Karen

Good luck Poppy, thinking of you today! xx

Good luck Kelley and hope that you get all of the answers that you need. xxx

Not heard of it on the site, but from what I've read, sleep disturbances apparently can happen with a brain trauma.  Might be worth asking your Doc about it.  I used to sleepwalk as a child pretty regularly .... but not now. Are you on any medication that might affect your sleep?

Hi Kelley,

I know how you feel, as I discovered that I have an abnormal artery that may or may not turn into an aneurysm (exact opposite side of the coiled one) ... this was just blurted out when my notes were being hastily read out aloud by an incompetent Doc at my local hospital..... I was so shocked that I just sat there....whilst he read my notes like a shopping list and basically just wanted to get home for his tea.

This was a few years ago now, but it wasn't what I wanted to hear at that stage of recovery. I followed it up with my GP once I felt more rational and yes, this information is on my notes .... now to be honest, I would have preferred to have been given this information from the start, rather than to discover it like I did.  My GP just basically dismissed my concerns and asked me why I thought it could turn into an aneurysm?  D'oh, because it can! grrrr! Maybe he was trying to be kind, so that I wouldn't worry ... who knows!

It took me a while to come to terms with the news and it's horrid to deal with.  It leaves a lot of unanswered questions that I feel I have a right to ask about ... I'm due back for my 10 year scan in 2015.

Sending hugs and love Kelley ... I know how you're feeling. xxx

I still get the weird smells Win and I've only just started to drink coffee again ... anything stinky just hangs about up my nose for quite a few hours after .... it's definitely a weird one and I've taken to keeping a body spray on me, so that I can give myself a quick squirt and smell something decent! Good luck and let me know if they find out the cause. xx

Fabulous news Scott and so happy for you!   and I've known you from my early days post SAH from Wessex Neuro/Southampton Hospital  and probably before I started the website or just after and we met at a pub in Basingstoke. I can remember you having taste issues or losing your sense of taste .... but you could imagine what crisps tasted like ... was it cheese and onion? ... Think that people like yourself and what I learnt from you all, pushed me forward in developing the site.

I think that it's lovely that you've met somebody who makes you feel happy and for being you ... irrespective of the SAH ... must admit that I find myself a bit of a challenge, let alone giving advice to somebody that's further forward in terms of years than I am .... however .... Be patient is one of them... Short term memory isn't always good ... Fatigue often rears its head ... I'm sure that others will add something to this, but so very happy for you! xxx

Casey, I think that the only people that are being monitored are those that have aneurysms which need checking ... which is why I'm due for a 10 year check in 2015 ... as still have a neck left on a coiled one and an abnormal artery on the other side of my brain. xx

Poppy, I'm due for a 10 year scan in 2015 ... have an abnormal artery on the left hand side of my brain and still have a neck on my coiled artery ... if I need more surgery done, then I will go with it ... to be honest, after all of these years of worrying about the "what if's" ... I'll be happy enough to get it over and done with, rather than wasting another moment on it ... I wish you well and sending hugs and love to you.xx

 

Hairy Biker Si King has spoken for the first time of a ‘life or death’ dash to surgery after suffering a serious brain aneurysm.

 

King, who presents the popular food show with Dave Myers, said he had battled severe headaches for four days before seeing a doctor three months ago.

Read more: http://www.dailymail.co.uk/news/article-2664192/Hairy-Biker-life-death-operation-brain-aneurysm-battling-severe-headaches-four-days-going-doctor.html#ixzz35I2TU0pd 

Follow us: @MailOnline on Twitter | DailyMail on Facebook

Hi Poppy,

Hope that you're putting your feet up. 

I bruise easily and it was tender and a little painful for a few days in that area and when I walked ... definitely worth mentioning it to your Neuro Nurse re: burning sensation. xx

You're welcome Jane and hope that it's helped.... glad that you're feeling a little calmer.  I really hope that the medics treat you a little more kindly in the future ... won't do them any harm if you remind them, as in this is personal to you and just not a job and you're also in shock with the whole thing too. xx

Jane, both Daffodil and Paul have given good replies.

I've had good recovery over many years and often the brain will find different pathways .... it just doesn't stop at a certain point and you should see Robin improving and as he's only at 12 weeks.  You may even find that once he gets home, that it will give him even more incentive to push forward ... 

I hated every minute in the hospital and I was only in for a couple of weeks.... plus I experienced quite a bit of muscle wastage and was like a rag doll when I left.  I also had to use a wheelchair to get out and about for quite some weeks.  I could manage walking from room to room around the house, but not much else.

My husband had to put up grab rails in the loo and bathroom ...I still have one in the shower as I find it handy if I get a dizzy spell and balance isn't too good and I can shower one handed.  

It will get better ....  ignore the crassness of one idiot who doesn't know what this is like to experience, take the help that you and Robin will need and push forward. 

It's no wonder that you're feeling upset, you've had a tough time and could do without insensitivity.

Sending hugs xxxx

Oh Janet, I didn't realise, that's rotten for you. Hope that your Consultant can help you out  .... the very best of luck for Friday.  xx

Congratulations Janet with the new Grandchildren! 

Really sorry though to hear about your other health problems and hope that you manage to get ill health retirement .... not nice to have to deal with the stress and hope that you get it sorted soon. xx

We, the survivors.   Brain aneurysms.  Those little “bubbles” that form within the arteries/vessels in our brains.   Some of ours decided to burst.  We then suffered what’s called a subarachnoid hemorrhage.  We survived strokes, seizures, emergency (probably more often than not, since these “bubbles” usually go unnoticed until/unless they rupture) brain surgery.  If we were fortunate enough, our aneurysms were caught before they could rupture.  However, we are all on an uphill battle, whether we ruptured or not.  We are strong.  We are fighters.  We are here to speak and hope that you understand what we’re trying to say.  Here are some things we would like you to know.

 

 

To continue reading more of this blog written by Faith, by fire, please click on the following link:-

http://faithfueled.me/2013/04/22/this-one-is-for-us/comment-page-1/#comment-203

(Submitted by BTG member Gill C)

I ended up having to be weaned off mine extremely slowly (over many months) as experienced pretty bad withdrawals symptoms and plus the anxiety of having a seizure whilst doing so ... I was slow but sure and all was eventually fine and my confidence was gradually rebuilt and the anxiety eased and then stopped.  Takes time both mentally and physically.

The very best of luck to you both. xx

Original posted in Your Story - http://web.behindthegray.net/index.php?/topic/538-your-story/page-10#entry39927

Sometimes I have a little commentator in my head and because I am in my 40's and I have regular aches and pains it will say.... 'great, that knee is hurting today' etc.

 

On 3rd February 2011 at 2.40pm whilst doing some browsing in shop it said 'OH YES!!!!! ...... THAT'S AWESOME!'

 

A feeling of dread came over me and I knew it was bad, my brain felt like it was been squeezed to the size of a walnut and I had to sit down for a minute. I was going to call out and ask the shop people to call for an ambulance immediately but I didn't. Because I am a 'tough' Yorkshireman I thought, get over yourself, stop being soft. So I decided to leave the shop and go home.

 

After walking about 20 paces my neck began to stiffen up terribly and I was in a proper state, staggering a little and almost blacking out but I got into my car and thought to myself to man up and travel to the doctors.

 

My neck was 95% stiff by the time I managed to move off, this is about 3 minutes after initial attack and by this time I had now decided to drive straight to A&E.

 

I drove for about a mile and got to a junction to turn left and could not look right because my neck was so stiff. 

 

By this time I was in a proper state and I thought I was going to die there and then..... and it was only at this point that I went 'soft' and called for help on my mobile. Picture if you will readers - a fellow in his brand new car - not knowing where his hazards are (lol), at a junction, writhing in agony, tears rolling down his cheeks with sweat on his brow and trying to explain his location to a 999 dispatch clerk who could not work out where he was !!!!!!

 

She eventually put me through (seemed an age) to the ambulance people who knew where it was immediately. To be fair she then gets back on the phone and brilliantly helped me through the waiting time until the ambulance arrived. I definitely thought I was a goner at this point and found it amusing and ironic I was going to die and not know the cause, I guessed brain tumour (never heard of SAH before). Because I didn't know where my hazard lights were I opened my car door so people knew I wasn't moving soon and would overtake and so on.

 

Anyway 10 days in hospital, pain was just incredible, I was more animal than man at times. The doctors did the tests,  were unsure of the cause of the bleed and said that probably the aneurysm had destroyed itself. This was very upsetting as I assumed because they had not found a cause as such that I could get another bleed anytime..... and guessed I had approx 6 months to live. Because I didn't get a 'cure' such as a coil I was missed out on the outpatient process and was given no info at all. I looked on the internet and found this place and wiki's explanation very good but I was still worried until I went private and searched out all the info I could.

 

I retired through ill health this Saturday, I can walk and talk but I have little mental stamina and have a permanent headache which ratchets up and down for no reason (actually it's because of the Hemes floating around up there). 

 

When I get those particularly nasty bolts of pain my little voice says either 'that all you got today?' ........or '<expletives> leave me alone!'.  

 

But you know what? - after all that - I feel lucky and my wife family have been absolute rocks.

 

Respect to all the sufferers and even more to the families who support them.

 

Later,

Steve

Good luck Joanna and hope all goes well on Thursday. xx

Daff, afraid to say that I haven't woken up feeling refreshed since the bleed and I don't have a shunt.  In fact I sometimes feel more tired when I wake up than when I do before I go to bed. I can't remember now what it feels like to have a "good nights sleep", as this heavy feeling seems to be my new normal.

It takes me a good couple of hours in the morning after waking up to actually feel human.  In the early days I found sleeping with a V pillow and being more propped up helped the heavy morning head, rather than lying flat. I haven't used a V pillow for years but I'm thinking of buying another one to see if it helps again.

This is yet another morning for me of getting up late ... Eric working away and he's normally my alarm clock for getting up.  I also find that too much sleep can make me feel worse in the morning....however, I could sleep for England after 7am.

I also look tired and this morning I've put in some moisturising eye drops, as it helps a little.

I don't like having any appointments in my day before 10am, as I just don't feel "all there". 

I think that's what is great about sharing this sort of stuff, as you tend to think that it's just you experiencing it. xx

Hi Poppy,

I too have an aneurysm that hasn't been fully coiled ... I'm due for my next scan in 2015, which will be 10 years from the initial coiling .... I've been monitored and scanned during those 10 years.

I know how you're feeling .... however, if I need more surgery, I will take it and that's not to say that I won't feel scared.  It's the fallout from the bleed that causes the problems to the brain.

I would rather take the chance with the surgery, then leaving it and living with a ticking time bomb...don't think that I could live with that thought.

My Mother in Law had an aneurysm coiled ... she never had the bleed ... had a couple of days in hospital and came through it okay.

Take care lovely and wish you well. xx

that link you sent me also has back exercises on it I will do some one day

lol.

You and me both Win with the back exercises! xx

We've often been asked by members and medical professionals for a poster to advertise Behind the Gray and the online support that it offers.

An A4 printable version is now available by clicking on the attachment below.

poster.pdf

No worries Win, bless you... Where the heck are the temples? I'm going to have to look that one up!

Just looked it up and have never heard of it ... you're a first for me Win!

I'm going to have to do some research.

Take care lovely and I'm sure that you won't break it!

Will be thinking of you. xx

Win, I haven't heard of a CR scan ... did you mean CT scan? There's some info on CT scans on the following site http://www.netdoctor.co.uk/health_advice/examinations/ctgeneral.htm

Wishing you all the very best for your scan and hope that you have good results. Is this just a follow up or have you been having problems ... sorry, I'm nosey and you don't have to answer!

Hope that you're okay ...xxx

Hi Tony and congratulations on your 2nd anni-versary!

I found the first couple of years post SAH the hardest and it was probably at this stage where I realised that I wouldn't perhaps get back to my old "normal".

However, I became more accepting of my new "normal" and stopped pushing so hard and I think that the 2 year anni-versary is quite an important one. You sum it up nicely with

I have learned that it is ok to take life at a slower pace and not feel that every spare moment needs to be filled with doing something productive. And it is ok to just take some quiet time by myself with no music, radio, TV, computer or other noise or distraction to give my brain a rest.

It is a difficult journey but easier to bear when you have others around you that are walking the same path and know exactly how you're feeling and help make sense of it all.

It's always great to see members return and post their progress on here and it gives hope. Thank you for your kind words about the site and I'm really glad that you've found it helpful.

Keep well,

xx