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Did anyone else take a long time to get steady


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Happy Valentine’s Day. It’s now 7 months since my SAH and nearly 4 from my shunt. But I feel so dizzy when I stand. It’s ok sitting or lying. The setting is on 1.5. It was adjusted to 2.00 as apparently it was overdraining a bit but that made walking worse so we are back on 1.5. There is a long wait for the Norwich balance clinic. Did anyone else have problems?  Will it get better? I fell at the bottom of the stairs and banged back of my head 4 days ago. Boy it was tender. !! 

It seems lots of you have an almost normal life back. Maybe I expect too much too soon but after 7 months I dread that I won’t improve. Any advice ? 

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Happy Valentines day to you too Penny :) 

So sorry you fell and banged the back of your head, really hope its less painful now.

Bless you, It really shakes you up when you have a fall.

 

I don't have a shunt  but there are others on here that do.

At 7 months, like you, i was not almost having a normal life back, it took me at least 2 years to get half way there.

I had terrible dizziness, balance problems and double vision, emotions all over the place.

 

Things will get better Penny, it just takes time. Hang in there and keep your positive head on :)

You should be very proud of how well you are doing and coping.

 

We are always here for you and totally empathise with how you are feeling.

Sending you lots of positive vibes and a huge hug.

 

Take care

Love Tina xx

 

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Penny, it is very early days for you.

Unfortunately for me the balance clinic didn't help because of the part of my brain that was damaged. That is not saying it won't help you. They did provide me with a triwalker though, which I have to use when I go out. In the house I use a stick and furniture. I also have a stairlift to make ascending and descending the stairs safe. 

Initially I felt a fool with the walker as I was only 53 then and I associated them with much older people, but so what, it gave me independence.

 

Over the past 14 years I have learnt coping strategies. Before I even attempt anything I think very carefully about how I can achieve it safely. I no longer go into doing anything like a bull in a china shop. I do everything very slowly including walking.

With the walker I was able to take my dog for long walks. Because of later joint problems as well I have a mobility scooter now. That also allows me to get out and about including walking the dog.

 

With aids I have an almost normal life even though everything is often a struggle and takes much longer than it did pre SAH. It is hard adapting initially but with positivity and determination it is possible. I must admit that I do have a cleaner as housework, other than the simplest things, I am unable to cope with. 

 

After saying all that, this may not be the case for you, the balance clinic may well be able to help you.

 

I would advice you to contact Social Services Adult Care for an assessment as they will advise on or even provide equipment that will help you to be safe at home and out.

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Hi Penny,

I personally don't have a shunt so I can't comment on that, I'm sure those members who have will come along with some advice on that for you.

 

I'm nearly 4 years since my SAH and I still have problems with my balance, it has improved a bit, I still find if I get up to quickly it knocks me very dizzy, I have to stand with my feet apart when I am brushing my teeth or washing my hands & face as leaning forward makes me dizzy.

 

I still use my crutches to go outside if my dizziness is really bad because I am scared of falling, I fell 2 months after my SAH and snapped my wrist, had to have a metal plate and screws put in to fix it, so I am extra cautious.

 

As Super Mario said there are lots of aides which will help to keep you safe at home.

 

7 months is still early in your recovery Penny, hopefully the clinic will be able to help sort out some of the problems for you.

You will get there, slow and steady is a good way to go.

 

Take care

Love 

Michelle xx 

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Hi there

 

I do have a shunt, but sorry cant help thankfully mines isn't adjustable..

 

My walking is bad though balance I use a crutch which gives me confidence to go out..

 

Hope you get something sorted out soon...

 

take care

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I also have a shunt and when I lay down shunt side my head feels giddy Penny.

 

Do not know what to put it down to so I blame drill holes or shunt.

 

As time goes on it does get better, 

 

You be well and remember happy thoughts always xx It keeps us going. Slowly does it  xxx

 

Love to All and you Penny xx

Win 

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Penny I saw on your other post that you fell and wanted to add to some great replies you have had already that it took me a very long while to get more steady post having my shunt operation. 

 

I have one one word for you.

 

Pacing.

 

i hated it when I was introduced to it by Headway but realised I was still trying to tackle things at the pace  I had prior to my bleed and having my shunt kit installed and that didn’t work anymore for me. I had to slow it all right down. Relearn a new pace. 

 

frustrating? Yes and like you I worried the balance and dizziness wouldn’t get better and wanted to just push, push, but actually I needed to do the opposite. 

 

Time will reveal your improvements. The worry is natural but won’t help. But putting a pause after every action, task, activity will. Don’t run things into another, put those breaks in and that can help build you stamina and possibly balance back up.

 

a few things to consider. Your brain is dealing from the injury and insult fro your bleeds and  brain surgeries, it’s had compression from the hydrocephalus and now it’s adapting to the rather clunky state of how it manages the CSF pressure, it’s not a fast reset button.  I still get affected by changes and swings in air pressure and when it’s really low pressure I am rubbish in many ways and often have to sit a few of those days out. 

 

Us shunt girls and boys have a lasting condition resulting from our SAH which itself also has an effect on day to day living and has to be considered alongside the effects of the SAH  but yes I think it really can get better, we all attest to that.

 

Have you maybe considered chatting to Headway , see if they can offer you some help or support? It’s hard being at home and trying to cope with everything on your own, another set of eyes on it can help and bring comfort sometimes 

 

Take care x

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Hi Penny,

 

I am 3 years down the line and also have a shunt. I still have a range of balance issues but part of mine are to do with the fact that the bleed caused damage to my spinal column, so I have a spine injury as well. 

 

In the first year after my bleed I had a couple of falls - one outside and one in the shower. Like Daffodil and others have said they had to make me reconsider how I go about doing things. 

 

I know from your other posts that you are having trouble with the setting on your shunt and I would not be surprised if that is contributing to your balance problems. Hopefully the doctors will be able to sort that out for you soon. 

 

I find that since my bleed whilst my balance issues have not actually improved, like others on here I have learnt to deal with them and adjust (and as I said earlier a large part of mine is the spine damage). I can get spells of dizziness and have issues with steadying myself and walking etc. I have walked with a stick since just after the bleed and now also use a wheelchair for any distance. 

 

I hope things do improve for you and they get your shunt setting sorted out. 

 

Gemma

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