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kempse

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Everything posted by kempse

  1. Hi Louise, I've only just read this thread and just wanted to say "well done" for all you have achieved over those 22 years and also for helping so many others along the way. I know when I joined this site in 2010, two years after my own sah, you were one of the first to welcome me into the group' I also, at that time, joined another uk based group and you were on there helping others too, which you may or may not still do. Like Colleen, my 14th annie-versary falls within this next week too and it's sometimes hard to believe where all the years have gone, but like you say, other times, time can appear to drag. I, like you, also face having to have the 'third' covid vaccine by the end of this week and I agree it is a challenge and a step into the unknown mainly because covid is relatively new and in my opinion, for anyone who falls under the 'high risk vulnerable group has the added pressure of hoping the current advice from the scientists in the medical field won't change when more is known about covid. In particular the effects of the 3rd vaccine on that vulnerable, high risk group - so I do empathise and share your concerns. Although the general consensus is currently to have the third vaccine, I must admit, my personal situation is making me feel a bit like a guinea pig!! xx Anyway Louise, you continue doing as well as you have and all the best to you and Ronnie as you step into your 23rd year💜 Take care, Sarah xx
  2. Hi Adam and a warm welcome to Behind the Gray. I'm sorry to hear you had such a rough time. Not knowing what was happening and having no family around to support either would be a bad experience in anyone's book. Anyway I'm glad you're back home now where you can concentrate on your recovery. 6-8 weeks seems to be the standard that doctors tell you, or at least mine did too. I think it is very misleading give a time span like that as many survivors take considerably longer than that. As for telling you that yours was one of the good ones, well I've never heard anything so stupid! There is certainly nothing good about having a bleed on the brain, it's a serious traumatic event - end of !! Obviously some people to come out of it better than others and hopefully you will recover well. Tiredness/fatigue are very common and rest/sleep is a must where possible as is drinking plenty of fluids to keep any headaches at bay. Mine was caused by an aneurysm rupturing, so not the same cause but it was a low graded sah. I had 5 months off work, then only went back part time. Tiredness was a major problem for me, so much so that once I didn't wake up from a day time nap in time to collect my then 8 year old son from school! Glad you found this site and all the best in your recovery, Sarah
  3. Hi Dawny, A warm welcome to Behind the Gray and I'm sorry that your original post was missed and not replied to. I remember that hesitation about posting for the first time so can understand that it can take some courage to do. Hopefully your trust in posting has now been restored by the responses you have received Much of your post resonates with me although my experience was long before covid was ever heard of. I had a SAH in Nov 2008 and following my first check up they wrote to me telling me they wanted to recoil the aneurysm and they were looking at doing this within the next 3 weeks. I took this time frame to mean it must be fairly urgent and my emotions went into overdrive! This 3 weeks actually turned into approximately 8 months before I had the recoiling done. During that time I had dates for the procedure booked twice and both times they were cancelled - one on the morning I was due to go in. Since then I have been monitored annually as my aneurysm has a wide neck and I also have a 3mm aneurysm which they check at the same time. Over these 12 years they have twice called me in to discuss treating the aneurysm for a third time although this has never taken place. In 2019 they incidentally found a DAVF in my brain, but to date this has not been treated either. What I have learnt over the years, having gone through what I have, is not to panic like I did in those early days and be grateful that I am still being monitored. I hope you're not waiting too much longer - I also know the feeling of relief after the procedure is immense. Wishing you all the best, Sarah x
  4. I haven't had my Covid vaccine jab yet Hubby will be setting off for his injection in the next hour - he probably got his because he's in his sixties and I'm still a spring chicken in my fifties albeit only just! In the meantime I shall just have to continue ducking and diving to try and avoid catching the virus. I'm sorry to hear you had the virus over Christmas Tina, I hope you recovered well and haven't any lasting issues - sending hugs x Sarah
  5. That is so kind of Macca's family, enabling this site, which helps so many, continue into the future. Macca will always be remembered by those who 'met' him through this site as someone who always put others first, always willing to help others with his sound advice which was gained through his own recovery from a sah. He had an amazing gift of writing his posts so eloquently, leaving the reader with knowledge and advice that came from the heart. Sarah x
  6. Sarah, I am so very sad to hear that your lovely Mum has passed away, you must be devastated - my thoughts are with you. Reading all these tributes has brought a tear to my eye as I too will remember Win as a lady with a great heart, a fabulous sense of humour and an infectious singing voice. She was a remarkably strong person for recovering so well after her sah with all the added problems that she encountered along the way which you bravely shared with us at the time. Then we met Win on here and she became one of the family and kept us all entertained with her upbeat attitude. She will always bring a smile to my face as I remember her posts in the Green Room, she will be missed by us all. Love to you and your Dad, Sarah x
  7. HI Jenni, It saddened me to read your last post, but never give up hope. I agree that life can be so cruel and I know from personal experience how upsetting these events can be and how it can be detrimental to your mental health - at least it was in my case. Take any help and support available, keep with this site, maybe visit the green room and hopefully it will all be of benefit to you like it has been with so many of us during recovery. Sarah x
  8. Hi again Jenni, The delay in getting attention certainly concerned me at the time and I did make a complaint, via my GP to the ambulance service although I never heard anything further. So yes, it's always a welcome miracle to come out the other side! It certainly is hard having children to care for when this has happened. Mine were 8,13 and 15 at the time of my sah and have all turned out fine despite the difficulties during my recovery. I'm not sure if my then 8 yr old even remembers the day when I forgot to pick him up from school because I'd fallen asleep! The double vision I had only happened the once and lasted approximately 15 hours, I had a ct scan etc, but in the end the hospital said it was an acephalgic migraine. The zig zag flashing lights came in episodes, the first being a day or 2 after the coiling and lasted about half an hour. My sah was 11 years ago and whilst I have suffered these ever since, the frequency has reduced dramatically. I was put on beta blockers after 2 years of having these which definitely helped reduce the frequency. (I'd been referred by my neuro consultant to see a neurologist and ophthalmologist) In the very beginning I could have these episodes several times a week, although my vision was ok in between. Despite having had hundreds of these episodes since my bleed, each year the frequency has gradually lessened until last year when I can only recall having had one episode. The ophthalmologist said it was aura of migraine in my case. Things will get easier Jenni - and the help you eventually receive from the brain injury people will assist greatly and once you feel stronger in yourself, things will become easier to manage. Take care, Sarah
  9. Hi Jennie, Excellent advice from Macca which hopefully will help keep you focused. It appears you are having a hard time of it all and you mention the fact that you regret calling for an ambulance at the time, which is making you believe things may have been different if you didn't have to wait 5 days before being operated on. Even if you had rung at the time, I doubt the outcome would have been any different. When I had my bleed at the age of 46 I did call for an ambulance whilst it was happening, but it was still another 10 days before I got operated on because the paramedic in the ambulance didn't think I needed to go to hospital! So it is not always clear cut between what you expect should happen and what actually does. After my operation I suffered with zig zag flashing lights in my vision, but not the blind spots or blurry vision you describe. I was also re-admitted to hospital a year later with double vision, but that has been the only time that has happened. I hope you get some answers from the next test they are going to do, but like others have said, it really is early days for you so don't just assume that things won't improve, because often things do - wishing you all the best, Sarah
  10. I also read that on Google Sally, but like you say I'm still ok and I've had literally hundreds of episodes. I'm having an angiogram on 24th October, I just hope that doesn't set them off again! Sarah
  11. Hi Sallios If you're in the UK you should automatically get a follow up appointment and/or a scan to see how your coils have settled in, usually between 3 and 6 months after the coiling. Can you describe these auras you are experiencing? I experienced auras immediately after my coiling which was 11 years ago. The first episode whilst still in hospital. I would describe mine as crescent shaped, silver and black zig-zag flashing lights and it would continue flickering for anything up to half an hour. Sometimes there would be one crescent, sometimes 2 or even 3 on occasions and whatever direction I looked they followed my vision so there was no escape from it. It was still there if I closed my eyes or covered one eye. I too was worried about the frequency of these episodes and not knowing what they were or what was causing them. I began recording the frequency, the length of each episode and what I'd been doing at the time - the latter didn't prove much as I even got them during the night as they woke me up. I did mention it at my first follow up appt, but they didn't appear too concerned saying it was quite common following an sah/coiling. As I was being monitored annually and I was still having these auras 2 years later, I was referred to an ophthalmologist at the hospital who confirmed it was the aura of migraine without the headache. Following correspondence to my GP I was prescribed medication and was told it wouldn't completely get rid of them, but at best would reduce the frequency by up to 50%. I'm still on this medication and apart from one episode last week I don't recall having any others this year which makes me conclude that the reduction for me must finally be nearing 100%. I hope you succeed in getting an appointment soon, Take care, Sarah
  12. Nice to see you call in Colleen - congratulations on reaching this landmark with all the hard and busy work that comes with it. As you know I will be reaching the 9 year mark too - exactly 1 week after you. Despite the vast difference in miles between us, I'm sure we will have travelled a similar path to get where we are now - busy and I too shall be spending part of my annie-versary in a meeting lol. Perhaps we need more rest in our lives Colleen ...........or is that just wishful thinking Take care, Sarah
  13. So glad you got the reassurance so soon Sonia - it makes all the difference. Take care, Sarah
  14. Hi Sonia - I think I would be confused too in that situation. I imagine if you just file it, it will keep cropping up in your mind which is why I would be inclined to get to the bottom of it - either via your GP or direct to writer of the letter, especially as the letter states you remain under surveillance, but you're clearly not. I coincidentally found out that I had a 2nd aneurysm by chance while I was at a doctor's appointment - he was reading a letter from the hospital on his computer and when he'd answered my questions, I asked if there was anything else in the letter that I should know about. Not for a minute did I expect him to say I'd got another aneurysm. I've been under surveillance since my bleed in 2008 although having said that, I would be monitored with or without that second one as the one that ruptured has a wide neck and it is in a relatively rare and challenging spot. I hope you go for clarity so you can continue your daily life without it lingering over you, Take care, Sarah
  15. Hi Maeve, I'm really sorry to hear that you lost your Mum when she was so young and you naturally have these unanswered questions going round your head. It's perhaps equally impossible for us survivors of subarachnoid haemorrhages to know the answers to your questions, but my personal opinion is that your Mum probably didn't suffer and would have passed away peacefully - I base this on the fact that as she was in bed, she was probably asleep up to the bleed starting and as it was a severe bleed, I imagine she would have lost consciousness quite quickly and therefore felt no pain. Whilst a lot of people experience a thunderclap headache immediately, I didn't when I had mine. My peripheral vision closed in to the point that I thought I was going to pass out and die and remember thinking afterwards how quick and painless that would have been. Please don't feel guilty for not being there - my daughter was there when I nearly passed out and had mine been as severe a bleed as your Mums, she would not have been able to do anything to help. I'm not sure if your Mum's bleed was from a ruptured aneurysm or whether you even know, but the chances are that if she did have an aneurysm that she was unaware of, then it's quite likely that she was born with the weakness on the blood vessel which over the years turned into an aneurysm by the general pressure of blood. I was 46 when mine ruptured and bled - I had no warning at all although I was under a lot of stress at the time and have always believed that the stress caused my blood pressure to rise, causing it to rupture. On the other hand, due to fact that my aneurysm was there anyway, it was quite likely that it could have ruptured at any point in time, with or without stress at the time. Every subarachnoid haemorrhage is unique and sadly many are not as fortunate as us to survive the initial bleed. I do hope that my post has helped a little bit and not led to more questions or distress for you -that would not be my intention. I really understand how upsetting it is to lose someone close, having myself lost 4 family members since my sah, Wishing you and your sister a happy future, Sarah
  16. Hi Kristi and a warm welcome to BTG. You have come to the right place to find support, knowledge and friendship. There are quite a few members on here who experienced a sah with no known cause. Having a bleed on the brain is certainly an experience none of us would have wished for and whilst everyone's outcome varies, there are a lot of similarities with what we experience after the event. You will gain insight from reading other's posts as you read the various threads on here. My sah was caused by a ruptured aneurysm, but like you, I wasn't admitted to hospital for several days despite calling the emergency services at the outset. The paramedic obviously didn't pick up on the severity of what had happened and although he said he could take me to hospital, he said I'd probably got better things to do on a Saturday afternoon and left me at home!! I hope your recovery goes smoothly, but do be prepared that sometimes it feels like one step forward and two back. Wishing you well, Sarah
  17. Welcome aboard Amanda, Sorry to hear about your unfortunate experience, little wonder you have severe anxiety and ptsd. Having said that, with the right support and time hopefully things will improve for you. It sounds like you have done remarkably well in the short time since the event and I hope progress continues for you. Being a mother of four will be hard work, especially whilst recovering from a sah - I found it all exhausting during recovery and I only had 3!! Hopefully you'll find lots of advice and tips on this site which will help you feel more reassured with feelings, etc that you encounter along the recovery path. Wishing you the very best, Sarah
  18. Hi Sammy Anne, I'm so sorry that you are still going through this nightmare situation, my heart goes out to you. Somehow, you need to concentrate on your own health and the effect all this is having on you - your daughter needs you to be as well as possible and it maybe that the antidepressants will help you cope with everything a little easier? There are several of us that have had bleeds on the brain that I am aware of who are taking antidepressants and I doubt that we would have been prescribed them if they were not safe. Discuss your concerns with your GP if in doubt. I'm not sure how long this ruling has been in place, but if your daughter is genuinely afraid I assume it may well affect her schoolwork? If that were the case, can you not speak with her school who could perhaps have someone there who your daughter could confide in and trust with any issues that cause her anxiety. Surely they have a duty of care for their pupils. Despite all that you have on your plate, you display much courage, strength and love. We all need a helping hand at times and I just wondered if you have been in contact with any organisations for domestic violence who maybe able to give you the support you deserve. Wishing you all the best,, Sarah
  19. Congratulations on the two year mark. Great news that your scan showed no change - worth all that travelling to hear that!. Hoping next year is a good one for you. Take care, Sarah
  20. Hi Jan, Again some wonderful responses with good advice. As others have suggested, it may be a touch of depression returning without you realising it. I say that because I went to my gp about 8 weeks ago, not feeling depressed, just that my head felt full of fog, I was crying regularly, sleeping too much and that I was not coping as well as I had been. I was also concerned that the amount of stress I seem to attract was not doing my head any good. Result she signed me off for 3 weeks with 'depression'. Since that first appointment I have been signed off for a further 7 weeks. My sicknote said 'depression, nos' - I then looked that up nos, thinking it was 'no other symptoms' - it is not that, lol, its Not Otherwise Specified - it's put on for depressive disorders that are impairing but do not fit any of the officially specified diagnoses. I have done much research on the subject and it is a known fact that depression is a common after effect of sah. Having little or no interest in things can be a symptom of depression. Depression too is a bit like an umbrella for all sorts of mental health issues, you don't necessarily need to feel down, it can be a whole host of things that cause human beings to feel the way we do - having a brain injury/sah as we all know can alter the way we were and everything can feel so much more difficult to handle. It is frustrating! For those of us who have suffered a sah, there is little wonder we experience feelings that are not ones we perhaps had prior to it happening. Anyway, I'll try and post in the GR regarding family support - essential, but not always forthcoming. I'm not sure if you've had any counselling, but it can be very useful to discuss your issues with someone outside of the family - I'm not sure if Headway may be able to make recommendations re 'neuro' counsellors, but I've often thought speaking to someone with knowledge of sah would be more helpful than an ordinary counsellor. Although I didn't want to be put on antidepressants I did agree to try Sertraline and I do feel that I am coping better now than I was just prior to starting the tablets. Having gone from too much sleep, I'm now not getting enough and keep waking in the early hours - so I've still a way to go before my 'normality' returns! Wishing you all the best Jan, Sarah
  21. Hi CJ, That will be quite a worrying time for you which is not helped by the lack of speed having been referred as urgent by the neurologist. Whilst I am not medically qualified in any way, I did read this on the internet which states the different sizes and their classifications: Small aneurysms are less than 5 mm (1/4 inch). Medium aneurysms are 6–15 mm (1/4 to 3/4 inch). Large aneurysms are 16–25 mm (3/4 to 1 1/4 inch). Giant aneurysms are larger than 25 mm (1 1/4 inch).14 Nov 2016 It is my understanding that although aneurysms could potentially rupture at any size, the chances of it doing so increase the bigger it is. Some aneurysms grow in size, some more quickly than others and some not at all. I have an unruptured aneursym measuring 3mm and it has stayed the same for the past 8 1/2 years since it was discovered. Although at that time an 8mm one ruptured. I have annual scans to check them both. Of course we are all different and the location of the aneurysm also plays an important part in their assessment. One thing I have learnt over the years is that neuro departments can appear to be quite slow in their responses, which for us can cause a lot anxiety. I know they are extremely busy and will be prioritising their patients etc, but I do think you ought to ring them again if you don't hear something soon. It's impossible to say how concerned they may be until they make contact with you. It's the not knowing that can become difficult to deal with. Good luck and let us know how you get on, Sarah
  22. Hi there, Macca is right, you need to get checked out - it's not right that you are not being taken seriously. I had a similar experience in that my concerns and symptoms (severe headache, not being able to put my chin down to my chest, feeling nauseous and very sleepy) were all ignored by my gp, nhs direct, my optician and even the paramedic that came when I called 999 at the outset. It was 6 days later and a phone call by my dad to my gp to insist that I be investigated that an appointment was made for that day, at a neuro clinic at hospital. After a 5 hour wait to be seen, they very nearly sent me home again. Luckily a consultant came to see me and said he'd just like me to have a ct scan and if the result of that was ok I could go home. The scan revealed a bleed on the brain and I was in hospital for 11 days. Now, hopefully yours may not be this and I certainly don't wish to worry you further, but you do need to insist you get checked as it is not uncommon for the professionals to miss the symptoms being something potentially serious. I knew something was not right with myself, I never had headaches and certainly not one that lasted for days on end and painkillers had no effect. Good luck, Sarah
  23. Andrea, I really feel for you, it's not nice being so worried about something. I've not had a plate fitted, but I remember well how worried, apprehensive and scared I was when I had to have another coiling procedure. The procedure was cancelled twice at the last minute which just prolonged the anxiety. Whilst these procedures are new to us, they are done on a regular basis by the surgeons and their teams and their skills and knowledge really are the best. Therefore we should be able to put our trust in them without fear, but in reality it is our brains they are dealing with and therefore there is bound to be some apprehension. Try and focus on the relief you will feel when it's all over - that time will come and focussing on that may help take your mind off the operation itself. Sorry I can't offer anything more comforting for you but you will get through it and then you will be so proud of yourself. Hugs, Sarah
  24. Hi Andrea, a warm welcome to BTG. I'm sorry that you are struggling at the moment - little wonder after such an event. I think the shock and realisation of it hits us all at some point during those first few months following a sah. It's a natural response and one that takes a long time to adjust to. Whilst there is little 'follow on' support once you leave hospital, there is a host of information on here from people's personal experiences and I hope as you make your way round the site, you will come across things that you can relate to and hopefully give you some reasurrance that things will improve over time. I personally didn't have weakness down one side, so I can't comment. The brain and spine foundation website has a helpline which is run by neuro nurses who would be in a better position to answer some of your questions. Best wishes, Sarah
  25. Apologies for my late response Michelle. Another anniversary to be proud of, a year that has had many ups and downs along the way. I've always said that recoving from a sah is hard enough, but the stresses and strains of life are so much harder to deal with during this process. Like Colleen said, you have held up admirably when faced with these challenges and I'm sure you will find the strength to continue the excellent support you provide to your parents. It's a pleasure to read your posts in the green room which bring a lovely ambience to the place. Enjoy your time with Jan this week - I'm sure you'll both have a lovely time, Love, Sarah
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