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ClareM last won the day on February 10

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About ClareM

  • Birthday June 23

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    Portsmouth UK
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    NASAH Feb 2015 with Hydrocephalus and EVD

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  1. You are really early days, at your stage I was still in hospital- I did have the added complication of Hydrocephalus. We are unable to give medical advice but the symptoms you describe seem similar to most who have had a SAH. I never felt anxious at night particularly though there are others that did. Write all your questions down and make sure you ask them at your Neuro appointment. What you describe appears normal so try not to stress, it will only make things worse. Clare xx
  2. You will see improvements but they may be slow. I think post bleed everyone has to find their new normal and often the hardest part is accepting what that is. For me it’s been a rocky road as I am so used to pushing myself. Realising that that isn’t my best path has been hard to accept and even more difficult to change. Enjoy those walks and let us know how it goes with your neuro doctor. clare xx
  3. Hi I was out running when I had my bleed and was keen to get back to it afterwards. It took a good couple of months before I was able to start exercising again so to walk a mile after 2 weeks is impressive. I think you need to speak to your neuro doctor about how much exercise and when. Give yourself time, you were fit prior to your PMH so hopefully you will be able to regain that fitness. I now regularly run 4-5 miles three times a week with no issues but working for a full day still floors me - people can suffer from different types of fatigue, mine is brain fatigue. However I do find when my brain is saying 'no', I can go for a run and then feel much better. Take it slow and listen to your doctors advice and hopefully in time you'll be back to where you were. Take care Clare xx
  4. Hi Karissa please don’t be too disappointed, you are really early days post bleed. At your stage I was still in hospital. It took me a good month post discharge to be able to go for walks on my own or with my dog. Like you I run - though not marathons- and I was keen to get back to it but no way could I have done much for the first few weeks post discharge. However I have got back to running, it took time and I completed a C25k programme to get me back slowly. I now regularly run up to 5 miles three times a week with no issues. In fact running helps my brain fatigue. It’s the one thing I feel I can do better than pre SAH. So take it slowly, rest when you need and be kind to yourself. You’ll get there but maybe at a slower pace than you want. Clare xx
  5. Hi Jean sorry to hear that you are in pain, think it’s so easy to attribute everything to our SAH when often it is not connected at all. I work as a pharmacy technician and although I cannot give medical advice I can give you information. Steroids such as prednisolone are sometimes given at very low doses long term here in the U.K. You need to take the advice of your health care giver particularly regarding pain relief. Regular Paracetamol (Tylenol) is often prescribed as well. People don’t like taking pain killers but if you are in pain sometimes it is required and can make a massive difference. Listen to what they say and I hope things improve for you soon. Clare xx
  6. Hi Sarah my bleed was 6 years ago in Feb 2015. I can honestly say life has never been the same since but that’s not saying it’s been bad. I've had a lot a lot of turmoil with work but that’s mainly been self inflicted as I have this tendency to push myself. I’ve changed my job several times since my event mainly because of stress. Funnily enough I have ended up in a job role similar to when it happened but with drastically different hours. I used to work 42 hours a week and now it’s just 22.5. I’m still floored on a Friday, I struggle with fatigue and have difficulty paying attention. It’s been a struggle and I have had major issues with acceptance. But it’s not all bad. I feel I have a better work life balance now and it’s good to be able to exchange my experiences with others who have been through the same thing. You have a 3 year old who will take a lot of your energy, get all the help that you can so you can rest too. I don’t envy you that, it must be very hard. Take good care Clare xx
  7. Hi and welcome to BTG. 8 weeks post bleed is still really early days. When are you planning on returning to work as you need to give this some careful though especially as you have a job that requires so much concentration. I don’t mean to sound negative but it may be a case of having to redress your work and hours for a while. Concentration and retention is still a problem for me now. I’m not saying you won’t be able to do it but you may find it takes more effort and that will cause fatigue. You don’t say where you are from is it the UK? If possible have a chat to the Nurse Specialist where you were treated for advice and ask what your expectations should be. Good luck with your MRI today, they never found where my bleed came from but it was reassuring to know there were no more problems. Keep us posted and most of all take it slow! Clare xx
  8. Dan, ESA stands for Employment and Support Allowance. Are you intending to go back to work when you are able? Or do you think that will not be possible? Clare
  9. Sami I was really interested in this figure, where did this info come from as I never realised it was such a low rate? Makes me all the more grateful for my life now I stopped smoking 2 years before my bleed so have no idea if it had any part in it. I do know now that it is recommended that you don't smoke post so I am glad I gave up before. It was one of the hardest things I have ever done but so worthwhile. (ps I am talking normal not herb ) I do still drink but have to admit it has a far greater effect on me now - my husband says I am a cheap date! Glad you have found a use for the fireplace Daniel! Clare
  10. RIP Winnie, hope you are enjoying your choir practice with the angels xx
  11. Hi Daniel As Sami says it sounds like you have done too much. Period. Post SAH either with or without aneurysm the recovery is slow, slow, slow I was a very high functioning, fit individual pre SAH. Post, I am still fit having got back to running (what I was doing when it happened) and back to work, but by no means at the level I was. I work half the hours and am still floored at the end of the week. My bleed was 6 long years ago and I have gone through many changes since, mainly due to my resistance to change. If you push too hard your body, and brain, will misbehave causing you all sorts of problems. It's a hard lesson to learn but eventually you will get the message! My advice is take your time. Consider each strenuous activity and decide is it worth the pain after? Most importantly, be kind - to yourself! Be good to hear more from you Clare xx
  12. Hi Rosie I can empathise with you totally. I don't feel the same person I was pre bleed. So much has changed for me and I too have struggled with low mood. Please go to speak to your GP and either try and get some talking therapy or anti-anxiety meds. Hopefully one of those will help. I must admit the fear of it happening again has never really bothered me but I can appreciate that for some it must be a constant concern. Take comfort from the advice that the neurosurgeons give - that you have a far greater chance of having a road accident. Take care, Clare xx
  13. Hi and sorry you didn’t get any reply to your first posting. I think you hit the nail on the head when you say He also said if it was urgent they would not have let me out of the room. No doctor likes to take risks with their patients, it not only affects the patient but their reputation too. I am sure if it was that urgent you would have had the surgery already. I work in the NHS and know Covid has delayed a lot but I am also aware that if a procedure is important it goes ahead. Also from what I understand, (though I’m not medically trained) a coiling when the aneurysm has not yet ruptured is usually a simpler procedure than when it has. You have an appointment in April so get lots of questions written down ready to ask. Hopefully you will get some answers then. In the meantime try not to stress ( hard I am sure) and relax in the knowledge that if your life was at risk they would have acted faster- Covid or not. Many people have had bleeds during this time and all been treated despite the virus. Good luck, keep us posted. Clare xx
  14. Hi Pascal Welcome to BTG, glad you found us and are finding the site useful. We aren't medically trained so can't give medical advice but we can offer support and our experiences. I am 6 years post bleed and still struggle with noise, concentration and ability to pay attention and my memory.... we best not mention that. I wonder if the sensations you are feeling may be attributed to fatigue or stress. I know if I have to concentrate hard for any prolonged period it makes my head feel a bit 'wobbly' If you are worried though try speaking to the unit where you were treated as they may have some advice. With regard to feeling different I think that is something that many who suffer a bleed report. I know I am a changed person, my whole life was thrown upside down that day. It takes time to accept the new normal but you'll get there eventually. Take good care, drink plenty of water and rest. Clare xx
  15. Hi, I started exercising by taking short walks about 4 weeks after my bleed. I progressed onto longer walks and eventually back to running which is what I was doing when I had my SAH. I now run 3 times a weeks, about 4-5 miles each time. My Neurovascular Nurse specialist encouraged exercise but you should check that it is ok for you. You are still early days so take it slowly Clare xx
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