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  1. Hi DaVinc1 I think SuperMario has just given you some wonderful advice .....talk to these guys at Samaritans and look for other Poland based support and advice groups, here in the UK we have the Citizans Advice Bureau ...they should be able to help and steer you into people that can help... Another thought as a strategy if you are in a position to see a Neurosurgeon by paying .... Change your own thinking, what you need to know is how to treat your situation now ..... not what happened a year ago but exactly now and moving forward...... write down the symptoms, dates sensations, pain, feelings and how they were....but Just the facts and dates... Provide this to the New Neurosurgeon before your consultation and when you see him don't give any indication you even know what a SAH is.... I truly didn't when I was admitted so this is quite easy.. just tell about the headaches, pains etc as they truly were... And from what you have said give honest details of your symptoms as they are now so the Neurosurgeon can try to give a fresh diagnosis. If he suggests tests scans etc then pay for them and have them done. No need to say you have had them before... Your target is a fresh second opinion.... What is important is your health not being right... So have them treat correctly how you are now, don't wish a SAH as the final diagnosis especially if it's a No Cause SAH as the torment of that unanswered diagnosis is horrible belive me... As said I think SuperMario advice was the best and I hope you understand my strategy for you to try... the truth is the name of the illness is not important......getting the right treatment for where you are now is... Take care and good luck... D x
  2. Hi DaVinc1 I am so sorry to read your post and truly wish you can get some help...... it is good you reached out to this group I am sure you will get some good advice... I am not medical and can't give any medical advice and am relatively new to the world of the SAH as just 5 months from suffering mine but your symptoms sound serious and it's vital you get some help.. You do not say what country you are in or much about your status and seem very young to be dealing with this alone..... Do you have family or friends that are in a position to help you, with care or being honest and direct, as I have lived in several countries and know how the world works, what it may come down too is access to money? If you are in a position financially then I suggest you go and immediately get specialist medical consultation and help.. If you don't have money and the government health care system is poor where you are it is going to be much more difficult but your life is valuable so do everything you can to get some help... beg, borrow, use a "go fund me" page, email / write to celebrities or well known philanthropist, charities etc... find a way to get someone who can give you proper medical advice however you can And find someone who can support you and give you care, family or friends if you have them close, or if you have money pay for help and care.... Don't be alone and don't give up....I have had an amazing adventure and for 48 years and 361 days, (my SAH came 4 days before my birthday) though some days were rubbish and painful ...most were a brilliant adventure and all I want is to be able to continue to have my life and journey in good health... Life is awesome, you can make it anything you want it to be.... please try to get your health taken care of and know what you are facing.. All I can say is good luck and I am sure as said before members of this group will give you good advice ... Take care D x
  3. Good morning Skippy and all BTG peeps... Thank you for your message and wise words, as you must know it is all much easier said than done.... I feel more in a fog than anything at the moment I dont understand why it happened with no warning that has been identified and that scares me.... a lot.. I feel like i have done everything in my power to help, stopped everything, smoking/ drinking and all my other chosen narcotic recreational activities cold turkey ..... I am disgustingly clean living now... I sleep 8 hours plus a night/day, yes assisted by prescribed meds which is more than double the sleep I had for the 30 years before... I eat very well and healthily because of my partner, and because of the prompting of BTG members have really concentrated on drinking fluids ... I can't work and have not really tried to push myself as I did in the past.., that is causing me stress about the future and other aspirations and with the total lack of support from the state I do worry a fair bit.. I feel exposed, at risk, anxious, frightened and almost expectant that it will happen again but next time with a worse outcome.... not something I can discuss with my family as I don't want to cause them more worry than I know I already have... So what comes next...??.. will the worries just fade, will trust in my brain not exploding return so I can start to be the old me again or do i have to accept the old Batman Dan has gone and look to see which path my future holds...?? I am not a patient person and am already worrying about the autumn and winter months.. our gardening has kept me sane, or at least distracted but my chess playing mind is already several moves ahead and starting to stress about how I am going to cope with long cold dark days.... I have a question and apologise to anyone that doesn't like the way I have thought about life and people before... (maybe my SAH is my punnishment) People keep suggesting Headway, meditation and other kinds of therapy and counselling.... The Pre Nicola Daniel would have gone into a dark and deep diatribe about people making excuses for their lives and how, why etc its not fair... I believe we are totally responsible for making our lives as we wish them to be with dedication and determination.... I don't believe everyone is equal, some people have gifts of skills and abilities that allows them to succeed at different things.... genius and talent can come in many forms, mental or physical or even attitudinal which enables them to be successful.... Others are ants who are happy to just plod along and do the mundane.. for a total world to exist we need all sorts and we individually decide and determine which kind of animal we are... Did my Nicola turn out the spark that made Batman Dan, Batman??? I once to appease an ex went to a meditation class in Notting Hill which came highly recommended.... I nearly lost my £€^& with the people running it ....talking about streams of air coming out of the top of their heads and other utter, utter nonsense ... So how do I now turn to these people, these groups that I struggle to accept or value with a mindset that they can help...? Any thoughts or views from BTG members would be greatly appreciated, I have probably used this forum to openly vent my angst and raise questions I have... and because you all have real experience I trust and value your responses... My Neurosurgeon and Consultant is I belive a world leader in his field but his team also discharged me with the "you will be back to normal in 6 months story" because they have nothing more than a 3rd party understanding of what we have all been through so how on earth can an "Ologist" of any kind help... I look forward to everyone's thoughts and views and as always thank you all and wish you a wonderful happy weekend... I am off to Manchester Chinatown to buy food and maybe if my fiancé gets her way i might have a haircut. I have been hiding behind COVID and my Nicola for neay 2 years now and grown it for fun and now I look like a sheep 😉 Dx
  4. Hi Karissa, as a recent SAH survivor (or as I like to call it my "Nicola" Sturgeon)and relative BTG noobie, end of January this year, hello from Daniel, you are lucky to have found BTG so quickly, the best help and kindest people I have found since getting out of hospital.. Firstly you sound like you are doing amazingly well, if you feel that well now I would believe you will make a great recovery, keep being positive.. You have asked a very similar question to how I have been feeling recently What's happened to me makes no sense and i also feel like ...did that really happen to me, was my life that close to being over or changed forever.. I look the same (sadly put a few KG on from being so inactive since) seem to function in all departments... 😀 Why? How? Did I bring it on myself? If I did will I bring another one to get me? (Law of expectations now in play?) You sound from your post like you are fit and healthy and rather clean living in many respects.... I on the other hand have been a poor owner of my body, truly thought I was indestructible, was fit and sporty but had vices worse than Nick Hancock... Which, if what I have been told by all the medics I have asked means a resounding NO to questions 3 and 4 ... There seems to be no answer to why an apparently fit healthy person has a No Cause Nicola....which is wholly and completely unfair and wrong.... for me it's almost worse than what actually happened I have asked this forum for data, statistics, where can I drill down and get answers to those questions.....having scoured the Internet and spoken to a couple of high profile medical people what have I found.. I sadly have to admit my conclusion, which is the killer punch, so if you are data / information driven be ready to be disappointed.... There is no answer .... life's lottery... random... I don't want to be a pessimist I am by nature optimistic... but I always took life for granted... Daniel's coping strategy... Maybe what happened is a nudge... to value your life every day, enjoy and show that you care to those special people around you, every day is a gift, value what you have... Be satisfied, be happy... sounds simple but that's the way I am trying to deal with it.... I too am struggling to make sense of the whole thing so if you find any answers please let me know.... On your final point again something I have been trying to work out... when and how do you start to trust your body again??... because 5 months in I sure don't... I was told I would be back on a tennis court and full contact boxing in 6 months ...not a chance... (I freak out inside with every tingle and sensation in my head or neck) My damage was psychological rather than physical I am sure... maybe that's an avenue to look down too for answers.... I wish you every success in your recovery and search for answers I will gladly answer any questions I can for you but defer to all the longer term members here that have given me so much sound advice.. Take care and as I said before... most important of all... Be Happy Take care D x
  5. Hi Tina thank you for your kind message.. BTG has been a wonderful to me in these past couple of months, its so important to be able to communicate with people who really understand what's its like rather than a "medical opinion".... I hope some of my posts or threads have raised interesting or important points and that I can be a valuable member of this community.. I am sorry to have been so quiet in the last week or two, life sometimes takes over and trying to adjust to a new pace of life and my capabilities is a struggle... I am finding the "recovery" quite difficult to be honest it comes in waves and I feel like I am still at the beginning of this journey... I do not know whether what happened has really sunk in yet, there are times I feel very normal and others where its like walking through treacle... I do know this slow pace of life is really stressful for me which has been temporarily releived by good weather and the gardening we have been doing, without that I would be driving my fiancé and cat loopy as well as myself... After 5 months if I had taken the recovery timeline from my Medical team I would be back to normal, working, trading, playing tennis and getting ready to restart contact sports like boxing.. Reality is I am no where near that and am feeling very frustrated..... As a question to all.... when / after how long, did you accept your new life? Did people get depressed when the realisation of what happened sinks in, or euphoric at just being alive? I am nearing the point where I am going to need to find a purpose after always being driven taking it easy does not sit well and I find days I am not busy with the garden quite slow and painful... There are no local help groups for SAH sufferers here in Staffordshire that I have found and not being the world's most PC individual I have shunned the worlds of therapy and counselling throughout my life... I am now hoping that I can find a way to accept what happened and makesense of it, make changes to accommodate some of my new weaknesses instead of feeling as lost as I do a lot of the time at the moment.. Anyway I will keep checking in, hope everyone is well and you all have a great weekend.. D x
  6. Hi Michelle Congratulations on your 7 year anniversary its very motivational for me to read positive stories several years after a SAH and I love how the lucky people who have found this group recognise how special a place it is for fellow sufferers... Being in my first few months post incident..its scary so to read people's stories and experiences but also confirms the survival and ability to move ahead with life... It sounds like you had a lovely day and I wish you enjoy the good weather and your surroundings... Take care and be happy D x
  7. Hi Super Mario thank you for your reply... I have kept copies of everything.. good training being in banking I am very good at record keeping and documenting situations and communication... Do I qualify?... therein lies the problem with my "Nicola" ... Rather than being the instantly recognisable diminutive red head who's annoying voice cuts glass in an instant and brings anger and annoyance on sight ... My Nicola SAH left no visible imprint to the outside world... as I have said before apart from the addition of a few KG I look and sound the same as before it happened.. For short periods of time depending on the day I am able to function... However, am I able to live and perform as I could before on a regular basis... absolutely not... A good example will be today.. for no reason I can identify I have not slept a wink all night and finally got up at 5.30 this morning as I was driving myself mad and didn't want to disturb my fiancé or the cat who were sound asleep.. Based on the last few months I expect I will not be able to function very well at all today... I will have little energy or motivation to do anything which will include being able to organise food and drinks for myself or do any required shopping.. as a description today would be a day I would stay in my robe watching Jeremy Kyle and Judge Rinder so would qualify for benefits in an instant 😀 I am very very lucky in that my fiancé takes care of me and is perfectly capable to running the show while I recover so I can lean on someone...if I was alone I have no idea how I would have survived this last 4 months.. Will this translate into financial support...I don't know / doubt it... based on the timeframe it is taking to organise any help since Nicola arrived I would be bankrupt and living under a bridge before any help comes my way... My garden has just (this morning) been sprayed with an awful chemical as the lawn area is covered with Ground Elder so none of us can go outside today as its quite toxic...its taken me 2 hours to write this message so you can see I am not functioning well at all today .. I wish everyone else a happy and successful day, take care and enjoy the good weather.. Dx
  8. Hi All I hope everyone is well and enjoying the sunshine... Thank you all for the advice I spoke with the CAB and read lots of pages online then filled in the PIP form so now I have been told I will have to wait approx 8-10 weeks before they send for an expected phone call assessment as there is still a backlog due to COVID.. I am finding the benefits or lack thereof system to be pretty unhelpful and very slow there seem to be long delays with the processing of everything... I don't know how you are supposed to survive and remove stress and pressure from your life so you can recover if you had to solely reply on them.... I have been enjoying the good weather and not really doing very much which is a very strange state to be in...I went from living at 1 million mile's and hour to almost standstill with my "Nicola" and find it very frustrating and actually quite stressful...some days seem to drag on and on but at least being able to be outside helps.. I hope everyone is doing fine, take care and be happy Dx
  9. Thank you Super Mario for the advice it sure does seem like a minefield and your comments have made me realise I must take some advice tomorrow and look for an advisor as you suggest.... Having only known the UC system and the advice or lack of it i have received from them I need some guidance as to what is possible and how best to present my case.. As mentioned its the invisibility of a SAH ...we dont have huge plastercasts or visible signs that allow people to recognise we are injured.... I look relatively normal haha well the same, just a bit fatter than I did before it happened...!! Thank you again, I hope everyone has a good night.. Dx
  10. Hi Clare.. Again I will have to show my ignorance.... I signed up for UC and told them about my SAH so they sent me a Capability for work questionnaire. This was a long form which I believed 1) would stop them asking me to look for work at the moment and may possibly bring some financial support if they assess me to need it.. I was told this is not the same as PIP which I have just in the last 2 weeks applied for even though I have been asking for help for the last few months it was only recently a new UC advisor told me I may be able to claim this also.. I say also, I am not getting any support for being unwell at this time just standard UC for not working. To answer your question Clare I have absolutely no idea what my future holds work wise... there are days when I feel relatively normal and there are days I can't do anything and lack motivation...I am struggling with not being the old me both physically and mentally... Could I go back to my old professions.. unlikely ....but if I make a 100% recovery then yes.. without it being a 100% recovery then I don't think I could do either Propery redevelopment in the same way or the mental side of finance and trading full time... How have others coped with this aspect of recovery as in a dramatic change of life direction?? I am not wealthy enough to retire so will need an income but don't want to go from seniority in my chosen fields to a job in muppet territory because of my SAH (sorry if that is not PC I hope people understand what I meant) I hope you can recognise that my aspirations have not gone I just no longer trust my body and how I can achieve my goals and seem to be quite unsuccessful at navigating the benefits system so far.. As always looking forward to any thoughts and advice and hoping everyone is well.and happy .... Dx
  11. Hi Super Mario thank you for your reply... Please excuse my ignorance I am very new to the world of benefits so I have no idea what the ESA is? I have put in a medical form regarding my lack of ability to work at this time and am waiting on a call or meeting about that... I will read through the link you sent and see what advice I can garner..... I have been told by a few people that the benefits system is very hard to negotiate if you don't come from or have understanding of its mechanics so I am quite in the dark about what I can or can't apply for in terms of assistance and as a SAH is invisible its so hard to quantify how able or not I am.. Looking forward to any other advice Sitting in the garden enjoying the sunshine but feeling quite odd not being able to work, or working... its quite an unnatural state to be in.. Hope everyone is well and happy Dx
  12. Good morning All I hope everyone is well and have been enjoying the sunshine over the last few days... I am starting a new thread as I would like some advice if it is possible on benefits and the fall out from having suffered an invisible injury "Nicola or SAH" I have been out in the garden as much as possible and away from technology which has been lovely... our real wish fpr our life is a small holding and mini farm so we are trying to do some field tests in the garden and greenhouse to see what is possible to grow, both naturally and as the summer phase passes assisted growing environments with light and heat... As my fiancé is Asian we tend to visit the Chinese and Asian supermarkets regularly and the costs for basic herbs and vegetables are ridiculous.... we hope there is a way to grown year round here and develop a business supplying high quality, organic Asian vegetables ....a dream nearly shattered by my "Nicola" (SAH) as I don't have strength or energy like I used to have... My question is based around the ability to claim benefits or financial help in the UK... i have been sent an assessment form to complete for PIP having already put one in for being unable to work at this time.. The problem I see from reading the form and I would like others opinion on is how on earth do you answer the questions truthfully when each day is different.. Can I make a cup of tea?.. yes if you isolate that function... do I feel like I want to much of the time, do I need help to remember to drink enough ( I really thank everyone here for highlighting the need to drink as much as possible it is some of the best advice received so far) Am I lucky my partner organises shopping so we have the things needed for me to live and survive.. Yes of course... would I survive alone?.. with food delivery and supermarkets delivering yes I guess but without Kae's help life would be far more difficult... Can I dress myself.. yes I can sometimes.. sometimes I have zero energy but am happy to wander around in a Robe looking like a Jedi Knight... I have taken on board the advice you have all given before about taking it easier and being kinder to my poor brain... I can't trade Forex currencies as I did as I can't focus and concentrate in the same way and I surely can't develop properly with the hands on approach i used to take I don't have the physical power I had before.. However, for answering questions on the PIP questionnaire there is no space for the variable of time of day, how I am feeling etc which dramatically affects what I can or can't or want to do from motivation to actual energy.... Any answers and guidance would be greatly appreciated even though i have been very lucky with the aftermath of my " Nicola" it has most certainly been life changing ... like everyone I want to be self sufficient but do know that my greatest luck is having a partner who looks after me As it is still sunny I will venture outside again, some days I get very little done, mowing the lawn used to be a bit of exercise.... now it has become a mission....I do really miss the old 15 Yr old batman who had endless energy and hope there is a way for him to recover eventually... Take care all and thanks again D x
  13. 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
  14. 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
  15. 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
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