i’m just feeling so down, coping with BI everyday. Ringing & hissing head, pain, numbness, visual snow, brain fog, cognitive problems and dissociation. I’m so tired of this. It has made me so lonely and stopped me living my life and being with people i love.
lost all hope of any recovery, if i’m honest. Doctors have been terrible. I dont even know why i’m posting here. Have talked to therapists about this for years, but they just don’t know what to say.
Anyone else totally on their own coping with BI? trying to hold their lives together and cope with cognitive decline at the same time? trying not to be weird around friends and workmates? I just don’t know what to do anymore. Even when i have called headway in the past, they haven’t been able to help.
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Dann2
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Dann, I really feel for you mate. I went through a terrible and lonely time after brain surgery. You feel that nobody understands and your self esteem crashes. I don’t have all the answers but I know the brain is incredibly good at repairing it self over time. Don’t give up hope, things will get better, as they have for me and many others. Try to find little things that you enjoy and make you happy. And most importantly do what are are now…talk to people- good people! If you want to talk to me that’s fine, but try your family and friends too. Good luck and stay safe. Phil
thanks Phil. my family are sick of hearing about it and friends don’t seem to get it either. But i appreciate your kind words. i’m glad you have recovered well.
That’s the problem, people don’t understand. Even the support workers at Headway don’t really understand, they’re sympathetic but unless you have a brain injury you can’t understand. Try to meet new people here and other places who you can discuss issues with. You’ll get a much more positive response I’m sure. All the best.
Hi Dann, I really feel for you as yes I am very low. Last week my head was so sore and dizzy making me feel that I wanted to crush it as if it had a tight band round it that I recked the bedroom and hit my head of the mattress repeatedly to knock it out. Then my husband could not take it anymore that he said he was leaving. So that was the final call for me and I ran off far away to finish my life. My adrenaline kept me going then I slept, then people kept saying hello and speaking to me and with the sounds of birds and the sun shining I eventually calmed down. I was very scared all by myself from that point feeling dizzy with tight head and the next morning was phoning headway, nhs mental health and my employy assist program or anybody for help and nobody helped me. I felt I was back to square one with nobody understanding me, isolation, loneliness and screaming with pain very destroying.
I remembered skydiver words, smile and don't let it beat you! So that was it my fighting side came back and I read the rehabilitation fir balance and sight and was doing the exercises several times a day. They so seam to help me though they seem daft just shaking your head about and rolling your eyes. I then had anti sickness tablets and went out and it was as if I got a bit of life back.
I am still signed off work so have not seen anybody or spoke to anybody for over 2 months apart from the lovely people where i ran too that knew nothing about me.
I tried to get onto a brain injury support group but there is no support in my council so have tried yo join an Enable group for mental health to speak to people.
The books all say it is a cycle, loneliness causes isolation and lack of confidence which then deteriates your self esteem and confidence.
I am really with you and do not know how long this will take or even get better with nobody understanding that I want to bang there heads together and am saying all kind of things to them since they are not listening. Please stay with us and try the balance and eye rehabilitation exercises and you will feel sick and very dizzy to start with but take it easy at first and gradually improve and try doing a daily activity each day especially since the days are getting brighter. Like gardening or going fir walk just down the street and then building up the distance, get fresh air and smile at others and say hello will improve your self esteem to help the happy hormones in the brain. Try joining a support group for either brain injury or mental health as that will help your brain and confidence. I know the long timers on here say it is hard and you will never be the person you were and have to accept the new you, but we can try to get better a bit and get out with people again.
Remember just very gradually but it is frustrating, scary and lonely when your family, friends and especially doctors that are supposed to help just say it is nothing.
I don't know if I will be able to return to work which is scaring me and that is my target to beat.
Keep talking on this website but i know it does not do want we need which is to physically see somebody which would be good as a video call on teams and exercise mentally and physically. We are all with you. Xx
thanks Letsrock, I’m so glad you’re ok and you found your fighting side again, and hope you’re able to return to work, however gradual that might be. thanks for your support
Wow - I was feeling low myself yesterday but I'm not in the same ballpark as some of the effects I read on this forum. But as I always tell people, if you've any physical or mental problem which isn't normal then size is irrelevant. My mum was in a wheelchair for all of my life and it's only since her passing that I've found a few spiritual and thoughtful items which showed that she had mental battles that were never obvious. A sheet to this song and it's lyrics was one such item: youtube.com/watch?v=Y3t5bxp...
it really is like a roller coaster ups downs and twisty turns. Recovery is very rarely linear but the good news is you can get better it just takes time and lots of patience 😬 try to celebrate the small things. Lots of brain breaks - 10 mins every hour when you lie down shut your eyes and even ear plugs for total shut out it really helps your day.I have recently been to an osteopath and I can’t explain it but it has really helped - feeling clearer and more energy. I also lie on acupuncture mat (shakti mat) at night which is relaxing 😎. You are not alone and you will get through this take it an hour at a time and hang in there 😀
Thank you. i cannot wear earplugs because of the tinnitus but will try and take more brain breaks when i can. I did try a cranial osteopath last year but it didn’t seems to shift anything. i may well buy one of those mats though, thanks x
see! We are all here for u!! Come chat whenever !! WE understand what u going through, all living the same emotions!! Lucky buggers, still to learn so many!!
hi Dann for me this is the only place people understand what your saying . Understand that others including DRs just don’t have a clue ..
for me I have seen a huge improvement in the last 12 months but even this has had massive highs and lows .
I think the best thing I’ve done is exercise and doing things that I enjoy . I’ve made two dolls houses that are far from perfect but my granddaughter loves them and I’m happy to see the end result in front of me every day .. I actually achieved something 😁
It is very hard to get started but if you can find a new or old hobby it will help reduce the stress level .. it’s not a cure but will help .. look after you as your the best person to change the future No matter how small the change is It is all very important ..
I never thought I’d be living in a body that has changed my life and want something very different . People around me don’t have a clue .. it’s everyone on here that’s helped me with the loneliness . I do hope being in here will help you sue x
thanks Sue. i agree hobbies are great, but i do struggle doing them on my own. esp because of the cognitive issues and dissociation. i might try and push myself to join another evening class, despite the social anxieties these bring. your dolls houses sound very nice, especially as they are for someone else to enjoy. must feel good
I am lucky I’m ok doing things on my own . Infact I think I prefer it , I have worked on my own most of my life .. so used to kicking my own backside give a new class a go .. it may be difficult but I’m sure it will be positive in the end Hopefully you can I’ll let us know how you get on finding a new pathway. ..sue x
very true. A wonderful place! Strangers who have only their own experiences to share/ bolster! People who know exactly what u going through, offer their own experiences to urge/ suggest things, god bless suffers?!
Dann2 try alternative medicine such as Accupuncture, homeopathy, Ayurveda, acupressure, electromagnet therapy, hypnotherapy. Carry out some research into your symptoms and treatments. I know that some uni library’s offer reader passes to assess research at the university. There is loads you can do to try and improve your symptoms and aid your recovery.
thanks, i’ve tried quite a few of these things over the years. but may buy an acupuncture mat as suggested above, at least if only to help relaxation before bed. if i think about the money i’ve spent on different therapies it makes me wince.
Hello D. It's good to post here to say the stuff out loud that we don't always say to the people around us. Sorry you're at such a low point. Lots of good posts here. Take whatever help is offered, improvements are slow but do happen. Do some basic stuff like managing fatigue with breaks again. Talk to the Samaritans, and post on here whenever you need. How did you get on with propranolol before? Have you tried anything else since? Can you join a volunteer group of some sort? Feeling worthwhile helps, and provides a bit of human contact, helps to rebuild your identity, makes it easier to deal with the down times.
thanks, i avoided propranolol due to the side effects i read about, how it can actually lower your mood, so i didn’t think this was right for me. another example of the gp not quite understanding what i came to him with. to be honest i’m very cautious of all medications these days after my past history.
do samaritans know about BI issues? i feel they wouldn’t know what i’m talking about either. it’s hard to know who to try and talk to. thanks again for the support
Samaritans are more there for general emotional support, but sometimes when we're feeling isolated all we actually need is a supportive listening ear in the middle of the night, to get us through the next few hours. Propranolol dampened my mood a bit, though I believe it did have an antidepressant effect, but it did reduce my headache as well, but not enough to warrant by staying on it for me - everyone reacts differently. I read lots of dodgy stuff about duloxetine on the web, but for me it was a total game changer, evaporated anxiety I wasn't aware of until it disappeared, reduced my 24 /7 headache to manageable proportions, and was easy to come off when I was ready. The thing with BI is the 'start low and go slow ' mantra, because we can overeact to meds.
Neuropsychologists are the best people to talk to with BI issues - they know time of stuff about how it affects us and offer practical and emotional support to adapt. Mine was amazing, she worked in brain injury rehab in a local hospital Trust.
my only time I called them, no experience of TBI at all, wasn’t suicidal just looking for a site to help me develope the new ME safely. This site is much better. Shared experience does wonders! Happy Easter to u all!!
I called Samaritans a couple of weeks back. Totally useless. Knew nothing about BI, the woman on the phone had nothing to say. She just let me talk and said nothing herself. I asked if she had anything helpful to say, no answer beyond vague ums and ahs. I just hung up in the end, they didn't bother calling back. So I won't bother again.
Got the T-shirt but over 25 years of rebuilding, building anew, most things including friends and family have fallen away. Some of it has been very unpleasant and some downright nasty.
But after 25 years I fight on and remain optimistic because there is no alternative. I have a new friend at the Brain Injury Service, Clinical Psychologist Dr Pam who has done more in 6 appointments than the rest in 25 years 🙂 She has also helped me begin to lick our local Headway group into shape.
I always say the same thing - hang in there and use everything you can think of to help yourself.
thanks Michael, i’m glad you found a specialist who has actually helped. i am worried i’ll have no friends left… let alone a partner in the future! with all these endless health problems. fear of my life slipping away from me is high. this has already affected my 20s and 30s pretty badly. anyway, thanks
Dann, I'm afraid the bottom line is it's down to you. 25 years ago when I was stupid enough to hit a tree with my head hadn't got a clue what was going on, I was 32. 8 months later I had lost my business, my wife and friends.
I was lucky my father took me back, the only requirement I went to the offices of the family business with my brothers. Over time because I was supported I did well and ended up near enough running the business. Then 1 brother died and Dad got diagnosed with advanced prostate cancer and passed on 8 years ago. I thought we, my brother, mother and me were in it together. Took me 3 years to work out we weren't which culminated in me losing my directorship, job, business and home as my mother took me to court for trespass. While all that was going on Covid and lock downs were all the rage and all help just disappeared!
In those nearly 20 years I had done everything I could to rebuild my life, my mates had reappeared so I made the effort to rebuild relationships. I also found a young lady completely by accident who lived 200 miles away but I went there every month for the weekend and occasionally longer.
The recent turbulence put paid to all that and, you know what, I don't care. I'm on my own, I'm getting a bit bloody old, but despite the very strange mental goings on, the headaches and other aches and from time to time extreme fatigue I will make it, just don't know how 😉
looking forward!! Great shows how far Iyouve come!! Try volenteering? Helped me greatly, trouble is soo many centres have shut due to funding .highlight of my day is currently costa for coffee, have met several people over the years who have various disabilities , just chat aimlessly over coffee, they have no idea but I am relearning to be social!! Try it?
Hi Dann... I feel you and I'm also going through the struggle every day with BI and for me it's getting worse. Four years in and very much alone but I've chosen to isolate myself as family are the other side of the world and friends, all except one, really struggle to understand at all. I have been going through six months of tests under a neuro consultant as it seems my brain has stopped communicating with my body. I think they will diagnose Functional Neurological Disorder (FND) so I have that on top of an actual brain injury from burst aneurism and coiling surgery. I am also extremely low and as much as I appreciate everyone here I fear I will never recover. Headway Somerset are fabulous but even they don't have a magic wand,
All I can say is just be gentle with yourself and don't let others, including doctors put pressure on you to feel or behave a certain way. If they have never had a brain injury themselves, how on earth would they know how we feel?
Sending healing vibes and hope you find some peace within your world x
apparently u brain is rewiring?! Had odd headaches? 20+ years after my injury it still amazes me!! A very emotionally numb, empty attic?!!! Used to warn my students that the brain is precious, look after it!! When u consider how much we learnt as a child, in a very short few years? Will take time to reroute but am older/ still set in my ways of old. U will develope and bloom again!! Be hopeful!!
Please don't feel alone, there are many on here who have a lot if not all of your symptoms, which is why you need to ask questions to the people on here, again and again and again until you find answers that help you even if it's in the smallest way. Do you have a Headway group near you that you can join? I am now 4.5 years on from my TBI, for the first 4 months my symptoms were awful, balance, hearing, eyesight, stabbing pains, constant headache, ringing in my ears, hearing blood pounding in my head. My GP just gave me paracetamol, I couldn't find help anywhere, eventually I was given a phone number and got an appointment after which I was taken into hospital for a month. Halleluiah, I felt the consultant I saw gave me back my sanity, she explained that I wouldn't start to feel better for 2 years, which horrified me, but she was right. I suppose in that 2 years my injuries had a chance to mend as much as they were going to, and I had time to try to accept all the changes that now make my life so different. The next major change for me was finding the nearest Headway group, up till then I felt like I was swimming against the current, I felt no one understood the changes to my brain and the loss of everything before the TBI. I went to my first meeting very wary of what was to come but what I found were a whole group of "me", all with BI's, all with answers to any questions and advice and help on just about everything. That was a major turning point, I no longer felt alone, so please, if you can find a group relatively close, please go to it, ask someone to drive you if you can't drive yourself. I don't know when you had your injury but things will improve, not back to how you were but hopefully in a way that you can feel a bit happier. If certain things stress you, stop them, do something else. I've become a bit of a hermit, I find too many people too much noise and light sets me back and by avoiding these I feel more relaxed. Mind you I was an unsociable bugger before 😁 All I say is please don't suffer alone, talk, ask advice on here, you are not alone. x
excellent advice!! See there is understanding to be found here!!! We’ve all been through the mill, shared experiences go a long way!! With this site? Who needs anyone else!! Keep safe
we have to adapt to trying times for sure! Accept our limitations, but it won’t stop u finding like- minded friends here!! Type- similar pals in u pocket?!! Happy Easter!! & keep safe!
You are not alone Dann sadly there are many of us I desperately need and want someone to spend time with me to see the effects of my TBI, not just the 10 minutes my GP offers where he tells me that I "look" OK because I am dressed and wearing make-up so perhaps just a little depressed so we will add another tablet to the pot and see how you feel in 3 months. I contracted Sepsis 7 years ago due to an infection and had a hypoxic event because I was given a drug I am allergic to called Pregabalin when I stopped breathing and this has left me with so many problems.
Like you my friends and family are fed up of my issues, my sister tells me I am mad because some are ridiculous but overall I wish I had not be woken up - it would not have been a bad way to die because living now is just so hard. I have also been left with Kidney disease and a damaged Liver. There are good people on this site and true experts because they are living with it too.
I didn't know whether to say this but I will share my true upset at not having dementia, I was so upset because that diagnosis would have meant more understanding from others - how could I be so upset that it is "just" a TBI ?
I’m so sorry to hear that life is so hard for you, FiHut. thank you for your message, I hope that somehow you manage to get a bit more understanding from others, such a frustrating thing. take care of yourself x
been there!! Lost friends either because I couldn’t jump anymore, ex- Hubble inherited my old friends the only family who could tolerate me either passed away or have their own family/ concerns. This life is challenging, redeveloped personality? Once u done this, mine took me some 20years but am now rediscovering lost emotions polish what have rediscovered, find simple things that give u pleasure. Mine was to rewrite a book I wrote in my teens. Good therapy encourage neurons to grow? Never know til u try?!!
but could it be? Y have a purpose to achieve? They won’t let slackers into the pearly gates? I know, I rattled them madly!! Still got sent back, cared/ supported mum n dad through their demise. Hope. Earns brownie point so when I knock again? …..
Thanks for your reply Dann2. Hope your day is going ok!
I hope you don’t mind me asking about the dissociation you mention?
I’m not sure if this is something Im also struggling with but I have noticed that -especially when dealing with doctors - that it seems not quite me who’s dealing with the situation. I am not aware that something changes but do end up with memory gaps. I also seem to give the impression that I’m absolutely fine. This could of course be ongoing denial kicking in. Just can’t - and don’t really want to - get used to the “new” me.
It has been going on for quite some time I think. Recently after seeing the same doctor for the 2nd time and not recognising him at all did I start to wonder.
Hi Duchy, unfortunately i’m not having a very good day at all today, my brain is awful. just feel like screaming tbh. It’s just neverending. And i get so down thinking about the things i’m missing out on in life, like love, a relationship and all the things that come with that. just makes me so f**king sad.
I feel mild dissociation all the time, i think that’s because of my brain not functioning right. When i go to the doctors, it’s always difficult to handle, as i don’t want to appear ‘mad’ or unreasonable, i want the doctor to respect what i’m telling him/her, so i usually act very sensibly and politely and must come across as if nothing is wrong, which is very far from the truth! i find the process kind of pointless as i know they won’t help me but am desperate for help at the same time. it’s just totally demoralising.
i haven’t really had memory gaps like you describe, but do come out of appointments totally deflated and exhausted. My memory is pretty poor in general though, which also worries me very much.
Wishing you the best. feel free to message whenever. i’m not quite sure how to cope with all this… it’s bloody terrible isn’t it. x
Don’t say sorry, just rant away! Better out than in.
Some days are worse than others. Getting through them is far from easy and I’m sorry you’re having one of those today.
Thinking about the things we’re missing out on makes things even more difficult and unfortunately these thoughts seem sometimes impossible to control.
What you describe at the doctors is exactly how I behave. The lyrics; oh yes, I’m the great pretender, springs to mind.
It gets so incredibly frustrating but as one doctor recently said to me they’re not mind readers. ( I have trouble verbally expressing myself) I know he was right in that respect so I went home blaming myself for not getting the help I need. Think I am also embarrassed by how bad it can get, don’t want anyone to know that I at times don’t have a handle on it. Always had a pretty good handle on everything before this.
Saying it out loud to someone - no matter how much I would want to - makes it real. Suppose checking out instead of trying to get my point across doesn’t help either.
So I totally get the wanting to be understood, treated with respect and definitely not to come across as mad.
I don’t think your average GP has a clue what to do about the problems people with TBI present with. But even if we do get referred help is not guaranteed. Have been on the waiting list for a neuropsychological assessment for almost 4 years.
The lack of help is making something that has been life changing and has left us without a brain we’re in full control of so much harder.
I'm so sorry to read this. I have felt the same and have been talking to a clinical phycologist about my feelings. I'm told to be my authentic self, to stop being an avatar of what people expect me to be ...... its confusing and lonely ... I'm early on my journey so I' not sure I can offer much advice other than to say you aren't alone and keep talking Hilary
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give a new class a go .. it may be difficult but I’m sure it will be positive in the end 
Hopefully you can I’ll let us know how you get on finding a new pathway. ..sue x
Anyone else feel people are overly cautious with them after BI
Help, Tips, and a Hug!
So so close.
