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What a long road to recovery!


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Well I have been away from here for a while...!!

I am now 5 months post haemorrhage, had a clear angiogram and just awaiting a final MRI scan in Jan as they cannot find a reason for the bleed.

However, I am STILL being sick!!!!

I had hydrocephalus, which was treated with an EVD, but surely 5 months later I would know if it had returned???

I went to work yesterday just for 4 hours, sick last night then work today 4 hours and have just been sick during my tea! I did not feel sick either time I was just suddenly sick!!!

Any advice from other sufferers, or hydrocephalus.... when it came back how did you know!??

My mind is wandering and worrying....

Thanks All XXXXX:crazy:

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Hello Lawson

Two years plus now - and I'm still being sick. Suddenly, like you. Like you too, I had the hydrocephalus and I have, I think, worked out that it was that did the real damage to my poor old brain.

I know when it happens to me though - when I've done too much, expected more of myself than is possible. The real difficulty for me is getting other people around me to accept that I can't do more than is possible. It is tough - but you have to be strong for yourself. Like me, you are a woman - and we have been accustomed to being the supporters in life. Now, we have to support ourselves, think of ourselves (without feeling selfish about that). Something quite nasty happened to us and our brains are damaged as a result.

I know I found the concept of having damage to my brain really hard to accept to begin with - it simply wasn't meant to be, was it? Not only that, but the people around us (in my case, anyway) were told that I would just fully recover within some magical period of 6-12 months. Believing this, because nobody talked to me about anything then, at 6 months, I was totally disappointed. At 12 months, I was incredulous.

At 24 months plus, I have, reluctantly, accepted that I am not the Victoria of old. And that I never will be - though I try really hard to learn to walk properly again.

I'm sorry - not offering much comfort - can't say it will just go away. It does take time to realise and accept though - that much I do know. And, at times, my acceptance runs out and I rail to my inner world.

In my terms, you are at a really early stage in dealing with it all - be patient - but don't expect perfection.

Hope this helps.

Love

Victoria

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You are so right, it is a long road to recovery. The source of mine was never found either. I did not have hydrocephalus though. I am sorry you did.

I can tell you at 5 mos I was not feeling like I thought I would. Very distressing. I starting working part time between 4-5 months and it truly was too soon. I suffered from terrible headaches and vertigo because I pushed myself.

If it will comfort you, make an appt to see your doctor. It's your body, your life, your peace of mind.

iola

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Hi Lawson,

I was still in dreamland after 5 months and slept on and off.

I remember nothing apart from bits and pieces until I had the shunt fitted.

Just keep going and hopefully you will get stronger but if in doubt see surgeon or your Doc perhaps they can

advise you.

My shunt bought me back to the land of the living, thank goodness.

Do not get stressed as it does us no good. Hope you feel better soon xx

Good luck

WinB143 xx

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Lawson. Great news you had a clear angiogram, hydrocephalus would have been one of the things they check when they did that and if you have also had an MRI. I am sure it's ok but you must check again and ask questions if you have worry as worry is no good.

My experiences is that I knew it had returned as I began to stop being able to function in many ways, it was like someone going from room to room turning down the lights, I started losing sensations ,like having a boa constrictor in your head squeezing silently is how I would describe it. I couldn't go anywhere.

Vomiting for me is always associated when I get lower pressure head feelings and worse after I have had LPs and am low on CSF. Maybe keep a diary about what you are doing, too much physical activity combined with a low air pressure weather front, that will do it for me. I have a prescription for tablets for when I get that feeling comes, it's like sea sickness.

Take care though, take it steady.

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Ditto on what Daffs said about hydro Lawson.

I cannot take shouting anymore and I am the youngest of 10 now how can you get quiet when we all get together xx

I was totally in cuckooland when hydro was at its worst.

Keep happy when possible xx

Love

WinB143 xx

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SAH of unknown cause. Me too.

At 5months I was still very dizzy and feeling sick every morning. Someone told me (incorrectly) that I would be fine after 3 months. I'd say that I didn't really feel like a functioning person...any person until over a year. I can't imagine trying to go back to work at 5months! If it is not working out for you...STOP (if you are able). There is no shame in getting assistance for a bit if it will help you recover.

Keep your sights on the present moment and evaluate what you truly need right now. You can always make adjustments as you heal.

~Kris

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