems. He was in denial also for 6yrs, even though I would sit him down and tell him what he was doing and how he needed help. He only really realised when one of his outbursts caused me to have three seizures and an ambulance was called out.

    I think you have taken the first step by coming on to the forum and telling us your story. I do think if you haven't already, you need to get some support. Headway are brilliant in giving you some amazing advice about how to go about getting help, even down to giving you in writing what you should say to your gp. There is so much out there for you, not only in the nhs but there are support groups, activity groups, helplines and of course us on this forum :-)

    Angie

  • Hi Chris... What you describe sounds pretty standard with Brain injury and many of us suffer similar effects to varying degrees.

    My accident was in 2006 and after being initially discharged from hospital I was sent home to get on with it... as you might imagine things did not go well.

    My BI left me with no short term memory and my "executive functions" officially shot... Things did not improve any over time and after a battle for funding I was lucky enough to get a place on a memory aids programme at St Thomas Hospital here in London. Although my memory and cognitive functions could not and have not been restored or improved, the programme provided me with strategies and gizmos to help navigate my way through the basics of daily life and it was a life changer.

    Other than that I was pretty much left to my own devices and we have learned the hard way how to manage melt downs and social gaffes of the highest order as well as the practical aspects of balance/special awareness, hyper- sensory- sensitivity and overload etc.

    Headway can be a great source of information and can signpost you to other services. Local services can vary tremendously and some Headway groups are more casual with a focus on socialisation and support...which is great for those who find themselves isolated or for anyone who simply wants to be with others and not have to explain themselves...that was what I loved about my Headway group...I could just go along and be me just however I needed to be that day... If you call the main Headway helpline number they can help with specific information...and this group can help with shared experiences and sharing of things that have and have not worked for us... although of course we are all different and so what works for some may not work for others...still it is worth a try. Your GP may also be a good starting point for local services.

    Hope you find the answers you seek.

  • Welcome Chris .... my TBI was 50 years ago, I finally saw a Neurologist in 2015[?] was a hoot given the time passed.

    You'll get good advice from us survivors too.

  • Welcome chris - sorry you've been struggling without proper help all this time. Have you spoken to anyone at Headway? It's worth calling for advice :)

  • Nice to meet you Chris, Jules here.

    I didnt have the nerve to go along to a Headway meeting so i sent my husband to have a look first on my behalf. Like yours, mine was playing bingo and dominos i think.. not for me.

    Te best advice and support i find is on this forum - most have similar symptoms but we are all at different levels of recovery, so there is always someone here you can chat to in a friendly fashion.

    Kindest regards

    Jules

    x

  • Hi, I used alternative approaches for my mum apart from taking her to the GP and asking headway for advice. Try Tina M Sullivan's book, Nourish Your Noggin. It may help you and the recipes are really nice!

  • I used to go to two good Headway meetings. No bingo/dominoes/wife swapping just good and decent conversation between all parties.

    Sadly, in both cases, someone with a BI and lots of pre BI managerial experience decided to close both groups down.

    And that, dear readers, is partially why I do not bother going to Headway meetings anymore.

  • That first few lines you've written there are hilarious brainedat17!

    I felt I didn't fit in with the clients at Headway 20 years ago and the same recently. The staff were really good though and got me an appointment with a social worker which lead to an appointment with an Employment Support Officer.

    Like everything in life it depends on how understanding people are I think.

  • Hi Chris. This all sounds very familiar. I'm 3 yrs in and like you not had much support. I have recently been to headway and am trying to accept the new me as have been fighting it for the whole time. It's resulted in migraines for days and shingles 12 times. I'm am gonna try counselling as talking about it may help. And going to monthly support groups at Headway. It is very difficult as like you I don't always notice my behaviour or tone etc. Also if the people around you fully understand then surely it shouldn't matter how you are and that's where I am heading now. I'm trying to educate those close to me. Sarah

  • Thanks for reading my message, sorry I've not replied I forget then don't know what to write, I think I'm just over 6 years since my accident and I got craniotomy and back of skull removed to get rid of a blood clot, first day I remembered was the day I got discharged out the hospital and didn't know why I was there and that half my skull was missing, it wiped my full memory of my life so I felt like I was born in 2011, my memory did come back through time right enough but the old me never and this is what I have to try and deal with now I suppose, the headaches I got where excruciating and took over my life and I took all sorts of pain relief from Gp who tried to help but they know nothing about head trauma so then I got referred to a neuropsychologist and he recommended pain killers and they took my headaches away completely so when I feel one coming on I just take the meds, it's really difficult because no one understands head injuries/brain damage and I suppose I never either until I suffered mines in 2011 and it's not just one thing I suffer from as a result, I gained a lot of weight, I suffer from tinnitus, no sense of taste or smell, tiredness and can't sleep at night, anger and snappy at others, I'm bad with time if someone says I'll meet you at 1pm and they turn up at 1.05 I get irritated, very impatient, memory loss the list goes on, I done headway groups but it was just playing games and so on so ever went back now I've just found this group and can hopefully learn how to try and deal with problems reading how members deal with there's just pity I've found it 6 years down the line, I suppose I'm 36 and still young so can hopefully learn and deal with my probs on here and don't push loved ones away because of how I act at this present moment, thanks Chris

  • 😘

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