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

Hello!

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. Hey Jenni, you didn't make it any worse and some people have a post coital migraine head, which is nothing to do with a SAH. There are lots of different accounts on the website of peoples experiences. I wasn't operated on straight away and it wasn't straight forward. I can only say, that you're early days into recovery ... it can take 3 months for the blood to fully dissapate down the spinal cord. Keep your fluids up/hydrated and make sure that you rest up when you need to. I would say that yes, you need to let things settle - re: eyesight. They're looking after you and understand your situation. There's not many of us who've had to stop driving long term ... keep positive and even at 14 years post SAH, I'm still seeing improvement. x
  3. Hi I’m 11 weeks into my recovery and after being unable to focus on anything when I came out of hospital my vision is now back to its normal self but I have developed blind spots. My optician has said let it settle so I asked my doctor for an ophthalmic assessment but i have to wait until January for an appt. it’s really affecting my life. My eyes are trying to adjust but I’m getting loads of eye strain and my brain seems to be seizing up. I can’t drive so my independence has been taken away. I don’t know how to cope with this. I don’t want to get out of bed in the morning as I know I have to deal with it. Anyone else experiencing similar problems? Xx
  4. Hi Karen I just keep thinking if id said they would have taken me more seriously and I would have been treated earlier. I didn’t look like someone with a ruptured aneurysm as I was walking around complaining of a headache. I can’t understand why the brain scan was clear. Most stories I’ve read where someone has colllapsed and been operated on straight away seem to have a better recovery. Sorry I just can’t help thinking I made it worse. Thank you for your kind words. Xxx
  5. Hi Jenni, don't be embarrassed as you'll probably be surprised as to how many people have had a SAH after being intimate. It's any spike in blood pressure....you could have been sitting on the loo and straining, in the gym, gardening ... etc. If you've got an aneurysm lurking and about to rupture, it will do it with any spike in blood pressure....whatever you're doing at the time ... lots of people on here that have had the SAH with different circumstances and post sex is one of them and you're not alone. I've been running this site for many years and we've heard everything, so there's no need to be embarrassed...we're here to help! So, go to the Introduce Yourself forum or the SAH forum if you want help and support with a specific problem. And no, your outcome wouldn't have been any different if you had revealed to the Doc that you were intimate before the SAH ... It's as simple as that.... having a blood pressure spike could have happened whatever you were doing at the time, as the aneurysm was there ... don't feel guilty. We've had the fittest of people on here, who were in the gym, bike riding or the same as you, or on the toilet and many other examples. It honestly does and will get better for you ..... xx
  6. Hello, on the 2nd September my partner and I had just been intimate and I went to the bathroom to remove my makeup when I started with an unbelievable pain in my left eye. This soon spread across the top of my head and down the back. I was violently sick and in pain but thought it was just a bad headache. I tried to sleep and in the morning went to the doctor who told me to go to a&e for a ct scan. I was too embarrassed to mention the intimate part to any of the doctors and I now know this may have helped them diagnose my condition. The scan came back clear and the following day 2 doctors tried to do a lumbar puncture but due to slight curvature of my spine failed. They sent me home to come back next day for an anaesthetist to do the procedure. When it came back with blood in the spinal fluid they said it might be contamination from the day before. I was admitted for a MRI scan the following day. All this time I could feel myself going down hill. I sat all the next day for nothing to happen. It was only when my partner complained they did referral to specialist hospital. I was transferred during the night and had mri the next morning. I was told I had a 5 mm aneurysm that had ruptured and went in to surgery for coiling the next day. It had taken 5 days to diagnose my condition. My recovery has been the hardest 11 weeks of my life I have developed blind spots in my eyes and this having a massive affect on everything I do. I have bad eye strain and my brain just seems to seize up with trying to adjust. I don’t know how to move forward. I have a 6 yr old daughter who needs her mummy. I keep beating myself up over not getting over my embarrassment by telling the doctors more information and wonder if my recovery may have been different. I have an ophthalmic appt in January and my optician has told me to let things settle. But I feel this is it now, no driving & loss of my independence. My partner has been amazing but I feel so sad, lost and scared. Xx
  7. Last week
  8. Hi Janeece I am sorry to hear about your sight. I am sure it will get better with time. I have heard others with that problem and it has taken time to improve. Ask your do to.r or consultant if you are worried. I have blurred vision at times and also have to close my right eye when the pain behind it gets too bad. It's not all the time but it is every day. I am still suffering from extreme fatigue and have to rest and have small naps and if I engage in a meaningful conversation I forget words. My long term memory is ok. I can also forget what I was going to say. I have been very lucky as i look like me but behind the appearance I am not me. I am not sure what you meant when you said you had stitches out. I didn't have any stitches My 3 hr operation to coil the SAH was done via an artery in the groin. I hope you are having a better day and thank you for replying. It's a lonely club we are member of.
  9. Hi Carolyn, you replied to my post and I just wanted you to know that we both went through this ordeal around the same time. I had a coil too. I’m feeling tired allot, and my vision is really bad, and I feel dizzy quite a bit. Do you have any of those kinds of problems? I pray that you are doing well in your recovery , and am here just like all these lovely people in this forum for you anytime.. Take care of yourself please and go at a pace you can handle. Talk to you soon.
  10. Thank you so much Carolyn, you are a doll. I do wish they could have seen it in the hospital. I’m very limited on being able to get around. My eyesight is still really bad. I’m hoping that will get better. My primary care doctor took my stitches out for me on Monday. Very nice of him and gave me something for anxiety. Not being able to see, is what I believe is giving me the anxiety. Everything else is going very well. My husband says my short term memory is off, because I keep asking the same questions over and over again. I keep telling him.. “I never asked those questions.” He said, yes you did. So funny. He told me that he would answer as many times as I asked. Hope you are doing well with your recovery too... Take care of yourself
  11. Hello, I know I'm a bit late to the conversation here but I too have had a child after having two SAH's. My neurosurgeon said I was fine to have her naturally and so that's exactly what I did, Hope all is going well.
  12. Thank you so much daffodil! Your words offer great advice and caring support. All of you are amazing- thank you!! I guess I’ll keep going and see where it takes me. Will keep you posted! For now there’s hope- cherish the desire with anticipation. I love that definition. So true! Thanks, Margaret
  13. Hi Margaret. there are a few doctors who have come through forum and whom I believe are back working. I’ll try and findlink to that thread but also do think that you probably do know where your limits are now and that’s not to say they won’t continue to change, they will , but equally if you feel ready then I personally would say lean in and try but be honest with yourself. Like you i was 39 when I had my SAH and later got a Shunt placed so things are permanently clunky with my Head these days , but that said I wanted to know what was possible, what this reformatted brain could do and where my new limits lie. I do a complex job, lots of analysis , detail and negotiation and work part time half day mon- Friday plus looking after two teens and importantly balancing my rest and my interests. I don’t socialise much these days as the late nights disagree but when I do work full days which often means travel into London too then I struggle the next day still. I am 7.5 yrs out but know I get huge purpose from my work , ( the wage is Important too for our household) and equally my employer get good value from me. Ego wise I would still like to think I could go full time again but my Neuro folk agree it’s a marvel I do what I do now and I think it’s unlikely I ever will. Balance is the most important I think. Work, money , we know that’s pretty essential but equally health and ability to enjoy time outside work is very crucial too. I say dont be boxed in by conformity to the norms, be disruptive and design what works for you, work is changing, sounds like you have a specialised skill so me thinks people may be happy to work around that and find news ways to satisfy that ambition streak ...you may be surprised.
  14. You're welcome Margaret. Even if you need to work, there are still adjustments you can make to improve your work/life balance, ie changing jobs, changing work patterns, reducing hours, delegating etc I wish you well whatever you decide! Macca
  15. Hi Steve Thanks for the reply, it’s good to know I’m not alone in this and I feel your frustration at not knowing the cause. I now have chronic headaches on top of my regular migraines and ice pick headaches. I think mine is partially due to nerve damage to my right eye. Ever since the bleed I’ve have photosensitivity there. Im now on slow release propranolol, so I’m hoping this makes a difference. There is another drug they can try if it doesn’t, but I’m now at the point I think I would worry if I didn’t have a headache, it’s just constant, and although medications make it bearable I’m never pain free. I would love some answers but neurologist seems happy for my gp to deal. If anyone has any hints on coping with this I would love to hear from them. Hopefully we’ll get answers
  16. Thanks Macca and I’m very happy for you. I wish this happened at a later age for me but at 39 and now 44 I am forced to work. I have a kid and college will happen for him in just 9 years from now. Also- I am looking at working another 20 years before I have money to retire. I have been slowly reintegrating and have had time to appreciate the non work aspects of life and I am grateful for that time. I truly appreciate hearing about your story! Thank you so very much! Keep on enjoying that beautiful gift. Margaret
  17. Hi Margaret, I am not and never was a health professional. However I did work in a large Government department. I went back to work on a phased return after 6 months. It was unbelievably hard and involved me looking after up to 20 staff and travelling the length and breadth of the UK. I was utterly sick of the M1 and the M6. I managed to hang on in there for the next four years and then I took early retirement at 58. The vast, vast majority of my colleagues were great. That said I left with my head held high, my dignity in tact and can say it was the best decision I ever made. I paid off my mortgage. Making a few lifestyle changes and not having to pay out for travel and parking, meals and so on meant I hardly noticed the difference in my income and my life now is infinitely better than when I was in work. I still have a number of friends from work with whom I am still in touch and meet up with and some of them are retired now also. I've been gone 5 years now. What I am trying to say is 'there is life after work' and it's great - I wish I had done it earlier. Good luck - whatever you decide, I wish you well. Macca
  18. Thanks to all your comments Sophieskb that's a good idea 're the diary. I do keep a diary but just write good days bad days etc I think your scoring system could be a good indicator. Today a fatigue day so just rested. I do think the anxiety episodes are a bit PTSD. It is alien to my normal me but I guess I have to take a step back and accept and deal with these strange feelings. Thank you all for your support .
  19. Janeece. The advice you have been given is good advice. The doctor could give you an ECG just to check things out. I can vaguely remember when I was in the High dependency unit 8 weeks ago that I had to have a heart scan as there was something not quite right with the ECG readings. I am going to check with the consultant when I see him for my follow up in January what that was about. I have had to see my GP because of discomfort in my upper chest and lump feeling in my throat. My GP is treating me for reflux at the moment but I have to go back in 3 weeks if no better. There could be a few reasons but get it checked out to give you peace of mind. You are coping with enough with the recovery from the SAH. Hope you get a doctors appointment.
  20. Thanks for your response Clare. I work 8 hour shifts at this point. I have done 10-12 hours and do feel tired- who wouldn’t? Yet I typically have days off after so I don’t really know what it would be like consecutively. Most of the time I would be 8 hour days but with call you just never know. I am in a highly specialized concentration so I can’t just do something else within it. I’m 44 years old with lots of ambition. I’m at a crossroad it seems. I can’t tell if my fears are substantiated due to limitations or if I’m just plain scared. Tricky tricky! Thanks again for your response. I greatly appreciate it.
  21. Hi Margaret I work as a health professional for the UK NHS. I moved into this employment after my NASAH 4 years ago, as working in community was too stressful. I have never worked full time hours since my bleed, I think I would find it very hard. I started back doing 34 hours a week and currently do 30 hours a week over 4 days with a day off mid week as a recovery day. I am currently contemplating dropping another day...... In answer to your question does anybody work full time in the health profession after a NASAH - I don't know. I have been told that not many people return to full time work post bleed which I find hard to believe. However, in my experience, and I have made a good recovery, I think it is hard. Long hours may not be your best friend, how many hours at a time have you been doing so far? You would need to factor in regular breaks and a good work schedule which allows recovery. I hope you manage to come to an acceptable plan with your employer, keep us posted! Clare xx
  22. Hi everybody. I have reached out to a couple of you regarding work and recovery from nsah. I am 5 years out and would really like to renter the workforce as a health professional because I love it and feel like it’s either time to try or change it up. I need to work for financial purposes. My job requires call and at times long hours and I’m really frightened in some ways to go back. Yet, I am also really excited about it and hope it’s not too much. I have been doing it part time then per diem since the event. My question is does anybody work full time in the health profession anymore after a nsah? Am I fooling myself or is this possible? Of course, I know it’s per individual but I’d love to hear an inspiring story if there is one- or just the truth! Thank you so very much!
  23. Hi Nikki, I am 9 years out and I get ice pick headaches all the time. I thought I was the only person in the world who had these. I participated in this forum several years ago and didn't find much about these types of headaches, but lately they have been pretty numerous so I thought I'd see if anyone had posted anything. It's good to know (though unfortunate for you and everyone else who has these) that other people are experiencing the same thing. They usually come in short waves, sometimes 3 or 4 in a row. Some days only a few, some days dozens. I've had a few followup MRIs over the 9 years, usually after I have an unusually high number of these headaches, and the MRIs have been clear. The ice pick headaches are in random places, all over my head, though usually pretty deep, and they usually last only a split second, but, they are so painful that I can't help but cry out when they hit. It scares the heck out of the people that know about my condition, particularly when they see me grimace and cry out, and to be honest it scares the heck out of me most of the time, too, even though it's been 9 years. Perhaps its some form of PTSD, but when I have a bad one I am instantly transported back 9 years to being wheeled in a gurney down the hospital corridor in a morphine haze on my way to get yet another brain scan or angiogram or other barrage of tests that I went through over the 10 days I was in the ICU. As with most of us, I suppose we'll never really know what caused the initial spontaneous non-aneurysmal hemorrhage (hence the word spontaneous I suppose). I just wish someone could tell me WHY we still get this ice pick headaches. Just knowing why would go a long way towards keeping me from thinking that I have to figure out how I'm going to get to the hospital every time I get a bad swarm of these headaches. Early on I talked to a few neuro docs and every one had a different thought about the origin of the headaches, and none of the ideas really made much sense. One doc suggested that when the brain is deformed by the added blood in a confined space that it doesn't really heal and return to it's original size and shape (we're talking micro-deformation, but deformation nonetheless). Another doc thought that maybe a major nerve that passes through the area of the bleed was affected by the bleed and the pain is somehow triggered by that nerve damage. Again, just knowing what is causing these ice pick headaches would let me rest easier. I imagine you and everyone else that gets these feels the same way. Steve
  24. Earlier
  25. Hi Lori, My Daughter found this site while I was in hospital when I knew what had happened I was pleased I had got through it and realised what a smashing Family I had. Will take us some time to get better still working on back stopping me from walking. I came on here and people laughed and that in itself helps as we are not alone and any aches and pains I'd come on here and talk my worries over and I left laughing xxxx My Answer is singing and smiling a lot ..I mean sometimes I get the weeps, but I am an old dear and was a younger old dear before my bleed. We are here when you need to give vent ~ I do that a lot so Welcome to BTG and smile xxx or I'll sing and drive you potty ha just kidding xxxx Good luck Win xxxxx
  26. Thank you Skippy and Macca, I do believe I’m going to go to the doctor. It’s worrying me for sure. Take care of yourselves please.
  1. Load more activity
×
×
  • Create New...