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subzero

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Posts posted by subzero

  1. Hello Davie and also a warm welcome to your return to the BTG site.

     

    You will certainly get lots of support from our members and feel you are not alone in dealing with the various complications from being a post SAH survivor.

     

    Keep strong and never give up.

    Telling of how you face your struggles will greatly help others too.

     

    Davie, you said you visited BTG back in 2015, so I did a little sleuthing.

    This certainly looks like your contact with us back then. I hope it jogs your memory. 😊

     

    https://web.behindthegray.net/profile/2835-davieh/

     

    Take care and keep in touch.

     

     

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  2. Hello Ann ...yours is quite a story to share! You have done so well to cope with all that has happened.

     

    A second aneurysm 10 years after the first and now a year on finding you have to return for the clipping procedure ..... I can't imagine how you and your family are dealing with the pressures and anxieties.

     

    At least you have that date in September to focus on and the relief  that afterwards you can recover and move forward.

     

    Wishing you good strength for the weeks you and your family must wait.

     

    Many thanks for the posts you have shared with our members especially in the past year.

     

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  3.  

    Hello Dawny .... so glad to hear that  procedure date is has at last been set for next month.

    Well done for coping so well with such an extended wait. There is always a measure of anxiety with any procedure, and more so when our brains are the area in question.

     

    Please continue to be positive for these remaining few weeks, and I can`t imagine the feeling of relief and satisfaction when you are eventually discharged and able to concentrate on the rest of your life.

     

    Those close to you are probably even more anxious than you are yourself.... spare them a thought too. :thumbsup:

     

    Take care and best wishes for `that` date in August.

     

     

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  4. Hello Daniel and thankyou for openly sharing your feelings this far, following your 'Nicola.' (NASAH)

     

    When you reach your hairdresser's chair soon, and as 'she' attacks your sheepish locks, re-read your post above and deliberate how much has been about ewe! 😊

     

    You do sound like a 'caged animal' and all that it implies.

     

    As many of our members have often reiterated, in that first year the healing process is very simple. Rest, no stress, plenty hydration and at best a slow phased return to work if that is an option. No fast track route is acceptable to a traumatised brain.

     

    You are building up so many worries in your mind about the future months. (and maybe rightly so.), but remember one thing the statistics do show,..... and BTG membership are an extremely good 'random sample' .... is that the recurrence of a bleed is extremely rare. Surely you can take much reassurance from this and worry less.

     

    You are right when you muse that everyone chooses their own life map, and yes, it is commendable to strive hard to achieve your goals. However the simple fact is that we often do not realise until it is too late what effect this constant strain has done to our finite bodies  both physically and mentally. 

     

    Then an explosion !!! .... brings us, for a time at least, unable to even live up to the lowly ant.

     

    Your comments on 'mindfulness' reflect your own opinion, however some form of mindfulness or meditation has been of benefit to a good number of our members, with others finding solace and peace from spirituality in the form of their different religions. 

     

    Recovering to some degree following brain trauma takes everyone down their own pathway. 

     

    Perhaps I have missed some of your comments on BTG, but how is your partner coping with the changes brought upon both your lives by NASAH? (Pease do not feel you have to answer.)

     

    Returning to work is something that most survivors strive to.

    In Mrs Sub's case when following a long phased return, she was back at her stressful work, multi-tasking, quick decision making, deadlines every day and endless tough meetings. ... she made it for a year, but at what cost?

     

    Shattered each evening and unable to cope with the fatigue...then next day more of the same. 

    The crux came when they offered her a promotion to an even more stressful job.... decision was then easy ... retirement and a return to partime work at a lower grade.

     

    After 10 years post SAH I am so pleased that we both have our lives back. 

     

    We are content with our lot. 😊

     

    Take care and trusting you and partner will make the right decisions for your future. 

     

     

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  5. Hello Michelle and congratulations seven years on. 

     

    Thanks for your open reflections on how you have faced the past 12 months and so glad you are building your self confidence along the way.

     

    That was a nice day yesterday, spent with your friend Mary and four legged friend Molly. 😊

     

    Your reduced postings have been missed as is everyone who decides for whatever reason to  post less. Every post on BTG has a positive effect on our members and is often the right word at the right time. 😊

     

    So wishing you a positive year ahead.

     

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  6. Hello Cindy and also a very warm welcome to BTG. 

     

    As Michelle mentioned, you will find much information from the personal accounts by our members which may help you in your quest for answers.  

     

    Also you will find reassurance knowing you are among friends who also have sought explanations to the after effects of their brain trauma when they had nowhere else to turn to.

     

    Can you provide a brief  summary of your time in hospital 8 years ago and what diagnosis and prognosis were arrived at by the neuro specialists who looked after you?

     

    You certainly have received a wide range of medical help to try to find answers to the head pains you describe. I can't begin to imagine how upsetting it must be over such a long period  of time.

     

    The following links will provide an insight into how many of our members felt and dealt with their pain,scalp issues. 

     

    https://web.behindthegray.net/search/?&q=Headaches &search_and_or=or

     

     

    https://web.behindthegray.net/search/?&q=Itchy scalp&search_and_or=or

     

    https://web.behindthegray.net/search/?&q=Tight scalp&search_and_or=or

     

     

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  7. 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

  8. 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

     

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  9. 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.

     

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  10. 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.

     

     

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  11.  

    Hi Daniel ... you may find this link of interest too in as far as it relates the feelings of a spouse on the 'other side of the fence' when her 110 mile an hour neurosurgeon husband couldn't 'prescribe his own medicine' following his own bleed.... and incredibly the comments from his neuro colleagues who should have known better. 

     

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  12. On 09/05/2021 at 14:41, Skippy said:

    0.186% of those that have a brain bleed survive - how's that for perspective hahaha.

     

    Also very interested in the source of this statistic.

     

    Daniel when Mrs Subs was transferred to Western General in Edinburgh for her coiling procedure this was the first helpful site I was directed to. 

    https://patient.info/brain-nerves/subarachnoid-haemorrhage-leaflet

     

    Many helpful comments.

     

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  13. Hello Daniel and again thanks for your post.

     

    2 hours ago, Eruditedk said:

    I would like to hear others accounts of why and how they made decions about smoking, drinking, caffeine, physical exercise, pushing the boundaries, ....

    You will bring up many posts by entering these topics individually in the BTG internal search option at the top of the home page, but no doubt you will already have tried this.

     

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  14.  

    Hello Daniel

     

    Many thanks for your frank comments as you try and get to grips with the hand NASAH has dealt you. 🙂

     

    You made me smile .... after all the `gentle` advice we have given you .... you do this....:yikes:  :mad2:

    Quote

    As an example and I have no idea why,I decided to buy a stone fireplace today because it looked really nice and no, before you ask I have absolutely no use for it at this time in my life at all, and like I needed to hump 300kg of granite in and out of my car... my fiancé was not impressed...  ( neither were we !! :shock: )

     

    You said you were used to living in the fast lane... 

    Quote: .very high functioning both mentally and physically...I thought I was Peter Pan who never aged past 15.. played tennis at a high level could do 16 + hour days of hard physical work long after my younger staff had fallen away... survived on 3-4 hours sleep and for fun trade cryptocurrencies and forex balancing exchange rates in my head as I enjoyed mental gymnastics..

    So you were used to making quick decisions where the consequences of getting it wrong could be cataclysmic !

     

    We at BTG are trying to tell you that at this moment 3 months post your bleed, it is not too late to make the biggest decision you will ever make. You say that there are still so many unfinished plans for your life. These are now at risk .... do you think giving yourself and your brain the next 6 months to a year to attempt to heal ....... is a price worth paying?   One crucial decision for you .... dare to weigh it up !!

    Remember ... slow,  slow, slow `.

     

    A dear friend of all BTG members, Winnie,  sadly passed away a year ago and she offered simple advice to all who ventured to introduce themselves to the site. She said repeatedly ...` No stress, sing happy songs, and stay away from everyone who has negative thoughts`

    Many fail to head her wise words in these early recovery months.

     

    I genuinely hope you make the right decision for you and your fiancee.

     

     

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  15. Daniel

     

    Hello Daniel and also a very warm welcome to BTG.

     

    Also so glad you have found BTG as you will definitely get help in understanding the challenges of SAH/ NASAH from the first hand comments of our survivor members. As others have said, this is not medical advice but solely based on how each have faced their own set of issues post SAH. There is no single `route` to follow as each bleed and individual has their own unique journey.

     

    When you are discharged by the specialist neuros who have helped you survive, they are unable to tell you what you will face. At that stage they do not know:-

    The full extent of brain damage caused by the bleed. (resulting in fatigue, personality and behavioural change, headaches, memory loss and dexterity issues and others) 

    Your personal circumstances such as family support, financial commitments, employment circumstances and how that can be adapted to your recovery.

     

    Taking your points as they arise.

    ` I don't want to burden my family`  Unfortunately your family are already involved. At this early juncture you have no idea how heavily they are involved. You are fully concentrated on `you`, and trying as you have said… to get back to where you were. Please be very aware that they are in turmoil with the same desire to know when you are going to get better …. And they are already trying to deal with all the changes that you have referred to in your posts on BTG so far. I can assure you they are very confused and looking for information too. (please try and refer them to the Carers Forum` on this site. They need BTG too as much as you.

     

    `My life prior to the SAH had been a wild adventure`   please heed the advice our members have already offered. You cannot outwit SAH with your previous abilities. This is now a partnership ! You need to accept that your brain and functioning have been seriously damaged by the bleed and accept this and move forward slowly…. you are now running a marathon, not a sprint… and taking a long term approach (many months and years) rather than weeks as in a normal hospitalisation …. you will as already commented on at times, take one step forward and two back.

     

    `Wow was this SAH a rude awakening`. …….  Welcome to the BTG membership.

     

    "relaxing smoking herb"  Important to ask your GP the effects of completely stopping this habit.  Also on you next contact with your neurosurgeon, please ask what the effect of long term `weed` use could have on the brain.

     

    `All I can say about the care I received from the NHS is that it was incredible, many of the nurses and doctors are indelibly written into my memory...` You have got this right 100%


    `However, at this time it is I who is in need, maybe a delayed reaction or realisation that I am not who I was before it happened I feel quite lost and alone in how to deal with the cards I have been dealt..`  BTG and it`s members can help. There are so many accounts in the Forums about coming to accept the reality of this statement. But please also keep in view that improvements can be made with your understanding and the cooperation of your family, friends and employer.

     

    `I am vastly weaker physically than I was for sure and have the energy levels of a 300 year old which has presented in my evenings being uncomfortable rather than painful after a day of doing very little..`   You have already received the best advice from our members.   `slow, slow, slow`. !

     

    `Did I just break all the rules and advice I am reading on this forum of being good to myself..`  We cannot say for sure in your case… but you can read the many `fatigue` instances relayed by our members. SAH/ NASAH does result in various levels of fatigue but can be managed by recognising your damaged brain and body can only take so much.

     

    So Daniel, we welcome your future posts about your coping strategies. Our members can assure you that you can have a life post bleed. That life relies on an acceptance that change to some degree is inevitable. I do hope that you and your family and your employer give SAH/ NASAH the respect it deserves and together give you the best chance to move forward.

     

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  16. One year ago tonight a great friend passed away so unexpectedly. 

    Winnie you were the best. 😊  You have left such a void in so many of our lives.  

    Always thinking about you. 

     

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  17.  

    Jean, well done four years on.

     

    Your pragmatic approach to life after SAH, is standing you in good stead. Many thanks for sharing your thoughts openly along the way since you found BTG. It`s great to see how you have adjusted your life to deal with the hand SAH has dealt. 

     

    As you say, you now have so many positives to look forward to with a grandson on the way and your son`s engagement.

    Keep up with the Spanish .... a special challenge for you. 

     

    You live in a lovely part of the world. Mrs Subs and I visited Corner Brook on our 40th anniversary two and a half years ago en route to Quebec.

     

    Wishing you and your family well for the years ahead.

     

     

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  18.  

    Hello Rory, and also a warm welcome to BTG.  So glad you found the site early and as others have said, you will receive great support. In reading the various Forums, you will get a wide perspective of SAH/ NASAH and what is has meant for our many members. Over the years BTG has been a focus for several US survivors from a wide range of states. You will come across their posts as you read.  

     

    Like you our members began with little help and information about what to expect, and in some way that is understandable as the effects of brain trauma are varied in severity and longevity. Damage to the brain has many different outcomes depending on the position and severity of the trauma. Some members have many, many years behind them and you will find all comments of value.

     

    You mention that you feel you have regained 75% of your former self.  How you approach the remaining 25% is so important. It is perfectly understandable to want to achieve the return of your former self, but it is also wise to know that for the majority of our members the journey is about being realistic and adapting as they discover that their brain and body say `NO` ! to the direction they are taking. 

     

    Having patience to accept the long term nature of any recovery is so important and while it is good to want your old self back, keep in mind that pushing the boundaries too early can have a negative effect on recovery and be psychologically upsetting when you realise that your body and brain limit where you are trying to go.

     

    The fatigue and headaches you mention are common and can be distressing and debilitating should they become prolonged. As others have said, it is very early days for you and it can take several months before a better prospective of your challenges becomes apparent. Irritability and mood changes are also common as well as trying to cope with noise interference when in crowded areas. However a positive attitude and keeping away from stressful situations helps greatly in these early months. 

     

    So I also wish you well on your journey and trust your close family and friends and work contacts are positive in their dealings with you.

     

     

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  19. Hello Clare, also a big well done 6 years on.

     

    So glad you didn't choose to give up your running. It's been great to follow the different distance challenges you've set over the years.

     

    Well done for facing your SAH journey challenges, and changing life and work when you knew change was the right thing to do.

     

    Change for you wasn't admitting failure but rather embracing an opportunity to do things differently. 

     

    Thanks for your helpful and encouraging posts to members ...much appreciated. 

     

    Keep on running and enjoying life. 😊

     

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  20.  

    A  BIG congratulations  SM, 17 years post SAH is quite a journey.

     

    You have certainly so much experience to relate to our members from the many lows and highs along the way. Well done.

     

    One thing you have (probably even more than MZ himself) is plenty of grit and determination, and a desire not to let any SAH limitations restrict what you want from life.

     

    Saying goodbye to Penny was so hard for you but it is great to see how your new doggy friend Kizzy has brought many smiles to your day, and I also hope there will be holidays at your favourite resorts in the future.

     

    Take care and keep safe.

     

     

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    PS  And I thought you did have a bit more `dosh`  than the FB boss himself. :biggrin:

     

     

     

     

     

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  21. Hello and many thanks for keeping on touch.

     

    The years pass by quickly and we (survivors and carers ) learn more about ourselves and how we deal with life post SAH. Great to hear how supportive your husband has been. His life and focus has also undergone much change. 😊

     

    Keep enjoying the outdoors.  A great way to bring positivity to a crazy world at the moment.

     

    Well done almost four years on.

     

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