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Everything posted by ClareM

  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
  16. Congratulations Super on 15 years. You are certainly an inspiration to fellow SAH travellers. Long may your holidays in the sun continue together with your determined attitude to life. Clare xx
  17. My heart goes out to you Maria, such an awful situation to be in. I hope Paul is getting the care he needs and that you are managing to keep in contact with him. Big hugs xx Clare
  18. I know exactly how that must have been Julian - terrible. I always avoid place with loud noises now, babies crying is another big no no for me, luckily I haven't any grandchildren yet! Glad to hear you are well. Clare xx
  19. Hi Sarah I read your post and really feel for you. Employers always stay just that close to the line to protect themselves with no care for the employee. Not much you can do in this situation except ride it out, they hold all the cards and will play them as required. Regarding your headaches I would predict that they are due to stress but would suggest you get them checked out to be certain. Stress can cause headaches. I had a period of stress recently and found I was getting a lot of stabbing pains in my head. When I sought medical advice I was told they were most likely caused by stress and true to form when my stress lessened so did my headaches. Try to relax, get some medical advice and take comfort from the fact that repeat SAH is very rare. I hope you get your employment issues resolved my only advice would be to do what is best for YOU, no one else. Stuff the company - they will only be thinking of themselves too! Clare xx
  20. That flat week Sue is your bodies way of telling you it’s too much. Slow it down and it will happen less. My only way way of learning in the earlier days was by making the mistake and paying for it! You’ll get there 😀 Clare xx
  21. Hi Sue You really should take the advice of your rehab doctor as he may have a reason for giving such directives. Your work routine does seem a bit punishing is there any way you could change it to make it a little easier? However on a personal opinion, I too was running when I have my bleed and have successfully returned to that. I was walking around the same time as you and started doing the couch to 5K program at around three and half months. I gradually built on this and now run 5 miles up to 3 times a week. However I am 3.5 years post bleed with no coils or clips. I find the running helps with my stress which lessens my fatigue. I work four days a week with Wednesdays off as my recovery day. It’s taken a long time to reach the point where I feel settled and happy with my work as stress does pay a huge part in my life. I would ask your your rehab doctor which parts of your routine he thinks is likely to cause more problems and go from there. Well done on your recovery so far sounds like you are doing well - just don’t over do it. Clare xx
  22. Hi Ruth Welcome to BTG, glad you found us, sorry it wasn't earlier in your recovery. I too had a NASAH with an EVD but it wasn't perimesencephalic mine followed more of an aneurysmal pattern which was why they were convinced it was due to an aneurysm. I have recovered well without any major issues, I just have a terrible memory and am always tired. Physically I am fit and exercise regularly. I was running when I had my bleed and have managed to get back to that, I have completed the Great South Run twice since it happened something I am really proud of. Odd but running makes me feel less fatigued - it clears my brain I think fatigue is often an ongoing issue. The Nurse Specialist at the unit I was treated said it can be a lasting legacy and just something you learn to live with. Have you tried to make some adjustments since your sah as that is key in recovery I think? I hope others post here, there are many NASAH members who will have stories to tell. I know Chris from across the pond is one and he like me is a runner Clare xx
  23. I would contact the unit you were treated at for advice as well as the DVLA. There are rules and regulations and the DVLA are notoriously slow but best to get it right than be illegal. Hold off selling the car though ? Clare xx
  24. Hi Bev sounds like you have had a rough time of it but are doing all the right things to come out the other side. I too was left in my diagnosing hospital for many hours initially with no treatment. It was my husband kicking up that prompted my dash to a neuro unit who operated immediately on arrival. Hydrocephalus and and EV D for a week not much memory of any of it. Vision and hearing are often common problems post bleed. I still suffer in noisy environments and avoid them. As Daff says ear plugs can be useful and keep on with the dark glasses. I hope you can continue to recover well, take it slow and be patient. Drink as much fluid as you are told to and rest rest rest. Take care Clare xx
  25. Hi Angela Welcome to BTG, glad your partner found us and helped write your intro. You are certainly lucky to have someone who cares and loves you enough to try and help in your recovery. It's a long road back but sounds like you are making good progress on that journey. Take it slow and steady, drink plenty of water and rest, rest, rest. Also try and avoid stress as that will affect your fatigue. I am over 3 and a half years post mine and still have moments when I stutter, struggle to find words and forget what I am saying mid sentence. But I am so much better than the early days. Diaries and written notes are my life now so you have made a good start with yours. Take care and take it slow! Be good to hear more from you. Clare xx
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