Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.
julianc

Introduction from a newbie SAH survivor from the UK

Recommended Posts

julianc    70

Dear all of you from far and wide

 

Thank you so much for sharing your experiences here.  My SAH happened about 4 weeks ago (on the night of Sunday 26th October 2014) and I am 2 weeks out of hospital from what the consultant on the penultimate day explained was a "Perimesencephalic subarachnoid haemorrhage" ... a bleed that, if you had to choose a subarachnoid haemorrhage would be the one everyone should select. ;)

 

It happened to me whilst sleeping in our youngest girl's room because she had a cough and has a tendency to vomit if she coughs too much.  She's 20 months old.

 

Me? I am male, 44 years old, ex light smoker (of 3 years) and not very physically active.  No family history of SAH or the like.

 

Its kind of daunting coming to terms with the future and what it might be like for me and my poor injured brain.

 

My main symptoms since leaving hospital have really been the fatigue after a few hours of moderate human interaction, never mind actual paid work.  Last weekend we spent the weekend at a nearby family resort (it had been booked for ages and was a long awaited chance to catch up with friends from years ago with their children too).  Anyway, a large chunk of my weekend was spent sleeping in bed.  I didn't partake of any of the activities on offer, but was quite alert and my old me when actually roused from sleep.  On the last day I overdid the staying awake bit in order to share in the farewell lunch.  Ouch!  That taught me about my new and current limits!

 

Not complaining though,  So far I have been very lucky.

 

Lucky that it was a small leak and not a big burst.  Lucky that my wonderful wife realised my staggering into our bedroom and repeatedly saying "I can't do this" over and over again, whilst slurring my speech and before collapsing on our bed was not a regular "take some paracetomol and chill" type of incident.  Lucky the ambulance came quickly and though I was perfectly lucid diagnosed me as needing to be taken to hospital for further evaluation.  Lucky that I live where medical bills are not a concern whether employed or not.

Lucky that my wife followed the ambulance to the 1st hospital and wouldn't stop badgering them to get me into neuroscience specialist hospital pronto.  Lucky that John Radcliffe Hospital in Oxford, UK is not too far and is just such an establishment.  Lucky that everything went went with the surgery, drainage tube, and that the consultant after 2 weeks eventually said "You are far too healthy to be here.  What say you we get you out and send you home?"

 

This site is a great resource for someone trying to find out about what the future can hold.  I'd never heard of this type of brain haemorrhage before.  Never knew the different variations in the severity and recovery. So I thank the moderators and creators of this site for having the idea and perseverance to create and maintain it.  Thanks to all you contributors for sharing your experiences as they help enlighten a sometimes murky future.

 

I will shortly post comments to posts that have helped me and where I feel I might be able to contribute but I wanted to introduce myself first.  Well, it would be rude to just interject wouldn't it?

 

All the best to all of you and thank you for being a great sight/site.

 

Jules

  • Like 3

Share this post


Link to post
Share on other sites
julianc    70

Oh and I just found out that during my waiting time at the first hospital I vomited, copiously I might add.  So tick the box for nausea post SAH.

I do not recall any of this bit nor of the journey to Oxford from Reading, nor of being told this shortly after surgery.  Tick the memory loss box too.

 

Textbook.  Great.

 

An interesting and slightly funny little tidbit.  During my stint in High Care for a few days I actually imagined we had been shipped to the Congo or some other part of Africa!  Don't ask why, its embarrasing!  The NHS has outsourced a fair bit of its service delivery but I was mildly surprised that it was economically viable to ship us to Africa to recover.  I wasn't in a position to argue so I didn't make a fuss.

  • Like 5

Share this post


Link to post
Share on other sites
iola    194

Hi,

Mine was non aneurysmal as well. I did not have surgery though. I did have three angiograms to confirm it was not an aneurysm rupture. you will learn so much in the upcoming months. Some good and some scary. The first year is really a year of coming to terms, which I'm still having trouble with a year and a half later.

Rest your weary brain and drink plenty of water and heal.

i

Share this post


Link to post
Share on other sites
Winb143    5,459

Welcome Jules,

 

I had an SAH in 2009 was well out of it and still cannot walk too far, but I was told I'd never walk so to me

every step is a bonus. Now doing 60 to 100 yards tomorrow  who knows!!

 

You will get stronger and look back in 4 weeks then 8 weeks see how far you have come on.

 

It's a long haul but we are here !! Life is good xx

 

Cheer up and keep happy.

 

All the Best

 

WinB143 xx

  • Like 1

Share this post


Link to post
Share on other sites
julianc    70

Thanks for the responses and suggestions Iola & Win.

 

Copious water?  Check.  3 litres per day is my target and I am on track again.  Alcohol is still off limits at least as far as I am concerned.  Self imposed sanction but I guess I will test the 'waters', so to speak, in the next few weeks.

 

Going well so far.

  • Like 1

Share this post


Link to post
Share on other sites
Tina    7,759

Hi Jules a very warm welcome to BTG :)

BTG has been a Godsend for many. Like you, either knew nothing about SAH or were sent home from hospital with little or no information whatsoever on what to expect or how you may feel.

Glad you found this site a great resource of information and we look forward to hearing more from you.

Take care.

  • Like 1

Share this post


Link to post
Share on other sites
julianc    70

Tina re your comment "sent home from hospital with little or no information whatsoever on what to expect or how you may feel."

Were you there with me? I didn't see you but you must have been because you nailed it. Yup. NO INFO AT ALL.

Zip, zilch, nothing, nada, rien.

Just a wave and longer wait for the Tramadol.

Can't fault the surgery, or care during the stay but the wave off was lacklustre and lacking in useful info to prepare one for the future.

Particularly the fact that the future alongside these after effects might be a prolonged one and not the usual "right as rain in a few weeks".

  • Like 1

Share this post


Link to post
Share on other sites
Daffodil    4,302

Jules, great you got the help you needed so quick, I think it makes a huge difference and JR is a great centre of excellence I hear from friends who were treated there.

 

Scary time for you and the family and tempting though it is to jump straight back in at the pace of how you ran stuff previously I can only caution you to turn the dial right down and learn a little pacing right from the start. It's boring but having a steady routine is really helpful. Look for your signs that you are tired and heed it and rest, the water is so important but sounds like you have nailed that, alcohol , well you are a braver man than me as I still can't face more than one!

 

Your scar is a vivid reminder that this survival of yours is not a trifle to be sniffed at but respected with time and care and patience for the amazing work your brain is doing to recover from a bleed and then surgery

 

Leaving hospital with no direction, I was luckier than most as had access to great support if I needed it but still given no idea what to expect, the difficulties I would face and given no help to rehabilitate, I had to find that all myself with the help of Headway , this site and my GP so it's good you found us early on and I hope it does help you find the rhythm of recovery that suits you.

Best of luck

  • Like 1

Share this post


Link to post
Share on other sites
julianc    70

This site has been immeasurably useful. A distillation of real life experiences living post NASAH few doctors could ever hope to relay. Perhaps we here are better/worse off than the total population of NASAH survivors but at least its something compared to nothing I got when I left JR.

 

I wonder if doctors now think that if they see patients use a smartphone that they'll obviously use the net to research so doctors don't bother explaining anything to them anymore. Plausible. If I was in that role I might.

 

That being said, and no disrespect to all present here, I am glad it was the doctors and nurses focusing on the surgery and post op care, leaving the task of explaining life after NASAH to you all!

  • Like 1

Share this post


Link to post
Share on other sites
julianc    70

Yesterday was good but its not a good day today. Woke up feeling bad and have improved only a little.

Its a general low level headache that is persising despite paracetamol and tramadol doses.

Mild discomfort so please don't fret too much for me.

Going somewhere cool, quiet and dark for a while.

Share this post


Link to post
Share on other sites
Winb143    5,459

Well Jules,

 

How are you today?  Please please say "oh much better Win".

 

Do not stress too much and if headache persists ( keeps on, went posh on you then) see Doc to

put your mind at ease. 

 

Be Well and have a good weekend

 

WinB143 xx

  • Like 2

Share this post


Link to post
Share on other sites
Louise    1,283

Hi Jules

 

warm welcome to the site, glad that you found us.

 

take things easy relax, listen to your body when it says rest then do so, keep well hydrated helps headaches...

 

take care

  • Like 2

Share this post


Link to post
Share on other sites
Ponigirl    45

Welcome Jules- I had my non aneurysmal SAH Jan. 15, 2013 I was recovering from bronchitis and blew my nose and my brain exploded!!  Then I started throwing up violently!! I'll bet this sounds a little familiar? I was in ICU for 2 weeks, then rehab (only a few days) and have no memory of any of it. I do not have any memory of Christmas (2012) or the new year and still do not. I also do not have any memory of Jan-March 2013. And now my memory is not real good for any amount of time. 

 

The first year is full of changes and acceptance. I wish I had found this site a long time ago!! I would suggest you read all you can, I listed a site below and also Brainline.org is another good one. 

 

 

Are you going to return to work? If so when? (You don't have to answer- if I'm being too nosey) The standard recommendation is not to return before 3 months. I wanted to return sooner but I'm glad I didn't. I do accounting and it was VERY difficult!!! I did end up going out on disability, because I could not handle it.

 

I think this one is the best because it focus is just on SAH, the only one I've found like that. Keep us up to date on your progress. I wish you the best of luck.

  • Like 1

Share this post


Link to post
Share on other sites
Carolynusa    924

Hello Jules!  So sorry we had to meet you here but SO glad you found the site.  I had sah, coiling, 2 clipped, etc. in June this year.  In hospital for 7 weeks.  When I came home I couldn't figure out what in the world was happening with me - especially in my head.  Scared me to death.  I found this site, used key words for my symptoms, and found every one of them here.  I also met some very nice people here and am grateful for that.  

 

Sounds like you were very "lucky" in getting treated in time and at the right place.  Sometimes we are graced with that kind of luck in moments of trauma.  Day to day life doesn't always seem that way.  

 

You'll feel a lot of different things.  Don't let them scare you.  Visit here first.  You'll be amazed at what these wonderful people have been through.  When people ask me how I am doing I sometimes feel like just laying it all out there and it isn't very pretty.  At the end I always get to say "check out BTG and you'll see I'm not  the only one - and they are here to tell us about it.  There is hope.  There is a future."

 

Please take good care of yourself.  Go slow with the things you think might be tough for you.  You sound like a strong person.  Use that strength to "soldier through".  Glad to meet you Jules.  Keep us posted and take one day at a time.  (I know I sound like Norman Vincent Peale or something.  Can't help it.  It was a right brain injury.  hahahaha)

 

Carolyn 

  • Like 3

Share this post


Link to post
Share on other sites
julianc    70

Well Jules,

 

How are you today?  Please please say "oh much better Win".

 

Do not stress too much and if headache persists ( keeps on, went posh on you then) see Doc to

put your mind at ease. 

 

Be Well and have a good weekend

 

WinB143 xx

Hi Win

 

YUP, much better Win.  Much much better.  Thank you so much for your concern, sorry to have potentially worried you with my lack of response.  Just a bit busy.

 

Thanks again, all good.

 

Julian

  • Like 1

Share this post


Link to post
Share on other sites
julianc    70
Are you going to return to work? If so when? (You don't have to answer- if I'm being too nosey) The standard recommendation is not to return before 3 months. I wanted to return sooner but I'm glad I didn't. I do accounting and it was VERY difficult!!! I did end up going out on disability, because I could not handle it.

Not at all too nosey Ponigirl, I hope to return in January 2015 (just to be precise).  Initial meetings and discussions with people seem to suggest that I am indiscernable from pre NASAH Julian, barring the fatigue which I hope will continue to improve.  Time will tell.

Share this post


Link to post
Share on other sites
julianc    70

Sounds like you were very "lucky" in getting treated in time and at the right place.  Sometimes we are graced with that kind of luck in moments of trauma.  Day to day life doesn't always seem that way.  

................................

Please take good care of yourself.  Go slow with the things you think might be tough for you.  You sound like a strong person.  Use that strength to "soldier through".  Glad to meet you Jules.  Keep us posted and take one day at a time.  (I know I sound like Norman Vincent Peale or something.  Can't help it.  It was a right brain injury.  hahahaha)

Thank heavens for Google where I was able to look up the Norman Vincent Peale reference and thus maintain an air of being well informed and well read.  :)

 

I have been INCREDIBLY lucky.  I know it.  No 2 hours of wakefulness (still the same pedant I was pre NASAH) go past without me saying that out loud or recounting it to anyone who cares to listen.

 

Rest assured I am proceeding at the speed at which my brain allows me to.  If it says 'sleep' or 'rest' that is what I will do as soon as possible.

  • Like 1

Share this post


Link to post
Share on other sites
julianc    70

Folks both near and far (UK, USA and Australia it appears), your support, words of encouragement and advice based on your own experiences are very very welcome, uplifting and helpful.

  • Like 4

Share this post


Link to post
Share on other sites
Super Mario    17,300

julianc, thank you very much from the forum and all of its members for your complimentary words.

We all need to thank Karen for instigating this forum in the first place.

  • Like 4

Share this post


Link to post
Share on other sites
julianc    70

The perfect end to a great day. 23h and doing the dream feed for the little one, been up almost uninterrupted since 12:45pm.

Judicious application of ''s law' (a darker Murphy's law for the colonials - I jest - love you guys) makes me think thank tomorrow will be pay back day.

I will keep you posted.

Night night all.

Share this post


Link to post
Share on other sites
julianc    70

Good morning everyone. In fact a VERY good morning.

So happy to tell you that I had a restless night...

Little ones woke up twice tonight... AND SO DID I TO HELP MY WIFE BATHE THEM!

This morning we rushed about getting them dressed and ready for nursery on time as the eldest has a nativity rehearsal that we as pushy parents cannot afford for her to miss lest it costs her her big chance... (She's almost 4!)

 

Feel normal!

But keep thinking pay back is just round the corner! Keeps me focused and grateful.

Hope you all do well today with your own agendas.

So happy I could hug everyone!!!!!

Julian

  • Like 1

Share this post


Link to post
Share on other sites
Super Mario    17,300

Just because you feel good today still do not push yourself, still take it easy. Many of us have made that mistake and caused us to take a step back.

Good luck to your little one , I am sure she will be wonderful at the rehearsal and when the play goes on show you will be bursting with pride and no doubt with tears in your eyes.

  • Like 2

Share this post


Link to post
Share on other sites
julianc    70

Just because you feel good today still do not push yourself, still take it easy. Many of us have made that mistake and caused us to take a step back.

I agree, hence the constant reminder that payback might be just round the corner.  If my brain starts to say stuff like "take a break" then a break is taken.  None the less I am enjoying the semblance of my previous life!

 

When my brain wants to make itself heard it feels like someone just pulled the plug on my energy.  One moment absolutely fine, the next... someone flipped my OFF switch, my shoulders slope, my grin fades, and I am running on reserve power until I can get to my room, and the quiet and the dark.

 

Thank you for the words of caution.  Rest assured one ear is always listening to my brain.

  • Like 3

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now