Newbie to headway

Hi, I am so happy to have discovered this site. I am lost and frightened and need help. I suffered a subarachnoid haemorrhage with absolutely no warning. I was in theatre within hours and very ill for a while. 3 days before Xmas I was rushed back in with fluid on my brain. I had to have emergency surgery again and am now fitted with a shunt.

I have been home for 6 days now and I have so questions and I'm frightened about everything.

I desperately need to talk to others who have been in position who are able to advise me. Thanks for reading xx

9 Replies

  • I am sorry to hear your news. I had an ICH in 1997 & the first few weeks after are difficult whilst you are coming to terms with what has happened. My ICH came out of the blue at 2pm on 14th November 1997. I was just about to leave home for a concert in London so I know the time. I now know what the horrendous head pain was.

    The only advice I can offer is to bombard your neurologist with questions. I've asked everythig from what's the prognosis to how big the scar is, where did the blood go, why am I epileptic, why have I lost part of my sight & many more. Poor man must've got fed up with me but it was important for me to know as much as I could. To make it easir for me I have decided to try to treat it as an interest as well than a condition. I research everything I can about brain injury including watching as many programmes on the telly as I can find. I found it took the fear away & replaced it with curiosity. I still struggle a lot with the symptoms & get really fed up with it but you do adjust .

    Good luck & don't be afraid to to ask the group anything, nothing is irrelevant.

  • No neuros will answer my questions or even examine me properly. Tried to guess but always wrong/my images been fiddled with/cropped, why? Silly latest 'MRI' (odd, so jerky machine juddering and allowed to keep metal zip, hmm) they wrote 'paranoia' on form toMRI person. What's the pint of not writing true stuff etc.? Sick of trying to explain (why should I have to?) how this feels and why I need to know,get proper diagnosis and info. Worn out with it. Bad enough trying to learn to live with wrecked brain and body let alone all this extra on top. Stuck in complete nightmare but nobody cares and some laugh when hurting me and old friend laughed haha when woken 3am (and couldn't get back to sleep = way overtired) with terrible chemical stinks from bad storage heaters. Why's that funny to hear? What's wrong with people?

  • Hi and welcome to this site. It's been a life saver (so to speak) for many of us.

    Ask whatever you need to and one or more of us will gladly offer our best help and advice. There is of course the Headway helpline who can offer invaluable professional advice and is the helpline no. and email address .....

    Free helpline 0808 800 2244

    I appreciate you are going through a traumatic, unfamiliar and scary time, but please don't be frightened....we will help if we can....take care

  • Charlii I can only agree with everything Zeblet and Leslie have said, yes it is scary, especially when it happens without warning. I also remember Day date,time and the pain, even the journey to emergency. I don,t remember transfer to another hospital where I was operated on or the following 3 days before waking up in ICU. Knowledge is power they say - and yes I,ve also trawled the internet for information and help and find it everywhere except here in France. This is why I use headway, the support I get on here from everyone is amazing, especially over this last Xmas period, please don't be frightened to use us as often as you need or want. We are all in this together to offer whatever support we can x x

  • I suffered a sah 3 years ago today, time seems to be something that you think you do not have but trust me, time is precious for everyone including us so enjoy every minute. You will never get all the answers and when you get some they will be difficult to understand them, I could answer some but not all but feel free to ask!

  • Hi Simpy and thanks for your reply. Could you please tell me your story with your Sah? X

  • It was three years ago on the 3rd January, I awoke on the bathroom floor and recalled a swoosh feeling in the top front of my head, this was followed by a prolonged increasing headache that led me to seek a doctors opinion.

    Unfortunately no doctors were able to see me so I was seen by a nursing practitioner who diagnosed the flu, I have to say that I did not fully explain what had happened to me as I had actually forgotten!

    The following day after no sleep I did see a doctor and was sent immediately to casualty where my condition worsened with my balance going and headache increasing massively. The casualty doctor sent me for a CT scan confirming that I had suffered a SAH.

    I was sent from the casualty department to a different hospital by ambulance and had a coiling procedure the following day, this meant 7 days in high dependency and a further 7 days in observation before being discharged home. I still suffer daily headaches and take a variety of drugs to keep them down with some success. I do have problems with guilt and depression on occasions but in general lead a normal life all be it slower than before. I have a further two aneurysms on my external carotid artery that are not life threatening but will be monitored, these do mean more worry but not as much worry as the coiled berry Anneurysm.

    The effect on my wife and children is something that I have difficulty understanding, I don't know why and no one can answer this for me but I do know that they worry about me a lot.

    Getting questions answered has always been difficult and I mostly look on the internet if I have any, I don't dwell on why me as I can't see the point!

    I am getting forgetful but guess that getting older has something to do with this.

    I hope that you find this interesting or and helpful.


  • You're in the right place and I support the advice to make use of the help line.

    Things do get better, you just need to give yourself time.

    C x

  • Hi charlii. I'm wondering if you have people around for support when you're feeling vulnerable ?

    I had a sah two years ago..........hospitalised for 2 months ......but

    didn't appreciate the gravity of events for my family 'til I got home. But for me, there was complete acceptance of these events for two reasons. Firstly, the only thing I can remember from those first few weeks was asking the paramedics to please 'tell Helen & Ken that I love them' (daughter & son) because I was sure it was the end for me. So when I realised I'd survived it was a massive feeling of reprieve.

    Secondly, my first and abiding memory of hospital was being asked 'do you know where you are?' & 'do you know what has happened to you?' I had it 'drummed' into me several times daily, every day, that I'd had a haemorrhage, which meant that as I became increasingly lucid, my predicament neither surprised nor alarmed me.

    There are now balance and memory problems and I'm always quite tired, but it is what it is and I'm just grateful for everything that was done to get me back into living again.

    I hope accounts from others are helping reassure you charlii that life goes on after sah, albeit a bit slower ! :-)

    Love Cat x

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