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ClareM last won the day on October 7 2018

ClareM had the most liked content!

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About ClareM

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    Super Moderator

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  • Gender
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    Portsmouth UK
  • Interests
    NASAH Feb 2015 with Hydrocephalus and EVD

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1,485 profile views
  1. Hi Paula I flew 3 months after my NASAH but I did not have surgery other than we evd. I think you need to check with your consultant to confirm if it’s ok. I have flown many many times since then and never suffer any ill effects others than fatigue. I always factor in a days holiday after my holiday now 😀 clare xx
  2. Hi Sarah I think consultants usually meet weekly to discuss cases, either your case has not got to them yet (sometimes there are too many cases to discuss and they roll some over) or they have discussed and feel it is safe to wait for your appointment to talk with you. An inter-cranial haemorrhage is any bleeding beneath the skull and includes a SAH. The letter you have received is probably the one dictated after your appointment at the beginning of the month - yes they can take that long to get out. Consultants have to dictate them, then they get typed and then back to consultant for checking and approval then out to GP's and patients, using snail mail! I hope you can manage not to worry too much, I am sure that if something had been discussed with the radiologists and found to need urgent attention you would have been contacted. What I would do in you situation is call the consultants secretary and ask if he would be able to give you a call to reassure you. Our consultants get such requests all the time and they are not 'gods' they don't mind. Alternatively is there a nurse specialist at the neuro unit you could talk to for some reassurance? Either way please do not leave it and stress. They told you to contact them rather than your GP so I would go that way. Give them a call today and get yourself some peace of mind. Good luck, keep us posted. xx
  3. A monthly donation is worth it to keep this great site running. I don't drink coffee so the money I'd spend on one if I did can go to BTG Keep up the sterling work Karen and hope others can help out too. Clare xx
  4. ClareM

    Janet's Story

    Welcome to BTG Janet glad you have found us. I have replied to you re work in another thread you posted in so won’t repeat myself. You are very very early days in your recovery and should take a step back and reevaluate I too was a very busy person who was always on the go working long hours in a stressful job. What this his event has taught me is that I now have to slow up. I still do lots and my physical activity is probably more than pre bleed. But it the mental side that still gets me 3 years later. I’ve just been on a weeks skiing holiday and suffered minimal fatigue. Back home and at work for 2 days and I’m suffering again. It’s because of the concentration needed to do my job, so I’m glad for my mid week day off. You hopefully will will get more energy back. I remember at 2 months I struggled to walk far or do anything that required concentration for any period. Be kind to yourself and slow up - you will get there in time. Feel free to ask any questions. Clare xx
  5. Hi Janet First of all stop beating yourself up about getting back to work and back to where you were. Your brain has suffered a terrible insult and two months out it’s very early days, it was over three months before I started back to work on a very slow phased return. Just pace yourself, 8 hours in one day is probably just far too much. Can you reduce your hours for a while and gradually build them up? Hopefully you will at some time be able to return to the job you love just give it time. Drink plenty of water and take lots of breaks that will all help. It it was over 8 months before I settled back to my job and new reduced hours - full time with a day off mid week. So so take care of yourself and show down, you’ll get there. Clare xx
  6. ClareM


    Hi Jayne Welcome to BTG sounds like you went through the mill in 2000. How are you doing now and do you have any lasting symptoms? I am 4 years post bleed and doing relatively well, some short term memory problems and fatigue but otherwise ok. Hope you are finding the site useful, how did you find us? We are a friendly bunch always ready to help and support other 'victims' so feel free to ask any questions. Hope to hear more from you soon. Clare xx
  7. Hi Rosie I echo what Tina and Casey say, if it is of concern have a chat with your GP or neuro nurse specialist. We often get twinges and pains in areas that were affected by our SAH and it automatically brings it all back. Hopefully you will get the results of your MRI soon and they will be positive. I still exercise a lot and do worry I do too much but so far so good. Can't say I do yoga though and it is a lot of bending with your head down. Have you thought of trying some other forms of exercise class or even swimming? Take good care and make sure you keep drinking plenty. Clare xx
  8. Very interesting and informative video Daff, thanks xx
  9. Hi Jessica sorry I too don’t have a lot of advice for you except what the others have said about water etc. My brother had SAH when he was 16 that’s the youngest I’ve heard. He made a full recovery but was in hospital for a long time. Mind you that was about 50 years ago when you stayed in a lot longer than now. Hope she she recovers well and you find the support you need. Clare xx
  10. Hope all goes well Maria, you have been very brave and loyal. Clare xx
  11. Hi I think you are having problems distinguishing between the two because they are possibly one and the same thing. Post bleed fatigue can be ongoing and I suspect that after time you do in fact become accustomed to it. I never used to relax and had a very fast pace of life. It’s been a struggle coming to terms with a slower pace but I am more used to it now. So in answer to to your question I personally don’t think it’s laziness but the new normal. Hope that helps, don’t beat yourself up about it - at least you are here to experience and grow used to it. Clare xx
  12. Hi Julian Very challenging reading, must admit I have read a lot of this before as I too suffered a NASAH. Mine was non-perimesencephalic and had an aneurysmal pattern. I have been told it was a large bleed which they were convinced was caused but an aneurysm but none was found. From what I can gather the perimesencephalic bleeds are usually associated with a better outcome. With regard to your increasing headaches are you possibly doing too much? I know if I try to stretch things that I get strange headaches, particularly at the base of my skull. Hope you get some answers if you are referred for investigation. Take care Clare xx
  13. I know how you feel, it has taken a long time to realise that my day off is just that - a day off. If I try and fit too much in I suffer later in the week. Keep up the sitting, relaxing and socialising Clare xx
  14. I personally would be unable to work 12 hour shifts . As Super says a key feature would be to take regular breaks away in a quiet area. The stress of being worried about if you are able to cope with the job probably isn't helping either so you need to address that. If here is no way that you can change employment you need to adjust the way you cope with it by making the most of the time you are not working. Make sure that on those 4 days off you totally relax and recuperate, don't get sucked into plans for mammoth days out or household jobs. Unfortunately if you can't change you work pattern you have to change your rest pattern and make sure it is just that - rest. I haven't got any better advice for you. I personally have had many problems with working post SAH and can only say that sometimes we need to adjust our expectations in the way of salary etc. Unfortunate, but your health and well being are more important so if at all possible put them first. Sorry no better advice, good luck! Clare xx
  15. Hi I think a key point in your post is You probably feel great now and your recovery is going well but it is all relevant to the rest you are currently getting. Throw in a bit of pressure on the brain and you may find you are not doing so well. And it probably won't hit you until you stop the pressure meaning you pay later. As you say you cannot truly test out your progress until you are back in your old job, this is certainly true but going back without phasing could be very problematic and a big mistake. You need time for your brain to adjust and you may find that you can't go back to what you did previously. Push it too hard and you will suffer so baby steps are a much better idea. I was in a very high pressure job pre SAH and tried to return to that - unsuccessfully. I phased back slowly but the stress got to me so much so that in the end I changed jobs. I've reduced hours and changed jobs again since then and think I am in a good place now. Saying that, I only work 4 days with Wednesdays off as recuperation day. I am 4 years post bleed and don't think I could work full time now. I wish you luck on whatever you decide and hope which ever way you chose is successful, just remember you brain has had a huge insult so won't take to being treated without a little tlc. Clare xx
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