Jump to content
Search In
  • More options...
Find results that contain...
Find results in...


By registering with us, you'll be able to view our forums in full as well as discuss, share and private message other members of Behind The Gray. Why not join us now?

All Activity

This stream auto-updates     

  1. Yesterday
  2. Hi TinaW I found people on here Behind the grey know what we have been through and how we feel moreso than others. I got scared and was on here every day but it was my way of talking to people about what has happened to me and is it natural. Got a good feed back and it helped to give vent to worries I had. Like crying without any reason and being snappy. Started to sing happy songs and started to get my laughter back. Keep chin up and smile or sing as I was out of it for a while. Woke up when shunt was fitted as I had hydrocephalus and it kept me sleeping. Still cannot walk that far but doesn't stop me weekend Hubby gets chair and we go out for breakfast xxxx Any problems share them xxxx
  3. Hi Tina, Hey - you came through it! I'm guessing that you didn't talk much to anyone before you went and this worry just built up unchecked until the bubble burst and all that emotion just came tumbling out. Always best to talk about these things rather than just letting them build up. It acts as a relief valve. Next time, come on here to express your fears before you go, not afterwards. This sort of stuff is what we're good at, because we've been there. We know exactly what you have gone through and it is the classic 'what if' worries - and guess what? We always think the worst and there really is no need. It's not daft or even irrational. It's what our body does to us, and that fear is us telling it back that we haven't forgotten it hurt us and we aren't going to let it happen again. Hence we build up this defensive tension and our reaction at the end is to tell it that 'I told you I wasn't going to let you hurt me!' Then the relief is palpable. It's a natural worry and not one to worry about unduly. It's not daft, or stupid, or anything to be embarrassed about. Those who haven't experienced it don't know how it feels and therefore can't empathise with us. They don't know what they don't know. It's hard to know how to react without that understanding that only the experience gives you. Thanks for sharing. It was a considerate thing for you to do and is an important message to others who share those worries. Now get back to getting on with living your life to the full. I wish you well. Macca
  4. It has been almost three years now since my SAH, and I feel that I have come quite a long way in my recovery. Fatigue is still a problem, but it’s slowly getting better, or maybe I am just getting better at adjusting my pace. I have recently been able to exercise more without having to rest up too much afterwards, which has been very helpful. Yesterday I had my first angiogram in two years, and this has left me so upset and emotional afterwards and I just can’t get back to a positive state of mind. I have had a few angiograms before, so I knew beforehand that it would be a bit uncomfortable, but this time I just panicked. I was so deeply afraid that something would happen during the angio that my heart was racing even the night before. And when I got to the hospital in the morning, they told me I would have to wait because the doctors had to perform an emergency surgery first. So three more hours of worry. The fear I felt during the angio made me so tense that it felt like it took forever. And this was even though I had had a mild sedative before. Afterwards I was very lucky to have a nice surgeon, who told me straight away that from what he could see, everything looked fine. He even came to my ward to give me copies of the scans, and explained them to me. After that, I was so relieved and felt happy for a while. Today however, everything just hit me at once. The toll on my brain from the wait, the irrational fear and the anxiety before the angio. And also having to rest and not being able to exercise for a week or so because of the risk of bleeding. It reminds me so much of how I felt at the beginning of my recovery, and I feel confused, angry and a bit sad. And I can’t even explain why, I can honestly say that I haven’t felt this affected mentally for a long time now. I guess I just wanted to share this with you because even though I have been talking to my husband about this, he can’t really understand why I was afraid in the first place, I am usually a very rational person. So thanks for listening. /Tina
  5. Last week
  6. I had my “event” in 2012. For several years after I had occasional stabbing headaches. They seemed to mimic the pain I remembered from vasospasm. They scared the heck out of me as I thought I was having a vasospasm. Funny, I haven’t thought of them until I read this post. I’m not sure when they quit, but it’s been some time since I was visited by one.
  7. I'll be three years post bleed in March and I live with headaches but I've never heard the term "Ice Pick Headache.' I can ALWAYS feel my head in the location of the original pain. Sometimes it's not bad thankfully but it escalates and can be severe. Sigh. My Internist gave me another MRI which was normal so I realized that I'm probably just going to live with it... It is sad to read your stories on the one hand and then on the other I realize it's a part of this bleed.
  8. Must be such a relief for you! Take it easy for a while.
  9. No, I don’t have anything. I might ask for something if I have it again, but it’s not essential. I’m so happy it’s not so scary. Funnily enough, I had a full day in the bed - no wonder I had so much sleep!
  10. Happy five year Greg. I hope you continue to improve. Chris
  11. Daff, Thanks for your words and thoughts. Interesting to hear what you said about the swimming. Fitness was a big thing for me pre SAH, though I never was a good enough swimmer to train hard, but I thought it might be good for me now. Boy I was wrong, I did a short 20 minute session, felt lousy for a couple of days afterwards. Not really sure what triggered the fatigue so badly, as in terms of cardio load I had taken it easy compared to other exercise I was doing. Ticked as tried and moved on. I have found the same, walking is the one thing I can do to a reasonable level, and try to walk a few miles at least if not more each day. Its a good replacement for driving short distances, which now have a big impact on my head, so I walk, save the planet and stay a bit more healthy! Well done with the paddle boarding it always looks good fun, and relatively peaceful! I can't imagine what it must have been like to go through all that you did and have two under 10's looking up to you and wondering what was going on. I hope they are doing well now, and are rightfully proud of what their Mum has achieved. Finding one's niche now is something I still am struggling with. I know that I can't amble along as I have been, I need more focus. I have something up my sleeve, in the planning which I'll share if it comes good. It would draw on my experience as brain injury survivor, so fingers crossed! Yes, keep dreaming, never stop, wise wise words. Within reason all things are possible, may be not the way we might have done them pre-SAH, but with a bit of flexible thinking and a touch of compromise, much is possible! Onwards and upwards! Take care all, as always my spirits are lifted talking to you all. Thank you Greg.
  12. Earlier
  13. That's very good news! Some types of migraine are pretty horrible. Thankfully, I only get the classic one with the warning aura and that's bad enough and it probably takes me a good couple of days to get over it. I've been on Propranolol for many years now and it seems to have helped reduce the frequency of my migraines. Are they treating you with any meds?
  14. PHEW! It’s not! It’s a migraine! I think the CT scan was read wrongly that night, just the old stuff from last year. The consultant asked lots of questions and concluded with a migraine. I’ve had plenty migraines with aura in the past, but nothing like this: unbalanced vision, can’t speak, numbness down my face & side. This can also be a migraine!
  15. I too suffer with tinnitus have a loss of hearing (only slight) in one ear but I just ignore it sometimes I get a sudden noise (like my ear as gone under water) then it makes a long sound like derrrrrrr but I am used to it now so don't really think about it anymore
  16. Thankfully I've not suffered with tinnitus, but I can imagine it must be very annoying. I have however read up on the condition recently and apparently it is quite common amongst the population. It appears to me to affect a lot of people after having had a subarachnoid haemorrhage. There is more than one type of tinnitus and apparently, according to what I've read, tinnitus is rarely an indication of a serious disorder. However, I have recently discovered what one of these rare and serious disorders is, having been diagnosed with a Dural anteriovenous fistula. I do not have any symptoms, but when I asked my consultant what symptoms I should be looking out for, he replied Pulsatile tinnitus. (There are other symptoms caused by a davf, but that was the only one he mentioned to me) I would stress that most cases of tinnitus will not be a symptom of a davf. A GP should be able to say whether tinnitus is pulsatile or not and if he/she thinks it requires further investigation. The following is a very brief insight into a davf:- The dural arteries bring high pressure oxygen-rich blood to the brain and the dural veins take the oxygen-depleted (deoxygenated) low pressure blood back to the heart. A DAVF causes the high-pressure arterial blood to enter into the veins or sinuses that normally handle low-pressure blood returning to the heart. This can result in ruptures leading to bleeding and brain hemorrhage as well as other neurological issues. Sarah
  17. A neighbour of mine is having a course of acupuncture, he says it works for a while then comes back. I have three pitches in my Tinnitus, but I can still hear a pin drop. It gets worse i am sure when my blood pressure is higher, I do not bother about it at all. I do not reference my sub arac from 1998 as something I am in recovery from, it was what it was and after the angiogram revealed no berries I knew it was not life threatening any more. I tell people as a matter of interest but it does not worry me at all. I say this because I want you to live a worry free life. It’s short enough without being scared of it.
  18. Hello Mark ... so sorry you are sufferinging from severe tinnitus. This may be entirely coincidence, however Mrs Subs began using a hearing aid and and noticed a significant improvement. Hope you do get some relief soon. Subs
  19. Clare, Greg, Gemma. If it’s any help I think it does continue to get better, or maybe we just become better at adapting . Either is good though and both is progress. I’ll be 8 yrs next month and my stamina is still increasing but I’ve had to find new ways of doing things for instance like the ways I now keep fit and healthy sit better with new me than it would my old style. So for instance I loved swimming Ipre SAH but just really didn’t work for me anymore , exhausts me too fast so Instead I walk daily and do gentle strength exercises instead which I think has really helped my balance with the hydrocephalus but also dramatically increased confidence in what I Am still capable of. So much so I stretched my comfort zone and learnt a new sport.not too high cardio, adding water based which I love but not high impact and now I can paddle board. This was unthinkable in the years immediately post and yes completely exhausts me , and I wobble and fall too but the trade off of endorphins and pride I get when I do it means it is worth it, new rules are in play, my evolution. Same for my work. I really Built it up slow, had to say goodby to a fair few ambitions but found a new niche and again that’s helped me confidence wise. Hardest balance for me fatigue wise has always been the giving of my energy to my family. Never wanted to limit that but brain had different plan. Girls were 8+6 when I had my event and then mummy they knew changed in a blink. It’s been a slow crawl of knowing what’s possible since then, failing and falling a lot, but I for the most can do so much of it again but honestly think maybe a bit better with boundaries and setting expectations of what I can do and our relationship I think is all the stronger for it. Aim at steady is my best advice, yes may be boring but my view is that from a steady state then you can dare to lean a bit more, reach a bit more and generally wobble a bit. When everything’s wobbly then you know it’s time to reign in and regain the steady and then off you can go again. Daring to dream and always keep hope of what’s possible today. And on the days when nothings really on, the head stops play, then being kind to self and gentle to then totally rest and apply self care and attention (and yes I do still have those days but they are fewer and less frequent. ) I got scared a lot i think , I didn’t want to go back too much as the steps backwards early on frankly floored and terrified me...but now I just try and stick with what I know is possible today. I measure from my SAH yes but try not to think of that state too much and instead just be curious of now. You have all done amazingly, overcome so much pain, so much challenge and change with dignity (and probably some tears and anger too) , keep building just as you are. Onwards and perpetual motion .you've got this x i wish you all well.
  20. I have had tinnitus since the SAH ... I'm 15 years post recovery this year, but it does get better or perhaps you just learn to live with it?...I don't have the answer. I still get what I call "white noise" ... normally when I'm feeling tired and I've done too much .... but it does get better.x
  21. Yes utterly soul destroying tinnitus.....began early after and now nearly unbearable x
  22. Gemma, lovely to hear from you, nice to know I'm not the only intermittent visitor here! Fatigue, and whether it is improving is something I do wonder about quite a bit. I try to reflect to the anniversary points and think have things changed? I think the progress is so gradual that it is hard to judge within oneself if things are getting better. My brother in law had an Ischemic stroke, about 12 years ago now, and the last time we spoke about this he felt that his fatigue had albeit gradually still improved over all those years. I know its slightly different but I do take some hope from that. Also I think its not just about things improving in terms of physically getting better, I think (hope!) that I learn to live with it better, so that I avoid some of the worst of the ups and downs. Or as we discussed above, if I do over do it, I make sure that its worth the fatigue! To me at times I'd rather have one good day where I make the most of whatever, and I flank that event with a number of quiet days either side. I appreciate its not good to yoyo like that all the time, but just sometimes, its nice to "let rip" just a little! Take care, lovely to hear from you.
  23. Clare, life pre-bleed does seem a long way away, I too can't really remember what it felt like to be able to do what I could then, I know I could do more, but I guess slowly the acceptance of the new life post bleed, becomes the norm. The highs and lows of life are framed within the new context of life post bleed (well most of the time, I still do throw my toys out of the pram at times if I'm honest when things get a bit too frustrating!) You are right, life is short and there are so many things to do, places to go and amazing people to meet, even post bleed there is a whole world out there waiting.
  24. Hi Greg and Gemma, great to hear how you both are. I too have just passed my 5 year mark and like Gemma feel I have plateaued. It's strange now that I have difficulty remembering what I was like pre bleed. I miss my old life though particularly my job and the fact I could do so much more without getting fatigued. I am fortunate that I do not have any long term issues other than memory and fatigue. I exercise regularly and manage to work 4 days a week. However I am now at a point where I think I need to stop pushing myself and sit back a little. I am investigating the possibility of reducing my hours further and spending more time doing the things I want to do and seeing the people I want to see. I have spent a lot of time pushing my self to be able to get back to the old me, but now I have forgotten who that is it's easier to start making new plans. Life is so short and there are lots of places I want to visit and things I want to do before I am too old to be able to do them. Clare xx
  25. Hi Greg, Like you I have not been on here for a long time. I too had my haemorrhage in January 2015 and have just reached the 5 year mark. Was very interested to read your reflections on the matter. Similar to what Daffodil said above, now I am at the five year mark I do feel somewhat like I have plateaued. My first year after the haemorrhage was spent recovering and then in rehab. I started a phased return to work at the start of January 2016 which was the same time I was diagnosed with arachnoiditis and arachnoid cysts on the spine as a result of my haemorrhage. I was fortunate enough to be able to return to work, albeit part time and without the managerial role I did before (I am a teacher). I have also had to adapt to the spinal injury as I am now a wheelchair user as a result of it. Five years on I think I have learnt to manage things quite well. I am still surprised at the toll fatigue takes on everything and wonder if this will ever change at all. Due to my spine injury and hydrocephalus I am still monitored by the hospital I was treated at (have just been moved to yearly check ups from six monthly ones). I think one of the interesting things about being at this point is dealing with the long term acceptance of what life is now like and how different it is to my life before and the life I thought I would lead. It is encouraging to still come on here and see the progress people have made. I wish you all the best with your continued recovery. Gemma
  26. Thanks. They think there is a TIA on the initial scan and are going to do more testing tomorrow. Someone mentioned me staying on meds for the rest of my life.
  27. Hope you are ok. The thing with tia is sometimes nothing is on the mri or ct scan. But you still need close follow up and may be meds. Goodluck
  1. Load more activity
  • Create New...