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Hi, my name is Steve and I recently suffered from a subarachnoid brain haemorrhage and hydrocephalus.

 

In the weeks following my stay in hospital, I have found this forum to be a valuable tool in my recovery. Reading the stories of others has been really helpful so I would like to include my story which may help other people too.

 

On the 19th February 2017, I was looking after my seven year old daughter as my wife was on holiday with friends. I woke up with a strange sensation in the back of my head, going into my neck. The moments after this are pretty hazy; I remember writhing around in severe pain on my bed. At some point, the pain receded and I was able to get up and make my way to the bathroom. I looked in the mirror and I saw that my face was sheet white with sweat pouring off it.

 

It was at this point that I realised that something was seriously wrong with me. 

 

My daughter woke up and asked to go downstairs. I asked her to go into her room to read as I was feeling unwell.

 

I phoned my mother for advice and she told me to call NHS Direct straight away. The operator quickly advised me that I would need an ambulance and put me through to the emergency services. I remember at one point telling them that the headache was getting better and that I didn't believe I needed an ambulance. However, another wave of pain made me change my mind and they sent out an ambulance.

 

I managed to get in contact with my mother-in-law to get her to come up and look after my daughter and then within approx 10 minutes, the paramedics arrived. 

 

They began to carry out their checks and my mother-in-law arrived. After some deliberation and calling a hospital for advice, they decided to take me to hospital to be on the safe side. I said goodbye to my daughter and walked out to the ambulance. Soon after the ambulance pulled off, I started to vomit and they turned the blue lights on.

 

On arrival at the hospital, the triage nurse put me into the queue along with everyone else waiting in A&E. It was at this point I really deteriorated; the pain became unbearable and I became photosensitive. I have no idea how long I waited there but it felt like a long time. I spoke to a nurse to say I was in severe pain who said I would be seen in 5 minutes. Another nurse callled me in to a room and I feel like I collapsed onto the hospital bed. I remember his face as he shone a light into my eyes. This is my last clear memory for nineteen days.

 

Much of what happened in the three weeks that followed I have learned from my family.

 

The CT scan showed that I had suffered a bleed which was causing hydrocephalus. As a result, I was transferred to the RVI in Newcastle. 

 

Later that afternoon, I underwent surgery to drain the fluid from my brain. When I woke up from surgery, my parents, sister and her husband were with me and I discovered my wife was making her way back from Abu Dhabi. She arrived back first thing on Monday morning.

 

The first two days I was conscious, talking and in quite good spirits although my short term memory was nonexistent. However, due to the fact I could not remember that I had a drain in place, it was pulled out and I had to undergo another surgery to replace it. Following that, I spent nine further days in the High Dependency Ward with quite severe pain, drifting in and out of sleep due to the high dosage of morphine.

 

Eventually the drain was removed from my head and put into my spine. This meant I was able to go onto a ward. It was here that my memory begins again.

 

I spent a week on the ward receiving excellent care. The drain was removed ,midweek, and I was finally able to go home on Friday 10th March.

 

The first weeks out of hospital were difficult especially when I came off morphine. I suffered from terrible constipation, night sweats and headaches as well as finding myself highly emotional.

 

I have attended some group sessions run by my local Headway group and have been seeing a counsellor every two weeks. Both of which have been very helpful.

 

Recently, things have gotten slowly easier. In the last week or so, I feel like my strength is starting to come back and I have not been having headaches. My mood has improved and I am starting to feel more like myself again. 

 

Thank you for reading my story.

 

 

 

 

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Steve, welcome to BTG and thank you for sharing your experience.  We are pleased that BTG has been helpful to you. It is a fantastic support group for survivors

Just because you feel your strength is returning do not feel tempted to rush your recovery or you may find yourself taking a step backwards. We always say baby steps are the best way forward.

 

If you feel like it you are welcome to join in the banter in The Green Room or even share any frustrations in there.

 

We also have a Games Forum which can be fun, if you wish to join in, don't be shy.  

 

Please keep us updated to your progress if possible. It can help others in your position.

 

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Hi Steve, welcome to BTG and thanks for sharing your story. It sounds very similar to mine, did they ever find a cause of your bleed?

 

Sounds like you are doing really well, you are lucky to have found Headway and a counsellor so soon. It always helps to be able to talk to someone about what has happened. A bleed is such a life changing event and many who have not experienced one find it difficult to understand how it affects you.

Glad that you have found BTG and that it has been helpful to you. I know in my early days this site was a great source of knowledge and somewhere I could come and speak to people who 'understood'.

 

Hope your recovery continues going well, take it slowly and don't rush back to work. Drink plenty of water and take lots of rest. Be good to hear more from you.

 

Clare xx

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Welcome to the Forum Steve, I am pleased you are feeling better.  I was treated in the RVI and also received excellent support.  Those first weeks are difficult I remember them well although I was lucky my bleed was slight and I did not need a drain.  I had anuerysm which was coiled still being monitored due to size and location.

 

It is a slow journey with good days and bad, more good days now 2 years later so take it slow and listen to your body.  A traumatic brain bleed is scary and physical and mental after effects are not always visible so be kind to yourself.

 

I wish you lots of luck in your recovery and look forward to hearing how you get on.

 

Regards

 

Sharon

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Hi guys,

 

Thanks for all the replies I really appreciate the support and advice. 

 

Clare-I think my bleed was non anuerysm, however I still don't fully understand what actually happened with my bleed whenever the consultant came to speak to me I was alone with no family and I simply don't remember what I was told. I had questions written down as well!  I'm hoping to find out more when I have follow up appointment in July. Will let you all know how I get on.

 

Thanks again

 

Steve

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Hi Steve, so glad you've found everyone here. It's such a comfort to know others have experienced same/similar feelings. I'm 14 months on from a nasah, which came on very like yours. All I can say is don't try to over do it, your body will let you know when you need a rest. I was back at work after 6 months, but still know when I've done too much, achy head/neck & overwhelming need to sleep. Sending you all good wishes ?

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Hi Steve, welcome to BTG.  

 

Firstly I think you did remarkably well in managing to get the necessary help for yourself as well as cover for you daughter during that initial time frame when you were obviously not at all well.  

 

It's good that you are beginning to feel that things are getting a bit easier.  As you will have gathered from stories on here, recovery can be a long slow process, but being prepared for the possible 'one step forward two back' scenario is always worth knowing about.

 

 So many of us in our recoveries have thought on the lines of "Oh, I feel really good today, perhaps I've finally turned a corner, I'll have a go at this - then, I still feel full of energy, perhaps I'll just do that too" Cracked it - then within a day or two you can feel totally wiped out and not be able to do much, if anything, at all.  I found this happened time and time again and eventually it gets a bit disheartening.  It's basically the brain saying "hang on a minute, I'm not recovered yet, you're really expecting me to do far too much while I'm still poorly and if you're going to do that to me when all I want is rest, then I'm afraid I'll just have to shut down for a day or two, so you can't do this to me until I'm ready" !

 

Everyone's recovery is unique to them and I wish you all the best with yours. At least you will be in a better position in July to remember what your consultant says.

 

Sarah

 

 

 

 

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Hi guys

 

Thanks for the further comments again it is really appreciated. 

 

I can relate to the one step forward and two steps back when recovering. Three weeks ago I was trying to do more and more, walk further, read work emails etc. I basically had a crash and burn moment.

 

I tried to walk along to a local fair with my wife and daughter but didn't make it all the way there as I didn't feel all that well and the noise was unbearable. I turned back and let my wife and daughter go on ahead. While walking back home I began to feel off balance and almost 'drunk'. I made it back home but I was in a bit of a panic as I thought if I fell I would not get back up. 

 

I have taken this as a warning to take it much easier. For three weeks I have been mostly resting and not doing much at all and I feel much better for it. But I know that taking it easy will be the way forward from now on! 

 

Thanks again,

 

Steve

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Hi Steve,

 

Never give up (I am sure I posted you already)  I was told I'd never walk again, well the guy said "What makes you think you will walk again" I thought rude words and thought I'd show him.

 

Christmas 2010 I walked 4 steps to my hubs to give him his Christmas present.  I was shattered but after hols he went and got me a zimmer frame for around the house.

 

I walk unaided but stuck at 200 yards on a good day.  I have my dignity back though. Never give up keep trying.  I shower myself also.  Sounds silly things but they are all aims.

 

You will get there and look back and say "Yeah I did it"  Never give up.  I also have days in chair and I think lazy Win get off butt. 

Keep going you will get there XX

 

Regards

Win xx  Zimmer frame gone, walking sticks gone, (they got in my way)  Good luck xxxx I had SAH and hydrocephalus with shunt fitted also.

 

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Hi Steve,

welcome to the group, I too have been in the RVI-fantastic regional centre.I'm post 8 months now, and managing to work full time again, and just got my license back last week from DVLA.

what you are going through is perfectly normal, take each day as it comes, plenty of rest , listen to your body, let the family help you.I love quietness hate noise now.

There is a local monthly support group at the RVI which is great help for you and your wife, your not alone.

Take care, let's hope that the weather improves, and you can relax in the garden, take your daughter to the park when your feeling stronger, as your going to feel weak for a while.

Dont overdo it, tired have a sleep xx

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  • 2 weeks later...

Hi Steve,

Welcome to BTG, sorry for the delay in picking up on your post, I've been moving house and just catching up now.

It sounds like you are doing ok, as you are already finding out the recovery road can be a bit of a bumpy one at times.

Plenty of rest and drinking plenty of water as this really does help with headaches.

I was also in the RVI, I HAD ruptured aneurysm, they saved my life, I will be 3 years next month since my bleed.

You have certainly come to the right place for help and support, this site is fantastic, everyone is very friendly and the other thing is you know you can come here and talk to people who know what you are going through, it's not always easy to talk to family and friends or to off load your worries to them, you can do that here.

 

I wish you well as you go along the recovery road,

Take care

Love

Michelle xx 

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Thanks again for all the comments it is really appreciated it's a great help to get all this advice. 

 

Chelle and Missy you were both at RVI Yes they are amazing I was at QE originally and they diagnosed the bleed and then transferred to RVI for operations etc.

 

At at the moment I am still resting mostly, it has done me the world of good rather than rushing things. I feel much stronger physically.  

 

The counsellor I have been seeing was excellent he taught me how to meditate which I recommend for calming the mind. 

 

My main issues this past week has been low moods stuff that happens in everyday normal life is hitting me for six and the reliving of the moment I had the bleed. I keep thinking were there any signs of what was about to happen but there was nothing at all.   

 

I find new situations quite taxing like this morning I took my daughter to school and the act of getting everything sorted then walking there and then speaking with people I have not seen since the haemorrhage was very tiring i had to lie down when I returned home.

 

All in all I am happy with my progress it's coming up to 3 months since the bleed and I intend to keep on taking it as easy as possible all the advice points to this being the key to recovery.

 

Thanks again 

 

Steve

 

 

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Steve,

 

I get moody, we did before we had our bleeds, so even more so now.

 

We have to think of a happy time in our past or a happy song when on a downer it keeps stress at bay .

 

I wish you all the best and do not overdo it.

Remain happy when possible as that is the key (Don't tell Steve about row with hubs Win lol) oops you dragged it out of me ha ha

 

Good luck Steve

Regards

Win xxxx  Keep moving forward and remember SMILE when possible

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