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  1. Today
  2. Mama2 I had them at puberty so not caused by SAH but had some real bad ones when I had SAH saw my Doctor who deals with my Epilepsy and told him I had such a strong one so much different to the usual ones, and they are bad enough !! Had MRI and had a small bleed but it healed itself up ... Not nice and scare the life out of me and I have had them since 14 puberty now an old dear still scare me so I lay in recovery position and am out for about 2 minutes but the one after SAH was different from any I've experienced before and it was so scary ...Be of good cheer as a lot of people have them after SAH scary for the person having them and the onlooker xxxx . You'd think after what we've been through we would have a break. I wish you well and try and remain calm as I never can xxx lol Medicine changed and all is well last shakes I got was in 2018 Feb so been a year without shakes ..touches wood and whistles Regards Win xxxxx
  3. Mama, Yep. I had a siezure in the ER and one on the way to another facility in an ambulance. They began iv meds and I didn’t have another until they stopped the iv and started me on oral meds. That was the last one though. They wiened me off diazanon first and them keppra. No problems with siezures since. I’m 6 years out.
  4. Have any of you that had a NASAH develop seizures after the fact?
  5. Hi Charlie, May bank holiday mine happened, where I was was transferred to the Queens Medical Centre in Nottingham. I know what you mean, Monday I had a really good day, today being Wednesday, glazed over, not retaining what is being said to me, it's like my brain had switched to go slow. My work colleague knows me very well as we work together. She knew instantly that I was not right today and to be honest, i've asked her to give me feedback on how she sees how i'm coping. Today she said that I was having dips of concentration and fatique, which were happening quite quickly, then i'd have a boost of energy and dip out again. I had no idea that this was happening, but knew I was out of sorts, so sat quietly at the back of the room. The SAH nurse left a message on my phone today to get in contact. I think i'll be making that call today and see what they say. I'm working from home for the next 2 days, much quiter and hoping for a better day. Charlie when did you have your NASAH? If you don't mind me asking. Xx Bev
  6. Yesterday
  7. Winb143

    1year post sah

    Do not take others worries on as stress can be harmful and I used to bath my head in warm salt water, as my Mum swore by salt water. It cannot do any harm and perhaps even ease the tingles and itches you get . So No worries /stress and sing a happy song my answer to all ills xx Good luck Win xxxx
  8. Last week
  9. Stephen d

    1year post sah

    Thanks CaseyR will definetly start a daily journal
  10. I spoke with someone today, she was very nice and very understanding and is going to investigate. I have no issues with the neurology team apart from lack of advice and follow up but that seems to be the norm. It is purely the endoscopy staff who failed to recognise and respond to my obvious distress and sent me home when I did not know where I was or how I had got there. I realise I am quite fortunate to still be here. When the investigation has been completed I will take some time to decide what to do, if anything. It took me three months to be able to talk to PALS in a calm factual way and it was them who started the ball rolling a month ago. I would hate anyone else to go through what I did during and after procedure. The memories will fade, in time, but at the moment it's very raw and I live alone. It does help to talk about it with friends, then I'll just change the subject. At least I'm not waking up at 5 am every morning and remembering a nurse shouting at me to open my mouth and trying to to force a tube down my throat while I was having a brain haemorrhage, so that's an improvement. Best wishes to all.
  11. Not much I can say what hasn't already been said Vicky xxx My Surgeon told me I must try and not stress after my bleed, so if you think getting it off chest will help or make you stress more ?? Do what you want to do and then move forward. I wish you all the best (This is where I normally say sing but you seem to have been through it) xxx regard Win xxxx
  12. Hi Vicky. Welcome to BTG. Firstly, your health is your absolutely number one priority. You need to keep going back to the team that treated you to seek re-assurances, to ask questions and to be sure the treatment you are receiving is the correct treatment. Then you can follow up your complaint - and if you were unhappy, you were absolutely right to complain. However, make sure you do it diplomatically and in the right way - you don't want to bite the hand that feeds you - nevertheless, they need to know that what they did wasn't acceptable. If, they say that saving your life was their priority, rather than having good manners, then you could cut them some slack. How else would they find out, and improve things if people didn't complain? In terms of talking about it making your blood pressure rise, I think there are a couple of points to bear in mind. 1) The clinical team are there to look after your medical needs, not your social ones, so sometimes it can seem as though they have just turfed you out and cut you off. It's just not their field of expertise that's all. 2) Find a close friend to talk to in a calm situation who can sit down with you and let you talk about what has happened to you, without judging you, or telling you that you may be getting upset too easily. They just need to let you get it all off your chest, and you will feel a lot better for having done that. 3) Set down some questions on paper and then approach your doctors armed with that. It is much easier to do that and talk in a structured way than with an adhoc approach that can get out of hand because of your understandable emotions, in play because of what you have gone through. 4) Although the people treating you are probably very good at what they do in repairing you, in almost all cases, they have not lived the experienced themselves, and so they don't have that social empathy that we have for you, for instance. 5) Now that you have complained, let the investigating body do their job, they are taking the strain for you now, so try not to get too worked up about it. you can only make your next move when you get a reply to it. In the mean time, talk to people, such as your friends and family, who you know will lend you a sympathetic ear. It is very difficult for you, being at the centre of this, not to get emotional because it is without doubt, a very real and terrifying experience to have lived through, However, you will find that their response may feel 'matter of fact.' If I were you, I would get your friend or family member to open the letter in your presence, and take you through it line by line, talking about it as you go, making sure you take in what it says, with their support to hand. Just my opinion, that's all. Good luck and best wishes, Macca
  13. Hi Vicky welcome to the site, glad you found us. Oh what a horrible ordeal for you to go through, the chances of you actually having another are low but that feeling is horrible think everyone feels like that in the beginning it will ease - honest. of course you had to make a complaint that was terrible and no-one should have to go though that. I hope you get some sort of resolution to this.. hope you find the site helpful. take care
  14. Johnnie M

    Driving

    It is almost 7 months since this thread was last visited. I am wondering whether Penny managed to get back on the road? It would be lovely to hear from you Penny, just to let us know the latest. There may be others here who could learn from your experiences. The root cause of you having your licence revoked is not the same as mine as it didn't involve loss of vision. I also suspect that if you do have your licence back it is due to a time based limitation? Did you have to take a driving assessment, for instance, or did you get it back from a report issued to the DVLA confirming that you hadn't had another 'event' within the past year. I really hope that we can hear positive news Penny! Hopefully you are not able to read this because you are on a trip in your car! JM
  15. My NASAH happened 4 months during endoscopy when BP shot up although I don't usually have high BP, just before they started I was anxious and they told me my BP was high. They carried on and then the dreadful headache started. I was yelling and moaning my head hurt so much but they ignored it, held me down and forced my mouth open, they thought I was "acting up". Straight after they told me to go with no recovery time. My friend who came to collect me was horrified when she saw the state of me I didn't know where I was or how I got there. They said it was the after effects of the sedation, they were running late and wanted to go home. It was five days before I went to A/E and as I related this to the doctor my BP rocketed again and the excruciating headpain returned. I was in a CT scanner within 20 minutes where two bleeds were detected in frontal lobe. After MRA no aneurysms found. I still have PTSD about it but thought it was improving. I made a formal complaint and the hospital phoned on FRIDAY to discuss it. I've just picked up message. My BP has shot up, my head is throbbing and I can't breathe - that's just the thought of talking about. I'm scared that discussing it with someone will give me another one! I've just taken a beta blocker and 2mg diazepam. Obviously stilll affecting me badly but I feel I had to make a complaint because I was treated so brutally.
  16. Hi Dave, I'm glad you are recovering so well. 8 months now for me and am not sure I am where u r but hopefully one day. Hi Bev, I know what you mean. I feel like I go through phases where improvement stops then i see a small change. I felt that a few wks ago. Its like a rollercoaster. I have times when I am feeling better but I do suffer quite badly with head pain and fatigue. It is such a change from how life used to be but my favourite line these days 'it is what it is'. I still think accepting what's happened and coping with anxiety is still one of the hardest parts. We must have had ours quite close together I was in Queens Romford, how about you?
  17. Louise

    Guilt

    Welcome to the site so glad that you found us.. The guilt thing is horrible but know that it wasn't your fault and there was nothing you could have done, don't bottle it up speak with the family how you feel. This all takes time and you've been blessed with that sending my warmest wishes... All the other replies are great as ever so making this short...
  18. I just wanted to add that your question as to why is not unusual. I meant to say that also and it’s certainly ok to ask so not silly and no forgiveness needed. We have all questioned as to why but Try to also take comfort in your survival of such an event and just be gentle with yourself in these early days of healing
  19. Swishy

    Guilt

    Hi Zoegrove, Welcome to BTG...So sorry to hear about your terrible experience. You sound as if you are making a great progress, our bodies are amazing. I too experienced tremendous guilt after my SAH and Vasospasm. I kept telling my husband "I'm sorry" I remember him telling me to stop it wasn't my fault. This continued for maybe several months and then I began to get a better sense of the whole thing. I work in the medical field so I am always on the helper side of the fence, but there I was being the one who needed help. It is so difficult to accept it sometimes (sadly perhaps when we need it the most)...I did get there ... The whole experience is a traumatic not just for you and me but for all those who love us. It takes time, your experience is still so new. Give yourself the gift of time, it made such a difference for me, I wouldn't have believed it. I will 2 years out in May, I am so much better with all these feelings. Best wishes for you and your family as you move forward and remember you are a survivor...it is a big deal Sincerely, Jean
  20. subzero

    Guilt

    Hello, and also a warm welcome to BTG. So glad you found the site so quickly. You will find great support in the days ahead as you discover that there are members who have been challenged by the hand SAH has dealt them …. and they have related in their posts about how they have tried to move on with their lives. With only 26 days since your bleed, it is so early in your recovery …. and while you say you have recovered ….. few survivors make a complete recovery. With this in mind, early advice is invariably to rest well in the early weeks and months, and don`t rush to return to work and household chores too soon. At present you feel that your feeling of guilt is your only concern, however fatigue, headaches and emotional upsets are often apparent in these early days. You are right to feel upset about what your family have witnessed. Being told you may not survive was so difficult for them to cope with at the time. They will have felt so helpless. And now you have survived … they too have emotions that are `all over the place`. For you …. as Macca mentioned... SAH can damage the emotional area of the brain, and control of emotions might not be quite as it was before. For many, time is a great healer. Reading the various threads on this site will help give you a wider understanding of SAH recovery, and your partner and family would also benefit. Being positive will be a great help, and talk regularly with your family and friends about how you are feeling. Don`t hesitate to make contact with your consultant. I too wish you well as you navigate your life post SAH. Please continue to share your progress. Subs
  21. Winb143

    Guilt

    I felt guilty as my family had been wonderful and saw me through not only SAH but then Ventriculitus followed by Sepsis and hydrocephalus. I was out a long while and once I had shunt fitted I awoke to know what happened to me. Dogs went potty hubby was so good and Daughter was marvellous xxx I felt for them and felt guilty for what they had been through. Once my Daughter held my arm and said" welcome back Mum" we both shed a tear or 2 dozen . I felt guilty but the stronger I got the more I was told get up as I couldn't walk but I am at the stage were I could do more. But I play on it lol You will get there and you will get stronger but it takes a time so pace yourself and be patient and thank goodness you made it to tell others your story. I sing badly but it helps me but not my family xxxx Welcome and good luck this is an amazing site it helped me no end xxxx To talk about how you feel and others can say how they were etc etc. xxxxxx
  22. Macca

    Guilt

    Hi, welcome to BTG! I sense that you are a person who is very independent and who likes to help everyone else, but doesn't like to accept help when the boot is on the other foot. Welcome to the club. There are many of us on here in the same boat. Good advice from Casey. Have a think about that! The emotions you are feeling are quite common in the aftermath of SAH, so don't beat yourself up about that. Emotional turmoil of one kind or another often crops up. In the meantime, just consider what has happened to you. Time for you to think out of the box for a minute. This change has been thrust upon you in an instant. You had no time to prepare, no time to ask for help - it just happened and there you are, plonked in no mans land, up the creek without a paddle. Now what you see is people around you offering to help, whereas previously, in what seems like only moments ago, you were one of that group. You've been tossed out of the boat by a freak wave and these others are now trying to help you to get back in the boat! Accept their help. If you were tossed out of a real boat, you would accept their help without a second thought to get back in - so what is different? I know it is difficult to accept at the moment, but as time goes on and you accept what has happened, you will reflect more and understand what I am trying to convey to you. We've been where you are and we've lived it and came out the other side. You will too. There is absolutely no reason for you to feel guilty - although I know the feeling - but in life everyone needs a helping hand from time to time. You can't get through life in splendid isolation. Humans are social animals - we interact with each other, it's what we do - it's just that now it is your time to take, instead of giving - it's just that you weren't ready for it that's all. You were just unlucky in that it happened to you - but lucky that you came through it relatively unscathed. Your lottery ticket just came up! Grab that second chance with both hands and help your daughter grow into the woman you always wanted her to be - You can still do it - go for it. Watch her achieve, watch her get married and have children of her own - it's all there in front of you and you will be there to see it! No guilt - you still have a massive role to play in life - learn from your experience and use it to full advantage in yours and your daughter's future. So accept help with good grace, and with the love that it is being offered with. They are doing for you what they know you would do for them in a heartbeat. Think positively and make the most of your opportunities and that is the best thanks, and probably the only thanks, that anyone will want from you. Good luck and best wishes, Macca
  23. CaseyR

    Guilt

    Zoegrove, bless your heart. You can be sure we on here understand. You should seek some counceling. It really does help! If you had pain or a physical deficit you would seek help for it. Emotional pain is no less real and bothersome. Go for it!
  24. On the 23rd December I had a SAH. I had no warning and I don’t remember anything. My family were told I might not survive and if I did I would be severely affected by it. I did survive and I’m ok except for one thing, I feel a huge amount of guilt, and I don’t know why. I feel guilt for my 12 year old daughter seeing me in a coma and my dad and my partner who saved my life as he did cpr on me until paramedics took over. I hurt for them and I just can reason with it.
  25. I suffer from being a lover of food lol so I am opposite but still had one ..guess theses nasty things do not recognise my love of food or your bulimia. They take no prisoners they attack our head and Grrrr lol I was told "Ahh you drink, ahh you smoke and ahh you are overweight" I tried to blame my hubby so I was told lol now I just blame my SAH for everything lol ... My reply to them he drinks all the wine and they were not impressed !! Today I do not drink or smoke and the phrase horse and bolt stable door always comes to mind. Good luck Jennifer xx Keep looking forward xxxxx Welcome to Behind the gray
  26. I remember having conversation with my mum suggesting whether my aneurysm could have been due to falling out of a high slide when I was 4 ...we just will never know is the answer and I think unless you had a clear underlying condition known to raise the risk of sah then everything else is just coincidental personal history leading to that point when a weakness in a wall showed itself.
  27. CaseyR

    1year post sah

    Stephen, Strange sensations seem pretty par for the course. I would certainly mention your symptoms to your medical team however. Good luck, and congratulations for the one year of recovery. If you haven’t already, a daily journal is a great idea. It helps you remember things to mention to your dr. Plus may help you discover triggers that cause bad reactions. You can also guage your progress my looking back over the months.
  28. Stephen d

    1year post sah

    Thank you Sarah. i was also told i could have an anomaly, but after another scan, they couldn't find anything. so they told me, not to worry. If the strange feelings keep happening, i will contact my gp to make sure. Hope everything goes well with your scan and thanks again.
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