so in limbo coping with these brain problems. Can’t get involved and enjoy life with others and can’t find any help medically. stuck in the middle, frustrated and desperate, with a ringing head, brain on fire, and horrible glare and snow in my vision.
Just can’t get better and feel like i’ve been stuck in this dead end for so many years now. so, so sad about it. totally alone with it all as no friends, family or doctors understand. i don’t know how i’ll ever find peace with this
Hi Dann2,
How long ago was your injury?
Symptoms can last a long time, and it is pretty rough.
Docs can only do so much.
Give Headway a call and find out if there is brain injury group of some sort you can join - if you are ready. They often have programs where they give info and people share what works for them.
Some of the stuff that has worked for me are:
- resting enough - often, that was most of the day
- not getting too over heated or over cold - I couldn't tell
- observing what was going on as if I were stepped back a bit, seeing what was challenging but doable, and slowly slowly working at that
- finding simple things to enjoy - the wind blowing, the blue sky, watching an ant
- square breathing - put one finger on the base of your thumb, count 3 as you move to the top of your thumb, hold for 4, down the thumb for 4 - go through all your fingers - when you get down the side of your little finger, circle back to the thumb
- computer games for kids
- pacing - don't overdo when you feel you can, and then crash for days... take it more steady
- try eating frozen fruit when your brain feels on fire
- if you can find it there is also a treatment where they inject saline or glucose into muscles to release the tightness, they may inject 20 or more spots in a treatment - somehow it resets things
- if you have access to massage therapy try that
- if you have access to community accupuncture, try that - someone said they went and a few needles in the head helped a lot with the brain pain, so I tried it, and yes it helps.... community accupuncture is people sat in chairs in a group, resting quietly - the needs go in arms, legs, hea d- so wear shorts and short sleeves. This method allows it to be really affordable, and many have a sliding scale.
It does change over time. Sometimes it's a long time - not the same for everyone - but a long time. And, it does change. So don't sit there thinking oh this is forever and I'm sunk - it will change and you will change and you will grow and find many things you can't see now.
Hang in there.
Yes, it is tough and it stinks. And, eventually you will find your own peace, that will come and go a certain amount - you learn not to fall into the hole after a while, cause it isn't a great place to be.
So, hang in there.
Other people can't understand - they haven't experienced it - and even here, diffierent people have different experiences that are sort of the same but not. Docs can't understand because the training in this area mostly sucks, and they are just regular humans who also have not experienced it.
Leaf
Thank you for your reply, Leaf. it’s been 23 years for me coping with this. I’ve tried calling headway but they couldn’t help very much, same with acupuncture, and do the square breathing thing when feeling stressed.
yes i quickly learned that doctors are just people, who don’t have much of a clue when it comes to the brain. it’s a shame that some of them are so arrogant, superior and patronising to patients just trying to seek help though. i’ve had some awful comments.
i’ll try and hang in there, thanks again. Hope you are doing ok.
I'm 15 ish years out now. I have found things that didn't work in the past do work now, or do work sometimes.
I try to keep a log of what was going on when I have a bad spell. I have quite a big day planner type thing for it. I also put in 'things I did today that were really hard'. Sometimes it helps me figure out how to manage better, and sometimes that's more intuition than anything else. And sometimes I just say well look at what I got through , aren't I a strong and awesome person. (Well, someone has to cheer me on.)
Stress is not my friend, or is having people around who don't get it and end up causing stress. We can't always control those things.
And, just noticing things that felt better or ok that day - like I find being around flowers really gives me a boost.
I guess I needs a 'things that uplifted me today' section too, though that's not quite the right sentiment.
You hang in there, too, Dann2
Hi Dann2, sorry to hear you are struggling. Yes accunpuncture dies help, I just had it. It is very hard to try yourself when all you want is a bit if help or guidance from docs. Self help is the best and I have improved big time. Try eye exercises of keeping your head still rolling eyes up and down 5 times with eyes open and then closed then ssame side to side and then eyes fixed on your finger and move your head left to right and up and down 5 times gor each and shake your head gently. You will get dizzy, but do not be afraid as this is your brain adjusting. My physio reminded me how we used to try and make ourselves dizzy when we were young. So, nothing to worry about. I read as well to combat movement, stand in one place and watch cats go past moving your eyes and not your head fixed on one as well as a train or anything. You will feel dizzy but your eyes will adjust if you keep doing that everyday within a week. Retrain the brain is self help. I hope you try and get better but it dies take determination as skydiver says SMILE! and beat it. Xx
Good morning Dann2
After 25 years peace as such doesn’t exist but I learnt to ignore most of it otherwise life would be unlivable and that walk to the top of Carnedd Llewellyn with a bottle of Talisker would just be too attractive.
I said that with a big smile on my face, got to try to find humour in everything 😊
Best wishes as always
Michael
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