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kempse

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kempse last won the day on August 11 2022

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About kempse

  • Birthday 11/01/1962

Profile Information

  • Gender
    Female

Converted

  • Biography
    Am married with 3 children, aged 9, 15 and 17
  • Location
    Derbyshire
  • Occupation
    Bank clerk
  • SAH/Stroke Date
    08 November 2008

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  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
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