Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by subzero

  1. 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. Subs
  2. 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 Subs
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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. Subs
  8. 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. Subs
  9. Hello Daniel and again thanks for your post. 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. Subs
  10. 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.... 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 !! ) 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. Subs
  11. 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. Subs
  12. 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. Subs
  13. 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. Subs
  14. Congratulations 9 years on Daffodil. I'm sure you never thought you would be floating down river on your water-board. A great achievement. 😊 Keep up that 'never say die' spirit. Subs
  15. 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. Subs
  16. Sarah absolutely delighted at your news. Your feelings of relief and joy must be immense following all these anxious months of uncertainty and frustration. Subs
  17. 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. 😊 Subs
  18. 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. Subs PS And I thought you did have a bit more `dosh` than the FB boss himself.
  19. 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. Subs
  20. Hello Phil, please don`t apologise for sharing how you are feeling. As has been said so many times, we are all here for each other, and getting support and help through the `down` moments is one of the main reasons this BTG site was formed. I was just revisiting your first post when you joined BTG in March 2017. You like many have been very fortunate to survive at all. I am sure you will agree that much of the great advice given by our members back then still applies to your situation today. Working in a high powered stressful environment and taking part in the various physical activities (your 100 mile cycle run) all seem so unachievable now, and you still having to work so hard to provide for your family post SAH is probably the main factor in your continued fatigue. Many of our members feel that fatigue and have not been able to return to work. Getting to that place where you and your family and employers can strike a balance that enables you to feel you are productive at work and also in your home life is so essential. I am sure that our members will share their experiences with you, and I hope that you can once again begin to live with accepting that life after SAH is going to need many changes by yourself and those around you. You can draw on your previous willpower to make this new life a reality so that you can find positivity in building your future again. Face these difficult decisions together and act on what you feel will be best for you. Take care and I wish you well for these challenging times ahead,. Subs
  21. Many thanks for sharing Sarah. So glad everything went well in the end and hope you wont have too long to wait for your scan results. Well done and for surviving the driving scare. 😊 Subs
  22. Hello Sallios. You have a very valid question about whether SAH survivors having an increased risk of dementia. As BTG is a support site rather than a medical advice site, your own consultant and medics will be in a better position to answer. It could well be that there are members of BTG who have had to deal with dementia at a later date and they may well comment on their experience, however the subject you raise is complex. SAH occurs in many different areas around the brain and each bleed or trauma has its own degrees of severity. Relating this to a later onset of dementia is a difficult question and only experienced medics will be able to offer qualified advice based on many studies. Subs
  23. Hello Deborah and a warm welcome to BTG. So glad you were able to find the site so soon after you SAH. While we don't give medical advice you will receive much support from our members who have 'been there's and all have their individual experiences to tell. Reading their recovery journeys in the forums will give you much reassurance for your own recovery. All brain bleeds are quite unique and it is only in the weeks and months after that you discover the challenges you have to face. Some physical and some emotional. Andrea has explained so well the importance of accepting that patience and time are essential to let your brain heal. Wishing you well as you begin your journey. Share your feelings with your family and close friends so they can understand that while you look ok, your brain has undergone trauma and needs to heal. Hope your father is okay Subs
  24. Hello and also many thanks for taking the time to share one year on. Great to hear that you feel positive with life after SAH, even though you know that there are many issues that you are still trying to figure out and come to terms with. Some perhaps improving with time, and others where you feel `is this it ?`. This site is a testament to continuing improvement over many years. Keep taking each day at a time. In SAH terms one year is still early in your journey. Be patient, positive and protective of your healing brain. It will keep reminding you of your limitations. Wishing you well as you continue to face the challenges every day. Subs
  • Create New...