Is this normal!: Hi everyone again, I'm still... - Headway

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Is this normal!

Cornishwaves247 profile image
19 Replies

Hi everyone again,

I'm still struggling with this bleed in the brain. I still can't walk independently, I have poor balance still, my eyes have still not corrected and my brain is still constantly moving about. I have other symptoms but I can manage these. Is this normal? I walk linked armed with my dad everyday and try to free walk though it's just staying the same. I'm in month nine now and still house bound and even walking round the house/bungalow is hard work. Should it not start kick in now and I see some bigger improvements?

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Cornishwaves247 profile image
Cornishwaves247
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19 Replies
Kirk5w7 profile image
Kirk5w7

Hi Cornishwaves, have you managed to get seen by a specialized optometrist yet?

As i said before your eyes will not necessarily correct themselves. And sometimes these problems we are left with are forever its a matter of coping strategies.

I am 6 years in but i still do see minor changes. It took 18 years+ for you to become an adult and there may be some parts of your brain that no longer function, i have lesions in my brain these are where the brain tissue is dead and will never function again, so you have to train your brain to adapt and that can be a slow process.

I understand how frustrating this is but this is why we are told it is a slow process and everyone’s recovery is different. Some seem to recover quicker than others, there are many reasons for this.

I do hope you can cope with this and see some of the improvements you want xx

As you’ve observed before improving your eyesight will help with the balance its all linked.

Janet

Cornishwaves247 profile image
Cornishwaves247 in reply to Kirk5w7

Hi Janet,

Thank you for your reply.

I saw an ophthalmologist last week They say coz the eyes are slowly correcting there is nothing they can do.. the eyes also flicker extremely slowly and does not help my current situation. I have a six month appointment to have them reviewed again, but if they correct in the meantime, I should cancel it. Promising I guess that they feel they could correct. I'm struggling with them quite a bit but I feel it's brain related. Nothing can be found wrong with the eyes 👀 it's so frustrating

Kirk5w7 profile image
Kirk5w7 in reply to Cornishwaves247

This is good news, unfortunately it comes down to patience doesn’t it? Something we are all short of.

2stroke profile image
2stroke

Some of the difficulty' s seem to be the same as of stroke.Have you had a ct scan?

Cornishwaves247 profile image
Cornishwaves247 in reply to 2stroke

The bleed produced stroke like symptoms but I don't feel in any way that I have had a stroke.. I'm less strong on my left side and the hand shakes on it own accord, though I look at this and feel I will address it at a later date. I think it's all down to bleed damage, I just hope it rectifies 😊

StrawberryCream profile image
StrawberryCream

I still have balance problems but did get some improvement from being referred to a neuro otology clinic (balance clinic). Had to do vestibular exercises over a couple of years and still have to do them now if balance deteriorates. I am very visually dependent for my balance and reduced light, uneven surfaces etc still cause problems. After dusk I either avoid going out or if I do have to I use a walking stick. Ask for a referral to a neuro otologist.

Cornishwaves247 profile image
Cornishwaves247 in reply to StrawberryCream

I may have to look into that. Thanks. I have bn informed it's not my vestibular system which is causing the concern with balance. It is purely brain related. It's so annoying. I just want to be able to walk independently! It will happen. I just have to keep believing in it... that's the hard part.

StrawberryCream profile image
StrawberryCream in reply to Cornishwaves247

Mine was a combination of things - ears, brain and eyes, and that's why they couldn't resolve the problem but were able to help me get me some improvement.

steve55 profile image
steve55

hi have you tried a patch, give it a go it might work better over one eye than the other.

sorry to say, patience my friend,its 9 months since your brain injury.

steve

Cornishwaves247 profile image
Cornishwaves247 in reply to steve55

Hi, I did wear a patch. I found it very helpful, only now a can see the patch and Im straining one eye. B4 the patch was invisible to the eye and it helped me see the picture, I don't wear it anymore. I like to think exercising the eye are pretty beneficial keeping it off..

steve55 profile image
steve55 in reply to Cornishwaves247

i understand. without being rude, regarding mobility have you tried a zimmer frame or a trolley?

Cornishwaves247 profile image
Cornishwaves247 in reply to steve55

I have round the house. I'm using a 4 WW in the eves as I'm too tired to attempt to walk without an aid. In the day I use the walls/chairs etc

Mufc profile image
Mufc

I had my tbi in 1998 and still cannot walk independatly around other people. My physiotherapist whom I have had since 2000 says It will take a lone time to walk around other people independently as my balance will never be able to cope around other people. So just keep improving and enjoy what you can do,

Mufc

Cornishwaves247 profile image
Cornishwaves247 in reply to Mufc

Wow, that's along time. I keep hoping it will sort itself out. I'm very hopeful with what has improved and I aim to continue on this path. I've always believed that if my eyes can one day soon improve then this will have a knock on effect 😊 ... Or I'm just naive to the situation lol time will tell

Prettythings1 profile image
Prettythings1

I always feel uncomfortable when there’s lots of people around like in busy shopping centres

My eyes playing tricks on me sometimes I don’t see people and don’t see objects so risk walking into things

I still brave it as sometimes there is things I need to buy so don’t have a choice but I always stay walking next to the wall to avoid bumping into people or things!

Cornishwaves247 profile image
Cornishwaves247 in reply to Prettythings1

I'm hoping for a good recovery or I'm just super naive lol I keep saying it and will continue to believe it, once my eyes finally correct I'm hoping it has a knock on effect! I'm near the top of the uphill struggle and am looking/waiting for the downhill roll... we will see! Thank u for ur reply, and I'm sorry you are still fighting demons...

Prettythings1 profile image
Prettythings1 in reply to Cornishwaves247

Mine was over ten years ago every one will have different effects and severity’s try not to compare its good you have goals positivity is important sounds like your still in early days of recovery or months try to be patient you will get there x x x

Cornishwaves247 profile image
Cornishwaves247 in reply to Prettythings1

Oh I hope so... it's so so hard and slow, as you know. I really really hope I make it through this uphill struggle.

Prettythings1 profile image
Prettythings1 in reply to Cornishwaves247

You will just look how far you have progressed all ready x

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