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Alison Q - New and concerned!


Alison Q
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Hello everyone.

It is very early days and I am very anxious about what has happened to me and what might happen next! I have joined your Forum and feel this is the place for me! I am really looking forward for any information.

Confirmation: "Large Acute infarction of Middle Cerebral Artery territory, 13mm aneurysm of left MCA bifurcation - thrombosed". Basically they say it was an aneurysm that ruptured causing a subarachnoid haemorrhage and I also had a stroke? :confused:

I was taken by ambulance to Leeds General Infirmary and was 1 day in Intensive Care, 8 days in High Dependancy then 3 more weeks for the Neuro Ward. However, they haven't done any operation yet and there seems to be lots of discussions and debates over what to do! They told me I was rare - I have stopped bleeding and have a clot but for the moment it has remained the same. I was told I was stable, GCS15, moving all limbs normally, clinically well so I was discharged on 4th November 2013.

However, I have been home for 3 weeks and my headache is permanent and I take paracetamol and codeine every 4 hours. It is awful and I feel nausea. My neck hurts, my eyes hurt, I am dizzy and kind of spacey, I am tired all the time. I have problems with my speech and short term memories and just lose loads of words. I can write well and hear fine - but seems to be some reading and spelling too. They get worse later in the day. I am seeing a speech therapy lady who is lovely! Of course, not allowed to drive and to be honest I feel ill anyway so stay indoors.

Thank you for listening to all this - really appreciate this site and I hope that many of the friends on here are able to give me some advice and information and make me feel better :-D

Edited by Tina
Added name to title :)
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Hello and welcome to the BTG club, (although we frequently tease each other that this is not a club we’d necessarily choose to join!)

I had a SAH in 2009. I spent five weeks in hospital as there were complications with hydrocephalus. That corrected itself without the need for me to have a shunt fitted.

I remember the time when I came out of hospital. What a bizarre experience that was. I felt very disconnected from my surroundings, almost feeling like an imposter in my own body. I didn’t even feel comfortable with my own image in the mirror- it was as if I was looking at someone else. I didn’t feel comfortable with my own identity and felt that I had lost my idea of ‘self.’

I remember the headaches which seemed constant – and don’t start me on the fatigue. Oh my goodness, how debilitating. I remember crawling to the kitchen one day because I didn’t have the strength to walk, (I had run a marathon 8 weeks prior to my SAH!) My head also felt fuzzy, like I had cotton wool in it. Altogether, not the best time of my life!

If I could go back in time, there are a few things I would like to advise the old me upon after my SAH. I did many things wrong and to be honest, the old me could have treated you to a master class in how not to recover from a SAH.

I was in this mad rush to get better – and not just ‘better’ but to be 100% again. 99.9% would have been a failure, so I had to push, push, push.

I didn’t listen to my body, believing that I was weak spirited and lazy; and so began this cycle of pushing myself too hard, but crashing for days afterwards.

Gradually I learnt to listen to my body. My brain was sending me cues and when I listened to my brain and took notice of the tiredness and rested when my brain was asking for it; I noticed that I felt better on the whole. It just took me a while to get into the swing of a life that is slower paced.

12 months after the SAH, I joined Headway who have been fabulous. (They are a charity for people with brain injuries. Don’t be alarmed by the term ‘brain injury.’ It includes people like us who have had the brain injured by some trauma and are recovering from that.) I have group therapy there with a neuro psychologist and those sessions are invaluable to my emotional health.

Anyway, skip forward to 2012, in August of that year I had my first baby. A little boy who runs me ragged! But before I got to this stage – I had to rest lots to give my brain the best chance it could to heal. This doesn’t just mean physical rest, but emotional rest too. The brain will find it a greater effort to work through stress etc. (I know that being ill can be stressful, but perhaps the stress and anxiety of illness is a subject for another post.)

Your brain has suffered a very recent trauma and is struggling at the moment. Your tiredness is your brain asking you to rest up and take it easy. It won’t be precisely like this forever. (But if you are like anyone else here – you will probably look back at this moment in a year’s time and think, ‘why didn’t I rest more when I came out of hospital!?’)

L xx

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Hi Alison,

Welcome to BTG and all I can say is what happened to me and hope it's of help so here goes.

I had a SAH in July 2009 and cannot remember hardly anything until 2010 when shunt was fitted.

It was like a light turning on in my brain.

We were told I'd not walk again by OT's, hubby should put me in a home, but they/family never gave up hope unlike the OT's.

I can walk with bum out slightly, I can talk the hind legs off a donkey and I am so happy to be alive.

So do not get stressed and keep calm its a long haul but we can make it.

Go to Docs or hospital if worried, we must not stress ourselves.

So be happy when possible and sing (my answer to all is to sing and be Happy)

Good luck on recovery xx

Love

WinB143 xx xx

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hi Alison

Sorry to hear about recent events for you, its a very scary time but Lin and Win ( sounds like a song) have already given you some very good advice and the bit I will echo is not to rush yourself.

none of us can give you medical advice so if you are worried or have questions about the treatment and whats next then you should phone your team at the hospital, they should have given you information when you left but many dont. Get a friend to phone up if its easier and find out how they can and will suppport you going forward.

the first weeks after discharge are hard. I had surgery plus coiling but the effects of the bleed alone will leave you feeeling bruised, shaky and with a headache that is just awful. Drinking lots is important, as is eating reguarly and getting plenty of rest. There is no prize for doing lots, it will just use up brain power you can ill afford to use right now. So gentle things, in short bursts with rest whenever you feel you need it. Dont over stimulate your brain, be as gentle as you can with it.

Crying was a huge relief for me , I didnt bottle it up as it hurt too much and I kept a little diary each day. I have suggested this to other people as it really helped me to write down how I felt each day and what I acheieved, even if it was only something like making a cup of tea unaided.

take care now

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Hi Alison,

You are nothing short of a miracle!! The stories I read are fascinating and the courage of everyone on this site is incredible. I had mine in April. I am seven months along. They never found the site of my bleed. I believe we all know the fear of "what if". It is a struggle.

I remember all too well the pain, pressure, dizziness (I still get that) and headaches that are forever, it seems. Can't get comfortable and just cry. I still cry. I gave my testimonial at church a couple weeks ago and was so teary-eyed through most of it that I must've sounded like a blubbering idiot! But, the need to release your fears, anger, sadness, and pain are important. They need to go somewhere.

Please be good to yourself and be patient. It's not a broken arm, it is your brain and it needs lots of time to heal. Others need to know and understand that as well.

iola

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Thank you for your lovely messages. It is so nice to hear your experiences and it really helps me when you make suggestions. You are all correct about the relaxing and not doing too much, I have to follow your advice. And I liked the idea of getting family or friends to ring for me, I find talking on the phone quite difficult and things get worse when finding the words and then become stressed.

Thank you to you all xx

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Hi Allison.

Welcome to BTG. This is the place to be for support advice and chats.

The folks here got me through some of my worst times during my recovery.

I noticed you mentioned speech and loss of words. That's known as aphasia. I have developed that. & it is heavily affected by my emotional state.

Most of the symptoms you have mentioned, I can relate to, as can most us on this site. So everything you are going through is fairly "normal".

like the others have said. We are here for advice and support and a natter but the medical stuff is best left to the professionals.

Good luck with the recovery. You are already on the right road.

Ern

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Hi

May I begin by saying well done for posting....I wasn't able to at first, simply the best way forward for you.

Must be terribly hard to understand everything, I too was transferred to LGI. They let you out and don't tell you anything, I was unable to accept what had happened. I had and SAH, Jan 2012 and a clip then June 2013. You are a brave lady and you will find the BTG site so amazingly helpful, it answers every weird question you may have....ask away!

When I was released I couldn't cook, I slept a lot...spent a long time anywhere in the house where I went as id no idea what I was doing. My mum helped and we spoke about everything all the time, it helped me understand and accept what had happened, I was only 35.

My anni was on main left artery, I have another small one on the opposite side, hey ho it doesn't bother me...

I still have pain now...the more I do the worse it gets, simply like your brain telling you to stop...The fatigue I have is crazy, as I was always on the go before and now im a totally different person....a better one!!

I took codeine and para every 4 hours for about 3 months before I started to not need all the time, hate the way they mess up with your stomach...

Read up on here and any question...don't hesitate to private message me.

Take care xxx

Edited by Tina
Line spacing for easier reading :)
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I love to hear from everyone and their experiences - and now there seems to be a few of us who were transferred to LGI. But even more exciting is that Doodles is from Huddersfield - and that's where my horses are! :-D

This afternoon my eldest son took me to see my horses and I sat in the field (cold and muddy) and had some cuddles. Not for long and of course I get tired - but it means so much to me. The worst thing for me is not able to drive and therefore I can't see them every day, this was the "old me" who drove every day to groom, poo picking in the field, ride and feed! Somehow I need to accept this and stop being upset about it.

But today was GOOD and my horses were fine. And you know what? They didn't care that I talk rubbish and get some wrong words :biggrin:

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Hi Alison,

I can imagine the time with your horses yesterday was very theraputic.

Acceptance is probably one of the most difficult challenges we all face. Experiencing a SAH is such a life changing event. Most of us were high achievers, rushing around living busy lives before the SAH and to deal with coming to what feels like a dead halt post SAH is emotionally very diffcult.

You will get there - one day at a time.

Take care,

Wem

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