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Hi from Phil - new member


Pdl_uk
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Hello,

 

I found this forum and have found a number of the posts really useful, however I still feel a little 'lost' with where I am on my recovery.

 

I am a 39 year old male and had my initial SAH in August last year. Prior the SAH I had had a wellman screening in the May and cycled the Ride London 100 mile cycle in 6 hrs in the July, so considered myself fit and healthy.

 

My SAH occurred a week into my holiday (with my wife and 2 kids) in Mexico of all places. I awoke in the night being violently sick and having no feeling in my hands and feet. We had been out for a Thai meal and I had had fish, so the assumption was food poisoning!!

 

I spent the next two days in the hotel room only being able to drink small amounts of water, no food and managing the head and neck pain with ibuprofen.

 

After the two days my wife called the hotel doctor and I was admitted to hospital with suspected salmonella. 36hrs and 7 litres of IV fluid later I was discharged and spent the remainder of the holiday in the hotel room waiting to fly home. Luckily the hotel doctor certified me a fit to fly and I got wheelchaired through the airport onto the plane.

 

I don't remember much of the flight other than being 'not with it'. On landing in the UK, I took a turn for the worse and was in A&E within a few hours of landing.

 

I had a CT scan and lumber puncture and whilst I later found out these showed traces of blood, I was admitted to the hospital and treated for meningitis- both bacterial and viral, so was on IV anti-vitals and IV anti-biotics. 4 days later my bloods came back clear of meningitis so the doctors were wildly guessing as Zika virus or similar.

 

I then had a second bleed, collapsed, had another CT scan which was sent to a larger hospital for review where they confirmed SAH. I was ambulanced to that hospital and in surgery 6 hrs later.

 

My aneurysm was coiled and I then spent the next 3 weeks in hospital recovering before coming home. ( I hated the constant 4 hrs waking up for the nipodimine! - I just wanted to sleep!!)

 

Its now 6 months on and I have just had my follow up MRI today. However this has made me confront somethings I have been avoiding.

 

1. Whilst I am back at work, I can only manage about 30hrs a week. I did try full time in January but it was too much. In my mind I'm expecting to get back to full time. However, I'm scared that the reality is I may not?!

 

2. I had an extremely good memory before. I was something I was known for personally and in work. Now my short term memory is inconsistent- it either works or it doesn't. I have a feeling it will never return to how it was before. I feel the SAH stole a part of me.

 

3. I was told that with no risk factors in my life, it was likely that I was born with a weakness in the blood vessel that just went. However, my job was extremely stressful and I worked long hours with high stress. I was told this is not a cause? 

Although changes at work have helped reduce my hours and stress (we recruited someone to do part of my job) I'm concerned still that work and stress may cause another SAH.  What are other SAH suffers experience with stress?

 

4. I now do not know what my base line for feeling normal is. Therefore any tiredness/fatigue/headache/forgetfulness, I attribute to my SAH. How do I know what normal is now?

 

Sorry for the very long post, however this is the first time I am addressing some of this as I have been avoiding it, and it's useful just to document my thoughts.

 

Many thanks 

Phil

 

 

 

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Hi Phil,

 

Welcome to Behind the Grey (BTG) as I call it.

 

I had an SAH in 2009 and remember nothing until shunt was put in a year later. 

 

1) With your job ask Boss if you can stagger hours or come to a compromise with them.

 

2) Long term memory okay, Short term arghh  well I think a lot of us have that,  it comes with the bleed/SAH.   It does get better but slowly,  in my case very slowly  but we are all different.. I forgot my Dad was dead !!

 

3) My Neuro Surgeon told me no stress whatsoever and insisted on it.  So I sing happy songs that cheer me up and remember fun times when I have laughed until I cried.

 

4) Not a Dr so cannot say,  can only say what happened to me.  I get/got headaches,  cannot take other peoples problems anymore, I try and take less pills as I am on

     enough as it is

 

5) My addition, Keep thinking happy thoughts, and life is stressful so it is hard not to stress.  Keep a smile close at hand and do not listen to others worries.

     We survived !!

 

I wish you all the best in your recovery, I was told I'd never walk again but now down 120 yards, rested and walked back to my daughters car.  Never give up xx

 

Best Wishes for your recovery xx

 

WinB143 alias Win  Forgot drink plenty of water xx

 

 

 

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Hello Phil....a warm welcome to BTG.   You have found a site that has a wealth of information and personal experiences shared by members who have survived SAH and their carers.

 

While we do not provide medical advice, you will receive much support from members who understand.

 

Firstly, it must have been quite a traumatic time for you and your family on holiday in a distant country and so unsure about why your health was deteriorating. So glad you received prompt attention on returning to the UK.

 

Six months on following your MRI scan, it is good that you are reflecting on what has happened and what you might expect of your recovery in the days ahead.

 

You say that you work in a stressful environment and that you have returned to work with some support and less hours.

You will read on this site that the causes of SAH are very uncertain. However, stress following SAH  definitely can cause problems in recovery.

 

Almost six years ago (May 2011) my wife suffered her SAH. My response is based on her experience and from the comments shared by our members.

 

Firstly, there is no `one size fits all`  recovery from SAH. Each have their very unique circumstances such as severity of bleed, length of time from bleed to hospitalisation, personal circumstances (work, family life, family support, finances)

 

Your brain and body needs time to readjust, and time off work initially followed by a planned phased return to work is so important, with your return being subject to change if you find you are struggling.

 

My wife worked in a very stressful job, and her phased return to full time started in Sept 2011 and she became fulltime by June 2012. She continued to work in this very stressful environment for 13 months, but it became clear that this could not continue, and she took early retirement in August 2013. She returned to work for 2 days a week and still enjoys being at work.

Again, every situation is different, but stress is not good for your SAH, and managed rest breaks are so important.

 

Memory issues pose different problems for many.  Again, in my wife`s case she is fortunate and her memory has not really been affected.

 

Phil, your post highlights many issues that everyone here can identify with. I am sure you will receive receive many comments in support.

Your question .    `What is normal?` has been the subject of much discussion on here lately.

Your brain has received major trauma and how well you recover can only be gauged over time. Please be prepared to have patience.

 

I wish you and your family well as you tackle your recovery together. You are all affected b your SAH.... take time and give yourself every chance to improve.

 

 

 

 

Subs

 

 

 

 

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HI Phil

 

A warm welcome to BTG glad you found us. As Subs says what a traumatic series of events you went through though I do think you were luck to have got back to the UK before a proper diagnosis and treatment. God know how long you would have been stuck in Mexico.

 

I'll respond to your questions by number if thats ok.

 

1. Work, you say you are back for 30 hours a week, hopefully that was on a phased return. Your bleed was 7 months ago, at the same point I was probably about where you are now. I eventually made it back to 34 hours and that is all I do now. But it is spread over 4 long days, 9-6 with half hour for lunch. I work Monday  Tuesday Thursday and Friday with Wednesday  off. This was a conscious decision as I felt I needed the rest in the middle of the week to recuperate. I am now 2 years down the line and STILL need that rest. There is no way I could work 5 days a week for long hours. I find that if I overwork my stress levels increase and the fatigue gets worse. You may get back to full time but be prepared not to and really think hard about that. What is more important? A good work life balance is best for those post SAH as stress really does affect you after your brain has had a battering.

 

2. SAH has stolen part of my memory. I too had a very good memory pre sah and was known as a walking phone book. I can still remember all those old numbers but try and remember a 4 digit key pad code for where I work -  took me weeks and I still know it by pattern rather than the numbers. Memory problems often get better in time but you may well be left with some deficits..I have had a neuro-psychology report and test done for my memory and they show some slight deficits mainly with working and short term memory. You will find methods of coping with this, I use my phone a lot by putting notes on it to remind me.

 

3. Stress affects us all in different ways. I find now that stress cause me to become a lot more emotional about things, very teary and unable to cope. When I get fatigued and stressed I find I lose words and forget what I am saying part way through a sentence. So keep stress levels to a minimum if possible. I have been told that the chances of me having another SAH are the same as any other member of the public. Mine was non-aneurysmal though and I believe yours was an aneurysm. If you have had follow up MRI's and been given the all clear then I believe your risk is the same as mine. I do not think it is worthwhile worrying too much about the chance of having another SAH, just embrace the fact that you survived this one.

 

4. Normal? What is normal? I think I am still finding my new normal now. Headaches, tiredness and fatigue are all the legacy of a SAH, they do get better in time you just have to learn to listen to your body - and brain- and slow down when they tell you to.

 

Take your time, don't push too hard to increase those hours and take stock about what is important to you.

 

Hope to hear more from you her on BTG.

 

Clare xx

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Welcome Phil some excellent responses from others, mine was a bleed from anuerysm luckily not a large bleed but did have a large anuerysm so was extremely lucky it did not kill me and was able to be coiled successfully.  Just had recent MRI and still occluded bar a tiny neck but going just to continue to monitor.  Consultant told me I am no more likely to suffer another SAH than anyone else, but probably in better position as being monitored.

 

Like Others have mentioned everyone's recovery is different however there are many things that we share fatigue, emotional see-saw, memory issues and sometimes concentration.  I work in high stress field too and I returned just short of six months.  I struggled with my memory like your's mine was variable, worse under pressure and knocked my confidence particularly as had to make decisions daily which impact on others.  It has improved but I still have times when it's not good, I think your brain just has to find new routes to get the information or compensate for those parts that were damaged by the bleed.

 

I am much less embarrassed by it now.  I don't think my ability to manage stress has changed but physically it does have impact on headaches. They told me that there is not enough evidence to link SAH to stress, however I think mine does have some genetic link, my sister has aneurysms and my aunt died of one.

 

I went back full time although I did do a phased return and then worked 37 hours over 4 days - not something I would advise as absolutely shattered on Friday.  Just changing jobs now, slightly less stress smaller team to manage but will work 37 over full week initially.  If you can afford 30 hours I'd keep it for as long as possible as first 12 months were hard.

 

I was very afraid in the first year, thinking every symptom related to my SAH, I don't think it ever leaves but it is less now and I think it gets better with time

I wish you luck in your recovery, we are probably the very lucky ones who get to come on here and I know this site is so supportive.

 

Regards

Sharon

 

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Hi Phil

 

Welcome to BTG. Sounds like you had a pretty traumatic holiday! I wanted to reply with particular reference to your questions on stress.

 

I am 51 and had a non-aneurysmal SAH 14 months ago. I also have a very small untreated unruptured aneurysm.

 

Pre haemorrhage I would have described myself as a very stressy person, but I always managed to handle the stress. Post haemorrhage I rarely get stressed out but I do not have the same resilience to handle stress anymore.

 

6 weeks after my haemorrhage I remember watching the film Castaway. It has a very traumatic plane crash scene at the beginning and I couldn't believe the reaction I had to it - my head started to pound so much I had to stop watching and lie down for an hour. This really worried me and I wondered if this would be my stress reaction from now on - I had visions of myself sat at my desk at work, being given a tight deadline and suddenly having this pounding in my head. I mentioned the experience to my consultant at my 2 month follow up and he said my symptoms sounded similar to that of someone with PTSD.  I think he was right - it was a very specific reaction to a simulation of a life/death situation and I've never experienced it again to that extent.

 

I do however have a very definite reaction to stress. Sadly not all life's stresses are avoidable and I recently had some family related stress that completely wiped me out for a couple of weeks - I had headaches, fatigue, nausea and insomnia reminiscent of my early days of recovery.

 

My consultant told me that the two most important factors for me post haemorrhage were to continue to control my blood pressure (I take medication for borderline hypertension and nocturnal hypertension, and did so before the haemorrhage) and not to smoke (I gave up being a regular smoker a long time before the haemorrhage). He did not specifically mention stress and I have read that stress is not a contributing factor, but I can't help but think that regular exposure to stressful situations over long periods of time can't be good for anyone as it can contribute to high blood pressure.

 

I am still phasing back into work - I only work 17 hours over 4 days (Wednesday off). I do expect to add on more hours, but really have no idea if I will ever get back to full time hours - I haven't ruled it out yet. At the moment I have decided to start trying to add more social activities into my life, to see how I manage that, before adding on more work hours. I am unsure what will happen in the long run if I am unable to add on more hours but I don't see the point in worrying about it - I can only do what feels manageable. My own experience has been that after suffering the initial trauma of the haemorrhage I have mostly found that it has benefited my emotional well being. I really don't want to throw all these positives away by putting myself into a position where life just becomes work and sleep.

 

I hope you continue to make a good recovery.

 

Best wishes

Susie

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Hi Phil, Welcome to BTG really glad that you have found us.

 

So glad that once you were back in the UK you were diagnosed and received the treatment you eventually had.

So many of us are misdiagnosed, they said mine was just migraine and were going to discharge me, thankfully they didn`t and here I am.

 

I think you have done brilliant to get back to work and to be doing 30 hours a week, there are many who haven't been able to do that.

So well done you.

 

Memory, I like you had a brilliant memory and I now struggle with short term memory, I make notes to myself all the time,

Although there has been some improvement since I had SAH in 2014, I notice it more if I`m stressed or tired, like Claire I also lose words

when I`m stressed or tired and it can be very frustrating, but you do learn to cope with it as time goes on, then again you could recover

your short term memory and not have a problem with it anymore,  no two recoveries are the same.

 

I used to be able to cope with any amount of stress, I do find now that it really does floor me if I`m stressed, mostly my head hurts and

I find my emotions are all over the place.

 

I think we all feel that SAH has stolen part of us, it`s what we do with what it has left us with that`s important,

We all learn to live with our new normal and you will too, it just takes time, be kind to yourself Phil.

 

This has been a very traumatic time for you and your family, how are your wife and children coping with it all?

 

Anyway I wish you well on your recovery journey and look forward to hearing more from you.

 

Best wishes to you and your family

Love

Michelle xx

 

 

 

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Hi Phil, a warm welcome to BTG.  Sorry to hear that a lovely holiday was interrupted by this awful event.

 

My advice to anyone who has suffered a sah and intends/has to return to work would be to have as long as possible off initially and then return on minimum hours with a view to building up gradually over a long as time as possible.  You've already discovered how hard it was doing full time,  it's not to say full time isn't possible again for you, but I would leave it until you feel able to increase your hours.  Any work is using your brain and your brain needs rest to recover after such an assault on it.  In my case I had 5 months off, gradually built up to 14 hours a week - then eventually took on other jobs in addition - now doing between 32 and 36 per week. 

Of course being a parent, you need to factor in all the extra brain power that is used in a week!

 

Memory issues are common place after a sah,  whilst these can and often do improve, it's one area I still struggle with.  

 

As for stress, I'm convinced it was stress that caused my aneurysm to rupture, ie probably a rise in blood pressure caused by the stress.   I even told the paramedic who attended when I rang 999 that my symptoms were probably caused by stress - I don't think he took much notice as he left me at home and went on his way!   Whilst I still have my aneurysm monitored regularly and have another unruptured one, I have had a lot of personal stress in the 8.5 years since my sah, but touch wood, I have had no further bleeds.  I go for another MRI in a couple of weeks. I also purchased a bp monitor which I find helpful for keeping an eye on it.

 

Perhaps you could record tiredness, headaches etc over a period of a week, then again in 6 months' time which would at least give you an idea of any improvements.

 

I wish you all the best on your recovery journey.

Sarah. 

 

 

 

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Hi Phil,

 

Welcome to BTG.

 

I think the first thing to say is that nobody really knows if stress plays a part in causing SAH.  The thing about stress is that it is such an unmeasurable, and therefore unquantifiable, phenomenon.  One of the things we want to do after SAH is to find someone, or something, to blame for our plight.  Stress is usually one of the first suspects but it is a slippery customer.

 

There is no measure for stress.  It is different in each of us and its consequences manifest themselves in different ways.  It is convenient for us, then, to blame stress if having it coincides with our 'event.'

 

When I had mine, I was under an enormous amount of pressure at work and to me it was easy to blame blowing a fuse (known as stress) for it.  Even now, some 6.5 years later, I still think it was a contributory factor, but I have no real or concrete evidence to back it up.

 

I went back to work after six months and it was way too early really.  I managed it for another three years, and it was a living hell because of the side issues (like travelling the length and breadth of the UK), but then I decided life's too short and I opted for early retirement.  I believe this was the right decision for me and I don't regret it for one second.

 

I think we all agree, however, that stress isn't good for us and many are convinced it plays a part.  If you were on a jury, could you convict the suspect (stress), on circumstantial and hearsay evidence?  I think not, however much you might like to, because the real evidence just isn't there.

 

Perhaps there ought to be more research but there isn't.

 

Stress is such a suspect because of the mental pressure it exerts on our emotions and people link it to blood pressure and the like but in reality you could argue that stress is a scapegoat rather than a real cause.  I, myself, believe it is, possibly, probably a contributory factor but there are others too, such as weakened arteries.  That may simply be caused by the ageing process or, as you say, one you were born with.  That's just bad luck and part of life's lottery. Stress has no part in that.

 

Could it be hereditary?  There is no evidence to support that theory either, but sometimes other family members have SAH's too.  My first wife had one (she is mother to my two sons) and I have had one too, but we were related by marriage, not blood.  Am I worried about my lads?  Yes, but que sera, sera.  All I can do is try and ensure they get themselves checked out.  I can't let that rule my life now but I am aware of the threat and try not to stress about it, because I can't control it.

 

You will develop your own coping mechanisms as time goes on, but time is the biggest healer.  Don't fight to get back to what you did before.  Go with the flow and make changes to your life that will help you cope better. Reduce stressful situations as much as you can.  Change your future as you can't change what has already happened.

 

You have a real chance here to re-evaluate your life and make changes that will improve the quality of your remaining years for yourself and your family.

 

Don't waste you time on bitterness and regret.  They are wasted emotions.  Be thankful for the person you were then draw a line under it and move on and be thankful for the person you now are.  As time moves on you will see that you are one and the same, albeit with a changed and more positive outlook.

 

I wish you well.

 

Macca

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Hi Phil

 

I had my SAH around the same time as you, needing major craniotomy and clipping of the ruptured aneurysm. Like you also I have a stressful job and like to keep myself fit, by running etc.

 

I'm still on a phased return managing 30hrs per week now, you did wonders by returning to nearly full time after a short period of time off.  My consultant said to take at least 6 months off, however to go back when ready, so I did building my hours up. As one of the doctors I work with said "Work to live and not live to work" I've followed what he said.

 

Listen to your body, our brains have been through a major trauma, the tiredness is due to the nerve pathways fighting each other.

Don' t worry about poor memory at times, it will improve, it's just exacerbated by the tiredness.

 

Put yourself first, and your family 

 

All the best

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Hi Macca

 

There is  some evidence for a hereditary link for brain aneurysms. Colleen posted something about it last month. 

 

I'm not sure how you post a link but if you search on Google with the words "Mischer Institute gene mutation brain aneurysm" articles should come up.

 

Regards

Susie

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Hi Susan,

 

You learn something every day.  I did that thank you.

 

According to the article I read, it seems there can be a hereditary link if a certain gene is present and it isn't necessarily present in all family members, just some, and across generations.  It increases the risk of an aneurysm. Link below to the article:

 

http://www.prnewswire.com/news-releases/a-groundbreaking-discovery-researchers-identify-gene-mutation-linked-to-deadly-brain-aneurysms-300376614.html

 

 

So I stand corrected.  Thanks.

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My children were offered MRI scans by my treating hospital as the consultant believed that there could be an hereditary link.

In fact I know/knew of someone who lost a parent and a couple of siblings to SAH, sadly they lost their life to one as well. This person's daughter also has an aneurysm that is being monitored and has been monitored for about 20 years and she is only 30 now.

It appears that aneurysms can be hereditary. 

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Hi all 

 

Just to put my two pence worth in - they can be but it doesn't mean that they always are.  I am the first to have an aneurysm in the history of my family - and its a huge family (one great grandma had 18 children who all went on to have at least 4, and the other one had 12 children who also all went on to have at least 4 and then they went on to have two or three) There is no one else in my entire family to have an aneurysm.

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I'm the fourth generation to have had a SAH, there's 2 of us in the same generation to have had one months apart, however my consultant would not commit to saying it's hereditary.

However the local NHS have been fab in screening 3 relatives.

Even if they won't screen my daughter when she's older, I'm prepared to go private.

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Just to my twopenneth worth in too how about NASAH and family history.

 

Unbelieveably my brother who is 3 years older than me had a non-aneurysmal bleed when he was 16. He too was treated at Wessex with a prolonged stay in a local hospital afterwards. They did things diferently in the late 1960's.

 

When we mentioned this to Wessex they were very interested but when they heard how long ago it was they then said they did not keep records that far back. Interesting though that 2 people in the same family should have similar bleeds so maybe there is some hereditary link with non-aneurysmal bleeds too?

 

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I was told my Dad's sister and her boys (Aunt and Cousins) who had it weren't close enough relatives.

 

It must be a weakness  as my Dad died at 92, he fell down and they found he had TIA's and it wasn't the fall that killed him it was the TIA's ?????

 

We never knew he had them until he went in hospital.  He always said "Bleeping hospitals get there hands on you and you are for it" .

 

I love him so much and am smiling while I type about him.  Dad and Mum were so funny they have left me with a big smile.

 

Sorry if I have gone off track xxxx

 

Win xxxx

 

 

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  • 1 month later...

Hi all

 

I joined this site today, I'm in recovery from my SAH aneurysm about 3-weeks ago. Thankfully I'm doing well but it's all quite a surreal thing...that only we can relate to. 

 

These posts from all of you, starting from Phil's original post - has provided many answers. In addition, you have provided unanticipated questions and answers. 

 

Thanks very much for the effort; very grateful. 

 

Kerryn

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