Claudette

Compostc, we really ARE lucky! Don't get me wrong, I am not always positive. Since my SAH, my mobility has declined which has led to my arthritis worsening. My memory is still poor, I am still sensitive to noise and movement, and I experience fatigue and processing difficulties, amongst other things.

I'm a different person to the person I was pre-SAH, and I've lost a few friends along the way - people who just didn't want to deal with someone who has a brain injury.

But...I now know who my real friends are, and I now know what is important to me. Sitting in my humble garden gives me more pleasure than I would ever have imagined. And I am grateful for what some people may view as the smallest of things, like someone smiling at me, or showing me random acts of kindness.

I'm SO grateful for this support group. I only come here once a year now, but this group supported me in a way that no one else could or did. And of course I'm grateful that I'm still alive - still able to be there for my children and loved ones when they need me.

So many people don't survive, but we're still here - maybe only for a year, maybe for another 20 years - who knows!🤷🏽‍♀️ But we're still here.🙂 💕

Good morning everyone!

Today is my 7th anniversary of my SAH, caused by two ruptured aneurysms. Things have improved a lot in 7 years; some things remain the same. Some days I feel so unlucky to have 4 aneurysms. (I was told last year that I have 4 aneurysms, not 3, which is what I was originally told, and the neck of one of them is widening. Possible brain op number 3?) But on most days I am filled with gratitude because I have 4 aneurysms and I've survived!

So happy anniversary to me!🥳 And happy day to everyone who has been through this awful trauma and  lived to tell your tale! EVERY day is our anniversary!

Claudette 💕

Thank you everyone for your support and well-wishes. It's so good knowing that there are people out there who can relate to what I'm experiencing and who offer reassurance that this time too shall pass. Thank you.

 Dear All

It's been a while since I've been on this site, but with my recent news, you were the first people I've turned to.

You see, I've just received the results of my angiogram, and it says that they've discovered another aneurysm in my brain, which means I now have 4. I had a subarachnoid haemorrhage in 2015, where two of my three aneurysms ruptured. These were coiled and a decision was made to leave the 1mm unruptured aneurysm alone. 

In 2019, it was decided to that one of my ruptured aneurysms needed more coils to be added due to the widening of its neck. The angiogram that I was supposed to have 6 months after my operation didn't happen until this year due to covid. And now the results show that I have an additional aneurysm,  that is between 0.5mm-1mm in size.

This news has knocked me for 6. I just can't believe that I've got another one. I lost my job in July and I'm struggling to find work, but I've been positive and determined to resolve this, and I have been happy, looking forward to the future. But the news of this aneurysm has knocked the wind out of me and I've sunk into depression.

I haven't told my children as they've been through so much, what with losing their grandparents, my haemorrhage,  and their dad's cancer. But I'm finding it hard to look carefree when my world is falling apart.

I'm not looking for advice - I know that I have to wait for my appointment with the consultant to see what suggestions they make. But what I would like to know is how do you all deal with this? 

I read this book a couple of years ago in my 1st year of recovery. I found it really useful, especially as at that time i hadnt found this group and i really wanted to hear the experiences of others. But i did find it upsetting at times and a bit hard to follow due to my problems with processing. At around the same time i watched the film 'my beautiful broken brain', of which i related to immensely. Not exactly comparable as it is a film focusing on one persons experiences , but it was good to see.

Thank you. It has been hard - in many ways - but we're getting there. Xxx

That's very true, Broncho. Life really IS too short. So much to do and so little time. My children's dad recently discovered that he has cancer - a malignant tumour on his adenoid.

Although we haven't been together for over 7 years, he's still a part of my life and is currently recuperating in my house until after his radiotherapy. We are both grateful for the chance we have been given to live a longer life. Nothing is taken for granted. 

Xx

Ooh...that sounds good. Will defo try that. The perks of subarachnoid haemorrhages!  Lol! Xx

Thank you everyone! I'm a little nervous about flying for the first time post SAH but I'm hoping this will be the first of many. As someone (sorry...bad memory ?) said, "onwards and upwards!" And in my case, literally! Xxx

Happy anni-versary! So sorry to hear about your mum's cancer but happy to hear that music is guiding her through it. Xx

The 21st of august will be the first anni-versary of my SAH. I'm writing about it now as I'll be in Portugal on the day, so hopefully I'll be in the sun and near the sea with a glass of (non-alcoholic) bubbly to celebrate. ?

It's hard to believe that a year has gone by - flown by. I still find it hard to believe that I survived two ruptured aneurysms and one unruptured one, and that I've managed to go from being unable to even make a cup of tea to returning to work. But that's exactly what I've done. So on the 21st I'll be raising a glass to all the SAH/stroke survivors out there and applauding the resilience we have to just keep on going.

So happy anni-versary to me and to every SAH survivor!

Xx

Happy anni-versary!  Love that word! 

It's strange.  I don't know you, yet I have tears in my eyes.  One word I've never liked is 'survivor' - it always seemed so dramatic.  That is, until I had my haemorrhage.  Now it has greater significance to me as we are all survivors.  I have no doubt that, like me, you have had to fight to get to this stage - to have an understanding and acceptance of your situation.

So enjoy your day and raise a glass (preferably filled with bubbly but probably filled with some health inducing liquid) to your many years to come!

x

Happy anniversary!  And I don't say that glibly.  You really do have something to be happy about as you're still here, in spite of the difficulties.  Hope all goes well with your results and that you get the opportunity to celebrate.

x

Wow!  I've put on a ton of weight too!  I've always been a chunky girl, but managed to stablise my weight.  Directly after my SAH, I lost a bit of weight as I couldn't eat, but after that - especially as I was confined to my bed for some time - I started to gain.  I have been watching my diet, and although I'm not brilliant, try to eat healthily, and I go to my local leisure centre (swimming, yoga, pilates, gym...) 4 or 5 times a week,  And I STILL gain weight!  I didn't realise this was a brain injury thing!  So now I know!

Well done, Gilly.  I've been all doom and gloom since my SAH, but I too have reached the stage where you want to shake it off and reacquaint yourself with the world.  I'm not quite there yet, but I'm getting there.  So go out and enjoy yourself!  The world really is a beautiful place!

x

Hi

No, they are based in the UK, but you should be able to access them via the internet: 

Headway The Brain Injury Association:

*  Web address: https://www.headway.org.uk/.  

*  Telephone: 0808 800 2244

*  Email: helpline @headway.org.uk

The Brain and Spine Foundation:

* Web address: http://www.brainandspine.org.uk/

* Telephone: 0808 808 1000 (where you can speak to a Nurse)

*  Email: helpline@brainandspine.org.uk

Both sites have lots of good information on SAH's, so even if you don't speak directly to anyone, there might be something there that will answer your questions. If your questions are more specific, email them.

Hope they are helpful for you.  The aftermath of a brain haemorrhage is such a mind blowing time.  Just keep being positive. 

xx

Sorry... I haven't been reading all of the posts in order; I've just read the last few.  I'm so sorry you've been having a rough time since your haemorrhage.  As someone previously mentioned, everyone who's close to you, but particularly your partner, is living this with you, and it's hard.  It's had a strain on my relationship too, but we're working through it, day at a time.

With all this going on, I'm not surprise you've had 'intimacy problems' with your wife.  No wonder!  You've got a lot going on.  My advice to you is to definitely seek counselling - that's helped (helping) me tremendously.  Exercise is helping to lift my mood too, and when my salary was reduced to half-pay, I got benefits advice from the Citizen's Advice Bureau.  (I'm currently claiming ESA).

But the main thing is you need to talk to your wife.  It's sometimes easier to talk candidly to complete strangers than it is to talk to the people closest to us, but ... you really need to talk to your wife and try to work on all of this together. 

x

Hi Paul

Really glad you've been given the all clear!  I don't know what the others will think about this, but I'm wondering if co-codomol is the best medication for you since you're having headaches.  8 months on from my SAH, I still get bad headaches (and will be going to a headache clinic later on this week).  When I mentioned this to my consultant, he explained that co-codomol (or codeine in any form) can actually ACCENTUATE headaches, so I was told to just take paracetamol.  Just thought I'd mention it...

Claudette x

Hi William

I am fairly new to this site too, and had my bleed about 8 months ago.  I have found this site a Godsend!  Welcome!

x

Hi Jade

After I had my SAH 8 months ago, I scoured the net for any information I could find on my condition.  Rather than put my mind at rest, it frightened and confused me, and left me in that frenzy Macca talked about.  So, I abandoned the net and chose instead to speak to the neuro team attached to my hospital via their helpline or the helplines for Headway and the Brain and Spine Foundation - both found online.  That said, the best people to speak to are those at the hospital where your partner is, so speak to them.

I didn't have a vasospasm, so have no experience of that, but as everyone has already mentioned, Todd's in the right place for the help he needs.  It goes without saying that we're all thinking of you.  Think positive.  Stay strong.  And let us know how he's getting on.

xx

Wow!  I haven't got any more to add to what everyone has already said.  Just want to say that I hope it all goes well and to send my love and best wishes.

xx

That's so true, Kerry.  I have a loving family around me, and friends, but unless you've been through it, or are really close to someone who has been through it, you just don't know what it's like.  I think it's amazing that you went back to work so soon and have been determined to get on with your life.

On this site, someone once said that I need to be kind to myself, and to be my own guru, and that's what I'll say to you.

We all seem to progress at different rates.  What works for me might not necessarily work for you.  Since having my SAH, it's like I'm getting to know myself all over again as in some respects I've changed so much.

I'm discovering what makes my headaches worse and my mood dark; what makes my fatigue and aphasia kick in, and all the other stuff I've been experiencing post SAH.  Some things are funny.  Some not so much.  But the main thing for me is the discovery, and if there's anything I'm concerned about, I ask. 

Good luck with the results of your MRI.  Fingers crossed all is well. xx

Ooh...one last thing...

My psychologist recommended that I watch a film/documentary called "My Beautiful Broken Brain". (It's on Netflicks).  It's about a young woman's first year post SAH experiences.  I watched it last night.  Although her experiences weren't exactly the same as my SAH experience, there were so many similarities.  Worth a watch.

Claudette

Hi Kerry

I had my SAH in August of last year, and had my angiogram in March.  A lot of the problems you've mentioned, I have too - memory loss, slight aphasia, mood swings, headaches, getting things jumbled up.. and I too was worried.  What put my mind at rest was talking to people on this site and talking to my consultant.  I wrote all of my queries down and asked the lot.

I've been referred to a headache clinic, and have been working with a psychologist who is helping me with strategies to help my poor memory (eg using a diary etc).  Although I haven't returned to work as yet (hopefully next month), I have learnt to pace myself so that I don't get over tired and start making mistakes, and for my mood swings, I do a lot of swimming, yoga and use one of those mindfulness colouring books.

Everything has become a lot more manageable.  But, if you're really concerned, speak to your consultant.

1. Black floaters in my eyes weeks before my SAH..

2. Headache for a few days before..

3. Thunderclap headache affecting the front of my head and the top of my neck..

4. Sensitivity to light.

5. Some sort of spasms periodically.

6. Nausea.

7. Falling in and out of consciousness.

From the thunderclap headache to me being rushed into hospital by ambulance, it was six days.  

x