Hunting statistics and data on SAH

[Eruditedk]

Good morning all I hope everyone is feeling well and feeling positive..

 

It was suggested I start a new topic after my initial introduction thread so I hope this is in the right place, if not Mods feel free to move it to where will get the best responses and be most useful to others...

 

So 3 months after my No Cause Nicola Sturgeon (OK SAH) for the unitiated in the  new medical terminology... 

 

As an aside I really welcome discussion and agreement on a new terminology for what we have suffered... you all must feel the same... saying No Cause Sub Arachnoid Haemorrhage is a mouthful and utterly meaningless to most of the general population ....

 

we need something punchier and more descriptive which is why I chose " Nicola Sturgeon" as she brings a universal pain and irritation to the brain that everyone understands immediately with no further explanation required... 

 

Going onto the title and my real request for help.

 

Having a mathematical mind and being someone who tries to distill things into absolute answers I am desperately trying to understand what happened to me and what may happen in the future in statical terms..

 

I am searching for data, statistics based on general population, then drilling down, sub groups of smokers, cannabis users, hypersensitive and hyperactive people, people who lived on or thought they thrived on adrenaline and cortisol ..

 

Skippy provided a statistic of 0.186% which came from something she had read... that becomes 1 in every 540 people who have a brain bleed die in the shirt term.

 

Now I was given very different numbers from the hospital and doctors when my SAH happened.. 

 

I was told 30% of people would have been dead at my desk when it happened...

 

A further 40% would have survived but been very severely damaged either mentally or physically 

 

The final 30% being a sliding scale of damage through to full recovery and that I was in the "Lucky" 1% that seem so far to be unscathed bar the recovery period i have to go through which would be 3 -6 months...

 

As I have high blood pressure which they are trying different cocktails of meds to bring under control and a second "incidental aneurysm" my current risk factor of a re bleed is 0.7% elevated from general population being 0.4%

 

Even my addled brain knows 3 months in the estimated recovery period was way out.... I am like bambi, weak and I don't have even 5% the physical or mental agility or stamina I used to have ....

 

So the stats and numbers I have been given and Skippy has added too do not add up. The book " A Dented Image" kind of corroborated the doctors initial numbers but I would like to know what data others have been given or have found so I can calm myself with an approach I understand into working out what my own future holds...

 

I also hope this leads others who need information in a similar format as me with facts and stats what help us understand... 

 

So I throw this open to all, please post sources, places to research, any and all information you can which I know will help me and will hopefully help others too...

 

Now off to B&Q to buy timber i have an ongoing battle with a greenhouse I need to resolve..

 

Take care and have a lovely day... D x 

 

 

 

 

[Louise]

Hi there

 

I like that name to a name! yes no explanation is required..

 

My brain can't cope with numbers, so my answer is basically that you may never know how it happened, or if it will occur again (more than likely, it won't) but one thing I did learn on this "will it, wont it" journey - is that life is too short to wonder...

 

 

 

 

[subzero]

Hello Daniel and thanks for starting this separate thread in your quest for statistical information about SAH/ NASAH.

 

Louise`s reply probably sums up how many members feel. For them BTG was a very valuable support following their discharge from hospital with what is generally agreed, very little information on how the next stage of recovery would be..... (the few boxes of paracetamol would aid the `early` and perhaps continuing headaches.  Their immediate priority was to find out that their varied experiences post bleed were `normal` and to get assurance from our members that there were ways to deal with the effects of post SAH brain trauma.

 

They had already been given the statistics that indicated that they were very fortunate to have survived. 

 

It could well be that the more detailed statistics you are looking for are to be found in `in depth`study of notes available on the web by neurosurgeons who have decided to put their findings and research in writing.

 

No doubt you will appreciate that once you have absorbed the initial morbidity rates, finding out about how `lifestyle` habits may or may not affect survival can be so complex when each individuals lifestyle and existing health conditions and age can be so varied. 

 

To start you off I extract the figures from the studies in the Patient.co.uk leaflet.

Authored by Dr Colin Tidy, Reviewed by Dr Adrian Bonsall | Last edited 22 Jan 2018 | Meets Patient’s editorial guidelines

 

SAH  is a medical emergency. It is also a catastrophe: half of people who have SAH will die, and around half of the survivors are left with significant disability.

 

Around 6-10 people of every 100,000 per year will have an SAH.

SAH causes around 6 out of 100 of all strokes.

This makes SAH relatively rare - but hugely important. It is a very disabling and dangerous type of stroke and it tends to affect younger patients more than other strokes.

 

About 1 in 4 people survive SAH well enough to live independently. This is more likely if the bleed is small, if initial symptoms are less severe and if the patient is younger.

 

SAH usually affects adults under the age of 60 years, with the average age of affected patients around 50 years.

Children are not usually affected.

Women are affected slightly more often than men.

Patients of African descent are slightly more commonly affected than patients of Caucasian descent.

The condition is also more common in Finland and Japan, where the rates are around three times those in Europe.

Patients who smoke, use excessive alcohol or have high blood pressure are at greater risk.

First-degree relatives of people who have had an SAH are at greater risk. 

 

Other causes of SAH, accounting for fewer than 2 out of every 10 cases, include:

Head and neck trauma, when bleeding from injury to the brain or the structures around it can track into the subarachnoid space.

Abnormal blood vessels such as those that may be present in a brain tumour.

Brain infection such as encephalitis.

Vasculitis, when blood vessels inside the brain become swollen and inflamed. This can occur either due to infection or to conditions affecting the immune system.

 

The most characteristic feature is a sudden explosive headache.

In 1 in 3 patients this will be the only symptom (the rest will have other symptoms as

 

 

About 1 in 10 people with SAH have some warning signs in the days or hours before the SAH occurs. The most common are:

Brief sudden headaches (the most common symptom).

Dizziness.

Eye pain.

Double vision or lost vision.

Loss of sensation or movement.

These symptoms may be caused by early small leaks of blood from the aneurysm as it starts to burst (rupture). However, they may not last long, and of course they may not be recognised as possibly serious by doctors or patients.

 

Can subarachnoid haemorrhage be prevented?

It is not known why some people with berry aneurysms in the brain go on to develop SAH. However, it is known that certain avoidable risk factors make it more likely:

High blood pressure

Smoking

Excessive alcohol intake

Cocaine use

Avoiding these risk factors is the first way to reduce the risk of SAH.

 

Berry aneurysms are common. They are present in around 4 in every 100 adults, being more common with greater age. They are probably the result of wear and tear on the cerebral arteries at their point of greatest weakness - the point where they divide into two.

 

Hope this can be a starting point for your research.

 

 

Subs

 

 

 

 

[Eruditedk]

Good evening everyone and I hope all are well and enjoying their weekends..

 

Louise and Subs thank you for your input and comments, I understand where you're both coming from, it's a stance my family are taking with me regarding my need for answers.... I guess we all process things differently and as much as I totally agree with how lucky I am, we all are, to be here and alive and kicking.... I want to know or try to accurately estimate how much longer I may have to continue my adventures, and when I need to start writing the books I have been promising myself and others...

 

Sorry for my slow reply I have had a couple of very busy days even for me in my slow relaxed  recovery time!!! I have not had more than a few moments online... I have been visiting my mother who is 79 and lives alone, looking after a substantial home and garden which takes its toll, especially as she now worries constantly about my health and how and what I am doing to protect myself... 

 

 It breaks my heart to see how shaken she is with dealing with her son's lack of invincibility, I have always tried to be the foundation block for those around me, so by me being weak or vulnerable that radiates into her and my other close families lives...I was doing a few jobs to help her keep on top of things, fixing leaks in bathrooms, repairing conservatory roofs, I really wish I could do more but see how worried she is when I start climbing ladders or tackling jobs I would have done before with no question or thought at all...

 

How do you all deal with the worry your families and close friends have for your health? Do you tell them honestly what you are up too or conceal the extent of your own worries and sense of fragility??

 

Then to add another layer to my own life, my lovely car, a classic XK8 convertible, a gift my fiancé bought when I came out of hospital after my SAH  in February decided to throw a wobbler and break down and we ended up being transported home on the back of a recovery truck.... seems like stress and I are inseparable.... I now have to learn how to be a mechanic, body work specialist, welder and repairer ...on top of everything else, all while taking it easy.... how does that work?? 

 

Back to my question on stats, I have read the notes Subs sent and found other documents online.... I have a consultation with my Neuro Surgeon at the Walton Centre at the beginning of July and want to be prepared for the conversation.... so accepting very few people agree with my need for data and to distill a statistical approach to my recovery and expectations... a question that has come from the research i have done so far, and the contradictory numbers that are available is...

 

Does anyone think there have been enough studies and the data that is available is complete enough or broad enough to even enable the approach I want to take..??

 

My family think the fact that published figures are so varied shows that there is not enough data to produce any meaningful conclusions.... which linked with the no cause aspect of my SAH is wholly and totally unsatisfactory to me....

 

However, it is a good place to start or indeed stop in my quest for answers as I now understand how short life is, so wasting my time on futile research will not help me or anyone who would have been interested in my mathematical conclusions ...

 

Truthfully this makes me feel quite depressed, overcoming obstacles has always been part of my makeup, the ability to work things out has lead me into adventures and my achievements and I want to beat my situation and the SAH / Aneurism, and prove I am still batman, and that the Joker has not won...

 

So I ask for the guidance of BTG and newly found companions on this journey of post SAH discovery...

 

if my posts are too long winded I am sorry I see this as a place I can say what I truly feel and think without having to be guarded as I do around my family and those close...

 

Wishing everyone a good night and that you enjoy the rest of the weekend..

 

Dx

 

Being from Leicestershire, LCFC winning the FA Cup today and the Premier league in 2016 shows the odds can be beaten if you really want them too be and believe.... congratulations to them all...

 

Though I must admit I am actually a staunch and stressed Liverpool FC supporter at heart... 

 

 

 

 

 

 

[subzero]

Good morning Daniel and thanks for your comments. 

So sorry to learn about your Classic XK8 Convertible's breakdown. Hope it's not too serious. 

 

On a lighter note you will have enjoyed the excitement and last minute drama of the FA Cup final yesterday. 

 

Sami is the expert on Liverpool,  but being a lover of statistics you must say they are very well placed to get that 4th Champions League spot. 

 

Turning to your thoughts about your mum...yes at 79 your sudden brain trauma will have shaken her quite a bit...although mums tend to hide their true feelings to save you from added worry.  Talk to her about your feelings  

 

I just add a comment on your quest for statistical answers.

Your long term 'weed ' habit will  by it's very nature put you in a special high risk  category so it may be that you will find NASAH info from that aspect alone. 

 

As someone who majors on stats when you started on that journey, did you assess the consequences of such a long term habit? Also following your bleed and complete withdrawal from 'weed' you need to look at how to differentiate .... what is the effects from your bleed, from what is withdrawal symptoms. Not easy as personality changes, mood swings and irritation are common to both.

 

Keep asking these questions and we are delighted that you find our 'community' of help and support.

 

Subs

 

[Louise]

We DO all process things differently just as we all initially have the SAH we are all different in how we deal, manage it....  I guess for me since its been a long time my only advice which I wished I had received years ago is Dont let it consume you, dont try to find out why! what could I have done differently! what did I do! what should I have done! all those questions (and that's narrowed down have to say) ate at me for a long time..

[weedrea]

On 13/05/2021 at 11:09, Eruditedk said:

So 3 months after my No Cause Nicola Sturgeon (OK SAH) for the unitiated in the  new medical terminology... 

...I prefer to call mine Priti Patel - small and malevolent. But let's not get political here! The only thing I will say is having been brought up in Northern Ireland. the "Ulster-isation" of politics in Scotland and the UK more generally is so very depressing. Everything is becoming so polarised, it's them vs us. It makes me so sad. It wasn't until I left NI when I was 18 that I realised the psychological impact of living somewhere constantly on edge.

 

Anyway, back to the point in question. I am quite like you in that I want to know the "why" for everything. I have arthritis in my wrists which I've had since I was a child. About 9 years ago I quit all my medication cold turkey - something I would not recommend to anyone. I was young and foolish! Anyway, I spent the next few years reading everything I could, trying to change my diet, lifestyle etc to "help" my arthritis. Whilst it hasn't "fixed" anything, I have got to the stage of not needing medication and have slowed down the degeneration of my wrists. I know many people would say I'm still being foolish by not taking the meds but I want to understand why it's happening and not just take medication to reduce rather than heal the problem.

 

So when I had my SAH 5 years ago I approached my "research" with similar gusto. I'll say one thing, it is a rabbit hole. And 5 years on I have no real answers. 

Do I have any of the risk factors for a brain bleed? No 

Did I have high blood pressure? No - in fact I had low blood pressure!

Family history? No

Was I exercising too hard? Doubt it

Have I always had brain aneurysms? Who knows!

Did my low-protein diet in the years before my bleed have an impact? I feel yes it must have. It surely can't be good for vein health to not be eating good quality protein.

Did my long-term inflammation from arthritis have an impact? This is one that I can say maybe. Inflammation can damage blood vessels so it'd be logical to think it could have an impact. https://nnjournal.net/article/view/220

And so did my "cold turkey" on the meds make a difference given I wasn't taking anti-inflammatory medication? Possible. I'd always viewed not taking painkillers as good given they can reduce blood clotting. But then I read this and again my answer is, who knows! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458147/

My aneurysms haven't grown or changed since my bleed. Has eating meat helped? Probably yes. Has fasting helped? Probably yes https://www.healthline.com/health-news/fasting-can-help-ease-inflammation-in-the-body and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3695639/

 

So who knows anything! There's so much uncertainty about how or why brain bleeds happen and that just then that makes it feel like facts and stats are limited. I've resolved to view my bleed as a freak incident, one that will hopefully not happen again. All I can do is be aware of the risk factors and do my best to reduce them. My brother is a doctor and his advice to me was "try not to bang your head"....seriously?! 7 years of study for that wisdom!

 

[subzero]

Hi Daniel .... well Liverpool FC statistics were all over the place come the last minute of added time yesterday.  A keeper scoring the winning goal  was certainly not in the script. 

 

Speaking about statistics..... I am sure you will agree that even the best you can gather, can fail to give the full picture.

`Feelings` are so difficult to quantify yet in a post SAH survivor they mean everything.

As Andrea says in her challenging post above, getting answers can be so difficult.

To keep your statistics in perspective you will find some highly informative member input in Neil hapgood`s thread below.

His bleed occurred almost 14 years ago while surfing.

Neil also set up a very informative website to give an insight into how he tried to cope with life post bleed.

Well worth a read.

http://www.braininjuryftp.com//4589821675

 

Subs

[Eruditedk]

Good morning All and thank you for the responses and helpful information....its sunny outside which really makes you feel happy to be alive... 

 

Weedrea thank you for your kind words and your views and story, I think being analytical is a really unhelpful trait for this particular problem....... I am finding making sense of the invisible quite a challenge..

 

Our Nicolas or Pritis ..( see how descriptive these names are, instantly with either you know how frustrating, tiring and irritating the condition is)  .... don't want to give up answers and a clear and understandable road map to recovery, each answer is different, each expert a different view... 

 

I did love your final comment about your brother and banging your head... knowing someone who has a position of power and responsibility that you know so well as a child or adult is scary.... 

 

And Subs thank you for sending the link to Neil's website i have scan read it and will go back more thoroughly later today... 

 

Having received my blood tests back and having had a long chat with my GP even though all tests were clear and in order I suspect and the GP agrees I must have had either a virus or separate infection for the couple of weeks I was really struggling physically...

 

I do agree and will learn from the "too full on" approach to activity I had taken with the move and collecting the greenhouse but I was in far too much pain all over for it to have been connected to my SAH...

 

Just another invisible unknown in why I can't perform as the young batman I was pre SAH...

 

I am certainly weaker and have little stamina but have in the last 2 days with my fiancé managed to win the battle of the greenhouse so that is up and useable.... it only took me 20 times longer than it would have done !!!..

 

Next projects, the poor car.... need to find some parts online then get under the bonnet and magically become a mechanic before getting into the more cosmetic jobs she requires...

 

Bought a new arc welder yesterday so can try and learn that skill and make a Smoker BBQ from the oil drums I purchased.. , things to support gardening and being outside just in case we get a summer...

 

Subs you are so right with Liverpool and Allison's remarkable last ditch goal to save our season...

 

life and the world is random and extraordinary....

 

I am sure Skippy can understand when I sometimes see mylife and my SAH as linked with their story....ups and downs, challenges, enormous successes and like the Villa loss, unfathomable defeats .... they have a plethora of data and still the unthinkable happens so maybe I should try to be less intense about finding a mathematical conclusion for my recovery and just try to be happy everyday I am here...

 

With that the sheep and bleating and the weather report says the morning is the best part so I will get up and see what can be done... I will look in later on and see what else I can find in threads...

 

Have a great day all and enjoy... D x 

 

 

[Karen]

Daniel, I can only say that "stats" vary .... It took me quite some years of searching and looking for the same as you.

 

I literally researched everything, including medical papers and these didn't give me the answers either.

 

As a forum/website, we've taken part in quite a few requests for research post SAH.

 

I can understand that you want answers....I did too ... but I've never got them.

 

The only thing that I did explore a couple of years down the line, was my own family medical history and that my Grandfather, his two sons and his daughter all had a brain haemorrhage/stroke on their death certificate. My Dad is the only survivor from his family....so I'm guessing that genetics come in to play too. x

 

 

[Skippy]

9 hours ago, Eruditedk said:

I am sure Skippy can understand when I sometimes see mylife and my SAH as linked with their story....ups and downs, challenges, enormous successes and like the Villa loss, unfathomable defeats .... they have a plethora of data and still the unthinkable happens so maybe I should try to be less intense about finding a mathematical conclusion for my recovery and just try to be happy everyday I am here..

 

And I'm sure you'll recover quicker than we did in leaving the massive gaps between winning the league and the European championships.  I blame being a Liverpool supporter for a lot of my stress and euphoria in equal measure.  But as with me - gone are glory days of the 80s!!

[Eruditedk]

On 18/05/2021 at 17:54, Skippy said:

I blame being a Liverpool supporter for a lot of my stress and euphoria in equal measure.  But as with me - gone are glory days of the 80s!!

Skippy I completely agree Liverpool are a constant source of stress and this weekend is again a knife edge for a narrow escape or more misery and turmoil.... 

 

However, as we are the same age I don't agree for either of us about the glory days being gone... we are still in the race and fighting for our team and our lives and there are remarkable adventures still to  come...  😀

 

Good morning All I hope everyone is well on another dreary day here in the UK...so much for global warming...... we keep having to get the log burner going...

 

It's been a very unproductive week for me lots of small jobs started and nothing really resolved...

 

I lost focus a bit on the quest for statistics and data, having read all of your comments and listened to my family I got the impression the consensus of opinion was that I would not achieve my goal of plotting a clear path to longevity and recovery... 

 

I am going to put that project on hold until I talk to my consultant on the 5th July, I have some specific questions and information I need to understand my own situation both relating to the No cause SAH but very importantly the "incidental aneurism" they found ....

 

This is something that I find myself worrying about more as a probable cause of future health problems but I have little to no information about where it is, the size, risks, operating or not...

 

A question I have for everyone is did you ever see your own scans, do we have access to things like this...??

 

Are they something people recommend to see, does it help or just bring worry and fear??

 

I have only been dealing with this through the COVID days/years so my medical contact has been at arms reach even when in hospital...

 

My 2 follow ups were telephone consultations and although my Consultant video call in July is still at a distance I was going to press harder on gathering information about my cerebral aneurism because its something I worry about daily...

 

Is there any way they can tell if it has been there a long time, from birth, or has come recently.... 

 

Any questions or guidance you can give so I am well prepared for my consultation will be very greatly appreciated...

 

As we seem to have an interlude in the rain I am going to have a go at fixing my car, put up a lean too roof and plumb in an outside tap.... let's see which comes first tiredness or the rain...

 

Thanking everyone for their kind replies and wishing you all a wonderful weekend

 

Dx

 

 

[Louise]

Hey there

 

No, never seen my scans, dont know the size of the Anni, where its at or anything...  Its just something over time I've gotten used to..

 

I or maybe it was my Husband did ask why! was I born with it but they didnt know..

 

Take things easy I think tirednes comes along with the rain those days are nightmare for me...

 

take care.

[subzero]

Hi Daniel. 

All these unanswered 'footy' scenarios will become clear come late tomorrow afternoon! 😊

 

We asked Mrs Sub's consultant to show us her scan ....but when it appeared on the monitor Mrs Subs decided not to look. Her bleed was caused by Vasculitis diagnosed following her bleed.... it was not an aneurysm. The weakened blood vessel which burst could not be repaired and was permanently blocked by the coiling during a 6 hour theatre procedure.. Thankfully other blood vessels compensated.

 

Definitely have all your questions written down for your next meeting with your consultant. 

 

Glad to hear that you have made that important decision to put your quest for statistics on hold. 😊

Go easy with that classic car repairs. 😊

 

 

Subs

[Skippy]

6 hours ago, Eruditedk said:

A question I have for everyone is did you ever see your own scans, do we have access to things like this...??

 

Yes I have seen my scans and was allowed to take a picture of the one shown to me on screen.  Not sure they allow that now.  You can request them from your hospital on a DVD but there is a charge.  Mine clearly shows the location and if you zoom in, you can see the coils within the aneurysm - looks a bit like a brillo pad to be honest!!

 

Fingers crossed for tomorrow afternoon against Palace 🤞

[Karen]

I had to buy a copy of my scans on CD (we're talking 15 yrs ago) ... It's quite interesting to view and I was fascinated with the images ... but it won't give you any answers. 

 

To be honest Daniel, I was looking for the same as you are now .... A lot of the stuff that I researched was pretty ambiguous ... it still is now. 

 

Even with medical papers, the data differs.... and I've read a lot trying to make sense of what had happened to me, especially in my first years of recovery.

 

The stats with the ratio of women to men, who suffer a SAH is quite interesting to look at. Pregnancy hormones can also come into play.

 

Even babies can be born with a SAH with the trauma and going up to teenage years and beyond when something, such as playing a sport can cause a rise of BP ... If a weakness is already there in the brain, it can kick off. There isn't an answer.

 

I've looked high and low for an answer ... For myself, I questioned my own family history on my Dad's side about 5 years ago as they had a medical history of "stroke" .... Stroke is an interruption of supply of blood to the brain....caused by either a clot or bleed. Looking at the the death certificates, the strokes were caused by cerebral haemorrhage.

 

My Grandpa, two Uncles and my Aunt all died because of cerebral haemorrhage. So, I'm guessing that this is perhaps genes/familial.

 

I also developed migraines in my early teenage years... 

 

I still don't have my answer .... but it was something that I searched for and I wasted so much time with thinking that I could find it, rather than living life for today.....guess that it's the healing process .... but it honestly does get better. x 

 

 

 

 

  

 

 

 

 

 

 

 

 

 

 

 

 

[Swishy]

I never saw scans of my head.  I had a SAH no sack was seen.  I also had a very bad vasospasm a few days later which was worse than the original bleed. I thought for many weeks I had had two strokes, I had no idea what a vasospasm was. 
 

I don't remember much from the vasospasm event, in ICU for a week.  I was at a very big medical center in Boston, they searched for a cause and said they could not find one. 

 

I had no risk factors, except, perhaps a family member. 

 

Literally months after my event I remembered  my mom having complaints of a sudden tremendous pain in her head.  She said she felt like someone hit her in the back of her head.  She complained for some time after but never did see a doctor.  She often said she wondered if she had a stroke later on but never investigated it.

 

So maybe I was at risk from that but I can't say as I am an only child and both of my parents are deceased.  This event had happened perhaps 20 years before.  My mom lived to be 85.

 

I read every bit of my records from the hospital, it was helpful to me as I don't remember much.  No answers though.  I am 4 years out and have basically come to terms with the whole event to some degree. 

 

I do understand you wanting to know.  

[Compostc]

Hi Daniel I had a scan six months after my release a month later I met with consultant and others for results 

 

They showed me pictures of the actual coiling, and pointed out the tiny co-existing Nicola.

 

I think I had another three scans to check on this, then after five year l was discharged as there was no change in its size.

 

I never think about it, their must be thousands of people with them that don’t know were the lucky ones we do.

 

I haven’t smoked since my SAH which I’m really pleased about, I try to eat healthy and get plenty exercise.

 

You're fortunate you found this site so soon it took me eight year.

 

Best of luck  Compostc.

[Eruditedk]

Good morning All, I hope everyone is well and the sun is out wherever you are...

 

Thank you so much for your answers I am trying to get a well organised list of questions for my consultant appointment though being through video link I doubt I will achieve what I want... suffering with anything through these COVID times is very hard as the human contact aspect of care has gone... i have never even met my GP, just a voice on the phone...

 

Interesting in your comments about seeing scans, I really want to have mine, I am sure they would make some excellent unusual artwork as well as introducing me to my Anni...( love that you call it Anni, Louise sounds kind of friendly!!) 

 

Even though I am starting to accept I can't statistically manage or beat my "Nicola" situation I want to know more........... was it as Subs suggests linked to my penchant for "weed" ....is it stress, adrenaline and cortisol that caused the bleed... I did attribute it to my raised Blood pressure and now my interest is in how to avoid another one and be confident my body will not fail again...

 

The advice you all gave about being hydrated has for me been the most direct linear connection with my headaches and fatigue / comfort... the days I drink 3L plus of water mixed with cordial I feel much better than those I don't.... 

 

Another question for you all....

 

Screen time... I used to look at my computer screens 10+ hours a day, trading online meant many pages of flashing lines and graphs, I would have a secondary screen feeding news and the TV on playing economic or news reports and this was my normal.... my fiancé and I would then relax watching a box set or something like that...

 

Since "Nicola" I just can't tolerate the flashing lights for so long, this has impacted on my ability to trade and do research and of an evening I am not that interested in watching TV at all

 

OK I will admit to religiously watching Liverpool play which is quite enough additional stress but hope you all enjoyed our Houdini escape act to finish 3rd... Skippy I am sure like me you are over the moon with the final table, though I wish Leicester was top 4 not Chelski.... 

 

Back to my question.. does the tolerance for screens and TV get better or return in people's experience?.. 

 

I hope mine gets somewhat better as I trade to survive financially so without it this will be an even more life changing event than originally expected...

 

Again I thank you all for your replies and answers I find this community so valuable and am talking with Daff to see how I can help support, promote, give whatever assistance I can ....but I will certainly be making sure my Consultant at the Walton Centre gives the link to future Nicola sufferers 

 

Off to do the final part of the outside tap as it's a bit sunny then time to try my welding and start on the BBQ...

 

Take care and be happy all..... Dx 

[Louise]

Yes my tolerance to Tv got better over time.  At the time of mine there wasnt really computers or phones well not in the house anyway mine was 1999 so it was all pretty much in the start of technology at home.

 

 

[Super Mario]

I still can't tolerate the TV 16 years down the line. The movement makes me feel nauseous plus the fact I can't remember what has gone before. I hate the volume too as I am still noise intolerant. Flashing lights are another thing that I am unable to tolerate.

 

I haven't watched the television from that day to this. In fact I have to sit in another room when it is on.

Folk think I am weird as they can't comprehend life without a telly.

[Skippy]

9 hours ago, Eruditedk said:

OK I will admit to religiously watching Liverpool play which is quite enough additional stress but hope you all enjoyed our Houdini escape act to finish 3rd... Skippy I am sure like me you are over the moon with the final table, though I wish Leicester was top 4 not Chelski....

 

Hahahaha yes, I have to admit, I was cheering and jumping up and down knowing that I can comfortably write this season off and know that we'll do better all round next season.

 

Regarding your screen tolerance.  I have worked on screens all day every day for most of my adult life.  When we ran our design agency I would proof read 30 language leaflets and check quiet areas and codes were correctly placed on artworks  - all on screen.  Post SAH I can't proof read anything on screen and have to print it off to check it.  My screen time itself has not been affected at all and working in a busy school office - everything from registers, to payments, to records are all done electronically and I am "on screen" from 8am til 4pm every day with a half hour dinner break.

 

Watching television has not been an issue and I find it more relaxing and easier to cope with than a room full of people all talking at the same time.  

 

Three months after my SAH I went to an all singing, all dancing P!nk concert and enjoyed every minute - I just craved the normality and, although I was shattered after it, it gave me a boost because I managed it.