Newbie just saying hello - Non Aneurysm

[Guest Phil Price]

Hi there everyone –

After drifting around for a couple of months surrounded by strange emotions, sensations and thoughts, here I am among dozens of people who may know how I feel and have experienced similar things to me. My SAH was on 25th August 08 – so tomorrow is my 8 week anniversary. Happy anniversary eh – NOT!! It is not something I can imagine anyone wanting to celebrate.

I spent 8 days in Addenbrooke's in Cambridge being cared for by the very attentive and warm staff on A3 ward. A huge thanks to them – they are wonderful. All my scans so far have shown absolutely no cause for my SAH. I have another MRI scheduled for 30th October 08 – so hopefully that one will return a NAD.

After the bout in hospital where I was incredibly frightened and did not know if I would even survive - I was making a very agreeable recovery. Until after 7 weeks I suffered my first set-back. I had been told to expect 'a sign' from my body telling me I had over-done things. But they said I would just feel tired or drained and need to rest up. But instead I experienced a peculiar sensation in my head that I still find difficult to describe – sort of light-headed, almost to the point of fainting, but not quite. Made me feel very unwell – I retired to bed for several hours to recover.

That was a complete shock – and it took me several days to come to terms with it and the weird sensations it left me carrying around.

I'd be particularly interested to hear from other SAH victims who also found no cause for their bleed. Just to get their advice and talk about their own experience. Thanks for being here, it is a great comfort to know I can go somewhere for info or to just let off steam or express how I feel.

Is my life changed forever?? somebody tell me if you know. Cheers, Phil

[paul99]

hi phil

welcome to the btg i think you will find so much support i think you will have to listen to your body you have gone through a huge trauma and it will take time to get used to taking things easy for a year or so you among most survivors on here have felt frightened as well my lin is still going through it and is still fairly poorly but hopefully she will pull through you have done very very well recovering so quickly and i hope your scan comes back clear unfortunantly sah do happen like yours but they will find out why and give you peace of mind from what everyone says on here is that they all have symptoms and weird feelings that go in time im fortunantly lucky not being a sufferer but as a partner of someone who has had a major trauma and worked in the health field for thirty years i understand how you feel and wish you well but many on here will support you and answer your questions i do really hope your scan comes back clear and that you move on to a full recovery best wishs

[bogbrush]

Hi Phil and welcome to behindthegray.

Strange sensations in the head are quite common at your early stage. Even 2 years down the line I still get the odd twinge.

As for your life changing forever, whatever sort of recovery you make, I'm sure it has. I have made a complete recovery, but it has changed my life for sure.

Regards

Keith

[Tina]

Hi Phil

A very warm welcome to Behind The Gray.....you will find lots of support and friends here....i am 10 months down the line.....my sah came from nowhere...no warning...but ruptured........i have been clipped. I have funny feelings still and think it is all part of recovery.....still early days. The lightheadedness i also still get which affects my balance.....but it is getting better.....just a lot worse when tired. I have blurry vision still, but a least the constant double vision is only at night or when very tired. Things will get better....you are still in the very early stages. Take care and rest up...listen to your body really is the best advice i have been given.

Take care, hope to hear from you soon, Love Tinaxx

[charty]

Hi Phil

I had my SAH in June, coiled and a shunt fitted, still coming to terms with it and hoping to go back to work after Christmas, am making good recovery though have some 'off' days, this website has been a great help. I used to live near Cambridge and know Addenbrooks well, a good hospital. Take Care happy to chat anytime.

Caroline

[Louise]

Hi Phil

And a very warm welcome to the site.

I was told that the weird sensations in my head were just the brain reparing itself after all if you get a cut you feel the sensation of that getting better......

They couldnt give me an explanation as to why but I had been under a lot of stress when it happened they didnt say that could or couldnt have caused it......

but your definatly not alone in what you feel or are going through believe me.......and you are really early on in your recovery.....

keep postive

take care, Louise.x

[Janet]

Hi Phil

A very warm welcome to our virtual community. We do have a few members who have had the same as yourself with no cause found for their SAH. The peculiar sensations you got are another sign of overdoing it as well as the more usual ones of fatigue and tiredness. Almost two years down the line and I still get very weird sensations more so when I have overdone things.

Eight weeks down the line is very early days and as the others have already said it does take time for the brain to recover so be kind to yourself and take plenty of rests as well as drinking plenty of fluids. Look forward to hearing more from you.

Janet x

[MUTTI]

WELCOME PHIL

I AM 3 YEARS IN AND STILL GET ALL THE ABOVE WHEN I OVER DO IT. BUT EVERYONE HERE HAS HELPED ME TO SHAKE SOME OF THE FEAR AND UNKOWN THAT I HAD BEEN FEELING.

AS FOR A CELEBRATION EVERYDAY I WAKE UP TOO A NEW DAY IS A CELEBRATION. LIFE HAS A NEW MEANING AND EVERYTHING IS CLEARER TO ME.

LIFE IS FOREVER CHANGED BUT WITH EVERY PASSING DAY IT GETS A BIT BETTER AND IT BECOMES THE NEW YOU EMBRACE WHO YOU ARE AND LIVE EACH DAY TO IT'S FULLEST.

I DON'T KNOW ANYONE THAT KNOWS THE CAUSE OF THESE THINGS, SOME ARE BORN WITH THEM OTHERS DEVELOPE THEM :? BUT WHY SOME RUPTER AND OTHERS DON'T IS A MYSTERY.

LUV XXX EVELYN

[Janet]

Hi Phil

Just found a link to non-anuerysm SAH for you to read into.

http://www.behindthegray.net/forum/viewtopic.php?t=76

Janet x

[tennissmithy]

Hi Phil,

Welcome to BTG, a fab site with lots of support and advice.

I had my SAH just over 2 years ago and still get head twinges.

You are very early in your recovery, take care and listen to your body- something which i'm failing to do at the minute!

Love and hugs

Laura

xx

[Ann]

Hi Phil

Welcome to btg from another non aneurysm SAH person! There only seems to be a few of us around. I had my SAh whilst on holiday in MAjorca in January of this year. On release from 2 weeks in hospital in Palma and on return to UK I figured that I would be able to return to "normal" very quickly, after all, they tell us that not finding any reason for the SAH is the best outcome and there seems very little advice or follow up (in my case anyway) for recovery.Whilst that is heartening to know, it still leaves us with unanswered questions, why did it happen and is recovery the same as for SAH with an aneurysm?

Anyway, like you I headed back in to life only to find myself, like you, getting weird sensations in my head, totally non specific and hard to describe, sometimes felt like someone was stroking inside my head,plus the tiredness was so overwhelming all I could do was cry and take to my bed.

I felt (and still feel) such an idiot, as, after all, we haven't had major surgery like many people here. I sometimes feel like a fraud and that I should have no after effects as even I can't see any physical signs that I have been ill. The neurologist here seems happy as long as I can walk in a straight line and squeeze his hand! Yes, seriously, district general hospitals are rather inadequate in these matters.

10 months on I have made huge strides in what I can cope with on a dayto day basis but I still get times when the cumulative effects of a few busy days lays me flat out for a few days afterwards. It is so baffling to me as I am a very determined person and have recovered from a very serious illness in the past against all the odds yet this silly thing has laid me so low!

Heavens, what sort of welcome is this, a moaning session from me! Actually I think it is the best welcome because it lets you know you are following a normal path of recovery it seems, maybe not according to the "manual" but according to all the people on here who know how it really is.

All the best with your recovery, do not run before you can walk as I did, take it slowly, do not pressurise yourself in to going back to work (just getting there wore me out!) and realise that your brain dictates the whole of your body and mind so it is bound to have some effect for quite a while.

Anyway Phil. pm me if you want to know anything else about what seems to happen over the first few months although we are all totally different in terms of what is normal for us.Good luck and best wishes

Ann